Against All Odds

House Rules

2010-08-09T19:11:00.001-07:00

{gigantic sigh, heard round the world, or at least round my living room}

A good local friend, who is also a mom of a child on the autism spectrum AND a speech pathologist, loaned me a book recently. It's "House Rules", by Jodi Picoult. I should have known better, and my hubby even said so later (privately), but I graciously accepted the book and began to read it a few days later. I've read Jodi Picoult before, at least 3 of her other books, and I always am left feeling emotionally drained, even stunned sometimes---see: Handle With Care, about a young girl with a rare condition causing her bones to break at the slightest thing, etc. Talk about an emotional roller coaster.....her parents sue the OB, who also happens to be the mom's best friend. Oh yeah, good times.

And now we have House Rules, recommended to me because the main character has Asperger's Syndrome. Generally, I like seeing portrayals of these kind of characters in books, on TV, etc. because I'm curious to see how accurate they are, how much time the writer has (or has NOT) put into his research in creating the character. Well, Jodi Picoult has put her time in, that's for sure, and maybe that's why the book is so hard for me to read.

The main character, Jacob, is more severely affected by his (imaginary) Asperger's than is Mr. L, for what it's worth. Jacob's family has had to make many more accommodations in their daily lives because of his extreme need for order and routine---see: White Food Day (first of every month), avoidance of all things orange (including no parking next to an orange car, etc). You get the idea. But these aren't the things that get to me when I'm reading, it's the fact that Jacob is arrested and charged with the murder of his social-skills tutor. And the fact that he is communicatively and socially impaired, combined with the fact that the police and judicial system know NOTHING about autism or how to deal with him, scares the *#@# out of me.

Because he's 18, he's legally an adult, meaning that his mother can't be there to advocate for him, isn't allowed to make legal decisions for him, etc. But he is in no way competent to make his own decisions, despite what the police think which is only based on how brilliant he is and the fact that he can quote the Miranda rights verbatim. And it just keeps spiraling from there, horribly bad coincidence after misunderstanding after misinformation after terrible unfairness.....I know you get the idea. But somehow I can't stop reading.

Disclaimer: I am about 2/3 of the way through the book at this point. No I don't know how it ends yet, and please don't tell me. Let me break my own heart on my own time, ok? Surely, this brilliant young man who does remind me a bit of my own first-born cannot have really committed murder. Surely he will be exonerated, and the people involved will all be miraculously educated about autism and live the rest of their lives educating others......right? RIGHT?

time passages

2010-08-04T20:50:00.000-07:00

Early August always brings on the flood of "well, this is the anniversary of the day that I _____________..........", and it all revolves around Mr. L's birth in 2001 and my abrupt, jarring introduction to preeclampsia. Yesterday was the first of many such days to come over the next couple of weeks--the anniversary of the day I went to an outdoor marching band exhibition and was bombarded by veteran Moms telling me to sit down and that I didn't look "well". Gee, just what a preggo lady wants to hear, thanks!

It was my first pregnancy, so how the hell was I supposed to know what it would feel like and what was "normal"? (oh how I hate that word) I kept telling them "I feel fine, really, I'm ok", but would humor them by sitting down in the lovely blue and white striped folding chair because they wouldn't take no for an answer. In 48 hours, I would be in a doctor's office being told that under NO circumstances could I teach school that fall (first day of school was only a day or so away) and that I should now consider myself "on bedrest", effective immediately. 96 hours after that, I was being prepped for a c-section. It all happened so fast, and by now, 9 years later, it's just one big blur in my mind.

Ever since that early August of 2001, I have had preeclampsia permanently stamped on my mind, my heart, and my physical body as well, in the form of 2 c-section scars and lingering high blood pressure. Along the way in this journey that I never chose, I have met so many amazing women who are fellow survivors of preeclampsia, and I am forever grateful for their friendship and the knowledge that I am not alone in what I have suffered. You ladies know who you are, and I consider you all my sisters, no matter how far away you may live. I can admit that my memories are fading a bit with time, and that the emotional pain of the preeclampsia experience is not as sharp or as fresh as it once was, thank goodness. However, it's still there, and here's how I know.....the twinge in my heart whenever I hear news of the healthy, safe delivery of a full-term baby by someone I know. I would never, ever wish my experience on anyone, and I don't begrudge other women their easy, happy pregnancies, their "natural" childbirth or their 1-night hospital stays followed by the joyous homecoming of mother and baby. But you'll cut me some slack when I point out that, no matter how happy I truly am for you, it still hurts, and that's the bottom line.

things that make you go hmmm....

2010-07-30T20:17:00.000-07:00

Just tidbits today, stuff I've thought about in the last few days......

1. Heard the song "We're Not Gonna Take It" by Twisted Sister today (YAY for Sirius Ch. 8), and remembered back to the days in high school when that song first came out and we used to sing it at the top of our lungs:

We're not gonna take it
No, we ain't gonna take it
We're not gonna take it anymore

What, exactly, were we "not gonna take"? We lived in semi-suburbia, ordinary comfortable lives in ordinary comfortable homes. Oh, but we were teenagers, so that automatically means we were oppressed, right? ;) If that was oppressed, I think I'd like to be oppressed again!

2. Why is it that whenever I go to a friend's house for the first time, I come home feeling horrible and inadequate by comparison? Specifically, her house vs. my house, her level of "with-it-ness" vs. mine, her organization and wonderful Mom traits vs. my lack of organization and .....well, you get the idea. This happened today, but it's not the first time, nor will it be the last, I'm sure.

3. And while we're on that topic, am I the only one that believes that most foods and drinks are ok and not too terrible if consumed in moderation? Talk about feeling inadequate.......when you visit that friend and she's serving lunch, and casually drops into the conversation that "we're not ketchup people, but I think I have some you guys can use if you want" or "we're not condiment people either, but there might be some mustard around here.....". I do not ban foods for my kids, for the most part. Soda from time to time? Sure. Pizza? Damn straight! Ketchup AND mustard AND barbecue sauce to dip your chicken nuggets in? Certainly. A bowl full of Oreo cookies? Only if you agree to share some with me.......

4. How many years after a picture is taken does it start to look old or "dated"? How many years will it look ok, and then at what point will you start to think either:

A--Wow, look how young we were!
or
B--Oh my Lord, what WAS I thinking with that hairstyle/shirt/pants/gigantic earrings/Madonna-style white lace headband?

I've been married for just over 14 years (YAY for weddings Class of 1996!) I know that for many years after the wedding, I could look at the pictures and think that everyone looked "normal".....no wacky, dated hairstyles, no cringing at the out-of-style clothes, etc. Now, not so much, especially about the hair, but I don't know when we passed that imaginary line between "I look good" and "WTF?"

Discuss. Yes, you!

Hopeful Parents

2010-07-28T13:55:00.000-07:00

In case you haven't discovered it yet, Hopeful Parents is a great website and community for families of kids with all kinds of special needs, disabilities, etc. You really should check it out, it's an amazing place! Every day there are new blog posts up, written by real-life Hopeful Parents (including yours truly.....I write on the 24th of every month). There is a forum/discussion section, and the organization is becoming a tax-exempt federally recognized group as well.

I'm so excited and honored to be a part of the Hopeful Parents community from its inception, and to be around to see where it goes into the future. If you read this blog, you are probably a Hopeful Parent yourself, so come on over and join us in advocacy, support, and understanding.

I'm in love with....

2010-07-28T10:23:00.000-07:00

...the vacuum cleaner. Or more specifically, the vacuum cleaner attachments. Not quite to the level of fetishism, LOL, but pretty intense nevertheless. I'll try to elaborate, but there are some things you just can't explain....

We have Pergo floors in most of our house. This was my request from about 5 years ago, after seeing them in other houses and how great they looked while being super-easy to keep clean, etc. What I didn't take into account was how obsessive I would become about keeping them clean and keeping "bits" of any kind off of them. It just drives me to distraction to walk barefoot on the floor and feel that I've stepped on anything other than just plain floor. But I also live in a busy household, with 2 boys and an elderly cat.....which means food crumbs, stray cat litter, tidbits of grass/dirt/sand coming in on our shoes, etc. Remember the old Princess and the Pea story? Well, that's me with my feet on these floors--even the tiniest, microscopic speck on the floor makes me insane if I step on it.

So I sweep. A lot. I "swiffer". I steam-mop. And every day, several times a day, I vacuum. Vacuums are for carpet, you say? Only for the unimaginative, I say. I've found that nothing, no method of floor cleaning gives me the satisfaction that vacuuming does, and using the hose attachment is even better. The budding psychologist/therapist in me keeps trying to figure out why I feel this way, and I think I'm on to something.....what do you think?

Life is messy. MY life is very messy most of the time. Cluttered, dirty, far from perfect. Bits of unwanted crud all around, getting in my way, interfering with smooth progress from one place to another. Kind of like my floors.........

But now picture me with the vacuum, super-duper hose attachment firmly in hand, walking around the house just searching for dirt. Searching for crumbs, bits of grass, grains of sand that fell out of the boys' shoes. One minute, the floor is messy and covered with dirt. Next minute, vacuum power comes to the rescue and vanquishes the dirt, making it disappear! And everywhere I go, the same story....the all-powerful vacuum takes away all of the dirt, leaving the floor clean and uncluttered. If only the clutter in life were as easy to control and easy to remove.

who am I these days?

2010-07-27T20:03:00.000-07:00

So since I've been away from blog-land for so long, I feel like this is an opportunity for me to re-focus on what I want this blog to be, the kind of things I want to post about, etc. And since I live such a thrilling, exotic lifestyle (wanna buy the Brooklyn Bridge?), I've got lots of amazing stuff to write about on a daily basis. ;)

Stuff like:

college, Part Deux
autism/Asperger Syndrome
ADHD
Music Therapy
preemies/preeclampsia
couponing (a new obsession...you'd be amazed!)
politics (progressive and proud of it!)
music
sports
Facebook

....and other scintillating, fascinating details of my daily life.

Today, my rant of the moment is about Facebook, which I have an intimate love affair with (and my 663 "friends"). I'm all into the whole "freedom to post and say what you want" part of FB, but occasionally I wish some of the people there would just think for half of a freaking second before they click "comment" and put their random/hurtful/prejudiced/judgmental/mean thoughts into written form. Others have just as much right to express their opinions as I do, but let's remember something, guys: There's a person, a living, breathing human behind each keyboard, and they have feelings. You may or may not really know that person, but she exists. (no, sitting beside her in sophomore World History in 1987 doesn't really count, but don't tell that to the 663).

I posted a few days ago on the wall of little E's new teacher for this school year. I heart her already, she is going to be a great fit for him this year, so saith the Mommy Instinct. Before last year ended, she'd responded positively to my request to have a brief meeting with her about Energizer over the summer. Experience has shown me that it is good for all concerned to fill the teachers in about my boys before the new year starts....saves everyone a lot of heartache as well as the need to re-invent the wheel every time. He's on meds, he sees a counselor, he has 2 different private therapists, he has a 504 plan, etc etc etc, and she needs to know all of this.

So, like the innocent, naive dummy that I am, I had the audacity to post on her wall and ask to look at a time for this quick meeting about E. Little did I know that I would be pounced on by people who don't know me or my children, but are "friends" of the teacher and are disturbed by the idea of meeting with a parent during the summer. Oh, and did I mention that one of these commenters is a former principal? Such lovely phrases as:

"...but they are just your careers, not your families, not your lives."

or

"You should NOT meet with parents over the summer! There is plenty of time to do that during the year. The summer needs to be for you and your family.. The only kids you should focus on are your own!!!!!!!!!"

Pardon me? EXCUSE ME? Just who do you think you're talking to? You obviously haven't seen my teaching certificate or my 14 years of experience in the field. You must have missed my wedding to another teacher, with 16 years in the classroom to his credit. I'm pretty sure I taught more students in my first 3 or 4 years than you have EVER taught, Ms. "Administrator". And bless your heart, you must never have had the privilege of being a parent of special needs kids, or knowing the unforgettable thrill of having the school office call you to say that your child choked another student hard enough to leave marks.

So let's just leave it at this. YOU DON'T KNOW ME, OR MY CHILDREN. Until you've held my boys and cried along with them during a meltdown, until you've had to give stimulant meds to your 4 year old, until you've spent 17 weeks at your children's bedsides in the NICU, until you've had to pick up your very big, very heavy son off of the ground in a public place during an Asperger's "moment", you'd better keep your self-righteous opinions to yourself. Step off, as they say, get the hell over yourself and stay out of my business.

I'm back......

2010-07-19T18:39:00.000-07:00

Well, here I am. 329 days since the last blog post, and now I'm back. Why the sabbatical? No real reason, no excuse, other than that old chestnut "life got in the way". The last post was on my 38th birthday, which also happened to be my first day of college classes. This is "College: Part Deux", by the way, 16 years after I got my degree, knew everything there was to know, and set out to conquer the world.

Anyway, I intend to be much more prolific around here in the future, and I'm sorry for just dropping out of sight like that. I'll do my best to give you the VERY abbreviated version of what has happened in the last 329 days. That is, if anyone is still around to read this blog anyway...........

I'm now officially halfway through the Music Therapy program, and I know without a doubt that this was the right decision for me to make for my life and my future. Two more semesters of classes, a 6 month internship, and I'm ready to be certified as an MT. I'll be 40 by then, but hey.........40 is the new 30, isn't that what they say? Or is it 50 is the new 40? Or pink is the new black? I can never keep that stuff straight.

Mr. Literal just finished 3rd grade (!) and Energizer finished Kindergarten. Both had good years, but continue to struggle in various ways. I'll write more about their school year adventures over the next few weeks. Next school year starts in slightly less than a month, and their teachers have been chosen (the ones I asked for!), so I've got high hopes for another good year.

So, again, sorry for being MIA.......or was it AWOL..........? But I'm back, and looking forward to reclaiming my spot in the blogosphere. :)

Top 5 irrational fears about starting back to college

2009-08-23T13:58:00.000-07:00

Classes start today, 11 am. No turning back now, right? Tons and tons of thoughts are flying in and out of my mind this weekend, and every so often is the thought "OMG I AM COMPLETELY CHANGING THE DIRECTION OF MY LIFE; AM I A TOTAL NUTCASE?"

So, with that in mind, here comes the list....in no particular order of irrationality or fear-ishness. (not a word, I know, LOL)

1. I will show up at the first class today with no shoes on. (I'll pause a moment while you collapse on the floor with laughter at my expense) I did not make this up just for your entertainment, I promise. I have this sort of dream before every big/new/stressful life event. I dreamt it in the days before my wedding, before starting College Adventure #1, before my first year of teaching, etc. And the terror associated with this dream is real, no doubt. Imagine it: You arrive for a momentous occasion, first impressions really matter, you're sitting in your desk and all of a sudden OMG I do not have shoes on!!!!!! How did I even get here like this? And even more bizarre.......what does a dream like this symbolize? Any dream interpreters out there?

2. I will be the oldest one in the room(s), professor included. Why in the flipping world that even matters to me is not clear, but it does. I already know that my primary supervising professor is a year younger, and she's got her doctorate in MT already. I got mine in preeclampsia, with a concentration in the autism spectrum and special-needs parenting. No fancy degree certificate on the wall though.....just scotch tape residue, the remains of Mr. L's endless lists that he simply MUST display all over the house.

3. You know that scene in Finding Nemo when the fish are trying to join the "East Australian Current" along with those sea turtles, but it's going SO fast and they just can't get in? Yep, what they said. When I think of all the things that have changed since the pre-internet days of my last time in college, I feel nauseous. Do people even take notes on actual paper any more? Do I need my laptop in class?

4. What the hell do I wear? Yes, this is of great importance. Gotta not look any of the following: too old, too fat, too dorky, too teacher-ish, too much like I'm trying to look young, too out of style, too dressy, too casual.......you get the idea. {sigh} I need a fashion consultant. Any volunteers?

5. There will be too much workload, too much writing/term papers, and I'll end up being MORE busy and more time away from my kids than I had before. I've already had to resign myself to sending them to the after-school care program 4 days per week this semester, based on my class schedule and how late the classes end. Yuck. I was looking forward to picking them up in the cute little carpool loop behind the school. Oh, and nearly $100/week for the afterschool program too........lovely.

Ok, I could go on listing forever, but I limited myself to 5 so that I can manage to not be late for the actual classes on the first day! Gotta go shower, put on the painstakingly chosen clothes, pack the bag with my supplies one more time, and drive headlong into this new phase of my life. Are any of you old enough to remember those old commercials for Nestea.......the Nestea plunge? LMAO at the thought of it, but that's pretty much what I'm doing today. Eyes closed, let go, fall backwards into a swimming pool and trust that it will be ok. I'll come out soaking wet, but hey, it's 90 degrees outside so who cares, right? ;)

Facebook drama

2009-08-22T19:49:00.000-07:00

I love Facebook, truly I do. I've reconnected with so many people from various stages of my life.......high school classmates that I'd forgotten even existed, former students I taught, coworkers, college friends, even former teachers of mine. And therein lies the drama.

I have the absolute highest respect for teachers. They do a mostly thankless job, for little money and even less credit in the eyes of many. I was fortunate to have quite a few incredible teachers in my time, and now that I've walked a few thousand miles in their shoes, I understand even more how wonderful they are! So you can imagine how over-the-moon I was a few weeks ago to have re-discovered my very first band director, thanks to the miracle of Facebook. I was in his classroom more than 25 years ago (gulp!), and I admired and loved him in the sweet way of a 6th grade girl. When we moved during the fall of my 7th grade year, I was devastated and just knew I wouldn't like any new band director I might get. I wanted to stay with Mr. M, it was as simple as that. So after all these years, to find him again on FB........amazing! And he even says he remembers me! :)

Well guess what? Mr. M is raving right-wing lunatic. {sigh} And I do mean raving, ranting, unhinged, conspiracy-theory lunatic. You know, "Obama is the antichrist and is out to get us all" kind of thing, and he's ruined our country in a mere 8 months. Oh, and don't forget that public schools are ALL a freakin' disaster (or "dead", his words) and no one who cares about their child or this country would ever set foot in one. Makes me wonder why he still teaches in one. Things that make you go hmmmm.........

I've UNfriended people on FB for less. Much less. Much MUCH less. I'm pretty much the polar opposite of where he stands in terms of my politics, and I do tend to post politically-oriented links and stuff on my FB page. I happen to proudly send my children to a wonderful public school (shout out to my AIMS peeps!), and am VERY proud to have voted for our President and to support his policies. And because FB is a world of my own design, I have been perfectly content to remove a "friend" or two when I've gotten nauseated one too many times at reading their drivel.

So if this were anyone else posting the "schools are evil and Obama is a disaster" crap, he'd have been long gone. I mean come on, what's one friend when you've got 447, LOL? But the whole teacher-respect thing is so ingrained in me that I can't even call the man by his first name, much less find the nerve to speak up and defend my position when it differs from his, as it does about 99.592760274% of the time. I'm an adult now, damn it, not a 6th grader. Hell, I'm older now than he was when I was in his band. But I can't make myself stand up to him and argue like I really want to, so I end up having to read his crap while biting my tongue until it bleeds. And I just "found" him again, can't stand the thought of the whole UNfriend thing.

So, blogworld friends......what's the answer? I know, I know, there is no good answer. Guess I'm gonna have to put up with it, or grow a backbone and decide to say something back to him one of these fine days when the preposterous rantings push me over the edge. I guess it's that old cliche: You can't go home again, or you can't find a teacher you idolized after 27 years and expect that he hasn't changed, or that you haven't. {sigh X 10000000000....}

it's almost time

2009-08-16T19:43:00.000-07:00

In tonight's late-night ponderings, I'm thinking over the fact that this summer has really big like one big time of preparation.........and that time is almost over.

Preparing for Mr. L to begin 3rd grade, which brings with it so many new things for him (3 teachers instead of 1, singing in the Chorus, being in the gifted program).

Preparing for the Energizer to enter Kindergarten. Hoping and praying that the teacher and classroom will be the right fit for him, that the medicine will last just long enough each day, that somehow we'll manage to avoid the dreaded "he just bit somebody" phone call.

And just as much, I'm preparing to re-enter school myself, 16 years after my first college graduation and with 14 years of teaching under my belt. This kind of preparation is just as much (or more) mental than it is practical. Ok, yeah......I did go buy a pack of highlighters today, and have rediscovered the joys of Sharpie fine point pens. And the $800 box of textbooks in the back of my van certainly cannot be ignored! But mentally, emotionally, I've had to do a bit of adjustment as you can imagine, and it's still ongoing. To be a student again, a learner; to open myself up to so much new information, new ideas and concepts; to be willing and brave enough to try new things at this point in my life (OMG, learning to play the guitar!)

And the other thing I've tried really, really hard to do is to get my home in some kind of respectable shape before the school year craziness starts. I didn't actually realize along the way that this was what I was doing, but now I see it. I've hung new shelving, gotten Mr. L a new chest of drawers, done insanely thorough vacuuming (including attachments!), had a yard sale, taken baby stuff to sell at the consignment store, worked on the flower beds and the kids' sandbox, and just generally tried to organize and declutter. Still have a long way to go, but it's amazingly better than when I started in May. Put it this way: You can actually see some portions of my kitchen counter now. It's dark green by the way; I'd sort of forgotten.

I think it comes down to this: My life is about to explode into its busiest time of the year. K is in marching band hell, so we basically don't see him from August to November 1. That means I'm mom, chauffeur, homework coach, discipline manager, grocery shopper, chef, maid, reader of Corduroy books and backyard beach volleyball star. Oh, and a full time student and music therapist-in-training too, just in case I won't already be busy enough. But, if on top of all of that, I pick up the boys and arrive home in the afternoon to a horribly messy, chaotic house, I will LOSE IT. Some days it might be 4:30 or even 5 pm before we get home, and I refuse to be greeted by a sink overflowing with dishes or floors covered an inch thick in cat hair and grass clippings. So, unconsciously, I've been cleaning, organizing, preparing for this new phase of life. I just had a strange thought.....it's almost like "nesting", isn't it? You know, the thing that I'm told that pregnant women do when they get close to full term and are nearly ready for baby's arrival? Hyper-focused organization, intense preparation, cleaning like a mad woman? Yep, that about covers it.

But you know what? That nesting time is almost over. Tomorrow, I take the boys to Meet the Teacher day, and on Tuesday they start school. I start the following Monday, August 24, which also happens to be my birthday. What a present, huh? Welcome to 38, here's your student ID card! :)

This Lovely Life

2009-08-14T21:20:00.000-07:00

I literally devoured this book......."This Lovely Life" by Vicki Forman.

Ok, well, I didn't actually tear out pages and consume them with a side of french fries. But I read through that book as fast as anything I've read recently, and that's saying something. 2 days, maybe 3 tops. Wanna hear about it? If you had a preemie, you do, trust me.

***warning, spoilers below! If you don't want to know how the book ends.......I guess you'd better go play some games on Facebook, or run to Starbucks, etc while we discuss. :)

This Lovely Life is the story of Forman's twin pregnancy, and delivery at 23 weeks. Her time in the NICU, the early loss of one baby and years of health problems and disabilities for the other. You can imagine that I found lots to relate to in her story.

Her babies (one boy, one girl) each weighed slightly less than my youngest son did at birth. And overall, both of my NICU experiences were "better" than hers were, if you can use such a word. But in Energizer's 11 weeks in the hospital, he suffered through so many of the same things as Forman's son Evan........I was just nodding my head when she spoke of brain bleeds, PDAs, oscillating vents, apnea monitors, the endless variety in the personalities of nurses and doctors, and the constant feeling of fear, dread and anxiety that NICU parents live under.

And out of all of the "yes, I remember, I understand" moments I had while reading this, one of the most poignant was her description of how your child, while in the NICU, never really feels like he's yours. I told K this on the morning after Mr. L was born......."I don't feel like there IS a him" was my response to being asked if I wanted to go up and see him. Forman points out that you, the mother, can do almost nothing for the child, especially at early, critical moments. You can't feed him; he doesn't take feeds yet anyway. You can't hold him, or if you can it's only in conjunction with an artificial schedule and only if a nurse agrees (it's a lot of work for her to take the baby out, after all). You can probably change a diaper, but heaven forbid if you actually throw the thing away without weighing it first. Result: This doesn't feel like your child, it's their child. You're visiting, you're observing, and then you go home or to your hotel and your/their baby goes on about his day and night whether you can be there or not. :(

Forman's book is probably considered controversial by some, and in all honesty it's a little disturbing to me at times too. I can't separate myself from my past, my experiences, so I know that my judgment is skewed, but.......when she tries to insist to the neonatologists that her babies should be DNR, I have a hard time understanding. I don't judge, really I don't, but I know that a DNR would not have been a choice I could have made. But she foresaw a future for her babies that would be filled with DIS............DISabilities, DISorders.........and she didn't know if she and her husband were up to the task. And, they had a preschool-aged daughter at this point, so that was an additional variable to consider.

As the first few days progressed though, they began to realize that a DNR was both impractical and not really what they wanted. After originally telling the NICU docs to discontinue all care (and finding that the docs didn't obey), and learning more about the babies' odds, etc, the DNR request was withdrawn. Forman's daughter lived just a few days, her son lived until age 8 although he continued to suffer health problems, seizures, and the loss of his sight due to ROP.

When I read something from a really good writer, I always run across passages that just "speak to me". Something about that phrase or sentence reaches out and grabs me, makes a connection with me through a deep understanding of where it's coming from, I guess. I've gone back and started to re-read the book, and am marking pages with those powerful phrases on them. Now, I want to share a few of them with you, for the sake of the NICU moms out there and the unfortunate sisterhood in which we find ourselves.

After Forman's baby daughter dies, family members are helping her with funeral arrangements. One day, at her home, Forman allows the phone to ring and does not answer. A family member criticizes, tells her she should answer. Her thought is this: "In my grief and panic, I also resented the fact that Curt still lived in a place where if you were good and honest and right, if you were polite and answered the phone and called people back, if you did all that, everything would turn out okay. Our time in that place had ended." Heartbreaking way of describing how different the world becomes once you lose a child, or are a NICU parent of a child with disabilities.

Soon thereafter, Forman's son takes a turn for the worse and his sats dip drastically. The doctor calls her back to the hospital at night, and she tells the story of what it's like to watch that O2 sats number on the monitor........."this was also the machine that sounded an alarm every time the saturations went below a certain number, usually 85. This was the machine I followed intensely in those first few weeks, as if by counting the numbers, I might also watch Evan survive......I touched my son's inch-long foot and saw the numbers go down even farther......."

Oh how I remember this. I would look at that O2 number and "will" it to go up, or to stay at a certain level and not dip below. I've never concentrated on anything so hard in my life, just focused on that screen and that number as if by the force of my thoughts I could make the number go where I wanted. And all that you want to do, when your child is in distress, is to help in some way, ANY way. You can't pick him up, you can't rock him and console him and make it all better like Moms should do. The worst thing of all is when you do the little you can, like maybe put your hand on the baby's back, head, leg, etc, and the result is that the number goes DOWN instead of up. The guilt of that feeling, knowing that I'd caused a desat due to overstimulation or whatever, will stay with me forever. :(

Part of the book consists of Forman's journal entries that she wrote during those NICU days, and it's a window into exactly what she thought and felt at that time. The August 30 entry goes like this:

"I do fine until I compare Evan to the others, the babies that arrive and depart, those not on a ventilator or oxygen, the nearly full-term babies. Monsters, I call them. Monster babies. My walk to the neonatal unit takes me past the nursery, where a fresh crop of newborns appears daily. Even harder is my glimpse down Labor and Delivery. Mothers-to-be stand waiting for their turn at birth. I remember seeing a pregnant woman the day after I gave birth to the twins and feeling so confused: Why me, why not her? How long will it take for that confusion to go away?

Thirty-two week twins arrived in the nursery the other day--I heard the nurses discussing the mother's labor, how the doctor had planned to deliver them soon. Thirty-two weeks? A whole 8 weeks longer than I was able to keep Evan and Ellie.....To accept all this, everything else needs to fall away: the pregnant women, the full-term babies, the preemies older than mine. In any comparison, I come up short, as does my son. It does him (and me) no good to dwell on this, to resent being so much at the bottom rung, to wish another super-preemie would show up so that I could feel better. Nothing I can do will make Evan bigger and better, able to hold his own against the monster babies. We're alone in this."

Aaah, yes. The comfort of recognition, of understanding, of saying "been there, done that." And no, my sons weren't born as early as Evan, or quite as small, and our "outcome" in terms of health and development was certainly better, luckier, however you want to put it. But nonetheless, everything else has not "fallen away" for me yet. Reading this book helps, because Forman comes to an amazing acceptance of her situation and of Evan's reality. And I do mean amazing. So many people have said to me over the years "I don't know how you do it, I couldn't be so strong" etc. But I feel like I should say those same things to Vicki Forman. I've never met her, probably never will, but I do want to thank her for sharing this story and helping us all to know that we are NOT alone in this journey of preemie parenting.

**Excerpts taken from "This Lovely Life" by Vicki Forman, copyright 2009 by Mariner Books.

miracle baby, year 8

2009-08-09T16:31:00.000-07:00

Not quite a wordless Wednesday here, but today's post is going to consist mostly of pictures........a trip through time, the evolution of my oldest son. His growth into quite a smart, handsome and talented young man, despite his preemie challenges and the autism-spectrum struggles he still faces.

Happy Birthday Mr. Literal! I could never have imagined, on August 10, 2001, the amazing, scary and uncharted roads we'd travel with you. I sat at your bedside in the hospital on 9/11, have driven the wheels off of my van in taking you to therapy appointments and doctor's visits, and proudly watched you graduate from preschool and go on to be selected for the Chorus and the gifted program at your school. Being your mother has made ME so much of a better person than I ever was before, and I'm constantly learning from the many things you have to teach me. I love you more than I can put into words, and I am so incredibly proud to be your mother.

autism angels

2009-08-04T19:39:00.000-07:00

Have you heard that term before? Not sure where I ran across it first-- probably in an online forum--but I can't get the phrase out of my head today. The best way I can describe an "autism angel" is that it's someone who makes a positive difference in the life of a child on the autism spectrum. Even more so, it's someone who isn't looking for accolades or glory, just doing their job, doing what they consider ordinary, but it's oh-so-EXTRAordinary to us, the families of those ASD kids.

When I stop and look, I can see these amazing angels all around me, and I'm humbled by how fortunate we are. Like the sweet concession stand guy at the minor league baseball game last Sunday night.....or should I say, the NONgame. It rained, and rained, and rained, and we stood there under an awning for an hour hoping it would stop. Dreading the moment we knew was coming, when we'd have to tell Mr. L that the game was called off. And it was, and we did, and he did.........meltdown, that is. Crying, sobbing, almost wailing. He'd asked to go to this game for his upcoming birthday, we splurged for seats right behind home plate, and now there's no game. The concession stand guy motioned K over, and gave him a bag of cotton candy for Mr. L, to try and help us I guess. I can't say that the meltdown was completely stopped in its tracks, but the cotton candy was a definite distraction, and that's almost always good. Bless you, nameless concession stand vendor!

Or how about Mr. L's 2nd grade teacher last year? The sweet young lady who freely admitted that she had to look up what Asperger's Syndrome was after I told her about Mr. L. Out of all of her great qualities, the one thing I can say that was best is that she "gets him", if you know what I mean. She's patient, listens to him even when he takes forEVER to get to the point of a story, and has learned just how to handle him with the kid gloves that are often required if you want to avoid meltdowns. And best of all? After telling me in the year-end IEP meeting that she'd think through the 3rd grade teachers and decide on one to recommend to us, she did just that. Went and spoke to that teacher privately, gave her background info and suggestions, and recommended to the school that Mr. L be placed in that class. :)

That new 3rd grade teacher even earned a spot on my autism angel list! Today, we got a postcard in the mail from her, addressed to Mr. L. It welcomed him to her class, assures him they'll have a "super year" and she is so excited to start, etc. He's been apprehensive, and I've tried and tried to tell him to give 3rd grade a chance, see what it's like before you make up your mind that it's hard, teachers are mean, etc. But after reading the postcard, he said something like "now, maybe I will begin to believe her, that it WILL be a super year". :) 4 sentences on a postcard accomplished more than I have all summer!

I could keep on listing, but I'm going to sum it all up by telling you about one especially priceless autism angel---Mr. L's baseball coach from this season. He's a pretty young guy, single, drives a cool sports car, you get the idea. K and I decided from the start not to "come out" to him about Mr. L, just to go along and see how things progressed. If he needed to know, we'd tell. As it turned out, we didn't tell until after the season ended.

But Mr. L demonstrated his fondness for meltdowns early on in the season, and Coach T quickly realized how close to the edge Mr. L stays.......one strikeout, one dropped ball, and you could be witnessing an unstoppable screaming, hitting, wailing explosion. He took extra care to be nothing but positive and encouraging to Mr. L, even letting Mr. L throw the ball at him after Mr. L was hit by one of the pitches. That broke the spell of the meltdown somehow, and made him laugh, and then everything was ok again.

During the season, in casual conversation, he learned that Mr. L loves Lakers basketball. Coach T had seen the Lakers in person a few years ago, and so he brought Mr. L some of his up-close pictures of Kobe Bryant. And now, that the season is over........well, this week I was told about yet another angelic act from the coach, and I just about started crying. Coach T plays adult softball, and as it turns out, his team plays against the team of Mr. L's former 2nd grade teacher (see above)! So she emailed us, told us she'd seen him, and that he told her the story of the playoff game that ended Mr. L's season. He was the last batter, last out, of the entire freaking season for his team. :( Coach T told the teacher that he was actually praying as he pitched that last ball to Mr. L. That he'd never wanted someone to hit the ball and get on base so badly in his life. I know that's how I felt, but to know that he did too.......

Coach T, your halo is on its way. Not a coincidence, me thinks, that your team was called the Angels. And for you, the concession stand guy, the teachers, the lady at the baseball clinic that gave us a T-shirt during the collapsing-on-the-ground meltdown, and all the rest of our autism angels.......you have my unending thanks and gratitude. Your real reward is in Heaven.

Ok, NOW I've got something

2009-07-30T10:12:00.000-07:00

....and it's about health care. Those 2 words are ALL over the news, the internet, and every other conceivable place these days, as President Obama and the Congress struggle over "reform" of the US health care system. So in my typical nerd fashion, I've been thinking over this topic, and there are lot of things I don't understand. I'm gonna throw some of them out here, and if you have any health care background or actual knowledge of the topic (as opposed to my ramblings, LOL), please chime in and educate me. :)

****Disclaimer****

I am a teacher by trade, and a mom. Not a nurse, doctor, insurance agent, accountant, or anything else that might give me actual understanding of the following topic. The ideas to be stated here are mine and not the intellectual property of anyone who understands how the system truly works!

Since becoming an adult, I've had exactly ONE kind of health insurance--the kind offered to employees of my state. As a teacher, it was just a given that I'd enroll in this insurance when hired, and I've kept it ever since. When I stopped being a state employee (at Mr. L's birth), K just took us onto his state-employee policy, and now he covers all 4 of us. So I'll freely admit to not being an expert on the various types of policies, coverage, or options.

Our insurance is pretty good, I suppose, as these things go. Even with the catastrophic health situations that have occurred for us in the last 8 years, we've not had to declare bankruptcy or sell any vital organs to pay anything that insurance didn't cover, etc. And because the boys were born in a state hospital, and this is the state insurance..........they scratch each other's backs, I suppose, and charge lower rates to each other than they would ordinarily. Energizer is the one in our family for whom the insurance has paid the most over the course of his life.....his total is about $175,000 right now, lifetime. And that covers a traumatic birth at 27 weeks, and 11 weeks of hospitalization. Mr. L's is about $100,000, mine's about $40,000. K hasn't used it nearly as much, since he's exempt from the whole pregnancy/childbirth/life-threatening illness thing.

But as I strain my brain to try and understand the ongoing debate over reforming the system, I've concluded that I must not really grasp the way things work, and why they work that way. We pay thousands of dollars per year in premiums for this insurance, whether we use the coverage or not. If we went into a typical doctor's office, clinic, etc, the first question we'd be asked is "do you have insurance?" If we said no, we'd likely be denied care. We could go to a free clinic (some areas have them), or the hospital emergency room, and we'd be treated no matter what, right? Am I pretty close so far?

Further, I believe it's true that insurance companies do not pay the doctors/hospitals the same cost for treatment that is actually billed, or what I would pay if I did it on my own. Say I needed to have a suspicious "spot" removed at the dermatologist, as I did back in the spring. I have the procedure done, the doctor bills me AND the insurance company. They'll state that the procedure cost $189 dollars, let's say, but that the "estimated insurance contribution" is $77. And I owe the rest. Or is it just 20% of the rest? Or is there a copay, then 20%? So somewhere along the line, someone's determined that what I had done is worth $189 and they charge that, but someone ELSE (likely with no medical degree) decides it's really only worth $77, and that's all they'll pay. But if I have already paid my "out of pocket maximum" for the year, then the insurance will STILL only pay $77........and the dermatologist just takes that and considers the account paid. Less than half of what was charged, but that's ok somehow. But if, by some strange chance, I did not have insurance YET was actually treated by this doctor, you can bet your sweet %&*#$ that I'd be paying the full $189, or becoming intimately acquainted with collection agencies.

How did we get to this point? It wasn't always like this, you know. Think back to old TV shows or movies you've watched about the Wild West or Little House on the Prairie. Back then, if you were sick or hurt, you got the doctor to come and he did what he could for you, which probably wasn't much that actually helped. You may not have had money to pay the doctor, but there was no such thing as insurance. So what would you do? You might give the doctor a chicken, or a bushel of apples, something you knitted or something you baked. How the hell did the system evolve from that to this?

The only thing I can come up with is this: As technology has evolved, and medical knowledge has improved, costs increased. In Laura Ingalls' day, it didn't matter if you couldn't afford intricate surgeries or expensive therapies because those things didn't even exist! So as costs increased, somebody thought up the idea of issuing "health insurance" to help cover the costs. People already had fire insurance, even back to the 1700s, so the idea was already out there. A few people got this new-fangled insurance, most didn't. Then more chose to get it, then more, and costs continued to go up. And as doctors raised their prices, charging more for the same service (whether warranted or not), the suits at the insurance companies did NOT raise the amount they'd pay for that same service. But the doctors took it anyway, figuring they'd still make out ok with that lesser amount AND that the people who weren't insured would be paying the higher rate anyway.

The premiums for insurance kept going up as well, even though the amounts they'd pay for your care stayed flat. Premiums reached a point that many people couldn't even fully pay for them, so employers began to "subsidize" the coverage for their workers. Then that got to be too expensive for the companies, especially small ones, so some began to drop their workers' coverage or require workers to pay 100% of premiums. Yet somehow it's reached a point that everyone is expected to....nay, required to have insurance. How did this happen? Costs just keep going up and up and up, so doctors figure that NO ONE could pay the full amount on their own...therefore, insurance is a must if they ever plan to get paid.

Here are some radical thoughts I've had: (bear with me, they might seem insane)

How much more money to spend on my family's health care would I have if we didn't pay for insurance premiums every month? Couldn't I use that $4,000-$5,000 per year to pay for routine care, and even a good bit of care beyond just checkups? Could the whole insurance thing just be scrapped altogether, or at least made much more optional than it now appears to be?

If doctors are ok with accepting insurance payments that are FAR below the billed amount that they charge for a service, couldn't they just charge that lesser amount to start with? If they can cover their costs with the $77 for my dermatology visit, why are they charging nearly 3 times that? When people complain so much about the "high cost of health care" and the fact that many do not seek the care they need because of cost, it has to make you wonder WHY the costs are so high? If the $77 rate is good enough for Blue Cross to pay, it should be good enough for me to pay too.

Well, I haven't created world peace or solved the pressing problems of our time. All that I've done is show how little I know about the topic of our health care system and its need for reform. But it does need reform, that's clear. Preventative and routine care is important, and everyone should be able to receive that, the way I see it. Even without insurance. If costs were more reasonable, it would put this kind of care within reach of a lot more people. I just wish, though, that the people "in the know" who are actually going to create, debate, and vote on any reform plans would come to this daunting task with an open mind, open heart, and caring spirit. A life is not worth less or less in need of saving just because that person is poor.....now, what can we do to make sure appropriate care is available to all, not just some?

And the Rush Limbaugh/Glenn Beck/Bill O'Reillys of the world......SHUT UP! Quit spreading your crap about things that the health care proposals in Washington do NOT include! The bill does not require elderly people to make a plan with a government nurse about when and how they want to die. Please. :( Nor does it plan to "ration" care for anyone, or pay for care for illegal immigrants, or for abortions. So just stop the scare tactics, and try to actually use your brain and THINK about the topic at hand rather than spouting off ridiculous claims that just polarize the country even further.

So how was that? Too much of a heavy-duty topic for a Friday night? ;)

I've got nothing

2009-07-29T20:52:00.000-07:00

Nothing witty, nothing funny, nothing exciting or profound to share. Been hoping I'd come up with something, and have been postponing doing a new blog entry so that I could wait until inspiration hit, but it hasn't. ;) I guess I'll just ramble, ponder and write in a stream-of-consciousness style. It's midnight as I write this, so it should be really interesting, LOL!

Summer's at an end around here--and no, I don't mean summer as measured by the heat index. That's still roaring along in the 90s every day. What I mean is that the most dreaded 2 words of the entire school year for band directors have arrived..........BAND CAMP. I think the whole experience should qualify under "cruel and unusual punishment", and I've been involved in it for plenty of years, so you know I can say that. K is there every day now, 8 am-5:30 pm. Next week, 8-8. I'm going over in the afternoons to run a sectional and remind myself that I was once a trumpet player and once a teacher as well. We're having to ship the kids off to a babysitter for 2 hours every day, but it looks as if they're having fun and at least it gives them a change of scenery and me a little Mom break too.

Found out a few days ago that one of Mr. L's teachers for this year has changed grade levels, so he's getting someone new to the school. I hate the unknown (as it relates to Mr. L) and am really really REALLY hoping this new teacher is a good one. He'll actually have 3 teachers this year, which means 3 for me to keep up with, 3 to educate in the ways of Asperger's and Mr. L in particular, 3 personalities, 3 styles of teaching, etc. {sigh} Seems like all I'm hearing these days is "3rd grade is SUCH a step up from 2nd, so different, so much harder". Great, I can't wait. Academically, I know without a doubt that he can handle it. Emotionally/socially/organizationally? Ehhh.....not so much, I'm afraid. In a lot of ways, he's still so immature, NONworldly, etc. And that's good to some extent, I guess, but if we want him to have any hope socially we've got to start promoting age-appropriate language and actions. WTF am I talking about? Well how about this........most 8 year olds aren't going to call it a "boo boo" when you scrape your knee, cut your finger, etc.

I just ordered what looks to be a great new book from Amazon the other day, The Hidden Curriculum. Can't wait to read it, memorize it, plaster its rules to my forehead or tattoo them on my arms or something. I posted a week ago on Hopeful Parents and went on and on about needing to create lists for Mr. L so that he can know what is and is NOT ok to say to various kinds of people. Someone suggested this book in her comment to my post, and I'm very grateful. Looks like it was actually written just for us! :) I'll review the book once I've devoured it. Give me a day or so, ok? :)

Tuesday Tidbits

2009-07-21T21:11:00.001-07:00

I'm just full of these cute names for my blog posts, huh? ;)

~ Well, it's the last full week of life as we know it, LOL.......meaning, the last week before K starts the dreaded BAND CAMP and we essentially don't see him for the next 3 months. Every year that goes by makes me hate marching season more and more. When I get done with my own schooling, and am actually earning a salary again for a change, I swear we will make it happen for K to get out of doing marching stuff ever again. He can "refuse" that part of his contract; it means less money, fewer contracted days, but it will be well worth it. No more Friday nights wasted at meaningless football games, no more 6 am-11 pm Saturday contest trips, no more 3 or 4 nights a week at practice and getting home just at bedtime. :(

~ Hoping to have a yard sale this weekend, something we've needed to do for about 5 years, LOL. There are things that we've had in our garage, unpacked/unused, ever since moving to this house. There are furniture items we don't use anymore, baby stuff and clothes, and countless other things that make our garage look like a tornado hit it! Pray for no rain!

~ so fortunate that this area has so many water parks, because the kids love them and are really becoming good swimmers, especially Mr. L. We went to Splash Zone today and had a ball! Mr. L is swimming underwater like a champ; I'm so proud of him! A little daredevil-ish too....he took K with him on the BIG water slide over and over and over, while Energizer and I hung out in the regular pool area.

And tonight, at bedtime, he gave me one of those rare peeks into what he's thinking, how his mind works, etc. He was telling me that something had happened at the start of one of their slides down today.....it's a two-person "tube", and he was in front. Thought K was seated and ready too, but he wasn't. So Mr. L pushed off and started to slide, and says K had to really jump to get in before the float was gone! Then, a few minutes later, he was almost in tears, saying "I just can't stop thinking about Dad and how far he had to jump to get on the slide with me, and how much he could have gotten hurt if he had missed getting on". He really did start to cry, then insisted he had to get up and go to the bathroom to "wipe away my tears". He has got to be the most sensitive kid, with the biggest heart, of anyone I've ever seen. :) :)

~ Energizer fell asleep in my arms as we sat in the recliner tonight. I reminded him, as his eyes drooped, of how he used to do that every night when he was a baby. I'd give him a bottle, rock him, and then take him to his room after he was asleep (and after I'd gotten my fix of snuggle time with him). No, not the textbook bedtime routine, and probably frowned on by most people, but I wouldn't trade those times for the world. He was soooo wiped out by today's "water park adventures" (his words), so he just snuggled up in my lap with a throw blanket and some stuffed animals and let me rock him. The last thing he said was "I love you", followed by a sweet, sloppy kiss. I asked him earlier today if he'd always let me snuggle with him, even when he got older and bigger.....he said, "yes, sometimes I will". Please Lord, let there be some of those times! I can't bear the thought of not having those special moments. :)

"if I could turn back time...."

2009-07-15T19:17:00.000-07:00

....is a line from a cheesy old Cher song, one which you'll now have stuck in your head for the next day or so. You're welcome. ;)

But if I could somehow do what Cher speaks of, I'd go back to the Fall of 2003, and speak to my "newly pregnant for the second time" self. And if I could resist the urge to wring my own neck out of frustration, I'd want to talk to myself in some very forceful language. VERY forceful. What would I say? Something like:

"Don't fall for that stuff! You know, the only-in-a-first-pregnancy crap! Do your research, don't be complacent. Get second opinions, third opinions, 7,964th opinions. Assume the worst, and prepare for it. Drive your butt down to the medical university on the day you get the positive pregnancy test.....and tell them you're not leaving until they hook you up with a peri or maternal/fetal medicine doc."

Or, better yet, go back in time even further, maybe 2002 or so, and say:

"Get the underlying disorders tests run! You don't know what the hell that means? Look it up, talk to people, learn everything you can. There ARE things that can be done for some women to keep it from happening again, so don't let them tell you otherwise. Be strong, insist on knowing and doing everything humanly possible to make the next pregnancy healthy."

So why am I obsessing about this now? Well, truth be told, it's not just now. It's pretty much been a constant (albeit in the background sometimes) ever since my pregnancy with Energizer. More specifically, since his birth, and since I became a part of the online community of preeclampsia survivors. I've learned so much about the disease itself from my dear cyber-friends, and learned so much about what I could have done, should have done if I'd only known.....and things might have been so very different.

I'm so angry at myself when I look back. I remember telling people early on in the pregnancy "oh, well it usually only happens in first pregnancies, and they're gonna watch me closely" etc. {{{sigh}}} Lot of freakin good that did, huh? I was so blissfully ignorant, so naive, so willing to just accept whatever I was told, and I can't believe I was so stupid. :(

I'm not going to try again, I'm really not. Really. I mean it. Cross my heart and hope to die.....ooops, bad choice of words, considering that another pregnancy might actually cause that phrase to become all-too-true. But among the PE survivor friends I have, I'm one of the "old ladies", and there are still plenty of them who are young enough to try again AND equipped with the knowledge and resources that I didn't have in either of my pregnancies. So there's a mini-baby-boom going on right now in my online community, which is wonderful and exciting, of course. But....

****embarrassing, selfish and ridiculous content follows*******

I can't help feeling inadequate, like a failure all over again, whenever one of those ladies makes it through a full-term healthy pregnancy after PE. Some of them have no trouble at all and the pregnancy is basically smooth and easy. Others, knowing what they do now about their health condition, etc, work very hard to enable a long, healthy pregnancy. They take supplements, injections, spend long weeks on bedrest, etc, and they manage to reach that elusive goal that I never did--full term delivery, no NICU, healthy baby and Mom.

Pathetic, huh? No one has ever accused me of doing anything wrong in my pregnancies, nor would they. The good health and success of my friends' pregnancies does not somehow reflect badly on me or make anyone think less of me. I'm just doing it to myself, it's my problem, I know that. Truth is, the emotional wound of my experiences is still very raw, and seeing my friends "beat PE" brings out the hurt in me again even while I celebrate their healthy babies. There's a thin layer of healing skin over the wound, so that when you look at it from the outside you might not even know what lies underneath.

What's underneath is a hole, deep in the emotional storehouse of experiences that bind women together as mothers. When a woman is pregnant, talk among the other women naturally turns to their labor/delivery stories. Nope, I got nothing. Women proudly photograph their blossoming bellies and share with everyone they know that visible, tangible evidence of the new life growing inside them. The pics get attached to emails, posted on websites, plastered all over Facebook, and framed on the wall for posterity. But you've got to have a big belly in order to photograph it.....so again, I got nothing.

And nothing I can do now, or could ever do, will change any of that, or fill the gaping hole with those missing memories and experiences that I never enjoyed. People that I dearly love and have known for years in cyberspace may someday be blessed with the chance to have those experiences, and I wish them only the best. Bravo to them for being their own best advocates, doing the research, getting the tests done and conquering the horrible scourge of preeclampsia. But allow me the indulgence of wishing, wondering, "if I could turn back time".....

bumming, not sure why

2009-07-13T20:13:00.000-07:00

It's not Friday, but I feel like I need another Friday Fragments post........just random tidbits of crap that are going on in my life that I want to write about. Nothing profound and life-changing today, I'm afraid. (as if it ever is, LOL!) Maybe we could call it "Monday Morsels". ;)

**The last two nights I have had dreams that I decided to return to my previous (and truly soul-crushing) job, rather than go back to college for Music Therapy as I'm actually doing. WTF? I don't usually put much stock into the interpretation of dreams, but I can't figure out for the life of me why I'm dreaming this stuff.

**Had a party at the house on Saturday night, and am still mildly pissed off about the sparse attendance. Mostly upset at the local friends who never really responded to the invitation other than a "not sure, we'll let you know" etc. I'm sorry.......I thought we were all adults here, and understood what manners were. Don't give me the "I'm so busy, the kids, etc" excuse. I've got 2 kids too, and I'll bet you the minimum salary for a major league baseball player ($400 K in case you wondered) that raising MY little guys is just a tad tougher than the healthy, brilliant and oh-so-NT kids you were blessed with. But I am also sure that when you invite us to something, we're there. Grrrrr......

**Took Mr. L to social skills group today, and it occurred in the therapy practice's brand-new clinic space, which is INCREDIBLE! So nice and roomy, colorful, modern, welcoming, etc and the therapists seemed really proud to show it to us. :) This is a nice thing, considering we'll be visiting this clinic 2x weekly until the end of time, unless something drastic changes.

**Feeling frustrated about weight again. Haven't actually weighed myself even since we got back from the Disney trip, but I know I've been "emotional eating" more than I'd like and I can feel the pounds coming back on. Those 6-7 lbs. I fought so hard to lose over the last couple of months of school? They're baaaackkkkk. Or at least I think they are. {{sigh}} I did try running yesterday though, and kind of liked it (is that weird?). No one else in my family either wants to do it or even can do it (K has knee issues), and I don't relish the thought of saying "bye, see you guys later, going for a run". All 3 of them will be playing a game, watching something on TV, etc and I'll be out there sweating......not sure that's going to happen very often. Maybe after school starts. But see, that's my problem. With me, there's always an excuse, always a reason to procrastinate. :(

So anyway, I've gotta get out of this funk. I know it's a funk because just thinking about tomorrow and what we might do makes me tired (keep in mind, all 4 of us are on summer vacation for a couple more weeks, setting our own schedules or LACK of any schedule, etc). I end up thinking "oh, I don't feel like doing that, maybe we could just stay home" even if doing that means going to the movies or shopping. And I'm snapping at the kids way more than I should, more than I typically do, but then I hate myself for the way I sound. :(

Guess this should have been called "Melancholy Monday Morsels"............

Friday Fragments

2009-07-10T18:34:00.000-07:00

Ok, I'm trying something new......thanks to Jen for the idea of Friday Fragments!

Friday Fragments, the Water Park Edition

~ Took the family to a local water park today, and they loved it. I did too. What I hate is how it seems as if NO ONE monitors their kids in public places anymore, except me and K, that is. :(

~ On our way to the water park, we drove by the kiddos' school to look at teacher assignments posted on the door today. WOO HOO, Energizer got the teacher I asked for, the teacher he absolutely MUST have for success in Kindergarten. *sigh of relief* Mr. L will have 3 third grade teachers (all kids rotate between them), so it really doesn't matter who he is assigned to for "homeroom".

~ A sweet but heartbreaking scene I observed at the water park: A dad, gray hair, probably late 40s or older, with his son, approximately age 11. Holding hands, walking all around the spraying fountains together, etc. Something made me look closer, and I noticed the son putting his other hand over his ear and cringing as they walked under a waterfall. I watched for a few more seconds, and saw that the boy's swim trunks were loose and drooping a bit, exposing a pair of what we called "swimmies" underneath......you know, the colorful swim diaper things that babies and toddlers often wear in the pool. So, I made my educated guess/assumption that this is a child on the autism spectrum. Could be wrong, I suppose, but I'm pretty sure. Anyway, I kept sneaking glances at them, watching how carefully the dad walked the child through all kinds of water "obstacles" .....under, over, through, etc. Water wasn't deep, maybe a foot at the most, and Dad and son explored it all. Watching them just really touched me, how good the Dad seemed to be with him, etc, and then there's always that "but for the grace of God" thought too if you know what I mean........

~ A week ago, I had a moment of temporary insanity and invited some friends over for a party to be held at my house on Saturday night, July 11. WTF was I thinking? Yes I know, these families have almost all had gatherings at their homes (which we've attended), and now we ought to return the favor and have something here, but OMG the amount of cleaning and crap I've had to do in this house to get ready. And there's still tons more, and only 20 hours to go until they get here! K keeps telling me it doesn't matter, they all know we have kids and our house won't look 100% perfect, but I just can't stand the thought of having people in here unless we're at least on 97% (*or better, of course).

~ Speaking of the party, got any good margarita recipes? I decided to make an interesting flavor or two, beyond just the standard kind, and am still looking for ideas. Comment away if you've got anything!

doubting, again

2009-07-05T19:41:00.000-07:00

Crappy day with little Energizer today. *sigh* I'm just exhausted from all that we've dealt with from him today, and when days like this come, I start doubting again.....worrying about the future, doubting our decision about medication, wondering how in the hell he's going to make it in "real school" this fall, much less in "real life" for the next 75 years or so. *even bigger sigh*

We started trying meds early last fall, September or October, I think. The first one we tried, Tenex, did nothing for him but make him very VERY sleepy. He was in a gymnastics class and falling asleep while listening to instructions from the teacher. :( Oh, but the impulsiveness, aggression, violence, "wildness"? Still there just as much, or even more it seemed. In November, after he was unceremoniously kicked out of our preschool, I called the ped in desperation and she started us on Focalin. He's tried the 2.5 mg short-acting tablets, and the 5 mg XR capsules.

The thing is, Focalin REALLY works for him. Makes him a tiny bit sleepy at times, but other than that, all we get is good stuff......listening, sitting still when asked to, sweet disposition, no aggression, basically an angel. So what we've got in our house is a Jekyll and Hyde now---without Focalin, holy terror; with Focalin, a joy to have around.

Today, we were half unpacked from our quick trip to visit family for the 4th, and I couldn't find the XR capsules when I needed to give him one this morning. We usually do XR in the morning, and then follow up with a short-acting tablet around 3 or 4 pm if needed to get us through the evening. But we were in a hurry for church, and I'm dashing around looking for the flipping pill bottle......not a pretty picture. Eventually, I gave him one of the tablets instead, figuring that was better than nothing, and it was, for a while.

We'd planned a grocery store outing for the afternoon, and as the hour approached we saw the 2.5 mg wearing off. How could we tell? The maniacal laughter, the near-constant running, seeming inability to stop and/or listen, and the number of times I have to resort to "ONE.........TWO....." etc. I mixed up another 2.5 mg tablet into lemonade (our preferred method of consumption) and he drank it as we walked to the car and got loaded up. The store is only 1/2 mile away, and clearly the med did NOT kick in as quickly as I hoped it would. Can you say "shopping trip from hell?" Good job, boys and girls, I knew you could!

Standing up constantly in the stupid freaking "car" contraption that he insists on riding in, grabbing anything he can touch on the store shelves, nonstop chatter about wanting a cookie, wanting ice cream, etc. Eventually, getting out of said "car" but insisting on pushing the car instead.......pushing it WAY too fast, pushing it into the back of people's legs and feet, and just generally acting like a monster who apparently was never granted the gift of hearing. Or of parents, I guess, which is probably what the other shoppers thought.

So, in one of my finer parenting moments, I made an ass of myself in front of the store staff by jerking his hands off of the cart handle just milliseconds before it would have crashed into our bagboy's feet. I jerked him away from the handle, picked him up and carried him, baby style, out into the store lobby while K paid for the food. And we had a "word of prayer" in my (hopefully) softest yet scariest Mom voice about how he'd better NEVER do this again, when we say stop pushing the cart then he'd better stop, etc. Still, no med effectiveness yet, I could tell by the laughing, the thrashing to get out of my arms, etc. And boy, was I regretting that we hadn't put a bottle of wine or some Smirnoff Ice in the cart.......

But you know what? By the time I strapped him into the carseat to drive home, it was kicking in. He was very repentant, almost in tears, and I could see the "angel child" emerging again. At home, things were by no means perfect, but we've certainly been through worse. In the occasional moments of calm tonight, I started thinking though (back to where I started this rambling post).........Is this the way it will always be? People ask me "will he have to take these meds all of his life?" and I don't know what to say. If today is any indication, yes he will.

But what are we actually teaching him? He doesn't know (yet) that he even takes meds, because I didn't want him to use that as an excuse, or expect that the meds have to do the hard work but not him. Does that even make sense? Am I just deluded and/or stupid? It just feels like we're putting a band-aid (or 2) every day on a wound that never heals, never improves. And God forbid if we run out of band-aids, or miss a day........it's a nightmare. But we just keep on sticking the band-aids over the spot, hoping no one will notice and that people won't realize that my child has a festering open wound on his body and wonder why I'm not actually DOING something to make it better.

This has made no sense, and I'm sorry for that, but still appreciate you letting me say it. I'm just worrying, I guess, thinking that we're masking the problem but not improving it, solving it.......only, can it be solved at all? Does age, maturity help? Are there strategies we don't know about? I don't want my child to be 100% dependent on medication to even function in his life, in his world. Is that what he has to look forward to? Right now, my sanity and survival depends on those meds, I'll tell you that much. Will that ever change? Am I taking the easy and/or selfish way out?

how far he's come

2009-06-30T19:52:00.000-07:00

I know, I know......I still owe you parts 2, 3, maybe even 4, of the Orlando saga with pics. I'm still uploading them slowly, and onto various computers, so it's coming, I promise. It'll just be a bit more of a wait as life interferes with my blogging time!

Today's post, however, is about Mr. L and an amazing occurrence that happened at about 2 am this morning. He had fallen asleep next to his dad in the bed, as they watched sports together, and had neglected to go to the bathroom right at bedtime.....so you know what that means. He's nearly 8, he doesn't have nighttime accidents, but he did last night thanks to that big cup of lemonade he drank before bed. I'd been online, but was ready for bed myself and went in to check on him and see if there was room for me to actually sleep in my own bed. What I found was Mr. L sound asleep in a pair of soaking wet underwear, on a soaking wet mattress.

I called his name a couple of times, and he stirred and said "yes?" I explained that he was wet, I've got some new underwear to put on, so he needed to get up and let me help him. Calmly and quietly, he did that. He was probably about 25% awake, but followed me as I led him to the couch and set him up with pillow and blanket, etc to sleep there. Instantly it seemed, he was asleep again and that was that.

This morning, I started thinking about how absolutely freaking amazing this incident was, compared to the way things used to be for Mr. L and for us. When he was a year old, and until age 3 or even 4, he was the world's worst sleeper and night times were torturous for us. He would wake up multiple times almost every night, and since he insisted on sleeping with us, you can see the problem. Heaven forbid you should actually touch him, or try to move him/talk to him/breathe in his general direction. OMG the blood-curdling screams that would come out of that little body!

Looking back, we think it was autism-based, since this coincided basically with the time in which he was so delayed in language. But those oh-so-lovely parenting books like "What to expect the first year" (you know, the book I bought and hardly even opened because it had no connection to my reality? Yeah, that one) talk about something called "night terrors". Maybe this was that, I don't know, but it was horrible. He would cry, scream, twist and writhe around, and nothing you'd try to do would help. In fact, it would make it worse. Don't touch him, don't try to cuddle, nothing. Just let him scream it out as you die a little inside and wonder how he's managing NOT to hyperventilate.

Hard to imagine, looking back, but I remember being in mortal fear of accidentally touching my child while he slept in our bed.......because if you touched/jostled/moved him, even a little, you could set off what would become an hour or more of screaming, crying, waking the neighbors, shattering glassware and causing insomnia. Sometimes, cranking up "Blue's Clues Musical Movie" would calm him down and break the cycle, but often it would not. Those nights were the worst, and I remember feeling so despondent, so hopeless that we'd ever have a normal, real night's sleep. Embarrassing as it sounds, I remember having to decide whether it was better to try and wake him to change clothes when he'd wet them, or leave him wet so we don't risk what could happen if we disturb him.

Contrast that with last night, and they couldn't be more different. This is a hard thing to put into words and explain, but to me it's huge..........my baby sure is growing up!

The Orlando saga, part 1

2009-06-26T20:00:00.000-07:00

I'm baaaacccckkkkk! Catching up now, slowly, on the internet time I missed during the 8 days in Florida.....went through some serious withdrawals, but it's all good now, LOL!

I posted yesterday at Hopeful Parents, so go and check that out when you get a moment. It's the tale of the end of Mr. L's baseball season.........*sigh*.

Now, as for the Orlando vacation reports, here's what I think I'll do: I want to give good descriptions, details, etc but there's so much to tell. So, I think I'm going to break this up into more than one post; hopefully, it'll be more manageable that way.

Day 1

Left home at around 8:30 am, ate lunch at the Florida welcome center, checked into hotel (Disney AllStar Music resort) at around 4 pm. Met a great friend and her son for dinner, swam in the hotel pool, and then hung out inside as a massive storm hit the area.

Day 2

Epcot! This turned out to be the kids' favorite park, actually. They loved the scientific stuff (especially Mr. L, no surprise), especially "Living with the Land"--a ride in which you tour the greenhouses and areas where Epcot staff are growing amazing plants, etc. We rode the resort bus back "home" for lunch and rest time, then went back to visit the "World Showcase" which is the area depicting different countries. We asked the kids if they wanted to try the Kim Possible game....Energizer wanted to, Mr. L didn't at first. Game works like this: You are given a cell phone on which you listen to messages, press buttons when asked, etc. The messages tell you where to go and what to look for; it's like a scavenger hunt. You find hidden clues and then "save the world"! We did it, twice actually, and it turned out that Mr. L was more into it than any of us! Really a cool idea that you've gotta try if you go.

In the Japan area, we heard a lady singing on a microphone, and walked over to check it out. She had on an authentic Japanese costume, and was beckoning people over for "story time" so we decided to stay. It was an old Japanese folk tale, and she needed a boy from the audience to depict the main character. She tried to get Mr. L to do it, but of course he would have no part of that and even tried to run away! The story teller was a little shocked at his reaction, but she just turned and asked K to do it instead! So here he was, a 38 year old, pretending to be a Japanese boy in a story he's never heard before! But he did great, and my boys seemed proud that their dad was up there in front of everyone.

Ate dinner in the Morocco section of the park....YUM! We all had wraps--chicken for Energizer, and lamb for the rest of us. It was so tender, very very good! Mr. L really liked it too, which slightly surprised me. We rode the boat back across to the park entrance area, then headed back to the hotel.

____________
Ok, that's Part 1. More to follow, along with more pics, of course. Hopefully I can get all of these posts done in the next few days before I forget the details of what we did, LOL! :)

F L O R I D A, here we come!

2009-06-15T19:13:00.001-07:00

Well, after approximately 2 years of planning, saving up, and waiting, it's finally here......the long-sought-after Disneyworld trip! We're very excited, and definitely as ready as we'll ever be. But I will have little to no internet access down there, so you'll just have to wait about 10 days for my updates and pics, I guess. Sorry, guys! :)

Wish us luck, and decent weather, and manageable lines, and the occasional vegetable to eat in the midst of nonstop pizza, burgers and fries. Take care, everyone! See ya on the other side........

My personal blog party

2009-06-11T08:39:00.000-07:00

Jen, a great cyber-friend and fellow blogger, posted something a couple of days ago that I just love........her idea for a "blog party", an imagined gathering of wonderful blogging friends who can never get together in real life. But if they could, what a great thing it would be and how much fun they'd have! :) So, I am now officially stealing the idea, and here's how my blog party would go. Daydream with me.....

Miss Tafka would most definitely be there. Well, let me restate that: I'd have had her come over a day or so ahead of time, and help me clean up my house! Then, at the party, she'd be teaching us all how to create marvelous crafty things and how to scrapbook so that it looks like something you'd actually want to show off!

Jen, the one from whom the blog party idea originated, would be there too. She thinks she can beat me in a game of "Name that Band piece", but of course, she's sadly mistaken. We'd demonstrate our musical knowledge for the other guests, and maybe she'd even play a flute duet with me or something. (I call 2nd part!)

Another Jen would be there too, and the 2 Jens would be having a bizarre contest.....who has the most in common with me, LOL? Both Jens are really my long-lost sisters, I'm convinced of it. And this Jen might be persuaded to read some of her great poetry for us!

K is also on the guest list. It would be so much fun to meet her in person, and to have a cocktail or two while sharing ASD stories (both the happy and sad ones).

I'll invite Alexa too, just because of how cool it would be to have a real blogging celebrity at my party. She's famous, hadn't you heard? NPR commentator, et al.

L will be there, if she finds a free moment in the midst of house-selling and house-buying. My oldest, Mr. L, is betrothed to her oldest, C, so it would be nice for them to see each other again and get re-acquainted. Plus, L is going to lead the "book club" portion of the party, suggesting great reads for us and facilitating discussion. :)

4onfaith will bring the big, gorgeous Kentucky Derby hats for everyone to wear, and then she'll have us all in tears watching her amazing video about prematurity. My boys are featured players in the video, naturally.

Of course, we've gotta have Molly too, and she'll bring her "been there, done that, don't mess with me" toughness.......and teach us all how to have that too, while never forgetting how to laugh. :)

Sarah and I will hug, laugh, cry, and have a friendly battle over whose 27-weeker has the skinniest legs at this point. Or wears the smallest clothing size. Or is charted at the lowest percentile for weight.

Although she doesn't blog very much these days, I still want Mysh to be there too. I mean, come on, Australia's not that far away, right? But, if she comes to the party, she's gotta bring Nick too. I have GOT to meet him---I know it'll be just like looking into a crystal ball, seeing Mr. L and what I hope he'll be like in 10 years.

Oh, and don't forget Heather...she'll do a stand-up comedy routine for the party guests. Primarily teacher-humor and parenting stories, and I'll be in the front row laughing harder than anyone else. You know it'll be funny when you read her blog and she describes herself as Mom of 2 ferrets! ;)

Sounds fun, huh? A girl can dream, can't she? Even though my party guests are a large collection of diverse women living all over the world, we've got some great things in common--namely, love for our kids and a love for writing and sharing our stories, struggles and triumphs with each other and the world. And just as Jen's blog party ended, mine will end with a toast. Some glasses will have wine, some sweet tea, some Diet Coke (the drink of champions), but that matters not......what matters are the friends we share it with, and we clink our glasses to celebrate that friendship and the amazing way that blogging has brought us together.

Oooh, that smell

2009-06-05T20:56:00.000-07:00

No, not the Lynyrd Skynyrd song, sorry.....

This post is about the amazing way that smells can instantly transport you to another time, another place. I've experienced that phenomenon many times before, but it never ceases to amaze me. Today was no exception.

In the children's hospital where my boys each spent their first weeks of life, the NICU is on the 8th (top) floor. The elevators are on one end of a long hallway, and the NICU entrance is on the other end. Pediatric intensive care (PICU) is on that far end of the hallway too.

As things tend to come full circle, I found myself back at the children's hospital today, only as a visitor this time. A former student of mine has her own daughter now, and that daughter is very ill and a patient in the PICU on the 8th floor. Through the miracle of Facebook, I've been reconnected with that student and have followed her updates about her daughter. I knew I wanted to do something for them, if I could, so I decided to make a care package of snacks, bottled water, etc for these parents as they spend hours, days, weeks in that hospital....a situation I know very well myself.

So I packed up the boys this morning, and we trekked downtown to deliver the package. After a successful parallel parking adventure, we went into the hospital and I guided the boys to the main elevators. The instant the doors opened and we stepped inside, I smelled it. Can't describe it, won't even try other than to guess that it's a mixture of disinfectant, hand soap, bed linens and fear. But when the smell hit my nose, I had a simultaneous feeling of pain, dread, sadness in my heart--literally a physical pain in my chest. It was strangely like the feeling I remember having when I began my second tour as a NICU mom--disbelief that I was there again, coming to grips with what I was facing, what I'd lost, what more I possibly could lose.

We rode up to the 8th floor, and when the doors opened on those familiar sights in the hallway, the smell was even more vivid. I'd know that smell anywhere, anytime. Come find me in 20 years, with that smell in a bottle, and I could tell you what it was. I tried not to focus on the surreal aspect of walking down that hall holding the hands of my 2 boys, and just stayed with the task at hand--delivering our package of muffins, pretzels and granola bars. That hall can seem so long, so scary to walk down, and I really never thought I'd walk it again. But here I was, remembering the lonely and fearful walks down that hall--45 days in 2001, 78 days in 2004.

I just keep coming back to the smell, though. Indescribable, but unmistakable. It's like I was right there again, rather than 5+ years removed from those days. When we reached the hall's end, and saw the entrances to the NICU and PICU, I looked toward the NICU side and thought about the babies that are in there today, and about their parents. How many babies are fighting for life today? How many parents are living off of vending machines and sleeping in the little family waiting room? Then, we turned to look at the PICU doors, and I remembered parents I'd met along the way who had older kids here......cancer, transplant patients, etc.

We didn't find who we were looking for, and ended up heading back downstairs to the information desk. They agreed to take the package up for us and get it where it belonged, so we left the bag with them and headed out. But all day, I've been remembering the smell and its amazing connection to memory and experience. We're unbelievably fortunate to have had one of the country's best children's hospitals to care for our preemie boys, but I think you'll understand if I say that I'd be perfectly happy NEVER to smell that smell again.

Thursday Thirteen, part deux

2009-06-04T19:15:00.000-07:00

I'm giving this another go, as soon as I figure out what I want to list 13 of this time........

Ok, I'm back. Here goes:

13 Favorite Songs/Pieces of Music

*warning, this is going to be a totally random list, in no particular order and with no apparent rhyme or reason to the choices* Ok, carry on.....

1. March from Symphonic Metamorphosis, by Hindemith (the concert band version, natch)
We played this at Furman, and it ranks in my mind as one of the best pieces ever for a brass player. What a high when it reaches the loudest part near the end!

2. American Pie, by Don McLean.
This song gets me every time; the symbolism in it, etc. And that line "as the players tried to take the field, the marching band refused to yield" gives me goosebumps, as dorky as that may sound. But if you've marched, and almost been trampled by the gigantic football players, you'll know what I mean.

3. Dream a Little Dream of Me, as sung by Mama Cass Elliot.
Her voice is so distinctive, and unusual, but I love the way she does this song. Fits well in my voice range too, so every time I hear it I have to sing along and do my best Mama Cass imitation, LOL!

4. Romeo and Juliet Overture-Fantasy, by Tchaikovsky.
Again, this is a piece I've played, and it exemplifies the Romantic period better than anything else, IMHO. You've heard it, trust me, you have, even if you don't know the title. Movies, commercials, if they need music to represent someone being all starry-eyed in love, this is what they play.

5. Theme from Gone With the Wind, by Max Steiner.
Are you seeing a pattern here? Dripping with sappy romanticism, but I guess that's a pretty good description of me too, in some ways. ;)

6. Love Shack, the B52s.
Reminds me so much of the days of fraternity/sorority parties at Furman, when the song first came out. A room full of music people....you can imagine we sang at the top of our lungs, and it was so much fun!

7. Suite from Monteregian Hills for brass quintet, by Morley Calvert.
K and I played this several times in college, including on my senior recital. A showy piece, fun for trumpets especially, and with some neat "inside jokes" for the musicians!

8. Moondance, by Van Morrison.
K sings this with his rock band, and has for years, and I love to hear him! :)

9. Incantation and Dance for concert band, by John Barnes Chance.
What a fun piece to play! Wish I could have played flute on this one, but I'm not sure I could cut it in the more technical parts.

10. Elegy for a Young American, by LoPresti, for concert band.
Written in honor and memory of JFK, and this was a piece I chose to teach and conduct the first time I ever took a band to a festival (while student teaching). We got a I!!!!!! And this is such an emotional, moving piece, very powerful.

11. Carmina Burana, by Orff.
The entire music department of Furman did this oratorio, and it was amazing! The stage was full---orchestra with complete wind section, huge chorus, it was wonderful to be a part of. Wish I could sing it one day!

12. The Messiah, by Handel.
Same story---Furman music department used to do this every other year (wonder if they still do?) So, I played trumpet my freshman year, and sang soprano my junior year. Singing was more fun! (ooops, did I just say that?)

13. Ave Verum Corpus by Mozart.
Sang this at Furman, and conducted it with my own chorus this year. One of the few things we did this year that sounded good (to me) and that I was proud of myself for teaching them, etc. The progression of the harmonies in this is amazing!

Ok, if you've not been bored to tears by my music-nerd list, thanks for reading and staying with me. :)

One of those dates that reminds you of something

2009-06-02T20:00:00.000-07:00

I hate when this happens. I've always been the dates guru in my family, even since I was a kid. I could remember everyone's birthday, and any other random date of any random event you could imagine......I was the one people would ask, "when did ________ happen?" and I could remember.

But every once in a while, a date comes up and I can't (at first) put my finger on the significance. I'll write the date on a check or a paper at school, and think "why does June 2 ring a bell?" "What is June 2?" and then it hits me.....June 2 was Energizer's due date back in 2004. You know how Moms talk about their babies' due dates: "I'm having a June baby" "She's an October baby" etc. Well, Energizer was supposed to be a June baby, but in reality was a March baby. Early March, actually. The difference between June and March is pretty damn huge......several pounds, several months in the hospital, and (so far) 5+ years of therapies, developmental pediatricians and ADHD, complete with medications.

And just to further commemorate this day, we ran into one of the boys' nurses this morning. I see her once or twice a year, because her kids go to the same school that Mr. L does. Today was field day, and Energizer and I went so that we could follow Mr. L's class as they rotated through the game stations. The nurse was doing the same, and she recognized and remembered me, which never ceases to amaze me. She spoke briefly to Energizer, then was called away to her official duties, LOL!

On another topic, I think I need to make an appointment for Mr. L down at the developmental ped. We haven't been in a while, and he's been doing so well that she feels comfortable spacing our visits further apart. But even as I write this, I wonder what she's going to be able to do, what can she tell me or teach me that I don't already know? My concerns right now pretty much revolve around anger and anxiety. Anger, in that he seems to be unable to express a mild form of anger, like annoyance, etc. It's either calm and fine or livid! Yelling at Energizer, yelling at baseball teammates who violate some kind of rule (in his mind). Anxiety has been exhibited too, mostly in what outwardly appears like an irrational fear of something or some situation, but it's obviously not irrational to him. Imagining that something "bad" that's happened will happen over and over and over again, etc. And, he's overly anxious about what others do, specifically Energizer. He freaks out if E is either "breaking a rule" or doing something even remotely "risky", like standing on a pier next to the river as we did a few nights ago. He's uber-focused on getting E away from the edge of the water, telling him to stand back, move etc and then PUSHING him back when he hadn't moved.

In general, I just don't like his attitude and way of responding much of the time, and don't always know what to credit to the Aspie in him, and what's just "almost-8-year-old boy" as they test limits, learn to express themselves, etc. *sigh* But to de-stress and give myself a good laugh every so often, I'm reading a new book: "Shut Up About Your Perfect Kid". Co-written by a mom of an Aspie and the mom of a child with bipolar disorder....I'm seeing a lot to relate to in there already! I'll give you an official review when I'm done, ok?

almost sprang a leak

2009-05-29T16:12:00.000-07:00

The scene: a football stadium, Catholic high school, upper-income neighborhood. Late May, hot and humid Friday morning.

The cast: 200 newly-minted high school graduates in green cap and gown, 1000 spectators in the stands, 50 or so faculty and staff in black gowns and multi-colored "hoods". One of them was me--black gown, pink and purple trim (isn't it interesting that pink is the official color symbolizing music?).

The actions included, but are not limited to, the following: sweating profusely, listening to speeches, watching 200 young people receive diplomas, sweating profusely, listening to Pomp and Circumstance being played over and over and over and over.....oh, and did I mention sweating?

But when it was over, and time to leave, I had a moment in which I wasn't sure I was going to hold it together emotionally. As much as I've had my spirit broken by that place, I'm gonna miss it too, in some ways. And as I walked around afterwards, looking for some of my students to give them one last hug or handshake, I felt drops of H2O leaking out of the corner of my left eye. And it wasn't sweat. I was determined not to spring a big leak, at least not in front of everyone. I managed to wipe away the drops, but they kept being instantly replaced by more. Slow and steady leak.....

I really didn't find the students I wanted to see, in the crush of people trying to get out of the heat. I chatted with a couple of teachers, several of whom still seemed to have not heard I was leaving, and then walked to my van. And that was it. Took off the gown and hood, and drove off of the island. Door officially closed on that chapter of my life. I didn't expect to react the way I did today. It's almost like I graduated too. When the speakers talked about "leaving this place that's been such a part of our lives, going out and making our mark on the world, making a difference" etc, it felt almost like they were talking to me too. Hope I can live up to the expectations--the ones I set for myself.

Thursday thirteen

2009-05-28T08:21:00.000-07:00

Stealing an idea from my blogger buddy Tafka today.....here is the debut edition of my Thursday thirteen!

13 Things about Me

1. I'm going to be a college student again starting in August! It still doesn't seem real sometimes, but I bet it will when I see the first class syllabus and list of assignments!

2. I love living in Lowcountry SC. Not sure I'd want to live anywhere else! There's so much to do and see down here, and I love just looking at the natural beauty of marshes, rivers, etc.

3. When I was younger, I always figured I'd have girls one day. I was such a "girly girl" myself, the complete opposite of a tomboy, and yet here I am with 2 active boys! But I wouldn't change a thing about that!

4. I've never traveled outside the US. Not even Canada. Truth is, I feel pretty deprived in that department, and I'm not sure I'll ever be able to rectify it either. My ultimate vacation (outside the country) would be to England...specifically London. I know, it's rainy and dark, but the history there is just such a draw for a nerd like me. ;)

5. The West Wing is my absolute favorite TV show of all time. When it was still running, I would literally RUN out of Wednesday night choir practices to try and get home in time to see the opening credits.

6. I am love-love-loving Facebook. I can't think of a better way to reconnect with so many people from high school, college, former students I taught, etc. On any given day, I can chat with my college housemates, music fraternity sisters, high school band friends, people from my church, family, coworkers of past and present.......it's simply amazing.

7. I'm trying hard to improve my eating habits, and to lose weight along the way if I can. Really have only lost about 7 lbs so far, but I'm optimistic and hope to lose at least 5 more before......

8. We're taking the kids to DisneyWorld for the first time in about 3 weeks! I cannot WAIT to see their faces, their reactions to it all. We're staying in the AllStar Music Resort (gee, I wonder why, LOL) and will do all of the Disney parks, plus Universal Studios and the Wet-n-Wild water park. Oh, and a Tampa Bay Rays baseball game on our way back home.

9. I am both fascinated and overwhelmed at the same time by the broadness of the autism spectrum. And I really do accept that my son is on that spectrum, but sometimes I feel like maybe we don't belong in that "autism community", like we're TOO lucky or too fortunate in how well Mr. L is doing. It's like we're in no-man's land, not belonging completely to either group.

10. As strange as this sounds, coming from a musician and music teacher, I really don't always like to listen to music while in the car. Especially after a school day, I just want to hear talking........so I listen to talk radio, or one of the comedy channels on Sirius, etc.

11. I'm a political junkie from way back. The 2008 election cycle was the most fascinating, exciting and amazing thing I've ever experienced in my lifetime of watching that stuff. Of course, it is always more fun when your guy wins, right?

12. I still have bitterness, anger, resentment and frustration in my heart regarding my preeclampsia experiences and the premature births of my boys. There is so much about pregnancy I missed out on, and that might sound trivial but to anyone who's been through what I did, it's most definitely not. I hide it pretty well nowadays, but it's there...jealousy, even jealous of dear friends when they "beat PE" or just have plain old normal easy pregnancies like everyone should have but some of us don't.

13. I am incredibly blessed, far beyond what I deserve. My boys are alive, growing, thriving, smart, active, funny, talented, and far too many PE survivors sadly can't say the same things. So when I complain, or whine, or have temporary amnesia, maybe you can help remind me about #13.........

packing up and moving on

2009-05-25T19:27:00.000-07:00

Most band directors I know, and most teachers in general, teach at several different schools over their career. I'd say 3 schools is typical, even more is pretty common as well. K is in his 4th school right now, and I expect he won't retire from the current job, meaning there will be some more changes in his future.

And me? Only 2 so far, and if my career takes the direction I am hoping for (into Music Therapy) then I may finish my life as a teacher with only 2 schools under my belt. I taught at School 1 for 8 years, and now have finished 6 years at School 2. But tomorrow, I will finish packing up my personal belongings from my classroom, and turn in my keys. On Friday, I will go to graduation and march in with the faculty, listen to the seemingly endless list of graduate names being called, then get in my car and drive away from there for the last time. There are a few people around there, some students and some teachers, that I'll miss and wish I could stay in touch with. I'm not sure that I'll be able to, but it's a nice thought, at least. The school will be celebrating it's 100th anniversary in 2015, and I used to wonder if I'd still be around at that point.......I know it'll be a BIG deal in the community. But I've been ready to leave for a while now, just scared to make that jump. I'm at peace with it now though, knowing it was the right decision. Emotionally, I'm outta there already!

So, thanks BEHS for coming along at just the right time for me, and giving me the chance to teach Band part-time when I needed it. Thanks to the Band kids I taught there over the years......thanks for being brave enough to get out there and perform with me in front of your classmates, daring to thwart the "athletics is king" attitude that is so pervasive. I think we made some good music, and had some fun along the way. I hope you learned something, and that music will continue to be a part of your life. I never saw myself teaching high school, but I'm glad I had the chance to do so. We can remember Solo and Ensemble, getting soaked in the rain at Homecoming, the overnight trips to Myrtle Beach for Region, playing PDQ Bach, the Hey Song, 2001.......it's been a challenging and mostly fun ride. Thanks for going with me.

I can't believe I'm admitting this........

2009-05-21T19:24:00.000-07:00

I recently was introduced to a blog I'd never seen before, and I've grown to really enjoy reading it. It's written by a fellow PE survivor, and Mom to 2 angel babies. Her most recent posting really hit home for me, and it's what inspired the upcoming confession you're about to receive. Check out her post called Pickles.....it's very well-written and thought provoking. I know I won't do as good a job with mine as she did, but here goes..........

I have something you'll probably find quite surprising in my freezer. Go ahead, guess. Cherry Garcia ice cream? Nope. How about venison? (well, we're in the South, it could happen....) Nope, strike two. Ok, I'll tell ya. Small bags of frozen breastmilk.

I think this needs a backstory, don't you? It's painful to tell, but I've come this far so I might as well finish it. I am by no means a member of the La Leche League, not a "breastfeeding nazi" as I've heard the term used, but I had always intended to try breastfeeding when I had children. I am familiar with the health benefits, for Mom and baby, and just always figured I'd do it.

But the hard, unflinching reality of my situation is that I never was able to really breastfeed in the true sense, with either of my munchkins. Never. Preemies who are sick, on ventilators for lung issues, etc are not able to manage the suck/swallow/breathe routine well enough to do it, they just can't. The nurses in my hospital and in the NICU heavily promoted pumping the milk so that it could be available for my boys once they were ready, and I dutifully did my part. Starting on the day of delivery, and round the clock from then on, even while I was still a patient myself. Those lovely pale-yellow hospital grade pumps became my most intimate friends........pun intended. Nurses brought one to keep in my room, and there were pumping rooms outside the NICU too. I was given small plastic cups with yellow tops to collect the milk in. I'll see those cups in my mind's eye for the rest of my life. I desperately pumped and pumped and pumped until I bled, truly. I carefully collected every precious drop of the milk in those cups, and turned them in to the NICU secretary several times a day---festooned with little white labels on which I'd written Mr. L's name, and the time and date of the pumping.

Day after day after day during the NICU weeks, I pumped and pumped. Stressed and freaked out if I was going to be away from the pump at the time I needed to do it, always worrying about the never-adequate milk supply, looking forward to that magical day when they took the first drops of my milk and fed it to my child through an NG tube. One tiny cc at a time. "Ooh, today he's up to 2 cc". "I think we can try another cc at the next feeding". The milk had to be so carefully thawed after freezing, carefully kept cold during transport to the NICU...it was so complicated and so artificial. Everything that the supposedly "natural" process of nursing your baby was NOT supposed to be.

When the boys came home, I kept on pumping, thanks to the hospital pump we rented for an exorbitant amount, and then thanks to a friend who gave us her pump she no longer needed. With Mr. L, the supply of milk just completely evaporated after his first couple of weeks at home......despite taking fenugreek, drinking fenugreek tea, you name it, I did it. With Energizer, I lasted longer with pumping, but as time went on, my supply did dwindle from its already-low level, and I wasn't able to keep up with his needs. I drank that horrid tea again, took Reglan (weird that its side effect is to help with milk production), and mixed the few ounces I could produce with some preemie formula. We were desperate for him to gain weight, as he came home still only weighing 4 lbs. 4.4 oz, a number that is burned onto my brain. Pediatrician was labeling him "failure to thrive", and the idea of a feeding tube was always dangling out there, to be inflicted upon us if nothing else worked.

And yes, in case you're wondering, I did try the act itself, after the boys were off of the vent. They still had oxygen via nasal cannula, and the suck/swallow/breathe thing still wasn't happening, but I did try. Both in the hospital and at home. Energizer would just cry and cry after we tried at home; I could tell he'd not gotten enough to eat, and how could I do what the BF nazis would say? "Don't introduce the bottle, don't give him an option, just keep doing it and he'll catch on" etc. Hmm, I think I value my child's life and healthy development over the idea of him feeding at my breast. If he gets the damn milk into his stomach, but it comes by way of a bottle filled with milk I pumped, what the hell difference does it make?

Gerber sells a handy little Ziploc bag designed for breastmilk storage, and it is here that my story comes full circle. The bags are made to stand up on their own, and are marked on the side with graduated lines to measure the amount of milk inside. I bought them, and began using those to store my milk at home, rather than the hated yellow-capped cups. I kept on pumping, getting fewer and fewer ounces every day, until Energizer was 9 months old. That's 3 months in the hospital, and 6 months at home. I'd thaw out a bag of frozen milk and ration it out over the day, so that each bottle he drank would have at least a drop or two of my milk in it, and the rest was Neosure preemie formula (one of the foulest smelling concoctions on earth). Eventually, I reluctantly stopped the pumping when it became clear I wasn't going to get any more for my efforts. And I slowly dipped into my frozen stock, until there were only about 3 Gerber bags left in the freezer. The last one I took out and thawed seemed freezer burned, if you can believe it, and he didn't like how it tasted apparently, so I just didn't thaw out any more, and I left the bags there.

I'd notice them occasionally, and think "how long am I going to keep those?", but just not have the heart to throw them out. When I'd rearrange the freezer contents, making room for new purchases, there would be those bags of milk, STILL there after many months, then years......Energizer is 5 now, and the bags are still there. At one point, I said something to K about it. Something very quick, and embarrassing, basically "don't throw those away, I'm not ready" and he has nicely accommodated me. This is so irrational, so insane, but it would feel like the final acceptance of my failure if I threw these out. The final blow, the final reminder of how my pregnancy, birth and parenting experiences have diverged from what I wanted in so many ways. And it hurts. I can't put it any better than that, it just hurts. It's been several years, I'm supposed to be ok now, right? Truth is, I'm not, and I guess I won't be until I'm ready to throw that milk away. I never breastfed my sons in the glorious "earth mother" way that comes so easy to so many, is so natural and has been practiced since the dawn of time......but as long as I have those bags in the freezer, I have proof that my body did in fact produce milk at one point in its lifetime. Not much else even proves I was ever pregnant, other than the precious lives of my children. No preggo belly pics, no labor......but I've got that milk. Check back in a few years to see if I've still got it. Betcha I will.

May is Preeclampsia Awareness Month

2009-05-20T19:34:00.001-07:00

.....so, now you're aware of it, right? ;)

Seriously, I mention PE awareness because it leads me to what I wanted to discuss with you tonight, boys and girls. A few days ago, in my blog-visiting, I ran across a blog that had this image on it:

So, I checked out what the petition is, posted the image on my FB page and on this blog. One of my FB friends asked what it was about, so I explained briefly after consulting the official petition wording so I'd get it exactly right. And it started me thinking.....

I'm gonna admit something that will probably sound very selfish, or juvenile, etc, but here goes: I have a love/hate relationship with the March of Dimes. There, I said it. Yes, I did have 2 preemies. Yes, I've participated in the March for Babies several times (also known as WalkAmerica). My family was even a local Ambassador Family a couple of years ago, and I did newspaper and TV interviews, made speeches/public appearances, etc. And you're thinking, "so far this sounds like the love part but not the hate part", right?

Well, how can I sum it up? I think that the MOD must be looking at the growing problem of prematurity this way: There are some causes of prematurity we cannot prevent, cannot change, and do not even know why they occur. But some of the causes we CAN address, can help to change and make a difference. So we're going to pick our battles for the most part, working on those things that we know can be improved by our efforts. Consequently, so much of what they publicize has to do with educating pregnant women about "preventing preterm birth" as they put it.

While K and I were still serving as the Ambassador Parents, MOD invited us to the state volunteer conference. It was a night in a nice hotel, dinner on site with other volunteers from around the state, awards were given for money raised in the Walk that year, etc. We didn't have to speak at that dinner, and there was a big crowd so we were pretty anonymous. But it gave me a chance to see up close the "talking points" about what MOD is addressing, etc. And I came away feeling guilty and vaguely insulted or criticized. I know, that's just me being overly sensitive, but that's who I am.

In the text of the preemies' petition, it says this:
We urge federal and state policymakers to expand access to health coverage for women of childbearing age and to support smoking cessation programs as part of maternity care. Ok, so I guess that means if you had a preemie, you must have had no health care and/or have been smoking like a chimney, right?

Or how about this:
We call on hospitals and health care professionals to voluntarily assess c-sections and inductions that occur prior to 39 weeks gestation to ensure consistency with professional guidelines. Yeah, because I just chose to have my babies surgically removed from my body at 27 and 29 weeks, even though I should have waited longer. You know, avoid those pesky stretch marks by getting that baby out before anyone can even tell you're pregnant.

So often, on the surface at least, MOD seems to be conveying the message that the answer to the prematurity crisis lies in educating people, getting women adequate health care, and taking folic acid. Well you know what? Screw folic acid. Lot of %#%@& good it did me, huh? Obviously, those poor pitiful Moms of preemies must just not know any better than to do things that are risky, must not even have a doctor to care for them, must need our help, right?

Look, before anyone storms off in outrage, let me say this: I know that MOD has done and continues to do amazing work. Surfactant is a miracle, and it helped both of my boys survive, no question. And I agree with them that anything which causes a baby to be born too soon is something we'd like to change and eradicate. But I can't help feeling that, when I support MOD (speak for them, wear the shirts, sign the petition), I'm endorsing the public statement which (when translated) says: Hi, I'm a mom of 2 preemies because I did something wrong. Please help us so that no one ever has to make this kind of mistake again, or ever has to fail the way I did.

Told ya I was super sensitive. Please go sign the petition anyway, ok? Despite my insanity, sign it anyway. And support MOD in whatever ways you can. But look......when you do, just remember (and spread the word) that not all prematurity can be prevented, not all Moms of preemies did something to cause it to happen, which means it was not their fault! They'll still feel guilty (trust me on this one), but it will help them (ok, us) to be reminded that someone out there knows that what happened to our babies was out of our hands, not the result of ignorance or intent to do harm, but the result of a horrible disease for which there is no cure. That's how you can help fight the battle against prematurity........and you'll raise awareness of preeclampsia at the same time.

Not Me Monday

2009-05-18T19:55:00.000-07:00

Several of my blogging friends have adopted this idea, so I decided to join in. The idea is that you describe several things that you have not done recently, if you get what I mean..........LOL! Here we go:

Today, I most definitely did not go a dermatologist for the first time, and he did not remove a suspicious mole from my face for biopsy. I am not at all worried about the results, which I won't get for a week.

I did not just turn the HEAT on in my house, because it certainly is not freakin' 55 degrees in South Carolina in May!

And lastly, I absolutely am not procrastinating (darn you, internet) about doing the lesson plans and reports I need to turn in for a teacher recertification class. Apparently, I do not plan to keep my certificate active when I do not go back to school in the fall........

blog facelift

2009-05-17T18:49:00.000-07:00

So, how do you like it? Super-gigantic hugs to my buddy Tafka for the awesome blog header she designed! You rock, girl! And then I got a matching background at Cutest Blog on the Block.......goes together pretty well with the header, I think. I love the whole brown/blue idea anyway. Yeah, baby!

Well, it's been a week since my Mother's Day shout out, and I've been busy finishing up school (WOO HOO!) and trying to decide what to write about next. I don't want to get all mushy on ya, but my thoughts keep coming back to the fact that I'm closing a chapter of my life as we speak, and continuing to hope and pray that this move is the right one. Because I am an official Broadway-musical nerd, the quote that comes to mind is one from The Sound of Music......"When God closes a door, somewhere he opens a window". So today, that door closed when I conducted the chorus in the Baccalaureate service for the seniors. Felt strange to know that I won't be doing anything like that again, at least not any time soon.

And in yet another nerdy allusion, as I closed the door of my classroom when I was about to leave, I remembered how the very final scenes of several famous TV shows had this moment where a character would turn off the lights, stop at the door and look around wistfully for a second, then close the door and walk away. I know the Mary Tyler Moore show did it, and I think Cheers did too. I am such a sap, it's pathetic.

Kids are doing well, baseball season's chugging along with Mr. L's team at 4-1 right now. Energizer made a friend for life this afternoon at a restaurant where we ate supper. It's a barbecue place, and we'd never tried it but it turned out to be very good. E had just had a mini-nap in the van on the way there, so was still groggy and subdued at dinner which is always a good thing where he's concerned.

Anyway, he wanted to order his own food, so he softly told the waitress his choice, "chicken fingers" when she came to take the orders. When she brought the food, he was so excited to see it that he leaned over across me in the booth, took her hand and kissed it like a true gentleman! She was so surprised and touched by it, you could really tell. :) Then, as we were about to leave, we stepped out of the booth and started getting raincoats on (DON'T get me started :( ). She came back over to say goodbye and thank us, etc, and he gave her a big hug! Granted, it was a hug around her thighs basically, since he's still such a little guy, but that was ok with her! She kept saying how sweet he is, etc etc. :) No argument from me on that one!

To my special sisters

2009-05-10T04:38:00.000-07:00

Today is Mother's Day, and it's my day to be discriminatory.

What I mean is......every mother loves her child, and they are all to be appreciated and valued, not just today but every day. But as a member of a smaller group, the moms of special needs, I selfishly want to take the opportunity today to recognize and celebrate that very special sisterhood. The essay below says it far, far better than I ever could. And if you, the reader, are a part of this sorority (you'll know it if you are), then you have my prayers for you and yours, and wishes for a wonderful Mother's Day, today and always.

To You, My Sisters
By Maureen K. Higgins

Many of you I have never even met face to face, but I've searched you out every day. I've looked for you on the Internet, on playgrounds and in grocery stores. I've become an expert at identifying you. You are well worn. You are stronger than you ever wanted to be. Your words ring experience, experience you culled with your very heart and soul. You are compassionate beyond the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority. A very elite sorority. We are special. Just like any other sorority, we were chosen to be members. Some of us were invited to join immediately, some not for months or even years. Some of us even tried to refuse membership, but to no avail.

We were initiated in neurologist's offices and NICU units, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber telephone calls, consultations, evaluations, blood tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things were fine. We were pregnant, or we had just given birth, or we were nursing our newborn, or we were playing with our toddler. Yes, one minute everything was fine. Then, whether it happened in an instant, as it often does, or over the course of a few weeks or months, our entire lives changed. Something wasn't quite right. Then we found ourselves mothers of children with special needs.

We are united, we sisters, regardless of the diversity of our children's special needs. Some of our children undergo chemotherapy. Some need respirators and ventilators. Some are unable to talk, some are unable to walk. Some eat through feeding tubes. Some live in a different world. We do not discriminate against those mothers whose children's needs are not as "special" as our child's. We have mutual respect and empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with whatever materials we could find. We know "the" specialists in the field. We know "the" neurologists, "the" hospitals, "the" wonder drugs, "the" treatments. We know "the" tests that need to be done, we know "the" degenerative and progressive diseases and we hold our breath while our children are tested for them. Without formal education, we could become board certified in neurology, endocrinology, and psychiatry.

We have taken on our insurance companies and school boards to get what our children need to survive, and to flourish. We have prevailed upon the State to include augmentative communication devices in special education classes and mainstream schools for our children with cerebral palsy. We have labored to prove to insurance companies the medical necessity of gait trainers and other adaptive equipment for our children with spinal cord defects. We have sued municipalities to have our children properly classified so they could receive education and evaluation commensurate with their diagnosis.

We have learned to deal with the rest of the world, even if that means walking away from it. We have tolerated scorn in supermarkets during "tantrums" and gritted our teeth while discipline was advocated by the person behind us on line. We have tolerated inane suggestions and home remedies from well-meaning strangers. We have tolerated mothers of children without special needs complaining about chicken pox and ear infections. We have learned that many of our closest friends can't understand what it's like to be in our sorority, and don't even want to try.

We have our own personal copies of Emily Perl Kingsley's "A Trip To Holland" and Erma Bombeck's "The Special Mother." We keep them by our bedside and read and reread them during our toughest hours.

We have coped with holidays. We have found ways to get our physically handicapped children to the neighbors' front doors on Halloween, and we have found ways to help our deaf children form the words, "trick or treat." We have accepted that our children with sensory dysfunction will never wear velvet or lace on Christmas. We have painted a canvas of lights and a blazing Yule log with our words for our blind children. We have pureed turkey on Thanksgiving. We have bought white chocolate bunnies for Easter. And all the while, we have tried to create a festive atmosphere for the rest of our family.

We've gotten up every morning since our journey began wondering how we'd make it through another day, and gone to bed every evening not sure how we did it.

We've mourned the fact that we never got to relax and sip red wine in Italy. We've mourned the fact that our trip to Holland has required much more baggage than we ever imagined when we first visited the travel agent. And we've mourned because we left for the airport without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never stop believing. Our love for our special children and our belief in all that they will achieve in life knows no bounds. We dream of them scoring touchdowns and extra points and home runs. We visualize them running sprints and marathons. We dream of them planting vegetable seeds, riding horses and chopping down trees. We hear their angelic voices singing Christmas carols. We see their palettes smeared with watercolors, and their fingers flying over ivory keys in a concert hall. We are amazed at the grace of their pirouettes. We never, never stop believing in all they will accomplish as they pass through this world.

But in the meantime, my sisters, the most important thing we do, is hold tight to their little hands as together, we special mothers and our special children, reach for the stars.
_________________

can I really do this?

2009-05-06T18:47:00.000-07:00

I had a real "shake me up" moment this afternoon, while Mr. L and I were at the therapy clinic where he goes weekly for a social skills/speech therapy group session. The mom of the other group member (M) needed to talk privately to the therapist, so Mr. L and I were sitting in the floor in the lobby playing a board game with M. Things were going well, I was feeling pretty good about my ability to facilitate their interaction and keep things running smoothly......then, another therapist walked in from outside along with her patient, a boy I'd not seen before.

Trust me when I say that this boy, approximately age 11 I'd guess, has autism. Pretty severely, based on what I saw. And something, I don't know what, was really upsetting and frustrating him. He was very reluctant to even come inside, and once he got in the door it just escalated. He didn't want to go into any therapy room, even the "gym" where they have the swings, balls, etc for sensory work. And he was making loud noises, VERY loud, and eventually screaming and it just sounded so painful and sad.

Well, the two boys in our group, Mr. L among them, were not happy about the noise the other boy was making. They were alternately covering their ears, making faces, or saying things like "why is he being so loud?", "what's going on with him?", "he needs to stop that", etc. I tried as much as I could to stop those kind of comments, and to tell them that everything was ok but that the boy just seemed to feel frustrated. Truthfully though, his screaming was pretty darn loud, ear-piercingly loud at times. And the therapist was trying hard, talking to him in a calming voice, reassuring him that they could go do things he liked (i.e. swing etc) but nothing was working.

The boy was about the same size as the therapist, meaning it's not like she could physically assist him into that room or do much to help when he throws himself onto the floor, which he did. Then he started hitting himself in the head, and she kept telling him "no, we don't do that, please stop" etc. I have no way to know any details about the boy's diagnosis or situation, but I think I know an ASD meltdown when I see one, and I was witnessing one today.

As the episode progressed, I started to think.....oh my goodness, what if that therapist is me in a couple of years? Listening to that child's screams was just heart-breaking to me. I felt my heart rate go up, and I felt at least some degree of the worry, frustration, anguish, fear and the myriad of other emotions that I bet that child's therapists and family members feel often. Because I am an ASD mom too, and have suffered through public meltdowns when nothing you do works and you feel so helpless and hopeless.

How will I manage this when I'm supposed to deal with it in a professional context? When it's someone else's child, and I don't know the little tricks and strategies that sometimes work to avert meltdowns for him or her. If just being a "fly on the wall" as I was today got my pulse racing and my heart aching, how will I function and keep it together as a therapist? I really was almost in tears today, watching and listening to that young man and that therapist. And so I started wondering whether I've made a terrible mistake in deciding to go down this career path......have I set myself up for failure, will it be too hard to maintain the professional demeanor and "detachment" because I won't just be a therapist but an ASD mom as well? Nothing I can do or would ever do will change that fact, nothing can take away what I've learned and felt in the past 7 years of parenting Mr. L. But will that very experience be my downfall and prevent me from success in Music Therapy? I thought it was going to be my big asset, and now I'm wondering if it's a liability instead.

20 years, really?

2009-05-05T10:00:00.000-07:00

A certain realization kind of smacked me in the face a few days ago.......this month marks the 20th year since my graduation from high school. OMG, are you serious? I'm 37, turning 38 this summer, and it seems like those 20 years went by in about the time it takes you to snap your fingers.

When you see sitcom episodes about 20th high school reunions, the people have always seemed so.........so.........well, so old. And I don't feel like that, I really don't. It seems impossible that the Class of 1989 at BSHS can really have walked across that windy football field 20 years ago to receive our diplomas. I was 5th in my class, and back then (see, I do sound old) it was accepted practice for the 5th ranking graduate at our school to read the Benediction prayer at the close of the ceremony. My lovely flat-topped cap with its gold tassel nearly blew off quite a few times while I was speaking, and I had to hold on *tightly* to my note cards to keep from losing them.

And let's don't even talk about college graduation and the fact that it was 16 years ago.......seems equally unreal to me; it can't have been that long ago. I really don't feel like I'm all that much older than the students I teach, but in reality, I am. And the gray hairs I see in the mirror are proof. Plus, the other day one of my high school freshmen told me that her Mom is 41....ok, there is NO freakin way I can imagine myself with a 9th grader right now. 2nd grade is tough enough, thank you.

K and I went to our 10th reunions (he's the same age, went to our rival school across town!), and they were fine but I don't see a reason to go to the 20th. If we even have one, that is; I've heard nothing so far about anything being planned, and neither has he for his school. Plus, with the advent of Facebook and its "trickle up" effect, nearly all of the people I might be interested to see and catch up with at a reunion are now my FB friends and I can "see" them and talk to them whenever I want. K's theory is that Facebook will doom many high school reunions.....no one will choose to go because there's really no need.

So anyway, Happy 20th to all of you Class of '89 kids out there, from my school and everywhere else.......and just for fun, take a look at your old yearbooks and get a good laugh looking at our old clothes and hairstyles. ;)

the brilliance of the blogosphere

2009-05-02T17:33:00.001-07:00

First of all, I love that word....."blogosphere". Just thought I'd share that. ;)

Second, I find myself so humbled by the great writing and brilliant insights of several of my blogging friends today, so I decided I'd defer to them and share their posts with you in case you hadn't seen them. These 3 are posts that really speak to me, about topics over which I am very passionate but maybe just don't express myself as wonderfully as these ladies have. Enjoy!

Kyra at Hopeful Parents wrote here about the so-called "neurodiversity" debate in the autism community. Are we trying to "cure" autism, can it even be cured? Or are we, as the ASD parents, supposed to be embracing the autism because it's who our children are and can never be changed?

Random Ramblings of a Mom has a recent post that's just so incredibly applicable to my world........you'll see why.

I "found" Alexa (from FlotsamBlog) after hearing her read a blog post aloud on NPR one morning, and I'm so glad I did. Wonderful writer, wonderful lady with a beautiful baby girl and her very own angel in Heaven as well. Here she writes eloquently on another topic close to my heart, though it's one I don't speak of much nowadays, and many of you might not even have known it affected me at all......infertility. Thanks, Alexa, for putting into words what so many of us feel.

Hopefully I'll feel inspired to write something original of my own again asap.......that is, unless you're so in love with these other writers (like I am) that you don't want to hear little old me anymore!

I'm so over this school year

2009-04-30T06:59:00.000-07:00

...and ready for the next chapter of my life. :) It feels like it's already happening, which is even better. For music teachers, the big hurdle at the end of the year is the Spring Concert, which for me took place last Sunday. It was alright; nothing to write home about, but respectable and certainly better than I expected. And the best part? IT'S OVER!!!!!!! So now, we tread water for the next 2 weeks, and I'm outta here. Plus, the cloud that was hanging over my head is beginning to recede..........

That's really how it feels. Like I was in a dark cave somewhere, and winding my way through, not sure of the direction I was heading or where the exit was, but now I'm seeing that light and knowing I'm going the right way. Going with Mr. Ls class on a field trip tomorrow for Career Day, and then with them for another one the following Friday to a local state park. Going to Energizer's K4 graduation the week after that! Mr. L has his end of the year IEP meeting, I'm going to be meeting the principal of their school to request next year's teachers, etc etc etc.........finally, getting (again) to do those things that mean so much more to me, that matter more and that make me feel like I'm being the Mom I want to be, if that makes sense. :)

There's a thing or two about this place that I'll miss, but in general I am extremely burned out around here and know it was right for me to go at this point. The thought of being here again literally hurts my heart, so I know I've made the right choice. :) :) :)

Do you hear me sighing?

2009-04-25T20:06:00.000-07:00

*sigh* What was I thinking? This always seems to happen, just when I let myself get too comfortable......

When I was taking AP English class in high school, our teacher told us something that I have always remembered, and it comes to mind tonight: She was about the same age as our mothers were at that time, and used to talk to us, advise us, etc like a mother would, in some ways. Most of us were new drivers, and she gave us advice about driving.....saying that when you start getting too confident, too comfortable at your driving, that's when you need to watch out because you'll end up in an accident. Always have to keep your guard up, don't get complacent, or face the consequences, basically.

I guess I didn't learn the lesson from Mrs. Fowler, or at least not when it comes to being an autism-spectrum parent. Instead, I keep making the same stupid mistake over and over and over again. :( People that know me or have read this blog for a while should roll their eyes at this, because it's the same old crap you've heard before. You'd think I'd learn.

So, every time Mr. L gets in a new situation, I set myself up for disappointment. Because he's doing so well, I stupidly think he can "pass" for being a typical kid..........pass as "non autistic" and that we can get by without telling people like Sunday school teachers, sports coaches, etc. I just want to blend in, is that so crazy? Just to be the regular old parent with good, rock-solid regular kids, not the one who's hanging on by a thread the way I am and whose next meltdown could be as near as the next pitch of a baseball.

Saturday was as prime an example of my idiocy as you could hope for. Living in a crazy-house dream world, I somehow thought that because last week's baseball game went so well, we could have hope for a mostly autism-free season this year, unlike the last two years. Yeah, right. Who am I kidding? Obviously, only myself, and today proves it. We played the toughest team in the league, knew we'd lose, but didn't know how Mr. L would completely meltdown when he got thrown out at first base and ended up 0 for 2 on the day.

Not sure if I can remember the last time he melted down this severely. It was horrid, he was not just crying, not just sobbing, but loudly moaning in a repetitive rhythm like "AAAH, AAAH, AAAH, AAAH, AAAH, AAAH........" and I'd say that went on for maybe 15 minutes. He was balling up his fists and hitting anything in sight, including his dad and the car doors, inside and out. Refused to go back out into the field with his team to finish the game, refused to go out for the post-game high fives with the other team. And the more anyone tried to help him, the worse it got.

One of the worst parts for me, though, is the sympathy and pity of others. And how do I explain why he's doing this? Another mom from the team latched on to me and tried valiantly to help.....gathering up my stuff so we could leave, trying to talk to him and help convince him how well he'd done, gave me a hug, even told me "God gave him to you for a reason". But as soon as she started asking to help and doing things for me, the water works opened and I started crying myself.

Now, looking back, I'm a mixture of sad and angry. Not angry at him, but at myself for the stupidity of it all. Was it stupid to even try to do coach pitch baseball? He's never dealt with "outs" before, never had winners and losers, etc. Last week was nice, when they won, but we know there will also be some losses and if they are anything like today, I know I just cannot take it emotionally. And angry about the pathetic part of me that just wants to blend in with the other parents, maybe make some new friends who don't (yet) see the big multi-colored puzzle-piece-shaped A on my chest. But again, who am I kidding? Most kids go through upsetting situations, like losing a game, etc, and they might be upset, but they learn from that. They grow over time, they mature, they learn how to cope with it and it's not so tough after a while. ASD kids.....I'm not so sure. He lives so "in the moment" much of the time, and even as good as he's gotten at talking the talk of "it's ok if we lose", when it happens, you see the result and it is most definitely NOT ok.

The sighs are still echoing over the Atlantic, even now, and this happened 48 hours ago. Sighs tinged with tears, and with frustration, and loss, and embarrassment too, as much as it pains me to say that. When a parent asked me "is there anything I can do?" while Mr. L screamed and sobbed in my arms, I just shook my head no and cried right along with him. Just closed my eyes and tried to shut out the world, to not notice the people looking at us (or trying hard NOT to look) and the way in which the team and parents quickly dispersed and got out of there....no hanging around after the game, no chatting, etc.

I guess there's not much else to say. We're gonna plod right on with the baseball season, hoping with every cell in my body that he gets on base next Saturday so that we can avoid a repeat of the meltdown that came last time. And knowing that no one out there on that field understands, no one realizes what we go through and what it takes for Mr. L and our whole family to get out there every time.....working harder than anyone else just to keep up, just to look "normal" and even to come close to a typical baseball experience. And feeling like a faker the whole time too.

a moment of wallowing

2009-04-21T19:36:00.000-07:00

Not even sure why I want to type this out, but I guess it's just something I need to say, and wallow in it for a moment, then move on. So here goes.....

A former co-worker (from the pre-kids days) sent me an email yesterday. We've stayed somewhat in touch, I see her periodically even though now we have next to nothing in common. She still teaches with "big mega Band program", isn't married, no kids, Band is her life in a lot of ways. Oh, and 2008 was a horrendous and tragic year for her, in which she was diagnosed with breast cancer, had a mastectomy, and lost both of her elderly parents within a month of each other. I respect her very much, both as a teacher and as a person, but I only see or talk to her on occasion now.

So, back to that email. It was a forwarded thing, with the title line "12 women". It was really like an old fashioned chain letter, instructing you to send it on within a certain amount of time, etc. Send it to 12 women who have "made a difference in your life" and are very special to you and close to you. I normally don't even give a second thought to these things, just click "delete", but because of the respect I have for this woman, I decided to follow the directions and forward it on. I was touched to have been included in her "12 women", so I decided to create my own.

Know how far I got? 5. No, wait, I think it was 6. So instead of copying and pasting the contents of the email, I just clicked "cancel" and closed the message I'd started. The fact is that, for various reasons, I feel like I really don't have local friends. Acquaintances, yes, plenty. Colleagues, sure. People I can sit next to in choir rehearsal and chat with afterwards, definitely. But local friends? You know, people who might actually call or email on occasion, want to get together or just chat with you. People who remember that you exist, and who choose to take time to make (or keep) a connection with you that's worth maintaining.

Internet friends are wonderful, but I feel like I've been so wrapped up in my own soul-searching crap over the last few months that I've neglected them as well. Which means that now I'm feeling even more isolated. 300 "friends" learn random tidbits of stuff about me every day on Facebook, but I'd say that essentially none of them really know much about me that is substantive or what goes below the surface.

So who do I share that with? It might seem silly, but I'm so incredibly tired of feeling this way and wondering why I have no strong, long-lasting and meaningful friendships. I read the blog posts of others, the stories they post on forums about "girls' weekend" trips, shopping dates, meeting for coffee or just doing whatever......and I have absolutely none of that. None. Great way to make a girl feel pathetic, I'll tell you that for sure.

Oh, and to top it all off, I'm about to abandon my work relationships, superficial though they may be, and enter a world populated by 19 and 20 year olds. Joy, joy. Wonder how many of them have ever changed a diaper, or dealt with infertility, preeclampsia or the autism spectrum?

I told you I'd be wallowing, didn't I? My wallowing sessions are typically worse when I write late at night, and it's 11:12 pm now, so draw your own conclusion. But I had to get this out, even though it hurts to do so and is embarrassing too. I just don't want to keep feeling alone like this, even feeling like my husband has more real friends than I do and resenting that fact. Am I really that horrible to be around? Is there something I could do differently? (reminder: suggestions must be appropriate and usable by someone who has no free time, has 2 children in therapy, and who is about to re-enter college). Ok, talk amongst yourselves.........

2 posts in one day???

2009-04-18T19:23:00.000-07:00

Yeah, yeah, I know, what is the world coming to when I post twice in the same day, right? LOL!!!!!!!! Well, I owed you the book review post, and since the fam is asleep already I've got a little extra computer time, so here ya go---a bonus post which I promise will be much less intellectual and psychological, etc. ;)

Mr. L played his first coach-pitch baseball game today. It was nearly over before it started, due to an unfortunate bump on his head from a baseball during the pre-game warmups. The coaches, dads, and boys were standing in 2 lines facing each other, throwing balls back and forth, and of course no one gets hit except MY child, my autism-spectrum/uber-sensitive child. I look over and he's got his back to the field, wiping away tears and sobbing and I thought we might be truly screwed for the day. If he gets upset enough, sometimes we end up just having to bag whatever activity we were trying to do, but thankfully he and I pulled it together with some deep breaths and got him back into line. The game started soon after, and was a resounding success from that point on, thank God.

And since it's not often that I get to spout off in the style of a bragging NT parent, give me a moment to revel in the experience, ok? ;) He had 3 at-bats, and went 2 for 3. Came in to score both times too, and the team won 19-6! Oh, and he volunteered to be the catcher, to my surprise. Other than the fact that the catcher gear is heavy and HOT, I think this position will be a good one for him. (think padding, protection from pain when balls hit you) So hey, maybe we've got a future Mike Piazza or Jorge Posada (pro catchers) on our hands.....

The rest of the afternoon, in the gloriously cool but oh-too-brief Lowcountry Spring weather, was spent on yardwork stuff. I got some new pine straw to replenish last year's in the front flower beds, bought an oleander plant which I hope will 1) bloom prettily and 2) live more than 5 minutes. I kill every plant I touch, seemingly, but I keep on trying. Also decided the kids and I would try a mini-garden, so I bought a big round planter, and a packet of yellow squash seeds. That, combined with a bag of Miracle-Gro seed starter soil, hopefully will produce something worth eating in a few weeks. Hopefully. Of course, Energizer's reaction to hearing that we were planting squash was basically "ewwwwwwww, I don't like squash", but maybe we'll get some science knowledge out of the whole thing, if nothing else.

Glasser's book, part 2

2009-04-18T18:34:00.000-07:00

Here it is, the much-anticipated second part of my discussion/review of the book "Transforming the Difficult Child" by Howard Glasser. I'm almost halfway through the book-on-tape now, and have gathered some more thoughts to share with you.

Lots of the things he says hit home for me, but here's one that really struck me hard: He asks the listener to think about a time when someone's complimented you, on your hair, or weight loss, or clothes, etc. For most of us, if self-esteem is any kind of issue for you, compliments are very hard to take, and they end up "hitting our radar" as he says. Meaning, those inner voices of doubt jump up and argue against the kind things that others say......."she said I look nice in this dress, but I know I really look fat in it", or "what do you mean my hair looks nice today? Does it normally look crappy?" etc.

He wants the things we say to our challenging kids to "fly under the radar", meaning that the statements are indisputable facts, not opinions that the child can argue or disagree with (even in his mind). I don't think I'm explaining this well, but I'll keep trying..........

He gives the example of an art teacher, who walks around the room making 2 or 3 sentence comments to each child, something like this: "I see you've taken crayons and used them to create a rainbow pattern. With some of the colors, you pressed down really hard, and with others you only traced lightly. Now, it looks like you're starting to make some pink and yellow flowers. See ya later!"

The premise behind this, according to Glasser, is that so many of these challenging kids are used to being singled out and having attention and energy focused on them when they are "bad"/misbehaving/acting up/breaking rules/causing trouble, whatever. Consequently, they end up believing that this is the only kind of attention they can get, or are worthy of. So, if you (in trying to remedy this and being positive, etc) go overboard with compliments "I LOVE your picture, it's beautiful, it's fabulous" etc, the radar will go off in their minds because they "know" they're not good artists, not worthy of praise, etc.

But, the things the teacher said above were just facts, not compliments. But she spent time, energy, attention on the child in a way he couldn't argue with or dispute. And if the theory proves true, over time with repeated interactions like this, the child begins to realize that he can receive attention and energy in a positive way and he will strive for it once he is "retrained" to do so.

I'm trying, slowly but surely, to integrate some of these things into what I do with the boys at home. It's tough, because it's completely opposite of the way I've always handled things, both at home and at school in my teaching. I'm trying very hard to catch those moments when Energizer is 1) actively doing something positive, helpful, cooperative, etc or 2) avoiding a negative behavior, resisting the urge to do something that he might otherwise do but I've told him not to (i.e. hitting etc).....and then to say the appropriate Glasser-ism when those moments arise. And saying it with high energy, lots of positive attention and specificity.....not just "Good job" but more like "Good job, E, I love how you were so flexible with Mr. L and shared your treat with him, that was very sweet and thoughtful" etc. Sounds and feels dorky when you first start it, but it's getting a little easier now.

To be continued again when he reaches the part of the book which tells what to do and how to react when your child, despite your positive parenting interventions, still has wild, manic, even violent outbursts, can't or won't listen, etc. This oughta be good...........

point, counterpoint

2009-04-17T08:23:00.000-07:00

So, I got a good idea recently from a blogger friend, PE survivor, etc.....hope she doesn't mind if I borrow it for one example of my own.

Last year at this time, I posted about a fabulous job that K was interviewing for, and we really wanted him to get it. He even got a second interview, and was apparently close in the running......but didn't get it. The job is an administrative/supervisor position in his school district, over all of the Performing Arts teachers. But he didn't get it, and stayed at his same school, teaching music.

THIS year at this time, we hear that the district's budget woes are so bad that they'll be cutting positions for next year, and among the first on the chopping block are the administrative supervisors. Yep, that same job that K didn't get might now be cut completely. Changes the perspective a bit, doesn't it?

I'm so blessed

2009-04-14T20:19:00.000-07:00

I know, I owe you the continuation of my review on "Transforming the Difficult Child", and I promise I'll do it......after all, tomorrow is another day, as a smart lady used to say. But in the meantime, and before I turn in tonight, I just need a semi-public place to thank God for his many blessings, and foremost among them being the lives of my sons.

I was just looking over the blogs I follow, and in the space of 10 minutes I read posts about 2 different preemies.......one of whom has died at only 5 months old, complications from chronic lung disease, and another who has been readmitted to the hospital for lung issues and low sats and is now in the PICU. And both of these are girls! If you know about preemies, you understand the significance of the gender.

Meanwhile, both of my "wimpy white boys" came home before their due dates, and were never readmitted. Never got RSV. Have never had surgeries other than for ear tubes. They eat normally, they talk, they walk, they run, they play. Sometimes they drive me crazy too, like most kids do to their parents, but stories like I read tonight remind me how amazingly blessed I am that my preemies had such wonderful and relatively healthy outcomes.

So tonight, I thank God for his goodness, and I pray for the families of Soli and Maddie, that God will strengthen them in these difficult times and will bring Soli home again (and healthy) very soon. I think I'll go give the boys an extra kiss while they sleep, and just sit and watch them breathe for a while. Can't ever take breathing for granted where preemies are concerned.....

it's really hard to understand....

2009-04-08T07:24:00.000-07:00

....unless you live in our house for a few days, how tough the day-to-day existence can be with little Energizer Bunny. We had the pleasure recently of hosting my Mom (Nana) at our house for a whole two weeks; she just left on Monday to go back home. The kids loved seeing her, and we greatly appreciated the babysitting/dinner cooking/picking up from school help which we desperately needed, but I think her visit had an additional side effect too. She got to see, up close and personal, what severe ADHD with impulse control and aggression issues looks and feels like.

I've thought that, on occasion, she didn't understand or didn't take me seriously when I would complain about our struggles with his behavior. Maybe she didn't understand why we chose to put a 4 year old on meds. She never said so, not to me anyway, but I bet she questioned it. Hell, I questioned it, and still do once in a while, but then days like last Friday come along and I know that we'd all be "committed" by now if not for the blessed Focalin.

I try so hard to explain this to people, but it's hard to grasp until you see it---Energizer has these "manic" periods, that's the only way I know to describe it. He won't/can't sit still at all, everything's running, jumping, climbing, and laughing. It's the laughing that pushes my buttons. I know it shouldn't, but the teacher in me gets riled up every time I see a 5 year old who isn't listening, won't stop what he's doing, and laughs and smirks at your every attempt at "discipline". It's almost like he's temporarily possessed or something....anyone know an exorcist? I'm kidding of course, but I use the word possessed because during those periods, it's like you're not seeing the real him. The real him comes a few minutes later, after the ______________ (time out, occasional spanking, removal of toys or privileges etc) has managed to get him upset enough to snap out of the manic state and become sad and remorseful. And it's not fake, I'm sure of that. He's truly sorry, truly sad and is just so darn pitiful when he's crying and hugging me....."Mom, I'm so so so sorry" etc etc etc.

Sometimes I just hold him and cry right along with him, because I'm at such a loss to know what I could do any differently. How much of this is has a diagnosable cause, and how much is failure in parenting? How much is due to the #*@& preeclampsia, which caused his little body to miss out on 3 months of typical fetal development, and how much is just plain old spunky 5 year old boy attitude that needs to be taken down a peg and taught right from wrong?

So, a couple of months ago I ordered a book on tape that I'd seen rave reviews about online. It was recommended highly by a blogger that I trust (although for the life of me I can't find that post now, so sorry I can't put a link here), and it's called "Transforming the Difficult Child: The Nurtured Heart Approach" , by Howard Glasser. As soon as it arrived, I put it into the van's tape player (yeah, yeah, I know, it's the 21st century already, but my van hasn't caught up yet) and began listening to it on my commute to and from school. After a few listening sessions, I got sidetracked, got busy, decided to completely change my life path........and stopped listening. But I pulled the tape back out yesterday and started it over. I'd never finished it the first time, but am determined to do so now.

But you know what? I've spent tons of money on books on tape and books made out of trees over the last few years, and more often than not, I read it, think it's great and has good ideas I can use etc.......and then do next to nothing with it in reality. Life gets in the way. I'm busy, the dirty laundry pile is taller than I am, the cat just threw up on the carpet, I need 25 cupcakes for Mr. L's class tomorrow, I have 2 rehearsals tonight, etc.......when does that leave time to completely transform the way I interact with my child? Glasser's ideas make sense, I feel sure the idea works for a lot of kids, but it's so opposite of everything most parents do and most of how we were raised ourselves.

Speaking of life in the way....I'm at school now--last day before Spring Break, hallelujah--and I've gotta get some things done before a class comes in very soon. Continued thoughts about Glasser's approach in my next post, so stay tuned! :)

well, I'm doing it

2009-04-07T08:20:00.000-07:00

Yep, that's what I said. Still don't half believe it myself, and I keep having to remind my brain and my heart that this is what's happening......but I'm going back to college next fall, to study music therapy. So everyone cheer, ok, because you won't have to hear my whining about the decision-making process anymore! And there was much rejoicing!!!!!!!!!!!

I thought about something earlier this morning: I've been wanting to be a Band director since I was in the 7th grade, which means basically 25 years. (!) Never any questioning it, never any thought of doing anything else once I decided that. But so many things in my adult life (at least the last 8-10 years) have gone entirely differently than I ever would have expected, so why should this be any different?

In more mundane news........DH is taking Mr. Literal to an NBA basketball game tonight. The NBA, and basketball in general, has become his newest obsession over the last few months. Imagine knowing that the one thing which will calm your child after a meltdown is turning on SportsCenter to watch NBA highlights. So, DH had the idea that he could take Mr. L to see the Charlotte Bobcats--our nearest team--if they had a home game this week, during Spring Break. And they do, against the 76ers. So they're headed out tonight for a special bonding time together, and Energizer is in the Upstate with grandparents. Me? I'm still in school---last day before MY break is tomorrow. The house is soooooo quiet. But hey, I slept until 7 am, then pushed snooze a time or two before getting up and taking a leisurely shower. Can't remember the last time I've done that. They'll all be home tomorrow by the time I get home from school, and then we've got until Sunday to all be on break together. The big question now is: What will I do next week when I'm on break and they're back in school? I'm thinking some major house cleaning/reorganizing/decluttering is in order. Sounds like tons of fun, huh?

a good day, at least so far

2009-03-27T08:44:00.000-07:00

It's dark and dreary outside, severe weather is headed this way, but I feel remarkably good about life in general today. :) Our school is having a blood drive today, and I donated for the first time in a while. DH and I have been semi-regular donors ever since Energizer was born and needed so many transfusions. I'm B positive, which apparently is a much-needed blood type. It was easy and quick....hardly felt the needle, and the whole experience was good. Oh, and they had to check my BP before I was approved to give......can you say 122/75, baby! :) :) :) That's what I'm talking about!

And it's Friday, thank God, so that means no rehearsals of any kind today, YIPPEE!!!!!!!! And we're taking the family, Nana included, out to a seafood dinner tonight, rain or shine. We deserve it after this insane week.

And lastly, I tried on an 12 year old dress last night, that I've worn a grand total of once. It was a bridesmaid dress, that I wore in my cousin's wedding in 1997. Floor length, black with a white/sequined design across the front at the neckline. Very elegant and formal, which is just what I need for the community chorus concert I'm in tomorrow night! I had no idea whether I could get into the dress or not, but I did! Ok, it was snug but it will work, and I can't wait to wear it. :) :) :) Now if I could just make this major life decision.......

words of wisdom from a stranger

2009-03-25T06:33:00.001-07:00

I mentioned a while back that I'd started posting on a new blog for parents of special-needs kids, called Hopeful Parents. Anyway, yesterday was my day of the month to contribute, so I wrote yet another rambling saga about my decision-making process regarding my job, going back to college, etc.

Several readers of that blog have commented on my post, and I really don't "know" any of those ladies except for one. I would guess that everyone that reads this blog knows me, at least cyber-knows me, and that's cool because that's how I want it for the most part. Plus, how would anyone else find me here? But at Hopeful Parents, they're actively promoting the site and trying to grow it. So, my writing is seen by a lot more people over there, and I get a different collection of perspectives, etc.

One lady, who's obviously very smart and insightful, left a great comment yesterday, and I wanted to share a bit of it with you. This is something that really just jumped out at me because it rings true for where I am right now:

"It seems that the universe loves to work with just enough light for the step right in front of us."

That, in a nutshell, is my problem. I feel like I can't see further than just that next step, so it's nearly impossible to know if the steps beyond that are safe and if that's in fact where I want to go. It's dark out there, guys, and I am not a fan of the dark. I want to trust that, even in the darkness, the areas I'd step into are the right ones for me, but how can I be sure? Makes the oldies-radio-listening nerd in me think of an apropos song lyric:
"How can I be sure
In a world that's constantly changing?"

That, my friends, is the question. And the answer has to be either found or guessed at in the next couple of days. Keep me in your thoughts, ok? I promise to stop blogging endlessly about this as soon as I come to some kind of decision.

well, here I go

2009-03-17T18:21:00.000-07:00

Tomorrow's the big day......meeting at the college with the head of the Music Therapy division of the school of music. OMG, am I really doing this? I keep telling myself I'm just going so I can officially rule out the idea, so that I can answer enough of my questions to know that this really won't work, etc. But inside, secretly, I'm still so excited about the possibilities, and hoping that maybe.....just maybe......she'll answer my questions so that I know this WILL work.

I've been working on a list for days, of my questions and concerns. I still feel sure I'll forget something, or get sidetracked on 1 or 2 subjects and end up not getting to everything I wanted to ask. *sigh* Now if I can just remember to print the thing out and take it with me when I go.

I think I've mentioned before that I'm looking for a sign here, looking for someone to just tell me what to do and which direction to turn. Well, last week at school I may have gotten one.......you tell me what you think. The school is a Catholic school, in which we have a prayer over the intercom every morning and afternoon. The morning prayer had something in it that I can't quote exactly, but essentially it was asking God to help us be able to listen and respond to his call, and to go in the direction that He wants us to go. And I want to, I really do. Is this it, this whole insane music therapy idea? My kids will only be young once, so I can't mess this up, can't get myself involved in something that will take me away from them even MORE during these crucial years. And last night, I was at a rehearsal while DH did baths, homework, pjs, and bedtime. This morning, he shares the story of how badly it went, with Energizer ending up crawling completely under his bed comforter (NOT at bedtime) and crying, saying "I miss Mom". Great, just twist the knife, why don't you?

*sigh* X 1,000,000,000,000..............

Interesting Saturday

2009-03-14T19:20:00.000-07:00

Man, I'm exhausted. But yes, I'm sitting here blogging and reading the bloggings of others, rather than going to bed. Deal with it, LOL!

First of all, Energizer was in RARE form today. We've not had many days like this since he started on medicine for the adHd. And yes, we did give it to him today....believe me, I went back and double checked the pill bottle. :( Couldn't stay still at all, wasn't listening, defiant, uncooperative, in other words, a nightmare was had by all for a large portion of the day. *sigh*

But, the morning was nice. We went to the Gibbes Museum of Art in downtown Charleston, which I'm embarrassed to say I'd never been to before, even after living here nearly 16 years. Ooops. We all really enjoyed it, and it was Community Day which meant admission was free---can't get much better than that. There were snacks and crafts for the kids, live music outside, very very nice and I'm glad we went.

Then, I loaded up on summer clothes for Mr. L at Old Navy. Got a great coupon in the mail earlier this week---30% off of your whole purchase! So I got him 3 t shirts, a polo shirt, 2 pairs of shorts, a pair of khaki dress pants, a polo for myself, and one for Energizer...and my grand total spent was $72! Average of about $8 per item--not bad, huh? I love getting great deals like that, feeling like I beat the system, LOL!

Oh, one last bit of news...it's official, I'm on BP meds. Atenolol, to be exact. You PE survivors will probably recognize that name, it's pretty common. I finally was persuaded to obtain a family doctor, since I've never really had one. My first visit to her was on Friday, and BP was 154/104. Lovely. But in a way I'm glad, because I was afraid the doc would be reluctant to put me on medication 5 minutes after meeting me. But considering the way my pressure looked in her office, she didn't hesitate. Oh, but she did tell me I was "just a baby" and too young to be having BPs like that. Thanks, preeclampsia, yet another triumph for you. Yay.

I"ve got to get out of here

2009-03-12T06:11:00.001-07:00

I really have to get out of this current job, I mean it this time. I just drag myself here every day, dreading the actual job of teaching, and that's not a good situation for one who is employed to be a teacher. Especially the chorus classes........they're not having fun, neither am I, although I put on a good show as best I can. :(

Update on the music therapy front: I'm scheduling a meeting with the chairman of that dept. at the local college, probably next Wednesday afternoon. Wish me luck! I'm going to start making a list of what I need to ask her so I can make the visit worthwhile........

grasping at straws

2009-03-06T06:43:00.000-08:00

I feel like I have absolutely no idea what I want to be when I grow up.

Ok, this is the part where you say "ummm, how old are you again?" and I reply, "37 1/2, thank you". But my grown up life has been separated into 2 parts, maybe even more parts depending on how you analyze it.

Part 1: Band Director Queen
BDQ was all about teaching Band, 24/7. Everything I did, before and after marriage really, revolved around that. Our schedule, our activities, our everything was about Band. It came first.

Part 2: Mom
I knew I couldn't maintain that same kind of intensity with my work, that same kind of schedule, once we started our family. So, I purposefully resigned from my teaching job at the end of a year when I was only about 4 mos. pregnant. Little did I know that only 10 weeks later, Mr. Literal would make his very-early entrance into the world. I did the SAHM thing for 2 years, but Mr. L was a high-maintenance child and it was just not a good fit for me emotionally to do that.

Part 2-A: Mom and part time teacher
When Mr. L was 2, he started preschool and I went "back to work", although it was nothing like I'd done before. I'd drive nearly an hour round trip to teach a "Band" class that lasted for 45 minutes. I enjoyed it at first, it was nice to get a little extra $ and get to keep my hand in the Band world, so to speak. Energizer came along the following year, but I kept doing the part time teacher thing too. It's gotten rougher and less enjoyable ever since.

Now, it's time for Part 3. I'm sure of that, sure that I'm not happy where I am but not sure where Part 3 is going to take me. I really feel like I'm a band director these days in name only, and I hate that. I'm realizing that, for me, I'm either BDQ or I need to be out of the Band stuff. There can't be a suitable in-between option. So it means I move on to something different......but what? I've thought about teaching music in another way, like maybe elementary school, but I just don't know.

The last couple of weeks, I've begun to think about options that move me more into the realm of special needs kids, since that's where my heart is nowadays anyway. I never knew anything about that world before having my own kids, and I freely admit it. But now that I do, it's what I think about, what I'm passionate about and where (I think) I want to be from this point on. What seems like a perfect fit, combining both my experience/love for music with the world of special needs, would be to do Music Therapy. I don't know tons about it yet, but I'm learning and hearing good things.

But guess what that means? Yep, going back to school, at least to some extent. And tuition, college loans, debt. (at this point, refer back to original paragraph in which I revealed my age) Do I really want to do that now? Is that fair to my family, etc? Can we afford it? I'm scared of the whole idea, and yet exhilarated at the same time. Could I manage to work a bit on the side while in school, teach lessons or do master classes etc to keep using my Band knowledge? Will the schoolwork be too time consuming, keeping me away from my own kids during these formative years?

Too many decisions, too many variables!!!!!!! Will someone (hint, hint) please just TELL me what to do? Help me to know what choice to make, and that it is the right one. Oh, and soon would be nice too. I've got to turn in a "letter of intent" to tell my current school what my plans are for next year. Plus, I'm worrying myself sick, literally. I've had more colds this winter than any other time in my life. :(

asking for prayers

2009-02-24T19:40:00.001-08:00

....not for me, but for a dear friend who is very ill. She's a fellow "parent of autism", has 4 boys and is such a giver. Always so supportive, willing to help or just listen, etc. But tonight, she's in ICU with blood clots in her lungs. I can't go visit, she lives in Indiana. But apparently she's in very serious condition, so everyone is asked to please pray for my friend Shannon, her husband, and her 4 little boys. Pray, pray, pray and keep praying, please!

the mountain is just so high

2009-02-20T19:19:00.000-08:00

Fair warning.....a bit of pity party and whining may follow. Continue reading at your own risk!

I went to a wonderful workshop today. It was sponsored by the SC Autism Society, and this is my first exposure to that organization, but I was impressed. Today, they brought in a well known doctor, author, researcher, etc by the name of Jeanette McAfee. Thanks, sis, for encouraging me to go to the workshop--I'm very glad I did.

I've been to a good many workshops in my life......some related to teaching, music, etc, and some related to ASD topics. A common thread that runs through them all, at least in my humble opinion, are the questions that I ask myself: "Did I learn anything? Can I take anything usable home with me? Will this make a difference in how I __________ (teach, parent, perform)?"

And it sucks royally when you go to something, spend several hours or a whole day invested in the presentation, and then conclude that it was basically a waste of your time. And sometimes a waste of your money too. Been there, done that, got the T shirt. Today, thankfully, wasn't like that.

Actually, today's workshop leaves me with almost the opposite problem......I brought home SO much new knowledge, so many ideas and suggestions of ways to help Mr. Literal that I feel somewhat overwhelmed. Don't know where to start, really. The workshop was titled "Navigating the Social World", which is the name of Dr. McAfee's book. The program was advertised as "A practical, hands-on workshop covering a social and emotional skills curriculum for individuals with Asperger’s syndrome, high functioning autism, and related disorders." And that it was. But what now?

Dr. McAfee's Power Point that accompanied her talk had to have been 50 slides long or more. The handout that went along with the presentation had mini versions of the slides, with places beside each slide to take notes. I wore my hand out by writing, let's just put it that way. And each new topic she brought up was well-explained, well-documented and reasoned, making me think "oh yeah, I can do that, it makes sense, I know that'll work well for Mr. L". And the next one, and the next one, and the next one...................

If you meet Mr. Literal in person, chances are you don't see much on first acquaintance that would tip you off that he's on the spectrum. He speaks well, he's smart, he's usually "well behaved" in public, etc. But here's what I've come to realize: The deeper I delve into his weaknesses, his struggles, his "core deficits" as the ASD world likes to say, the bigger and bigger and bigger the overall problem seems to be.

You know those pics you sometimes see of icebergs? The ones where a small portion is above the water's surface, but then you see what's under the water and it's HUGE? That's Mr. Literal. The surface stuff looks good, not too intimidating, but when you see what's underneath, OMG. Mind boggling, truly. So after today's workshop, I want to just move to California with him and live in our car outside Dr. McAfee's clinic, so he can work with her indefinitely. I worry that it's already too late, that we've missed the chance to address some of the issues. I want to observe him 24/7 and track his stressors, I want to make him a stress thermometer, a Privacy Circles chart, I want to do Laban movements and puppetry and mirroring, and role playing and drama tableaux and social skills therapy at school every day........but there's just too much. I don't feel qualified to do much of that, at least not very well, and I don't even know where to start. What to choose, what to ignore or postpone?

Damn it, this is hard. I feel like it all rests on me, as no one knows Mr. L as well as I do or has invested the time, effort and mental energy in the situation like I have. She told us some scary stories today, not meaning to scare us, but it did anyway--talking about very smart and highly educated adults who can't hold a job, have no friends or meaningful relationships, and it's because they lack these crucial social skills that it takes to make and keep friends and to adequately please employers with your attitude, etc. *sigh* So, can I quit my job? Because that's what it feels like it would take....full time home therapy program, addressing social/pragmatic deficits round the clock, 24/7/365. And even that might not be enough.

Think it's time for some of those relaxation and de-stressing techniques she taught us today..........

I needed this today

2009-02-17T19:34:00.000-08:00

Well, thanks to Amy at In the Eyes of A Survivor, I've received a blog award! :) Thanks, girl, I really needed this today. Why, you ask? Hmm, let's see.......Energizer threw up in his bed this evening (OMG please don't let him be sick), a chorus parent is emailing me to bless me out about just why did her precious child get a zero even though she missed a concert, my dining room table is literally COVERED with a mountain of clean clothes that need to be put away, and the nearly-constant headache is still hanging around. Yeah, yeah, I know, it's blood pressure, don't remind me.

Anyway, here's my award, isn't it cool?

The rules for this award:

Choose a minimum of 7 blogs that you find brilliant in content or design. Show the winners names and links on your blog, and leave a comment informing them that they were prized with “Honest Scrap.” They can keep the little Honest Scrap sign....

List at least 10 honest things about yourself.

1. I wish I weighed about 30 lbs. less than I do, but would settle for 15.
2. I absolutely cannot believe it's been 20 years since high school graduation.
3. I always thought I'd have girls, since I was such a girly-girl myself.
4. If I'd known what direction my life would take (preemies, special needs etc), I would have gone into music therapy instead of music education.
5. I drink Diet Coke (or some version of it) every day. Multiple times every day. MANY multiple times.
6. I still get nervous in getting in front of my classes at school, even though this is my 14th year of teaching.
7. I'm a political/American history junkie. Secretly wish I could live in Washington and permanently inhabit an episode of the West Wing.
8. I still mourn over my lost pregnancy and parenting experiences, and probably always will.
9. Never thought in a million years that I'd be giving ADHD meds to my child, but here we are.
10. I have a wonderful marriage, and am incredibly blessed.

Thanks again, Amy. I'm proud to accept this award, and want to thank all of the little people......LOL! Seriously, now I'm supposed to tag my fav blogs (that Amy didn't already choose), so here they are:

Unique But Not Alone
Belphia
Soapy Water
Two Princesses, a Queen and an Old Frog

I think that's all I've got, LOL..........hope just 4 blogs is enough. Have fun ladies!

Friday the 13th

2009-02-13T08:53:00.000-08:00

Yep, it's that time again, time for a new Friday the 13th on the calendar, and a new Friday the 13th movie in the theaters (which I will NOT see, thank you very much). But this one is Feb. 13, which means that yesterday was Feb. 12. In my crazy-busy Thursday, I didn't get to post here like I wanted to......but Feb. 12 is a pretty darn significant day in my life. So you get my Feb. 12 story on the 13th instead. Deal with it.

All I really wanted to do was see the Prairie Home Companion show, live and in person when it came to Charleston. I'm a nerd, freely admitted, and love listening to that show on the radio on Saturday nights. I'm not old enough to remember the days of sitting around the radio with your family, listening to musicians and corny comics, but this show is like a taste of that. So in late 2003, I heard it was coming to Charleston, and K agreed to go with me to see it. Not his cup of tea really, but we decided to make it a Valentine's Day outing since the date of the show was Feb. 12, 2004. We even splurged on the most expensive tickets, which for 2 of us cost over $100.

I was pregnant with the Energizer Bunny at that time, and as 2003 turned into 2004, things started deteriorating. Headaches, high blood pressure, forced out of work due to the need for bedrest at home....you get the picture. It was the nasty preeclampsia rearing its ugly head again. My OB wanted me to go to the medical university hospital and get a very thorough ultrasound and checkup with the maternal-fetal medicine gurus down there, figuring I would become their patient soon enough. *sigh* Appointment date? Feb. 12, 2004. It was in the early afternoon, and I figured it would be ok to ask those doctors if I could pretty please with sugar on top go to the PHC show that night. I wouldn't do anything strenuous, just sit in an auditorium seat and laugh, that's all. I'd go straight back to bed afterwards, really. I'd even put my feet up while the show was going on, and I wouldn't drive because K would do that.

Well, I didn't even get the chance to ask that question. Instead, I got my "go straight to the hospital, do not pass GO, do not collect $200" card. Yep, that's what I said. A few more hours and I would have seen the show. Who knows what would have happened to me, or the Energizer, though. I honestly see now, as I look back, that I had no earthly concept of just how dangerous PE could be, and how many moms and babies die from it, even now in the 21st century. So I was admitted to the hospital, K took Mr. Literal up to stay with the grandparents, and thus began my month-long saga of trying to hold down the BP and keep that baby cooking for as long as we possibly could. Each day was a victory, each day was a little bit closer to "viability" for him. We made it until March 8, and even by then (at nearly 28 weeks) he only weighed 1 lb. 9 oz. On the 12th, as I was supposed to be watching Garrison Keillor sing the Powdermilk Biscuits song, my little man was estimated to weigh less than a pound. The doctors said he wouldn't survive, and we were expecting to deliver in a matter of days and then watch our child struggle and die.

But he didn't. He's 3 weeks from his 5th birthday, and as feisty and full of life as any child you've met. And I still listen to PHC sometimes on Saturday nights. I had a daydream one time that they came down here again for some shows.....and I contacted them and told my story. In the daydream, they gave our family free tickets, let us meet the cast, told the audience our story, etc and showed them my little miracle boy. You never know, it could happen, right?

cannot freaking believe this

2009-02-03T10:01:00.000-08:00

OMG! I'm so @#^%$& pissed off right now, although the reason may seem small or insignificant.

Since Jan. 2008, I've been in a community choir group, which I have come to dearly love. It's fun, it's relaxing, I'm not in charge or conducting. I just show up, practice, sing in concerts, and learn from the director who is a great choral expert. We've done heavy-duty classical stuff like Brahms' Requiem, but we've also done lighter fare like Broadway show tunes, patriotic medleys, and this season it will be the Best of Gershwin. For a sappy cheeseball like me, this music is fabulous and so much fun to sing. "I've Got a Crush on You", "Embraceable You", "Porgy and Bess", etc etc etc etc...............

Well, guess what? I can't sing in the Gershwin concert. Our school's Fine Arts Dept. is doing Grease this semester, and I wasn't told until today when the performances are. Yep, same night, same time as the community choir. And the locations are a 40 minute drive apart.

I'm racking my brain here. There's GOT to be a way to solve this problem and allow me to do the Gershwin, but so far I haven't found it. That group really fills a need for me, for something to be in that's just mine only. K isn't a part of it, he takes care of the kids so that I can go to rehearsals, etc. He is part of groups that perform, he gets to have the chance to use his skills in that way.....and also to have the social aspects of the group participation too. And this is that, for me. Except now it's not.

Again, seems like a minor thing, but I'm really depressed over it. The group will be just fine without me, so it's not that, it's just that I want to do it and feel like there's nothing else I have right now that just belongs to me and is purely for enjoyment. So on March 28, I'll be here at the #$&*@ school playing my trumpet on Hopelessly Devoted to You, instead of singing Gershwin.

*sigh*

really excited

2009-02-03T06:20:00.000-08:00

Hi, all. I'm going to be contributing once a month to a blog on a new website set up for parents of special needs kids, it's called Hopeful Parents. I'm very excited to be a part of this project, hoping to use this as yet another way to reach out and connect with other parents who know what this journey is like.

Each blogger has an assigned day of the month on which to write, and mine's the 24th of each month. So, come on over and check out the site, and look for my postings beginning Feb. 24. That gives me 3 weeks to decide what to write about, LOL!

the freedom of Facebook

2009-01-31T17:09:00.000-08:00

In the ever-expanding network of Facebook, I'm a relative newcomer, having joined early last fall. I'll admit to being officially addicted to the place, and have managed to acquire 250 friends there......coworkers, relatives, former students, friends from college and high school, etc.

But you know what? This morning, I had a revelation about FB, and it makes me love the place even more. In real-life, true honest-to-God interactions with live, breathing people, you often have to deal with people that you don't particularly like. You may work with people that annoy the crap out of you, when you're in school you aren't going to be BFF with all of your classmates, etc.

In the amazing world of Facebook, however, you literally create what surrounds you, and you don't have to put up with anything that you don't want to have around. Don't know why it didn't occur to me sooner, but it's so liberating! This morning, I got online and began to check my sites, as usual. I do a quick glance at my FB homepage, reading over my friends' status updates, etc. One jumped out at me......from someone who I barely knew and didn't like in high school, and as I remember it she didn't like me either. She was the "in crowd", "cool kid", maybe even a cheerleader, and I, well......I wasn't. When she friended me, I was surprised but figured I'd accept---why not, right?

So this morning, her status update was something asinine about President Obama and the new law he just signed which allows women to sue for wage discrimination. I won't dignify her remark by repeating it here. ;) No WAY she could have come up with this rightie talking point all by her lonesome, and you could almost hear Rush's voice in every syllable. I read it, and reread it, and then it hit me....I don't have to read this crap! Not only do I not have to read it today, I can make sure I never have to hear from her ever again! And so I did. I went to my friends' list, clicked the little X beside her name, and that was that. Voila! She's gone, out of my life, out of my little FB world. Why? Because I can, that's why! I can't make the real world perfect, can't cut out every dissenting opinion or anything that I just plain don't like, but you'd better believe I can do it in Facebook, and I will.

Aaahh, the freedom......... :)

somebody up there was looking out for us

2009-01-29T08:12:00.000-08:00

As I dropped Mr. Literal off at school this morning, and waved to the morning-duty teachers on my way out of the parking lot, I remembered to say a quick prayer of thanks (approximately the millionth such prayer) for the fact that my children can attend this school. I remembered, with a shiver, the night of the magnet-school lottery back in 2006, and I'm firmly convinced---without a doubt---that someone was looking out for us, making it possible for my kids to be in this fabulous school. I can't even bear the thought of how things would be different if we weren't.

It's an arts-infused magnet school, and the selection process is done via a lottery system. What this means is that parents from all over the county send in applications, and those kids are each assigned a code number. The code numbers are written onto slips of paper which are put into jars--one jar for each of the 5 sections of the county from which students can come.

On the lottery night, it's as pure a selection process as can possibly be......first, a drawing to determine the order in which the jars are placed on the table, and then they begin pulling code numbers out of the jars. Jar 1, jar 2, jar 3, jar 4, jar 5, jar 1 again, etc until the spots are filled. The school's principal runs the meeting, and she started out by saying "most of you here tonight are going to go home sad, because the fact is that we do not have enough space to accommodate every child who has applied."

We actually applied as an "OOD" family....out of district. K teaches in that county, but we don't live there. His teacher position allowed us to put Mr. Literal's name in to the jar, but did not provide any special consideration, etc. His code number was put into the jar for the part of the county where K works, which is labeled GC.

We got there early that night (I HATE being late for things) and actually got a seat, unlike many families who had to stand in the back, etc. "Our" code number was OOD17, so we listened intently to the number that was called every time she got to the GC jar.

H 36

MC 50

C 2

etc etc etc etc ...............

The GC jar had the most code numbers in it, since that's the closest to the school and the most populated area of the county. Making our odds even worse. But we held our breath each time she got to GC. Then she called out "GC17". Our heads turned quickly to look at each other. "Wait, our number was 17", I told K, but we knew the letters were OOD and not GC. Talk about roller coaster--my heart leaped at the number 17, then plummeted knowing that the letters weren't right.

The lottery was almost over, she only had a few more numbers to pick. As each number came up, they were taping them to a big poster that would be hung up by the door at the end, so people could inspect it and make sure they'd heard correctly, etc. So, she called the last few numbers, thanked us all, and we got up to leave. Something was nagging at me, though, and at K as well, in thinking that each number was only used once, even though letters were repeated to assign location. Meaning, there shouldn't be more than one code with 17 in it. I was dejected, head hanging, already trying to digest the fact that he wouldn't be in this school and wondering WTF we were going to do. But K said "I'm going to ask her, just to double check", and he walked to the front.

I was ushering the kids out, Energizer was out of his stroller by this time and getting very antsy, but K pushed through the crowd, talked briefly to the principal, then made his way back to us and said "It's him, that was our number!"

Praise the Lord!

He'd explained our confusion, and she said that in fact that code number did say OOD, but since it was in the GC jar, she just said GC instead. Figured it would be confusing to other parents to hear the OOD label since they wouldn't know what it means, etc.

I insisted on going up to the poster to look at the number myself, not yet believing what he'd said. There it was: OOD17 . I was happy, relieved, excited. We went out for ice cream to celebrate!

Little did I know then, though, how much that selection in the lottery would impact our lives, and my children's future. There's no way I could have known how wonderful this school is, how much we love it, and how absolutely and completely right this has been for Mr. Literal in particular.

It's a small school, around 400 kids......kind of a "everybody knows everybody else" sort of place. And they're so "child centered", so attuned to the individual strengths and talents and abilities of kids. They amaze me on a daily basis. For Mr. Literal in particular, these past 2 1/2 years have been a time of flourishing, growth and accomplishment, bolstered by the faith and support of wonderful teachers. If you look at it superficially, and say "we made a child with autism the star of our Christmas program", some might say they're crazy. But these people had no qualms whatsoever. They dealt with his sensory issues regarding the costume, they dealt with his meltdown when he got the part. His art teacher even told me "knowing kids like Andrew makes us all better people". Can it get any better than this?

The school is a family, it's as simple as that. And the foundations that are being set for my children here will have an unending impact on their future. Thank you, Lord, for making this happen for us, as I unquestioningly believe you did. You knew we needed this, a place where my special boys wouldn't just be part of the nameless masses walking through the halls. Thank you, thank you, thank you.

talk radio vent

2009-01-28T08:51:00.001-08:00

Do you listen to talk radio? And by that, I mean news talk, political talk, issues-based talk.....not fluffy stuff. I do, mainly because I'm a musician by vocation and avocation, which means I do NOT want to listen to music on "my time" while I'm driving my hour-long commute each morning and afternoon. So, I usually do a local talk show in the mornings, and Sirius talk in the afternoons (3 pm, my main man Ed Schultz, but I digress........)

This morning, I got really pissed off at something I heard. Really. REALLY. And the more times I think about it, the madder I get. My problem is this: In order to be successful (read: controversial), these talk show hosts have to be very opinionated. There's no gray area, no seeing of both sides, no concessions made that maybe another opinion might have some merit. You're with them, or you're against them. Or they spout out statements that they expect you to accept as indisputable fact, no exceptions allowed. But the real fact is that life is about exceptions, and until you've walked a mile in someone's shoes, you shouldn't claim to know what they know or feel the way they feel. The further in life I go, the more I understand that. And that's why I'd be a terrible talk show host.

The issue this morning was medicating of children, specifically for ADHD. See, now, why it hit home for me? Apparently, a series of studies has been released saying that the ADHD meds can cause hallucinations and/or other symptoms of "psychosis" (the talk show's word, not mine). So, the host just goes off on this topic, bitching about the overmedication of kids these days, laziness of parents who don't want to discipline, etc. The host was a teacher himself for a few years, and his wife is a teacher too......so obviously that gives him ALL of the child development and educational knowledge that he could possibly need, right?

(excuse me while I wipe the dripping sarcasm off of my keyboard)

Ok, I'm back. He did toss people like me a very tiny, mangled up bone, when he said something like "well, I know there are some kids who need those medications" but then he was right back into the generalizations and the judgments. He even tried to "help" people understand what goes on in schools today, by this example: he said "today, at every school in this area, at around 10 or 11 am, there's going to be a loudspeaker announcement saying 'the following students report to the office.' " And the point being that they will be marching up to the office like good little lemmings to take their psychotropic drugs that aren't even needed.

So let me counter with this: I"ve taught for 14 years, in both middle school and high school, public and private. And I have NEVER heard an announcement like this made, ever. That is not how it happens, so quit sensationalizing it when you don't know WTF you're talking about.

Second, this host also claims to know all there is to know about preemies and the NICU, since his son was a few weeks early and I think he stayed in NICU about 10 days after birth. Pardon me if I say "SO????" Try 10 weeks, how about 11 weeks! My son weighed the same as 700 paper clips at birth, and is incredibly lucky to even be alive today. And after the heart defect, the brain hemorrhage, the ventilator, and all the rest.......the ONLY long term health effect of Energizer's prematurity has been the ADHD. It's not a label, it's a fact. It's not an excuse, it's not a crutch, it is real. You, Mr. "Morning Buzz", do not live with him, do not deal with the aggression and the impulses he can't control, and the horror of being forced out of the only school and only friends he's ever known. Until you do, I'll thank you to shut your mouth about things which you do not understand.

Since I actually CAN see both sides of issues, and can look at varying perspectives, I can agree that there most certainly are some kids out there who are given meds but don't really need them. Some people may be too quick to prescribe, resorting to this as a quick fix. But I'm so tired of the "back in my day, we didn't have those kind of meds, our parents just told us to sit down and shut up, and we did it". Yeah, right. And my sons would both be dead right now if we lived back in your day, so get your head out of the sand and move into the 21st century, please.
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And then secretly, quietly, I admit to myself that I still have the lingering guilt over the fact that we're giving him the meds. I don't like it. I know he needs it, I"ve seen it work, but I don't like it.....because society tells me that I'm lazy, I'm a bad parent, I need to learn how to discipline, I need to spank him, I need to straighten him out. So when Energizer said "can I listen to Kids' Stuff radio?", I responded "with pleasure" and used the power of my finger to change that radio channel. Too bad it's not that easy to turn off the nagging guilt.

Questions of the day

2009-01-24T08:28:00.000-08:00

First of all, let me tell you where I'm blogging from right now--a high school computer lab, 1 1/2 hours from home, because I'm here for a Band audition today. I'm working in the tabulation room, putting scores into the computer, but we're in a lull in the action right now. Doesn't that sound exciting? ;)

Now, thanks to my sista, at House of Tafka, for the idea of answering the following questions........

1. If you could only visit 5 websites for the rest of eternity, which ones would you pick and why?

In no particular order, I guess...
Google
My blog, natch
Facebook
My 2 forums----one for PE survivors, and one for parents of ASD kids

2.What was your favorite childhood movie?

Hmm, that's tough. Young childhood, I don't really know.....but as I got older, I found my fave movie which is still #1 on my list--Gone With the Wind! Ok, ok, quit laughing. I'm a Southern girl, born and bred, how can Miss Scarlett NOT be at the top of my movies list?

3. What is one of your favorite memories of growing up?

We lived in Houston when I was in 5th and 6th grade, and I loved it there. Didn't want to move back to SC, truth be told. I had the best friend out there, who lived in my neighborhood, and we would ride bikes and roller skate all over the place. We'd also hang out at the community pool....I had the best tans of my life during those summers. We started out in Band together, her on clarinet and me on trumpet. It's amazing, looking back now, how "free" we were---able to just roam the neighborhood for hours on end, and no one worried because it was safe to do that back then. (and NO, I'm not really that old, LOL)

4. If you could vacation anywhere in the world and money wasn't an option, where would you go and why?

England, specifically London. I'm such a history nut, and there's so much to see and do around there. It's ok, stick on my dork label now, I understand.

5. List ten things you could not live without (just things, not people).

Here goes......sad, but true........again, not in order:

Diet Coke
music (both listening and performing)
computer (avec Internet, of course)
reading material (newsmagazines, fiction and non-fiction books)
sweet foods (I'd settle for some warm choc-chip cookies just out of the oven)
hair dryer (my hair isn't the kind to just air-dry, LOL)
MSNBC (especially Keith Olbermann and Rachel Maddow)
sleep ;)
Sirius radio....it's addicting
......having a hard time thinking of more without including people on the list, so I'll just say PIZZA as my last item, how about that?

not quite this, not quite that

2009-01-23T08:49:00.000-08:00

That's the summary of what I am these days.....not quite a Band director anymore, definitely not quite a Chorus teacher, not quite a full time teacher, not quite part-time though..........not quite a typical Mom of typical kids, but not quite the "special needs parent" as most people envision it. Hmmm.

This weekend I get to play along at several of my not-quite roles. Tonight, I'm going to a chocolate party.......yes, that's what I said. A friend is inviting ladies only to her house tonight for a chocolate party in the style of Mary Kay parties or Tupperware parties, etc. Should be fun, hoping to see several people I know there, but......I'm just so socially UNcomfortable much of the time, wondering what I have in common with people, etc. Long-time Band director friends feel so far away from me now.....most don't have kids, many aren't married, and they're waist-deep (or more) in the Band life, and I"m just not any more. And they don't know ASD from ABC, so that's not really a topic in our conversations either. It's just very superficial, kwim? "How are you?" "Great, how about you?" and it doesn't go much further than that.

Speaking of that, I get to go to a state-wide Band event tomorrow, and do the same small talk all day while feeling like an impostor. I"ve worked this Band audition for the last 5 or 6 years, and I do enjoy it, but I've got nothing to share with those other directors. When you've got 5 people in your Band, you don't do much of the stuff that their groups do, so I just nod and smile and listen, and that's about it. For the first 30 years of my life, or at least years 11-30, Band was my identity. I was in it, I studied it in college, I taught it in the 24/7 way that good Band directors have to do. I can't, won't, and don't want to do that anymore.....but because my toe is still in the water, I have interactions with those who do, and it just feels weird. Our circle of friends around here is comprised of Band people too, mostly, so again.....I don't like having nothing to contribute to the conversations when it's time to talk of who made AllState, what you're playing for Festival, who's performing at Convention, etc. I won't even be at Convention this year; why go, what's the point?

Then, Sunday I'll take the Energizer to a birthday party for a 1 year old. K and Mr. Literal are going to an oyster festival, since that's their new-found male bonding activity.........me, I could care less about shucking oysters all day, and I hate eating them, YUCK. But they love it, so I'm encouraging them to go. Energizer Bunny and I will go to the party, at which I get to be reminded yet again about the differences between my parenting experiences and those of most people. The birthday boy is so precious---cute, chubby, very NT and doing just peachy-keen in every way. I don't begrudge him that, don't begrudge his parents their good fortune in his healthy development, etc, but still..........

I guess it comes down to this: If I've got to explain it, you wouldn't understand. That's not meant to sound mean, don't want anyone to take offense. But it's truly hard to see why situations like that would bother me, even mildly, unless you've been in the same spot yourself at some point. And I think most of you who read my blog HAVE been in that spot of the parenting-envy and frustration; you probably go through it most every day or at least pretty often. If so, I send you my (((((((((hugs)))))))))))), and my wish that you could go with me to this party, so I'd have something in common with someone.

Where were you when....

2009-01-20T18:58:00.000-08:00

Isn't that the question that kids ask of their parents? Where were you when something important and memorable happened? Were you watching when ____________ (fill in the blank)? For me, it was asking my Mom about the Kennedy assassinations, Nixon's resignation, Woodstock, etc. And as a teenager, I used to complain that "nothing big or exciting" ever happened during my lifetime, but I sure wished it would.

Well, I can officially say that I've had my share of big and exciting events to witness now. One of the biggest occurred on 9/11/01 while Mr. Literal was still in NICU, and another of the biggest occurred today. So when my boys grow older, and ask me about the inauguration of Barack Obama (which they'll barely remember, if at all), what can I tell them? What will my story sound like? Something like this....
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We had school that day, so after dropping you guys off, I drove to my own school and settled in to watch the inauguration coverage online. My plan was to watch it with all of my classes, using my LCD projector to show the images on my BIG white classroom wall. What I didn't factor in was that every breathing soul in the free world (and some in the UNfree world) was also trying to watch the coverage online, all at the same time. Which meant that the video feed was horrible, it kept freezing up and was practically unwatchable.

I suffered through it for 2 hours, and by 11 am was frantically planning my escape.......where could I go during my lunch break that I could watch the coverage on an actual TV? The nearest place that I knew for sure had a TV was a NY-style pizza joint down the street from the school. Orlando's, to be exact. So at 11:15 am, I walked into Orlando's and ordered a slice of pepperoni and a Diet Coke. An hour and 2 Diet Coke refills later, I watched Barack Hussein Obama take the oath of office. The Chief Justice screwed it up, but nothing could take away the importance of what was occurring. I was proud to be an American, proud to have voted for this man, and very hopeful for the future and what the Obama era could bring to our country.
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There was NO WAY I was going to miss seeing this today. If I'd gotten any more desperate, I was ready to knock on doors of complete strangers' homes and say "hey, do you have a TV by any chance?" But thank goodness for Orlando's. It was surreal in a way, though........by noon there were about 10 of us in there watching. A few others sitting in the back of the restaurant, eating their pizza but NOT watching, but the rest of us clustered around the TV mounted high on the wall, eyes fixed on the screen. Wishing the people ordering their slices would talk just a bit softer, or turn the TV up louder, neither of which happened. But when THE moment came, everything else fell away and we watched as history was made........me and 10 strangers, eating pizza in a small restaurant on a cold, blustery day. After the oath, I threw away my trash and went out to my van to listen to the inaugural address. Figured I could stand not to see it, but to hear it in peace and really focus on the words.

I know that people driving by my van must have thought I was a wacko or something......I turned the van on, heat on full blast, and leaned my seat back as far as it would go. Then I just closed my eyes and let him talk to me. I just wanted to block everything else out, and immerse myself in the moment, knowing this is once in a lifetime. And if I was proud of him, and of us, before.....after this speech, I'm doubly proud. Proud to be someone who voted for him, and proud to be someone who's (almost) of his same generation. We're not baby boomers, we don't have grown children......our kids are in elementary school. He's only 10 years older than I, and Michelle only 8, and that's just cool. His speech was strong, tough, thoughtful, intelligent and respectful, just as it should have been. We've lived without so much of that, for so long, we almost forgot what it was like to have it.

When the speech ended, I sat up, put the van into drive and went back to school for my last class. So yes, I saw it, I heard it, I was a part of it in my own admittedly strange way. It's definitely a story to share with my kids someday. Mom always tells me how much she loved JFK, how inspiring and motivational he was, and that she hoped I'd have the chance someday to experience that feeling if the right leader comes along. Well, he's here, and I'm so glad. Now it's my turn to hope......that we don't have to wait 40+ years for someone else like him to come along.

Prayers for the President

2009-01-18T11:25:00.000-08:00

THat was the title of today's sermon at our church. Been looking forward to hearing it for a few days, ever since our minister told K about his plans to focus today's service on the upcoming historic inauguration. Music was selected specially for today, same with the readings, and the sermon was very interesting, inspiring, and about as non-partisan as I think one could be at this point.

The closing hymn was one the minister requested.......Lift Every Voice and Sing. A famous civil rights-era song, in the style of We Shall Overcome, in case you weren't already familiar with it. So when K called up that song on Wednesday night at rehearsal, I think I felt a ripple of discomfort among the mostly-65-and-up members. But they sang it. As for me, I got chills both in rehearsal and in the real performance today. But even as the goose bumps subsided, the philosopher in me started thinking "what right do I have to feel any ownership of this?" "Where do I get off having goose bumps?"

I wasn't born until the early 70s. (read: after the marches and sit-ins and protests and tragic assassinations of the 1960s) So it's not like I marched at Selma or boycotted buses, and I wasn't a Freedom Rider helping to level the playing field for all Americans. Oh, and one more thing.......I'm just about as white as they come. I've never been forced to go to separate schools, eat at different restaurants or use different restrooms. Never felt discrimination, really I haven't, and I know I'm blessed to be able to say that.

I guess my only real connection is that of my American citizenship, and my lifelong U.S. history nerd-itude. So I've read things, watched things, learned things about what America has been through in her past, and am especially fascinated by the 1960s. Didn't live through it, but it almost feels like I have.

As a Mom, I've tried to make sure my kids are brought up to respect differences, treat everyone equally and be as color-blind as they can be when it comes to dealing with people. I think I've succeeded, so far at least. Mr. Literal's school is quite ethnically diverse, and some of his best friends have much darker skin tones than he does. He's the blond/blue-eyed/fair skinned child, but he knows that not everyone looks like him....and that's ok with him too, thankfully.

That Lift Every Voice song has 3 long verses to it........so I had lots of time to ponder my feelings of pride and hope as we sang. By the time we got to the last verse, it all made sense.

Shadowed beneath Thy hand, may we forever stand,
True to our God, true to our native land.

Isn't that what it's all about anyway? OUR God, OUR native land, all of us. And so we approach Tuesday's historic event, cautiously daring to hope that the new President can do what the last several have not.......bring us together to work for common goals and aspirations. If we truly believe in equality and the dreams that Martin Luther King spoke of, then we have every right to join hands together this week, to demonstrate that equality in the way that we ALL celebrate the inauguration of our next President.

So as the minister said "President Obama, you are in our prayers." Amen, brother, amen.

blessings galore

2009-01-15T19:14:00.000-08:00

It is so cold tonight, all over the East Coast and beyond. Gonna be in the 20s here, but that's like a day at the Equator compared to places up North. Trying not to think of the people who are out in this tonight.....I can't even imagine. The handy-dandy TV weatherman is saying it'll be Charleston's coldest temperatures of the last 20 years!

All 3 of my boys were asleep by 9:30. I got to thinking about how cold it already is, and what it's gonna be later, and decided to put extra blankets on everyone. Thank goodness for a mother in law who crochets--we've got afghans all over this house! Then, it was time for a nice HOT soaking bath for me, and a few minutes to just let my mind wander.........

I kept coming back, though, to thoughts from the last few days--just random stuff, mostly sweet and happy stuff, and thinking of how blessed we are. No big, amazing events have happened, just the small day-to-day stuff that memories are made of.

~I had a lunch date with Mr. Literal today. I love those, absolutely love them. He was my companion all day long at school, since he had the day off but I didn't. We went to Quizno's for subs and just chatted while we ate. He's so incredibly grown up sometimes, just looking at this little man sitting across from me is amazing.

~Last night, at choir practice, Energizer sat in my lap for about 20 minutes, and sang along with us. He's got great pitch (comes by it naturally, I suppose) so he picked up on the tune quickly and was jumping right in for the words "Glory, glory hallelujah" which repeated over and over. He looked so happy, so "in the moment", which made me feel that way too.

~I had to drive both boys this morning, when normally we each take one so we can get to school faster, etc. As we left the driveway, I remembered it's trash pickup day and our trash can wasn't beside the street. I put the van in park, jumped out and moved the can to its spot. Drove on around the corner, and saw the garbage truck approaching. We were in a hurry, plenty of places to go, but I decided to take a 30 second pause and just pull over to let the kids watch the truck pick up the can and dump it. They loved it, thought it was so cool, and it struck me that I don't think they'd ever actually seen that before. And so what if I was 30 seconds later getting to school?

~Even more elementally, more basic........we have a home tonight, when more and more people lose theirs every day. Our home has heat, and (so far) the heater is winning the battle to keep us warm tonight. We've got plenty to eat, too much in fact, but despite that fact, I'm managing to eat better this week and actually have lost 2.5 lbs already!

So maybe I sound preachy, or too saccharine-sweet, but that's my mood tonight--I'm dwelling on the good stuff, appreciating our health, prosperity and safety AND the 4 day weekend from school that's coming up! Now, if I could just figure out a way to be out of school on Tuesday too......

well, you knew this day was coming

2009-01-14T09:43:00.001-08:00

Hmm, let's look at the facts for a moment, shall we?

Mom--chronic high blood pressure, on medication for many years, and one preeclamptic pregnancy (when having me)

Dad--chronic high blood pressure, on medication for many years

Me--2 severely preeclamptic pregnancies, labile and borderline blood pressures since last delivery (2004)

So, at today's oh-so-lovely yearly checkup at the OB/GYN, my BP was 142/100. Umm, that's a bit more than borderline, don't you think? Guess I knew this day was coming, and looks like it's here.....I'll be going for a follow up with a general practitioner (oops, was I supposed to have one of those kind of docs already?), and most likely getting on BP meds, probably forever. *sigh*

Great way to start out my day, huh? Oh, and the doors to our vehicles were FROZEN shut this morning.....WTF? This doesn't happen in SC!

blog envy

2009-01-13T06:19:00.000-08:00

Ok, confession time. The more I look at blogs, the more I love what others are doing with theirs......and not what I'm doing with mine. I can't decide which direction to go: Witty, smart, emotional, politically-slanted, "newsy" about day-to-day life, autism-focused, preeclampsia-focused, preemie-focused..........? Consequently, you never know what to expect when you visit here, because from one post to the next, my take on things is entirely different. Some of the great bloggers I read just seem to have it "all together", at a time in my life when I don't feel like I do. Oh well.........

I have, though, decided on one thing I want to do. Lots of Moms who blog have such cool and creative "faux" names for their kids when they write. I know it's to protect identity, preserve privacy, etc, but I just love the names and have wanted something like this for a while. Now, I'm going to do it, so here goes:

My oldest has been referred to here only as A. He's 7 1/2, brilliant and talented, but diagnosed with Asperger's Syndrome (on the autism spectrum). I've searched for the right name to use for him, to sum him up in just one or two words, and it's tough. I've settled on Mr. Literal. That's him, in a nutshell. When he asks me what time it is, I look at a clock and say 4:15.....to which he'll reply "4:14". No fudging or estimating with this boy, it's either black or white and there's no in-between.

Hmm, now comes little E. He's nearly 5 (!), was my micropreemie, and has recently been diagnosed with ADHD (emphasis on the H, of course). He keeps us hopping, no question, and that's what led to my idea for his new blog name.......the Energizer Bunny. He just keeps going, and going, and going.........

So anyway, there it is. Hope you like the names, and that those of you who know us IRL will know who's who by the descriptions. I don't think you could ever mistake Mr. Literal for the Energizer Bunny. ;)

weekend update

2009-01-11T19:56:00.000-08:00

Do you watch Desperate Housewives? I used to be sooo into that, and in recent years have fallen away from the habit. But this season, I'm back on board and am interested again, although not like before. Anyway, I was watching it tonight.....ok, listening to it as I posted on my forums and on Facebook. A quick summary, if you're not up with the story:

Gabrielle (Eva Longoria) is now a not-so-skinny, not quite so gorgeous Mom of 2 bratty kids. Carlos, her DH, was blind for quite a while but has regained his sight and now is back in cutthroat corporate America. Well, tonight the girls were being typically bratty, flat-out refusing to clean up toys, etc. They wouldn't listen to Gaby at all, just said "NO" to anything she told them to do. She called Carlos, interrupted his meeting to tell him about the bad behavior. When he gets home, she's complaining to him about how he's never home, the kids don't listen, etc and saying "I just wanted us to have a normal life". His response? "You want normal? Dad hates his job, Mom's home with the screaming kids. You got it!"

So is that really how it is? Is that what normal is? I'm not sure I know anymore. I know that parenting is exhausting, especially where little E is concerned, and I don't think that people who haven't experienced the severe ADHD really can understand that. You cannot relax, cannot let your guard down for a second, at least during the non-medicated hours. And K is overworked, overstressed, overtired, and underappreciated at work for what he does. So I guess, yes, we fit that so-called definition of "normal".

Anyway, I'm going to try once again to get back on the healthier-living wagon this week, and hope that it will result in some weight lost as well. Lord knows I need to! But as I write this, I'm watching a Papa John's pizza commercial advertising their new dessert pizzas............. *sigh*.

the expansive heart

2009-01-05T19:35:00.000-08:00

Considering that today, Jan. 6, is the 12th day of Christmas, it's still ok to make a Christmas-based reference, isn't it? Well, I'm making one anyway.

I love How the Grinch Stole Christmas, that great classic by Dr. Seuss. The TV special is just classic, and I can nearly quote the whole thing word for word. Song for song. "You're a mean one, Mr. Grinch, you're a nasty wasty skunk!"

Tonight, though, I'm thinking of that part right near the end, when "the Grinch's small heart grew 3 sizes that day." You can see and hear the metal outline of his tiny, shriveled heart grow bigger, and bigger, and bigger until it finally springs loose.....the "frame" that had enclosed his heart can't hold it all anymore, because of how big the heart has grown. I think that image, the heart that outgrows its borders, is a great way to represent Moms of special needs kids. Bear with me a minute, I'll try to explain.

More and more, recently, I see how my induction into that sisterhood of "special needs Moms" has made ME so much more open minded, tolerant of differences, and better able to see the beauty in those kids who don't "come out of the cookie cutter" as a great friend says. It also becomes increasingly clear to me that almost nothing is black and white.......life is about flexibility, exceptions to the rule ARE the rule, and the realization that our kids (ALL kids, but ours especially) are so incredibly unique and special, and worthy of all of the extra time and attention we can give.

While sitting in the foyer at A's speech therapy appointment today, I "met" a young girl who arrived with her mom for PT. She was soooo precious, just adorable and happy and sweet, I could tell right away. But it was also abundantly clear that she had "something", I don't know what......it wasn't Down syndrome, but maybe some other chromosomal abnormality or other birth "defect" although I hate that word. She was so tiny, but her head was larger and her eyes were very widely spaced. To the standards of society, she's probably considered ugly or even "scary" to look at, and maybe that's how the old me would have seen her. I'd like to think not, but.....the new me, however, was uncomfortable for about a half a second, then had my heart stolen by her smile, her wave, her sweet demeanor. I may never see her again, may never know what her diagnosis is or her prognosis, but I do know this: She's someone's child, people love her, and she is a happy child with much to offer to us if we will open our eyes and expand our hearts enough to recognize it.

One more example......we took A to a minor league hockey game on Sunday. He'd gotten a certificate at school (a reading program) for a free ticket, and was very excited. We'd planned to go for quite a while, got there and were told that this was the wrong certificate for this game, and they wouldn't accept it. This was the only one he had gotten and we knew nothing about any others. He goes into near-total meltdown mode, screaming in the coliseum lobby. Supervisors were consulted, and they confirmed that our card would not be accepted. It needed to be red, not orange, of all the ridiculous excuses they could have given.

Now these ticket sellers knew nothing about A's diagnosis, probably know nothing about autism, but that's kind of beside the point. If the idea is to reward kids for reading, encourage them to come and support the local team and create long-term fans out of them, is this the way to do it? Can an exception not be made? Would they really go broke over the freakin' $6 ticket that they're not allowing him to have? I see this clearly, and not just because he's my son, but because I know now that most rules are NOT hard and fast, and the desire to accomodate the needs of kids (especially our special ones) and encourage positive behaviors and traits should trump just about everything else. Generally, I'm a rule-follower, a "this is how you're supposed to do things" kind of girl, but the further I go down my special-needs parenting road the more I realize that my heart is just too big now to be that way any more. If it comes down to heart vs. head, feelings vs. rules, feelings win with me. It's that simple. I have to live that way, I couldn't make it otherwise.

So now, I'm about empathy, understanding, and open-mindedness in so many more ways than I used to be, because I know intimately what it means to feel your heart breaking out of the old barriers and embracing people, things and situations that you never could have imagined. Don't mean to sound all "braggy" here, because it's not that, it's just the inescapable side effect of the hand I've been dealt. Hey, you look for silver linings wherever you can find them........

welcome to 2009

2009-01-01T06:13:00.000-08:00

Well, I made it to see the Times Square ball drop last night, but the kids didn't. We tried valiantly to wake A up, but he's like me....sleeps like a rock and there was no way he was waking up for that. And of course, the fact that he missed it caused him to wake up crying this morning, asking if we'd taped it. And did we? Of course not. But K found news clips to show him this morning, so he got to see the ball drop in NYC, Atlanta, and a couple of places around the world as well. In Atlanta, it's actually the Peach Drop, which is too cool, don't you think?

Small step backward on the new house front this morning......K is teetering on the edge of changing his mind about moving. And not because we don't need to move, because we desperately do, but because the housing market is so bad and he's afraid we can't sell this place. But the one who's usually the pessimist around here--ME--is actually cautiously optimistic this time. Or maybe just blindly hopeful, ignoring realities to hang all of my hopes on the excitement of the idea of moving.

Anyway, the boys and I are going for a drive today, just to check out neighborhoods and get ideas. K doesn't want me to, afraid I'm getting my hopes up too much, but I prefer to look at it as "market research", LOL!

Oh, and one more thing: A dear friend, Lori, is going through a tough time right now. Her son, age 4, was diagnosed with a disease called Legg Calve Perthes Disease. It's causing degeneration of his hip joint, and they are still in the midst of having him evaluated to determine treatment, etc. Please keep them in your prayers as they look for answers and make decisions about what to do.

we're home

2008-12-30T05:21:00.000-08:00

....after a 5 hour saga that ought to have just been a quick 3 hour drive home. Yuck! Suffice it to say, there were miles of bumper to bumper traffic, a detour, getting "lost" and driving 40 mph through fog on 2 lane roads. But we made it, and yesterday spent all day in the house, cleaning and UNdecorating. Feels good to get the house in some kind of decent shape before the school/therapy/band/singers/choir grind starts up again.

Inspired by my brilliant blogging friend Molly, I was thinking of writing my own version of a Christmas letter. Molly points out what is very true for so many of us about those letters......they make you want to cry and vomit at the same time. I even started writing one to share with you, and that was before I got home and found several stellar examples of the oh-so-perfect family letters in our mailbox. But I decided that my letter was just too long, too rambling, too depressing to even post here, so I guess it'll languish forever in the land of Blogger drafts that are never posted. Instead I'll do this.......

My List of Previously Unfathomable Things That Happened in 2008:

1. You've gotta put this one first.....Barack Obama was elected President of the United States. (grinning from ear to ear, of course--is there an emoticon for that?)

2. We chose to put little E on stimulant medications for his ADHD. The ADHD dx wasn't the unfathomable part, as we've assumed that for a while. But the meds....never in a million years thought I'd be doing that for my child.

3. I'm teaching Chorus. Yes, I love to sing. Yes, I'm in choir at church and have even joined a community chorus this year, but still......I'm a BAND person, but increasingly I feel more like a singer than an instrumentalist. *sigh*

4. We're considering moving. Just across town, to be closer to schools, etc, but it's still a big leap. When we finally got this house built, and K moved us in practically single-handedly, he swore we'd never move out of here. But it just doesn't make sense here anymore, and I've chop off my left arm to have some more space; we're pretty cramped around here. So YIPPEE, we're taking baby steps toward maybe going on the market soon! I know, I know, timing couldn't be worse, but it is what it is, right?

5. A precious, dear friend died suddenly, of a heart attack. I miss him--he was so incredibly kind, insightful, unselfish, giving, talented.......what a loss to the music community around here, as well as a personal loss of a unique friend. :(

So what will 2009 bring? Can I make some requests? Hmmm, let's see......

--a new house, in the right part of town, that's bigger than what we have now

--changes at school in my teaching responsibilities, for the better

--a year of progress and success for my boys, and a happy school year for them as well as a positive start to Kindergarten for E.

If I can have these, or maybe even just some of them, maybe I'll have a reason to write one of those Christmas letters after all. A girl can dream, right?

random observations of Christmas 2008

2008-12-25T16:40:00.000-08:00

Hope everyone has had a happy, peaceful and blessed day, surrounded by loved ones and filled with good food and good company. I definitely have.....staying at the in-laws' house with K's 2 brothers, one sister-in-law and my niece and nephew, aged 8 1/2. Thank God that the kids didn't wake up and bring us in to see Santa's leavings until 7:10 am, which has GOT to be a modern day record for latest awakening on Christmas morning. Kids reveled in what Santa brought for about 30 minutes, then we did the present opening (gifts that were exchanged among us all). My boys got entirely too many presents, as is typical, but hey, you're only young once, right?

Anyway, I can't seem to organize my thoughts into a coherently structured blog post tonight, as I am about to drift into a macaroni and cheese coma. So instead, I thought I'd just list some random things for you...give you the flavor of what our Christmas 2008 was like. Enjoy, and Happy Holidays to you all!!!!!

1. I'm currently looking at a plant in the living room, a hanging plant in a macrame basket. Kind of a blast from the past kind of thing.....look it up if you don't know what macrame is. Anyway, there's a tiny Santa figurine (maybe 3 inches tall) peeking out of the top of the flowerpot part. It's just so absurd, it makes me laugh. Maybe that's the cheese overload talking, I'm not sure.

2. I saw A act so incredibly "typical" today, in so many situations. Blows my mind when I take time to think about it. Playing new games and toys with his cousins, hanging out watching movies, playing outside, etc. We are truly blessed, I know that. But every time I get too complacent, he does something.....like meltdown in the kitchen this morning because someone touched his head. Not quite a full fledged MELTDOWN, but there was shouting and near-collapsing onto the floor. *sigh*

3. The Focalin that E is taking flat-out works. I mean WORKS. Did I say works? I meant W O R K S! We actually didn't give him any until about 11:30 this morning, because it wasn't until then that we began to see the "manic" stuff as I'm starting to call it. But within 30 minutes, calm was restored. I'm wishing he could have another dose right now, but it's probably not a good idea at 8 pm.

4. My SIL makes me sick, in a sweet/I love her kind of way. She is so incredibly skinny, looks great, and I don't know how she does it. Guess I've got to drown my sorrows in a piece of pecan pie. Or maybe pound cake. Or pumpkin roll.

5. K's dad has a tradition of putting a certain item in everyone's stocking each Christmas. All of us have stockings, adults included, and each year we get a gigantic bag of peanut M & Ms. Like I need that. Don't want to hurt his feelings, but could we somehow nicely say "just give them to the kids next time" or something.

Well, I guess I'll be limiting my random list to 5 things. E is getting more manic, and believe it or not, reading to him seems to promote calm. I think it's my turn, as K has been on duty while I write.

One more Christmas dinner to go........wish us luck. I might just explode if I eat even one more bite of turkey, or dressing. Merry Christmas to all!

over the river and through the woods

2008-12-23T13:00:00.000-08:00

...to Grandmother's house we go. Or should I say, we went.......and we're still there. K and I are from the same town originally, so it works out well when it's time to go visit all of the grandparents at Christmastime, etc. Takes a grand total of 7 minutes to drive between my mom's and the in-laws.

Got here on Sunday, staying until Saturday 12/27. Hoping to see bunches of family and old friends during this week, but I know we'll be more than ready to go home by Saturday. We have Christmas dinners and present-opening 3 days in a row--24th, 25th, 26th! Don't even want to think about the potential for weight gain. *sigh*

Last night, we had the continuation of a really cool tradition. K and some high school friends (all brass players) decided in the 11th grade to go around and play Christmas carols for their families, friends' families, etc. This was 1987, mind you. They did it again the next year, and the next, and the next. It got bigger each time, more brass players were invited, girlfriends came along to hold the music, etc. Several of them went to the same college, so college friends soon joined in and this was when I got involved (circa 1990). Pretty soon, it began to include wives, and just kept on growing. Before you knew it, there were babies coming along, then toddlers, now elementary-schoolers. We call this "Brass Caroling" or just plain "Caroling". It happens some time during the week before Christmas, and the 2008 version was last night. Year number 22, which makes us all feel incredibly old, but I digress.

Over time, it has evolved into a combination of fun and seeing old friends and playing music + doing something charitable and sharing our Christmas cheer with those less fortunate, etc. We play at a homeless shelter near here every year; they schedule us in so that the people are gathered in a big common area to hear us, etc. Last night it was particularly tough, simply because of the number of people in the audience. This is one time that you want your audience to be small.......but it was a packed house last night, and the staff said they had people lined up outside on "stand by" hoping to get in if a spot opened up. It was in the 20s last night, wind chill in the teens.

I look at them and wonder what they think about us. Not in an egotistical way, but more like "do they think we're pretentious? Do they think we're pathetic in our feeble attempts to do something for them? Do they really enjoy this, does it really help in some small way?" It feels so insignificant, you know? These people have no home, are probably hungry much of the time, might have mental illnesses, addiction problems, or lost their job, etc. Their lives might be extremely unhappy, might feel hopeless, lost, frustrated.......but damn it, they got to sing Jingle Bells with a bunch of college-educated preppy white people who think they're doing a good deed for the less fortunate at Christmastime. How nice.

Sorry. That's the pessimist in me coming out. It IS nice to play there, is more meaningful than playing at the local mall food court which is what we used to do. And I hope it does some kind of good for someone, maybe takes their mind off of the situation for a few moments, etc. Definitely makes me hug my kids a bit tighter, giving thanks for the many blessings we have. Snuggling up in that hotel bed last night, I prayed for those people, and thanked God for our health, our safety and for how fortunate we really are. I forget that a lot, looking at the relative UNprosperity of my family compared to so many we know and associate with. But in the scheme of things, we've got it really, really good.

earthquake, and other bumps in the road

2008-12-16T06:29:00.000-08:00

Well, there was an earthquake in our area this morning. I didn't feel it, but people not too far from here did. 3.6, they're saying on the news. Centered supposedly VERY near A's school, but there are no reports of damage, so I'm guessing all is well over there. Downtown Charleston had "the big one" back in 1886, and people keep speculating about whether we're due for another. Hurricanes, earthquakes.....this is a lovely place we live, huh?

A college friend passed away last night. I swear, we're not supposed to be old enough for this to happen. She was only 34, recently diagnosed with kidney cancer, and just went so fast....it's really scary. Had 3 kids, aged 4 and under. What a sad thing to happen, especially at Christmas. She'd been in Band and Orchestra with K and I, and I'd lost touch with her until just the last few months......found her on Facebook. I read the posts on her blog daily, and was so sad to see the update this morning saying she was gone. But I"m so amazed and touched by the people that are commenting--so many people from all around the world that her story has touched, even people that don't know her at all were following the story and praying for her, etc. They all have such wonderful things to say about her, and they all demonstrate such amazing faith in how they are dealing with the loss. Even her own husband's post to announce her passing starts with the words "God is good!" I can't help but think that my own faith is not equal to his and that I'm not sure I could react this same way if I were in his shoes. Bless him, for being able to rejoice in the fact that she's out of pain and has gone to Heaven.

Back in the mundane world around here....E's teacher at the new preschool is on vacation this week. So guess what? He had his very first "bad day" yesterday, complete with hitting and being sent up to the director's desk for time out. *sigh* *big big sigh* What it shows us, I suppose, is that the regular teacher has a LOT to do with his recent success in the new preschool. Thank God for the assistant director, who spoke to me privately yesterday to point out that the younger teachers who are subbing for Ms. S this week are not always able to manage E as well as Ms. S does, so consequently we shouldn't be too hard on him or be too surprised if this week's behavior is not as good as usual. Yeah, but.......he's just building friendships with these kids, etc, and now he gets to ruin it all by hitting them and getting THAT reputation as a kid who gets in trouble and can't behave, etc. *sigh*

Lastly, tonight's THE night, for A's dramatic debut as the King in the holiday show. Please wish us luck, as I'm petrified he'll have some kind of meltdown, forget his lines, refuse to put on the costume, etc. If things go well, hopefully I"ll have some pics to post later. Keep us in your thoughts tonight!

random stuff in the world of stress

2008-12-08T08:42:00.000-08:00

OMG, the last week of my life could be the model for the phrase "week from hell". Concerts galore to organize and conduct, preparing for the end of the semester, church preparations for Christmas events....basically, just way too much to do and WAY too little time. It felt like I was crawling verrrrrry slowly through a tunnel or a cave. A dark cave, very narrow, just pushing my way through and working toward that light at the other end. Keeping my head down and my movements forward until I make it through.

And now, all of a sudden, I'm out. Sun is shining, I can breathe, the weight is off of my shoulders (for now) and I can re-emerge into the real world of the holiday season as a Mom, wife, etc. Because last week, I was basically nothing but a teacher, and a frantically stressed one at that.

So now, I'm reflecting and trying to think back to enjoy some of the random wonderful moments that have occurred recently........but I was too swamped with everything else to even really appreciate them. Thought I'd share them with you too. :)

Little E just amazes me sometimes with his philosophical comments and observations. Out of the mouths of babes, right? Like last night, after I read his nighttime books and we were turning off the light and saying a prayer. He said he wanted to say a "forgive us" prayer, so I said that was great and he could go first. So he said "God, I know you want to forgive us, from our sins, but I just don't know how you do it." My jaw dropped, and I almost even laughed (but didn't) just out of shock and amazement. How profound, and I presume that this statement is something that many, many people can agree with.

His new fav Christmas special this season is Frosty. The original, of course.....accept no substitutes. :) So we've watched it over, and over, and over. That poor VHS tape is about to give up the ghost, but hopefully it'll last another couple of weeks. During one watching, I was joking with him about how Frosty's first words are "Happy Birthday". I said something like "why does he say that? That's so silly". My mini-philosopher's response? "He says it because Christmas is Jesus' birthday!" Duh, Mom, why couldn't you figure that out yourself? Seriously, I never thought of it that way, but it makes perfect sense and it sure did seem logical and matter-of-fact to him.

Ok, one more..........A finally found out on Friday about something I've known for weeks and very painfully kept secret: He's getting the lead role of King Wenceslas in the school K-2 holiday show. His teacher called me mid-day to let him tell me on the phone, because he was so overwhelmed, touched and excited by this that he couldn't stand to wait for telling me. The teachers said they were crying too, seeing him so surprised and happy and crying. Said it was like he'd won an Academy Award or something. I even was greeted that afternoon at the door of his school by a teacher saying "Aren't you the mother of the King?" :) :) :) My only regret is that I couldn't be there to see it when he was told. He loves that school so much, loves performing, takes it all so seriously and works so hard on preparing his songs, etc......I'm biased, but no one deserves this honor more. And he will be a fabulous King, I have no doubt.

17 days until Christmas......keep your eyes out for posts and pics more in keeping with the season---our tree, the kids decorating gingerbread men, shopping tales, etc. No more bitching (for now) about stupid school-related stuff. I'm getting my priorities back in order, starting now.

I'm quitting

2008-12-03T06:02:00.001-08:00

Is that ok? Just to get in the car and start driving, keep going until the gas runs out? Forget school, forget obligations, forget trying to do the jobs of 2 or 3 people and failing miserably?

2 straws have broken the proverbial "camel's back" this morning. First, I find out that I"m going to be running a dress rehearsal with 40 students after school on Thursday BY MYSELF! No piano accompanist, no help of any kind, just me. The groups sound like crap too, for the most part. No one practices, no one seems to put much time or effort into any of it, but yet they expect miraculous things to happen just by freaking osmosis?!?!?!?!? Right, sure.

And then there's this......K and I are supposed to both attend an ALL DAY Band event in January, on a Saturday. We've done it every January for the last 15 years, as long as we've taught Band. When the kids came along, it got harder to manage, but somehow we've always done it. It's an audition day for students, and if a school has students involved then the director must serve as a judge. The audition site is nearly 2 hours away, and we're there from (I'm not kidding) 7:30 am until at least 5 pm, usually later.

In years past, I've driven cross-state to get my mother and bring her down here (she won't/can't drive here herself) so that she can stay at my house and be the all day babysitter. Then, the next day, I drive her back home. That means a total of 12 hours of driving, not to mention the 4 we drive to and from the audition. But with my increased teaching schedule this year, I really don't see a way to do this (drive to get Mom), so we're in quite a pickle. K emailed the very-single-uber-Band-nerd-jock supervisor of this audition, to ask respectfully if I could be excused from judging this year. Rules say that if you don't judge, your kids don't play.

The response? "I can't excuse anyone for personal reasons." WTF? What kind of reasons DO you excuse people for? Seems like personal reasons are the ONLY ones that would merit an excuse. I have a grand total of 2 (TWO) students auditioning.

2!

2!

Dos!

Deux!

Get the point? He's going to make us find a babysitter (nearly impossible) and then pay them some exorbitant amount for a 12 hour day just so I can come up there and listen to a day full of incorrectly played scales just because I have 2 students involved in this event. This man is such an idiot, so out of touch with real life. No kids of his own, never married, lives and breathes Band and has no concept of anything else, including tact (I know this from past dealings with him).

Guess what, dude? Life does not revolve around Band. It just doesn't. There is more to life, and sometimes grownups (i.e. me and K) have other responsibilities, other priorities beyond stupid Band competitions. If you had a life, you might realize that and have some compassion or flexibility when real life intersects with the all-powerful rules of the band director's association. Please, give me a freaking break. This just makes me want to yank my 2 students out and say "screw you". Then what would you do for a judge? Oh yeah, you'd make do with the people you have, many of which come to that audition every year and sit on their butt all day because they're your cronies. So couldn't you just do that anyway? Oh, but that would mean showing something resembling a heart, and I've yet to be convinced that you have one.

Oh, and did I mention that I already go (as a volunteer) to help at a second Band audition every year? It's not required, but they ask me and I enjoy it. And I go because K can keep the kids, and it works out well. K reminded the supervisor of this, my going "above and beyond", and wondered if this could somehow be counted for my obligation. You can guess the answer for yourself. Jerk. What an absolute jerk. Hope you never need anyone to make an exception for you, to show understanding of a difficult situation. If you do need that, don't come looking to me for it.

not like you see in the movies

2008-11-30T19:53:00.000-08:00

Last year, we discovered that even in the humid, sandy Lowcountry there are Christmas tree farms. The kind of places that let you roam around until you find the perfect tree, cut it down yourself and haul it home. For some reason, I just figured those only existed up north, or in the mountains or Colorado or something like that.....but, turns out SC has several of them, and a couple within decent driving distance for us. So we went, had a blast, and determined that this was what we wanted to do every year from now on. So much more like the "traditional Christmas" that you read about, see in movies, etc.

Fast forward about 365 days, and it's time for the 2nd annual family-trek-to-the-tree-farm. Except this time, it's already been pouring rain for 24 hours, and there's no end in sight. But looking at the family calendar of the next few weeks showed absolutely NO other day to do this, and we're used to getting the tree up on the Sunday after Thanksgiving, so off we went at about 1 pm. The boys were in their old sneakers, we had an umbrella in the van somewhere.......I think......What could go wrong?

How about everything? That tree farm should have advertised itself as "tree bog", I kid you not. Practically every square foot of land was underwater, puddles as far as the eye can see, and any "land" you did see turned out to be more like mud or quicksand once you stepped on it. We tried it, and within the first 2 minutes the boys and I had soaking wet shoes and muddy pants legs. Yuck! I gave up and waded back to stand next to the car in a relatively dry spot. K put E on his shoulders, and A followed behind as they pushed on into the plot of trees. K had to shout to me "do you like this one? What about that one? Doesn't it seem lopsided?" etc until we finally settled on one. I persuaded the boys to make their way back through the puddles to the car, then I took their disgusting shoes off. Eww, and they were nasty. They were each sitting sideways in their carseats, feet sticking out of the car door so I could take off socks too, which were dripping wet. And you can imagine that there was no way for me to hold that elusive umbrella, so I was getting wetter by the second. Finally, I got into the driver's seat, took my own shoes off and knocked them against the outside of the car door in a futile attempt to get mud off.

Whew, closed the car door and we were safe. Not dry yet, but safe from further drenching. Until K came to the door and reminded me I needed to write the check to pay for the damn tree.........I'm not even sure the check will be accepted by their bank, based on how wet it was by the time I got finished. Is there a a maximum on water droplets per square inch? I think we passed it.

Can I just say that today was NOT that idyllic, beautiful, traditional Christmas family outing? The tree's up, it's dry, it's decorated and it is truly pretty. Maybe one of our prettiest ever. But the process? Not something I want to repeat. Next year, I'm checking the weather forecast before we decide where to buy the tree.

Tagged

2008-11-25T19:13:00.000-08:00

Well, I've been tagged.....by Jen at Unique But Not Alone. The instructions are these:

1--choose the 4th picture folder on my computer
2--choose the 4th picture
3--explain the picture
4--tag 4 other people

Here's the pic:

This is A at his 6th birthday party, a bowling party. One of his buddies is the kid with the awesome blond hair, and E has his back to the camera.

This is fun, thanks Jen. :) Ok, now I'm tagging Tafka at House of Tafka , Heather at Bubbles and Ducks , Betsy at Belphia, and Sarah at Two Princesses, a Queen and and old Frog . Have fun, girls!

I wanna go!!!!!!!

2008-11-24T18:35:00.000-08:00

I just need a place to whine, to vent a minute. What else is new, you say? Yeah yeah yeah, shut up, it's my blog, after all, right? ;)

I'm involved in an online support group and forum for Parents of Children with Autism, and through that group have made some really wonderful friends. So many of the ladies there are so incredibly strong, so wise, so knowledgeable, and funny and sweet to boot. Why am I telling you all this?

Well, a group of them is planning a trip to Vegas, coming up in February 2009. So now, on the forum, they're chatting about plans, ideas, where to stay, what to do or see, etc. WAAAAHHHHHHH, I wanna go. :( It's not gonna happen, no matter how much I need it.

They're planning on doing such fun stuff.....time at a spa, maybe some shows, gamble a bit, hanging out with the girls and some cocktails, etc. And I NEED this so much, after the last few months we've had around this house. But 2009 is going to be such a busy and expensive year for us, there's just no way. Going to Disneyworld next summer, still hoping to move across town to get closer to school and work, etc.......there is not a spare $1000 lying around to send me to Vegas for the girls weekend.

Sometimes, I feel like my life and experiences have been so incredibly limited. Never left the lower 48 states, not even to cross the border into Canada for an afternoon like K has. And it's looking like I never will. I want to travel, I want to see things and learn things and do things.......but until teachers start getting paid like doctors or lawyers, I'll be staying home. And that includes Vegas. :(

better than I could say it

2008-11-24T07:23:00.001-08:00

Today's posted is something borrowed, shared with me by a great cyber-friend, a sister just like the ones described below......

To You, My Sisters

by Maureen K. Higgins -

Many of you I have never even met face to face, but
I've searched you out every day. I've looked for you
on the Internet, on playgrounds and in grocery stores.

I've become an expert at identifying you. You are well
worn. You are stronger than you ever wanted to be.
Your words ring experience, experience you culled with
your very heart and soul. You are compassionate beyond
the expectations of this world. You are my "sisters."

Yes, you and I, my friend, are sisters in a sorority.
A very elite sorority. We are special. Just like any
other sorority, we were chosen to be members. Some of
us were invited to join immediately, some not for
months or even years. Some of us even tried to refuse
membership, but to no avail.

We were initiated in neurologist's offices and NICUs, in obstetrician's offices, in emergency rooms, and during ultrasounds. We were initiated with somber
telephone calls, consultations, evaluations, blood
tests, x-rays, MRI films, and heart surgeries.

All of us have one thing in common. One day things
were fine. We were pregnant, or we had just given
birth, or we were nursing our newborn, or we were
playing with our toddler. Yes, one minute everything
was fine. Then, whether it happened in an instant, as
it often does, or over the course of a few weeks or
months, our entire lives changed. Something wasn't
quite right. Then we found ourselves mothers of
children with special needs.

We are united, we sisters, regardless of the diversity
of our children's special needs. Some of our children
undergo chemotherapy. Some need respirators and
ventilators. Some are unable to talk, some are unable
to walk. Some eat through feeding tubes. Some live in
a different world. We do not discriminate against
those mothers whose children's needs are not as
"special" as our child's. We have mutual respect and
empathy for all the women who walk in our shoes.

We are knowledgeable. We have educated ourselves with
whatever materials we could find. We know "the"
specialists in the field. We know "the" neurologists,
"the" hospitals, "the" wonder drugs, "the" treatments.
We know "the" tests that need to be done, we know
"the" degenerative and progressive diseases and we
hold our breath while our children are tested for
them. Without formal education, we could become board
certified in neurology, endocrinology, and psychology.

We have taken on our insurance companies and school
boards to get what our children need to survive, and
to flourish. We have prevailed upon the State to
include augmentative communication devices in special
education classes and mainstream schools for our
children with cerebral palsy. We have labored to prove
to insurance companies the medical necessity of gait
trainers and other adaptive equipment for our children
with spinal cord defects. We have sued municipalities
to have our children properly classified so they could
receive education and evaluation commensurate with
their diagnosis. We have learned to deal with the rest
of the world, even if that means walking away from it.

We have tolerated scorn in supermarkets during
"tantrums" and gritted our teeth while discipline was
advocated by the person behind us on line. We have
tolerated inane suggestions and home remedies from
well-meaning strangers. We have tolerated mothers of
children without special needs complaining about
chicken pox and ear infections. We have learned that
many of our closest friends can't understand what it's
like to be in our sorority, and don't even want to
try.

We have our own personal copies of Emily Perl
Kingsley's "A Trip To Holland" and Erma Bombeck's "The
Special Mother". We keep them by our bedside and read
and reread them during our toughest hours. We have
coped with holidays. We have found ways to get our
physically handicapped children to the neighbors'
front doors on Halloween, and we have found ways to
help our deaf children form the words, "trick or
treat." We have accepted that our children with
sensory dysfunction will never wear velvet or lace on
Christmas. We have painted a canvas of lights and a
blazing Yule log with our words for our blind
children. We have pureed turkey on Thanksgiving. We
have bought white chocolate bunnies for Easter. And
all the while, we have tried to create a festive
atmosphere for the rest of our family. We've gotten up
every morning since our journey began wondering how
we'd make it through another day, and gone to bed
every evening not sure how we did it.

We've mourned the fact that we never got to relax and
sip red wine in Italy. We've mourned the fact that our
trip to Holland has required much more baggage than we
ever imagined when we first visited the travel agent.
And we've mourned because we left for the airport
without most of the things we needed for the trip.

But we, sisters, we keep the faith always. We never
stop believing. Our love for our special children and
our belief in all that they will achieve in life knows
no bounds. We dream of them scoring touchdowns and
extra points and home runs.

We visualize them running sprints and marathons. We
dream of them planting vegetable seeds, riding horses
and chopping down trees. We hear their angelic voices
singing Christmas carols. We see their palettes
smeared with watercolors, and their fingers flying
over ivory keys in a concert hall. We are amazed at
the grace of their pirouettes. We never, never stop
believing in all they will accomplish as they pass
through this world.

But in the meantime, my sisters, the most important
thing we do, is hold tight to their little hands as
together, we special mothers and our special children,
reach for the stars.
____________________________
I know that many of you who read this blog are also my sisters, in this special way. If you are, I send you extra ((((((((((hugs))))))))))) and want you to know how much I appreciate your support, understanding, and friendship.

something happy for a change

2008-11-20T07:55:00.000-08:00

....and damn it, it's about time. :)

Went to pick up A from school yesterday, driving around in the car loop, waiting my turn to drive up to the sidewalk and have a teacher open the van door to put him inside. (gotta love elementary school!) The music teacher happened to be the one helping him today, and as she helps him step up into the van, she says to me "I need to talk to you" in a very serious-sounding tone and serious face.

Fear grips my heart, wondering what on earth had happened today......a major meltdown, horrible teasing and making-fun of him, he said or did something totally inappropriate, etc. She closed the van door behind him, and walked around to my side. Still looked very serious, and says to me "do NOT say a word" and then leans in to whisper to me. She also said to A "cover your ears, I need to tell Mom a secret" which he did, without hesitation.

Then, up close, she started smiling and said "Mr. D (drama teacher) and I have talked over who should get special parts in the Christmas show, and we want A to be the King!" I smiled too, naturally, and clarified that she wants me to wait for them to tell him, not to reveal it myself, and she agreed. Apparently, the King is "Good King Wenceslas" and this is basically the lead part!

We said goodbye, and then he took his hands off of his ears, and said "is it a secret just for grownups?" I said yes, that for now it was just something for grownups to know. But wow, this is HARD to keep this secret from him, and from the world. I'm soooooo very proud of him and excited for this recognition! Thank you, Lord, for giving us the opportunity to send our kids to this wonderful school with wonderful teachers! :) Way to go, little man. Pics to come......the Christmas show is Dec. 16.

a turning point, maybe

2008-11-18T18:21:00.001-08:00

The last week has been one of the most stressful I've had in a long time. Maybe among the most stressful ever. We've pretty much run the whole spectrum of emotions.....fear, anger, resentment, worry, relief, even faint hope. I'm just working to take this one day at a time, and to focus on the small victories as they come. :)

How did this week from hell start? With me being told that E will no longer be allowed to attend the preschool he's been in since he was 5 months old. Even though I just typed that sentence, I still find it somewhat hard to believe this really happened. And now, almost a week removed from the initial shock, I have been able to put a thin layer of gauze over the wound. It'll heal, but it'll take a while, and right under the surface is some pretty hefty anger and bitterness.

Sometimes, I just want to rip that gauze off and wallow in the anger a little.....do you mind? I just want to ask "who do these jerks think they are?" Discussing my little man among themselves, and then ganging up to call the school en masse to complain. Claiming all kinds of BS, like their kids are scared of E.

PLEASE, give me a damn break!

Most of these people live in an entirely different world than we do, and our little circles only intersect in this one place, that preschool. I can say pretty comfortably that the parenting lives of these people have NO similarity to mine, and that they have no experience with or sympathetic view of anything resembling special needs. All they know is that little princess doesn't want to be in class with that boy anymore, or they don't want her exposed to that kind of child (who obviously must have horrible parents that either 1) do not discipline him or 2) need to pursue psychiatric care for him).

Excuse the hell out of me, people. Didn't realize that your child's education was so incredibly hampered by being in class with my son. I thought maybe the problem was the teachers who have no control of the class, or the overcrowded room with too many kids, or the numerous other kids who don't listen/can't stay still/can't keep hands to themselves. And by the way, in case you forgot.........they're freakin' 4 YEARS OLD!!!!!!!! This is not life and death, people, nor does it ruin their chances for going to Harvard or being Miss S. C. if they have to suffer through K4 with a child who might have different needs and challenges.

But you know what? You know who has the last laugh? We do, thank you very much. Because now, E is a successful, participating member of another K4 class, a smaller class with a better teacher, better curriculum, more space, and better facilities. And he's happy. And behaving well. And learning. And excited about school.

So you take your precious little children to your school every day, ok? And just keep on deluding yourself, thinking that you "won" and relishing the feeling of power in knowing that you ran off a 4 year old. You made the director cave, and flexed your muscles (i.e. money) to get what you wanted. Never mind the years worth of work and service I've dedicated to that place. Never mind the loyalty, never mind the connections we have. Screw that. Bottom line, YOU couldn't meet my son's needs. That's clear, now that we have found a place that can. So we're better off, and I'm closing the door on that part of my life, and his.

_____________
(that felt good, thanks for listening) :)

Damn preeclampsia!

2008-11-13T08:05:00.001-08:00

That's what I feel like saying today. Saying it LOUDLY, screaming it from the rooftops for anyone who's listening to hear! Damn preeclampsia!!!!!

I need a scapegoat, that's my current problem. I need someone or something to blame, to be mad at, to hate for the things that have been done to my family. And the nearest and most logical scapegoat is preeclampsia.

Isn't it PEs fault that my babies were born far too early, too small and too sick? If not for PE, I might have enjoyed a normal, happy, healthy pregnancy. Might have gone through labor rather than having 2 c-sections. Might have brought my babies home with me in 2 days, rather than 2 or 3 months.

And it's not just about pregnancy and birth.....if not for PE, my children might very well be neurotypical today, normally and typically developing little boys with normal, typical lives. Seems weird to wish for typicality, to wish for ordinary-ness, but I do. Without preeclampsia, which then caused the prematurity, A might not be on the autism spectrum, and E might not have ADHD and severe aggression and impulsivity.

Maybe it's ridiculous to blame it all on the preeclampsia, but somehow it helps. Gives me something to lash out at, something to hate, something to focus the anger and the hurt on. And it does hurt, all the time. Maybe that's pathetic, considering my last bout with PE was nearly 5 years ago. But because its effects are so long-lasting in my kids' lives, and in MY life, it doesn't seem to matter how long ago it was. I HATE preeclampsia! May the researchers find a cure for it, soon, and a way to prevent other families from having to suffer pain and loss because of it.

Scared and sad

2008-11-11T18:18:00.000-08:00

I think this must be what depression is. I've experienced it before, and don't remember feeling quite like this, but I just know I feel the classic way you hear depression described as.......tired, sad, feel like just crawling into bed and staying there. I'm not keeping up with stuff for school (work) the way I need to be....it's easier to procrastinate and let things slide. Takes all of the effort I can muster, sometimes, to do anything but just sit in front of the computer and go back and forth between the websites I visit. I nearly couldn't get up and make dinner for my children tonight, I kid you not.

And the biggest reason for this "funk", this emotionally exhausting and draining depression phase? My youngest, little E, my micropreemie miracle. Every day brings new lows in his behavior, at home and at school, and it's so scary to see this precious little guy with the sweet lispy voice get so very angry and lash out......at me, at teachers, at friends, at everyone. He has literally no impulse control, seemingly nothing inside that pulls him back or stops him from doing the first thing that comes to mind when he gets upset or mad.

In one of those bizarre, random trains of thought that I sometimes have, I was reminded today of the play "The Crucible" by Arthur Miller. One of my favs, but I digress. It's a depiction of the Salem Witch Trials. At least one man, as I remember, was accused of witchcraft and killed, but he wasn't hung, he was "pressed to death". He was made to lay on the ground, and heavy stones were placed on his chest, one by one. Guess the accusers thought that he'd eventually give in and admit to being a witch, but he didn't. They say his last words were "More weight". He knew he was innocent, and was determined not to admit to something he hadn't done.

Why the hell did she tell us that story? you might ask. Well, you know my love of metaphors, and right now I feel like I'm getting the "pressed to death" treatment too. Every day, a new heavy stone is added to the weight I'm carrying, worrying how to help E and what on earth we can do about all this. "He kicked Miss Mary today" = add another stone. "He was so hyper, couldn't calm down, and then he bit Sara" = another stone. "We just didn't know what to do for him this morning, sent him to the director's office twice because he was throwing chairs" = another stone.

When does the weight get to be too much? When it crushes me? How far am I from that point? Is there a way to lift some of the weight off? I'd do it in a second, if I knew how. Instead, I just slog onward.....eating my way into oblivion and barely getting through the days. Can't keep up with anything, or so it seems, and when I do have a spare few minutes to do something productive, I usually can't bring myself to do it. Too hard, too much effort needed, I'm not up to it. I know that this isn't healthy. If you're a praying person, send some our way, would you? Thanks. Something's gotta give, as they say, but we just don't know yet what (or who) that something will be. :(

the post-election wrap up

2008-11-07T19:24:00.000-08:00

Well, I said something about this in my last post about the blog award, but just felt like it wasn't enough. No words, truthfully, would be enough to really do justice to how it feels to have won this election.

Does that sound weird? Are you thinking "does she really think SHE won it?" Well, as a matter of fact, I do. But not just me. All of us, all Americans. I am fully aware that several million people disagree with me right now, and might never be convinced, but that's ok because the freedom to dissent is part of what the Founders wanted and part of what makes America great.

Nevertheless, I'm convinced and I know in my heart that our country was the true winner on Tuesday. With Barack Obama as our next President, I feel hopeful about the country's future again. We can regain our standing and respect in the world, and begin to bring the troops home from Iraq, finally. We can show respect and consideration for the rights of all, not just a few. I will be able to watch video of our President in public appearances without cringing in embarrassment; thank God for someone who can complete a coherent sentence and will speak respectfully, intelligently, and without the ever-present smirk and condescension.

Diversity will not be a bad word, or just a catchword, but a reality! And yet, having said that.....I believe that my family and I have infinitely more in common with the Obamas than with the Bushes, despite the differences in skin color. Maybe we can actually not just embrace diversity, but some kind of "post-diversity", because the more we learn about so-called "diverse" people, the more we often find that we are alike, not different.

So, let's send Mrs. Palin back where she came from, and hope she won't be heard from again anytime soon. She needs some time to find a publication or two she wants to read, after all. As for John McCain...I just shake my head at the thought of what could have been. I admired you, even thought I could support you as a candidate, once upon a time in 2000. But you sold your soul, sacrificed your own standards of acceptable campaign behavior, all for the chance to be President. And where did it get you? Nowhere except back to the Senate. Don't you feel dirty now, after the tactics you used and allowed your people to use? What a shame....you used to stand for something, and now you stand for nothing but yourself.

But let's end on a high note, shall we? The moment, at 11 pm EST on Tuesday night, when the networks called it and proclaimed that Barack Obama would in fact be the next President.....I get chills thinking of it. It was like a comforting wave washing over me as I heard the words, and I just sat mesmerized in front of the TV, drinking it all in. After the seemingly endless nightmare of the last 8 years, it's still hard to believe it's about to end. Congratulations, Mr. President-elect. A music teacher and her family from South Carolina are immensely proud of you, and are beaming inside with a bright blue light in the crowded sea of red around us. Thank you for all you have done, and for what you will do, and may God protect you, your family, and our country.

I feel special!

2008-11-07T10:15:00.000-08:00

Thanks, Miss Tafka, for bestowing on me my first ever blog award! WOO HOO!!!! I love blogging, don't get to do it often enough these days, but am really honored to have this award and be able to display the award banner here---> :)

Anyway, the receiving the award means you need to list 6 things that make you happy. So, here goes:

(in no particular order)

1. performing music. I'm an instrumentalist first, and a singer second, even though these days there's much more singing than playing going on in my life. But getting the chance to be a part of good musical performance is a feeling that cannot be duplicated any other way. I'm so thankful for the gift of music and the ability to perform, and hope that I will always have that opportunity, one way or another.

2. the election of Barack Obama as our next President. (you knew that was coming, huh?) It renews my faith in the political process, and in the people of this country and their ability to be inspired and excited about government and our leaders. No, this won't solve all of our problems, and I know the road ahead for him will be tough, but the fact that he fought his way through the lies and smear campaigns and came out on top........gives me chills just to think of it, even now.

3. Seeing things through the eyes of my boys. When we go to new places, see new things, or enjoy special times like Halloween or Christmas, it makes those events so much MORE special when I see how much the boys are enjoying themselves. Watching them get excited about what Santa brought, or splashing in the ocean, or even watching a cool new movie.....you can't beat that for instantly putting a smile on your face. :)

4. Driving. At least, most of the time. Let me rephrase that: The part of driving that involves movement, NOT sitting in traffic jams, is the part I enjoy. I really do like it, strange as that seems! LOL, maybe I ought to have been a truck driver! Guess it's a good thing I've got a decent-sized commute every day to school. ;)

5. The endless variety of things to listen to on Sirius satellite radio. :) Great talk radio stations (lots more progressive choices than you hear around this area....), every kind of music format you can imagine, great comedy stations, news, old radio shows from the 40s/50s etc, even a station for the kids' music. (*see #4, about driving. These two go hand in hand most of the time, because when else do I get a chance to listen to the radio?)

6. My hubby. Not like we see each other much these days, with the busy school/work activities that we both have going on night and day, but I still wanted him to be on this list. He's a great guy, great dad, tries hard to help out around the house when he can, etc. I know how lucky I am to have him, and hope that he realizes how much he is appreciated. :)

There ya go, Lori. :) Thanks again for the award, I love it! Now, I think I"m supposed to pass it on, right? And like you, I know so many of the same blogging friends that it's hard to find 6 to give the award to, so.......I'll just choose Jen at Unique but Not Alone, and Betsy at Belphia. Congrats girls, hope you like the award as much as I do! :)

I don't like those wires

2008-10-28T19:01:00.000-07:00

In the last week or so, little E (the 4 year old, former micropreemie) has gotten really interested in looking at his baby photo album. The one that has the pics of him from birth until age 9 months or so. He wants to carry it around the house with him, and if I dare put it back on the shelf where it belongs, he gets it back down and asks for one of us to look at it with him.

It's amazing, isn't it, how the littlest of kids can sometimes say the biggest things? The things that just pierce your heart and throw you for a loop? Well, sometimes I think my boys are the champions at doing just that. When E first took out the photo album last week, and looked at those first few pictures of him in the first days of life, he asked me "what are all those wires, Mom?" Pang-in-the-heart #1. "Well, those were wires that connected you to machines that helped to take care of you after you were born." "You remember that you were a baby in the hospital?" (that's the phrase he and A use to describe preemies) "Yeah, I remember."

"Well, that means that you were sick when you were born, and needed the doctors and nurses to take care of you for a while." "What about that one?", motioning to the nasal cannula that gave him oxygen. "That helped you to breathe, it blew air into your nose so that you could breathe better."

Then he did it, the pang-in-the-heart to top them all: "I don't like those wires on me, Mom". Guess what, buddy? Neither do I. :( Oh how I wish that your newborn pictures, your first 3 months worth of pictures, didn't have "those wires" in them.

Every day since then, as he looks at those early pics, he'll say it again: "but I don't like those wires". Our saved pics on the computer come up now as the screen saver......it scrolls through a random assortment of pics until you tell it to stop, basically. Tonight, he said it again, while sitting in K's lap at the desk. "There's me when I was a baby, but I don't like those wires, Dad."

"I know, hon, I don't like them either."

:(

Did you ever wonder.....?

2008-10-22T08:12:00.000-07:00

...about the twists and turns of life, and how seemingly random occurrences can have such a long-lasting impact? Maybe it's just me, I'm weird and I think about these kind of things.

You know the stuff I mean, the ways in which certain people pass through your life, and end up becoming big parts of it. If you'd never met them, if you'd not gone to that party or chosen a different college or driven down a different street (literally), your whole existence might be different today. Not necessarily bad or good, just different.

I think these kinds of thoughts maybe occur more often for parents like me.....parents of preemies, of special needs kids, of challenging parenting situations, etc. It's easy, sometimes, to wallow in the worries and the fears and the self-talk of "but if I'd only...." or "if I just had not done....". You can beat yourself to a bloody emotional pulp doing that, trust me. But it doesn't change the reality of daily life, doesn't make things easier to deal with along the way......in fact, it might make it worse.

Even if I start my "what ifs" with the fact that the boys WERE preemies, don't even go back beyond that.....I can see how the entire path of my life has been forever altered by that fact. Practically every single move I've made since Aug. 2001 has been somehow influenced by this--career moves, where we live, where we send the kids to school, how I spend my days and nights, etc.

All the things that I knew absolutely ZIP about before that time, I now know intimately, things like what the NICU is, what Asperger's Syndrome means, how it feels to give your child medications (and I don't mean stuff like Tylenol). If you'd asked me what acronyms like these stood for, I probably couldn't have deciphered even one, but now........

Why don't you try it? It'll be a fun game!

ASD
PICC
PDA
BPD
ROP
NNP
CP
DD
PDD-NOS
OT
SLP
RDI
ABA
SPD
As, Bs and Ds
ECMO
ADOS
IEP
IFSP

...and that's just off of the top of my head. If I'm 100% completely honest with myself, I will admit that I didn't want this, didn't choose this road and often find myself wishing I wasn't on it. I never knew squat about IEPs and 504 plans in schools, and would have been just fine thank you very much not to have ever known about them. I would have been just fine to not ever see the inside of a therapist's office, or to have one see the inside of my house.

But thanks to a great friend, who blogs here, I'm taking another look today at the bright side of my life, the side in which I recognize how truly blessed I am to have these 2 amazing sons. 15 or 20 years ago, neither would have even survived their birth, probably, or would just have lasted a few hours or days. And just as I now can't imagine life without therapy and diagnosis and disability and struggle, I also can't imagine it without A and E, the lights of my life. When they smile, when they hug me, when they say "I love you, Mom", I know that I'd rather be on this road than on no road at all. Any day, any time, put the path in front of me and I'll follow it. Therapists? Bring 'em on. Behavior plans, medications? Where do I sign up? Because if that's what it takes to make the best life possible for my two little miracles, how can I do anything less?

Lord, I pray for strength, for perseverance, for patience and creativity, and the ability to care for and nurture these boys in the ways that are best for them. Amen.

musings on a Thursday

2008-10-16T06:41:00.001-07:00

Ok, so I promise I'll spare you an extended political rant today. Really. I have become addicted to the website and will just summarize last night's debate with the comment written on that site at 10:31 last night......"Congratulations, President Obama". :)

So what about regular, day-to-day life in Lowcountry SC? It's ok, still WAY too hot for Oct. 16, I'll say that. Little E is having a pretty good week, we're still struggling with the regulation of his medicine. What medicine, you say? Well, let me remind you or fill you in if you missed this development......

Well, the developmental pediatrician gave him the expected ADHD diagnosis a few weeks ago (early Sept.). I knew, in my heart, that it was coming, and the more I read and hear about the H part of ADHD, the more it confirms my fears. It's so common in former preemies, especially micros like E, so I guess it was nearly unavoidable. We started on Tenex, a very small dose, and have been watching and tweaking for a month and a half now.

We went from 1/2 mg in the morning to 1 mg, because he was still exhibiting a lot of the aggressive and impulsive symptoms that the medicine is supposed to address. 1 mg was WAY too much, and made him very, very lethargic--all he wanted to do was lay on the bed at home, and at school he was falling asleep in his lunch. :( We went back to 3/4 mg, and it worked for a while but the effectiveness faded and we STILl saw the impulsive behaviors. (Disclaimer--all kids can be impulsive, and he is only 4, but it's not ok to hit/bite/kick teachers and friends, or to blurt things out loudly and over and over in class)

So, pedi said to try going back up to 1 mg, that maybe his body was ready for that now since he was used to 3/4 mg already. She said to give it at least a week for the side effects to settle down and to really see the effectiveness (or lack?). Yesterday was 1 week, and Tuesday was really the first day we didn't see the sleepiness. I hate seeing him like that, it kills me. He's got such a sparkly and sweet personality (I know, you're thinking ? considering I just said that he hits and kicks people.....it's complicated) He's typically so curious, creative, sweet, funny, energetic, and when the meds are too much we just lose that, we lose HIM along with those undesired behaviors. :( :( :( Maybe, just maybe, we've found the dose that now can strike the balance.....keeping what makes him "him", but muting those behaviors that aren't socially acceptable and aren't going to be ok in elementary school and beyond. Wish us luck, and keep us in your prayers too.

Postscript: There's just so much about being a parent that I never knew, never even thought I'd have to experience. I can truly say that parenting is the toughest and most rewarding job of my life, AND that every part of it up to this point has been unexpected and different than what I imagined. For the bad, as well as for the good.

this crap is getting scary!

2008-10-14T08:09:00.000-07:00

Of course, I mean the election/campaign process. I had a student last week tell me, unprovoked, that "if Obama wins, I'm moving to France". My response: "Are you packing your bags yet?" (yeah, I know, I probably shouldn't have but couldn't help it) And then, last Friday, another student saw my Obama bumper sticker, asked me if I support him, then went off on a rant about "the only thing he's going to do for you guys is....." . That's when I stopped listening, and interjected "what do you mean YOU guys? Wouldn't he be the president of everyone, don't we all live in the same country?" :(

And the news reports about the angry people at Republican events yelling "kill him" "terrorist" "traitor" "off with his head" "bomb Obama" etc. I'm sorry, but this is scary and ridiculous. I do not want John McCain to win, but would never shout things like that about him at any time in any situation. I absolutely cannot stand (read: HATE) President W, but would not say "kill him" or "terrorist" or anything like that, no matter how tempting it is.

We've lived the last 8 years with basically half of the country very unhappy, very disenchanted with the administration and way the country is being run. We feel that the election of 2000 was settled incorrectly, and that Bush should never have become president to start with. We feel that our country was taken to war when it shouldn't have been, and thousands of our brave soldiers died and were injured in that war when their lives and their efforts could have been put to much more use serving our country as whole, living people, not martyrs to a cause we don't agree with. But despite all this, despite the anger and frustration and disillusionment and sadness.....I do not say "Kill him" about President Bush, nor will I.

Shame on you, those that have shouted these epithets at the Republican events. You claim to be Americans, claim ownership of "family values" and being "pro-life".....how's that working out for you? Somehow the "kill him" doesn't quite jive with the pro-life agenda, at least not in my way of thinking.

so very unfair

2008-10-01T10:29:00.000-07:00

I tell you, if this is what getting older is like, you can have it because I don't want any.

In the last month, I've had a long time friend diagnosed with breast cancer and subsequently have a mastectomy, another long time friend die suddenly of a heart attack at age 45, and today I learned that a wonderful friend and fellow preeclampsia survivor has lost her second baby, who was stillborn after suffering multiple heart defects.

It just seems like everywhere I look these days I see examples of how hard, unfair and even brutal life can be. It's not like this just occurred, and the world suddenly became a difficult place full of struggling, pain and loss. I know it's always been that way, and always will be, but I guess it's just hitting close to home right now.

I have wonderful networks of friends online, in both the autism and preeclampsia communities, and we all carry burdens each day. We like to share the weight of them by leaning on others, telling our stories, complaining, venting etc, but sometimes it seems like there's just so much weight to carry that even when we share we can't lift it. Moms of precious kids on the spectrum who hurt themselves and others, don't speak, are still in diapers, and the valiant families behind them who work hard every day to give them good lives and happiness. Ladies who can't conceive, or who did so but have lost a baby due to miscarriage or through stillbirth. Moms of preemies, who delivered babies far before their time and suffer through weeks or months of hospitalization and lifelong delays or disabilities. And on top of that, illnesses and deaths in my own circle of local friends.......sometimes I think this is just too hard.

Now I know what people mean when they talk about feeling like a hamster on that stupid wheel that they like to play on. You just keep running, keep trying, but never really get anywhere. You get up in the morning, get on the wheel, and valiantly begin. Work hard all day, only to feel like you're in the exact same place by nighttime (maybe even a bit further behind, if you're tired). Sleep a bit, get up and start it all over again. Is that why they call it a rat race?

I don't want it to be that way. I don't want to have my eyes fixed on the wheel and only the wheel........I want to notice what's around me, and allow myself to enjoy the little things that DO remind you that it's worth it, this thing called life. The way little E laughs, A's hugs and how he tells me he loves me so much that he can't even carry all of his love, smiles on the faces of students when they perform well and succeed. But those things are crowded out lately, by the losses and the pain and the struggle. I'm not so sure about that saying "that which does not kill us makes us stronger." That's looking like a pile of BS right now.

hello from Red State USA

2008-09-29T10:33:00.000-07:00

Well, we're now down to just 34 days until the election. I can't believe it, this process seems like it's been going on forever! The first big debate was last Friday, and I was proud of the job Obama did in holding his own, looking distinguished, calm, and presidential. He sure didn't smirk, sneer, laugh or be sarcastic towards his opponent, unlike someone else I could name.........

On Saturday, I took A to a birthday party for a classmate. His school is small, and by now we pretty much know everyone in the 2nd grade (only about 75 kids total). Several of the same kids have been to a few parties recently, so I've chatted with their Moms. 2 Moms were at the last party as well as this one, and we talk "small talk" about the kids, the school (LOVE IT!), our families, etc. This time, though, "Mom 1" asked if we'd watched the debate. Both of us ("Mom 2" and me) said we had, although admitted it hesitantly. Mom 1 asks if we want to discuss it, and Mom 2 says that maybe she should say up front who we support before going down this road.

Mom 1 = McCain. Mom 2 = Obama. I jumped onboard once I knew I wouldn't be alone in defending O. I just didn't want to fight that battle and be outnumbered. After that, it was awkward but ok. We were all nice, civil, etc, but expressed ourselves. Mom 1 tells us "I just don't like the wife" which meant Michelle Obama. We asked why, she said "she seems like a Black Panther to me". WTF? We countered by saying how much Sarah P worries us, that she's so close to being president but is so unqualified, etc.

It just brings to my mind thoughts about how reluctant we Democrats have to be around here to admit who and what we are and what we believe. Thankfully, there are a few other Obama bumper stickers here in the parking lot of my school, but it's not like that community-wide or state-wide. SC is extremely Red, practically burgundy or maroon, even though it seems to be against the self-interest of a lot of our citizens for them to vote that way. I just got up the nerve about a month ago to put that Obama sticker on my car, and it' s not because I don't support him or fully believe in him, etc. It's that I just didn't want to "go there" by inviting snide remarks, arguments, or even attempts to run me off the road! It's never happened, but I wouldn't be surprised if it did. Good old SC is just chock full of people who think Obama is either: 1--the antichrist 2--a muslim or 3--both. And they won't listen to you tell them otherwise.

Ok, time to pray: Lord, help us as American citizens as we approach this important election. Help us to look and listen with open minds to what the candidates have to say, and to make informed and faithful choices based on that, NOT based on bigotry, ignorance, fear and a reluctance to fight the status quo. Please allow the man who is best suited for the job to win, and to bring a return of peace, safety and prosperity to our country. Amen.

ups and downs, mostly downs

2008-09-07T19:34:00.000-07:00

So, what have we been up to, you ask? Near-miss from Tropical Storm Hanna (or Tropicalanna as my A calls it), extra day off from school because of it, being "tourists in our own town" all weekend (because we can, LOL) and then there's me......vacillating between anger, sorrow, frustration and a desire to just give it all up and walk away. :(

E has finally been started on meds for the ADHD. I say "finally" because somewhere inside, I knew we'd eventually reach this point. Sooner or later, and it was sooner. I don't relish this fact, nor do I want to brag about it, but here we are. Started Wednesday on Tenex, which is not a stimulant and is supposed to help with calming and with reducing aggression, etc. The couple of weeks leading up to last Wednesday were nightmarish in terms of his behavior........preschool calling me several times, just to tell me how bad he was being and to describe his horrid exploits in detail (while I'm supposed to be teaching). When the doc at the ADHD clinic heard all this, she immediately suggested trying the meds now, since not much else we're doing seems to be working.

First couple of days on the meds seemed like miracles to me. I was calmer and more at peace with daily living than I can remember being in a long time. Last few days, not so much. It's making him too tired during the day, and when he's not overly tired he seems nearly as hyper and out of control as before. *sigh* Here we go on that roller coaster I've heard so much about, of adjusting dosages, trying new med after new med, etc. :(

And then there's A, and what happened at church this morning. Anyone who knows him knows that he's a hugger, no question. Hugs everyone, adults to kids, and it means nothing more than that he's excited to see you or to share something exciting with you. Nothing else, ever. I say all this because.....

We have told very few people at church about the Asperger's diagnosis, or being on the spectrum at all, really. It either hasn't come up or just wasn't necessary. Kind of nice, really, to just "pass" with the typical kids and not have to walk around with the scarlet A on his chest (and that A is not for his name, if you know what I mean). During the church services, A sits with various families out in the congregation, because K and I are always sitting up front with the choir. He's done this for several years and is totally fine with it. He's got his favorite families that he gravitates to, and they are (*or so I thought) fine with having A join them for an hour a week.

But today, after service, a man that I already dislike comes up to talk to me. He's a part of one of the families A sits with, and he sat there today. Rather than name this man, let's just call him Baldy. Baldy tells me "I know A's always been a close-space kind of guy, but today he was just getting a little TOO close with the girls, hugging them too tight, not letting go, etc. And ____________(another Dad who sat nearby) was really getting upset at the way A was hugging his daughter, so I tried to talk to A and tell him you need to back up, give the girls some space etc. But he didn't listen to me, so I thought I needed to let you know".

In shock, I said something like "ok, got it" and he moved on. But as minutes went by and I could think, I got more and more and more and more pissed off about this. These stupid, rich, bigoted, lily-white Republican men (and I mean that in the worst possible way) know NOTHING about my child and our reality with him. NOTHING. And to think that the dad of a 7 year old somehow thinks MY 7 year old is doing something inappropriate or even "sexual" by being in his daughter's personal space or hugging her too much/too firmly, is preposterous and insulting. Not to mention chicken-shit, considering that he wouldn't come and talk to us himself or ask questions to potentially learn more about A and why he might do this......oh no, we can't do that. Just send a lackey to come complain to me and talk in a patronizing way, dripping with sweetness and yet dripping with condescension at the same time. Basically saying "I know you guys don't teach this stuff to your kids, but do you mind helping us keep your little pervert's hands off of the angelic girls of this church?"

So I spent the rest of the day stewing over this. Stewing over how to explain this to Andrew in a way that's concrete enough for him to understand, remember and execute. Much easier said than done, for sure. And, stewing over how to respond to these losers in our church who have a problem with how A behaves. Still haven't decided, but I'm leaning towards doing some educating, throwing the ASD stuff in their faces and pointing out that A has no earthly clue what anything sexual is and DOES NOT mean anything inappropriate by his actions. And if the losers can't accept that, A will just sit somewhere else with some more open minded people. But that begs the question.......how will I explain to him that he can't sit with Baldy and crew anymore? :( :( :( :( :(

Bat-asses

2008-08-20T18:17:00.000-07:00

Yeah, that's what I said, wanna make somethin' of it?

Ok, actually, it was little E who said this tonight, right before bedtime. He's currently Batman/Superfriends crazy, asking to watch them every single day after school. The old Justice League cartoon, even the old old old 60s TV show with Adam West, etc. Cracks me up to see him getting so into this!

Anyway, now he's calling everything a Bat-something.....in the same vein as Batmobile, Batcopter, etc. One episode we saw recently had a Bat-arang (yep, a boomerang in the shape of that Batman symbol). So, tonight he's playing with this weird contraption that looks a little like glasses. He puts them over his eyes like glasses, then says "Mom, these are my Bat-asses".

trying not to laugh, trying not to laugh, trying not to laugh..........

"What, honey? Did you say glasses?" "No, I said Bat-asses. Asses are the same thing as glasses". "Um, no honey, I don't think they are". "Uh huh, Mom, these are my Bat-asses, they help me see better!"

Then he runs away toward A's room, shouting to tell him: "Hey, come look at my Bat-asses!" So, what happens when he says this at school tomorrow? I figured if I enlightened him about how this actually wasn't a very nice word, don't say it, etc, it would just make him want to say it that much more. Hope I was right! Raising a bright little 4 year old boy sure is fun............LOL!

I need more arms, and more hours

2008-08-16T19:39:00.000-07:00

Big A has really been enjoying that lovely summer TV staple, "American Gladiators". It's become an obsession of his, truth be told, although I really can't stand the damn thing. :( Anyway, there's an event on the show called Snapback. The contestant has a stretchy cord attached to a big harness around her waist. She tries to pull herself forward on all fours, almost like crawling, and the stretchy cord is held by the gladiator (who's obviously trying to keep her from getting anywhere).

The contestant pulls, strains, grasping for every centimeter she can move forward. As she gets ahead a bit, the name of the game comes into play, and she might Snapback if she loses tension on that stretchy cord. Often, you see a deadlock where the contestant just keeps on pulling, and so does the gladiator, and consequently neither one moves anywhere!

Bottom line, I need more arms. Oh, and a few more hours in the day would be nice too. School officially started for me last Wednesday, and DH and A start Monday (so E will too, going back to preschool). We've got a full life, and are so very blessed in so many ways, I realize this. But it's that freakin' Type A personality in me that can't stand for things not to be "right" or things to be left undone, etc. So when you factor in a new full time job (OMG, first time in 7 years), 2 crazy-active boys at 2 different schools, DH has basically 2 full time jobs, the house, the diabetic cat, both boys in therapies, I'm on 3 volunteer boards for various groups, church choir, community chorus.......I could get so much more done with another arm or two. Or three. Ok, four, tops.

And 24 hours is just not cutting it anymore. If I could eliminate the need for sleep, I'd be in great shape! I'm a night owl anyway, love to stay up and get work done, play online, blog , watch Michael Phelps try to win yet again, fold clothes, etc. But when the morning comes, GRRRRRRRR I hate to get up and I feel like crap. And then I say "I have GOT to stop staying up that late" but I never do. :( Everywhere I look in this house are things I need to do something with......file, clean, put away, fold, throw away, sort, give away, vacuum, reorganize, etc, but I never seem to be able to get to it all. And the Type A girl has a hard time seeing the value in just getting a little bit done--it's hard to say to myself "yeah, but I did get 2 pairs of pants hung into the closet, that's something......" Can I just burn the place down and start over?

So, anyone that knows how to distort time or make clocks stop, let me know, ok? Even like in the old Bewitched TV show, how she could just freeze a scene while she performed some magic or did something she didn't want anyone else to see.....that I could handle. Then, maybe I wouldn't feel so swamped, tired and depressed about all that I'm not getting done these days.

I'm so tired

2008-08-05T17:21:00.000-07:00

It's little E this time, not A. And I just feel so beaten down where he's concerned, behaviorally speaking.

Since K and I are teachers, obviously one of the few perks of that job is having the summer off. We're on the same schedule as the kids, and can be home with them for great family time for all of June and most of July (before the dreaded band camp).

E's preschool, however, has a policy that you've got to continue paying your tuition during the summer, whether your child attends school or not. It's to hold your spot in the program, since there's a long waiting list of people who would take it if you no longer wanted it. Sucks to pay $$$$ all summer when we're at home, but thank goodness this is the last summer we've got to do that.

Anyway, I know that E would not benefit from going for 6, 7 or 8 weeks straight without coming to school---he needs to keep up with his routine and the rituals and expectations of school, at least a little bit. But this summer has worked out in such a way that he's really come to school very very rarely. A few field trip days, a couple of "water play days", and that's about it.

Anyway, he went 2 days last week (1 full, 1 half), and then I'd intended to start this week in sending him all 5 days so that we'd get back into that routine before I start school next week (sob, sob). But yesterday morning, I just plain didn't feel like sending him. No offense to the school at all, you understand. I just thought of it being maybe the last real day of summer for us to stay home together, veg out in our pjs and watch videos, play board games, etc. So I asked him which he'd rather do, and of course he wanted to stay home. He's a "homebody", strange as that sounds.

So I let him stay home. Shoot me, but I wanted to stay home with my children while I can. I wanted one more day of no schedule, no rushing about, etc. Today, however, it bit me where the sun don't shine...........

I took him for the full day today, and they had a bowling alley trip this morning. We'd witnessed last week that if a child badly misbehaves on a trip, then they aren't allowed to go on the next one. I reminded him of this, told him to try really hard to be good and listen on this trip because he wouldn't want to miss a future trip like those other boys did. Got there at 3:30 to pick him up, greeted by the afternoon aide telling me that the morning teacher had left us a note. That's never good.

The note was on red paper. Again, not good. A sad face :( on one side, and the bad news on the other: he'd not been listening on the trip, didn't follow "any of the rules". Therefore, next week he will not be allowed to attend the weekly bowling trip. I read the note, then the afternoon aide says something like, "he really had a rough time today, I think it must be because he's not here all the time, not used to it" or something along those lines.

I'm not really faulting the teachers for their decision, and I'm going to support it (not argue, complain, etc). I'm just mad at myself, I guess, for the fact that doing what I wanted to with them this summer seems to NOT be ok in some cosmic way that I don't understand and don't like. I stayed home during the summers as a child, so did my sister. So did K and his 2 brothers, and just about everyone I know. But my child? Apparently not. And this may seem like just a little thing to whine about in the scheme of things, but I just do not think I can take another afternoon of arriving at the school to see that look on the teachers' faces, knowing I'm about to be hit with yet another bad report. Why does it have to be my child that has to stay in a constant routine of school to be successful? Why is this so freakin complicated?

Gymnastics

2008-08-03T19:56:00.000-07:00

A great friend of mine (who I met first in cyberspace, then in person) gave me some wonderful food for thought this week. She also has a son on the autism spectrum, and always seems to have such wonderful and "deep" insights into the ASD world and our place in it.

I was whining on our ASD forum (what else is new, right?) about the strange place I find myself in as a parent of an ASD child who would be described in the lingo as "high functioning". And in her wonderful way, my friend looked at my situation and put it into perspective, in a way I'd never considered. Really, never. I live with my role as A's advocate, protector, champion, therapist and psychologist 24/7, yet until yesterday I'd never really looked at us in this way.

It's like an Olympic-caliber gymnastics competition, specifically the balance beam. My sister was big into gymnastics when we were young, and she and I have always enjoyed watching the gymnasts on TV, etc. My favorite event is uneven bars, but I digress.

So, imagine with me, if you will: A, and our family by extension, is walking on a balance beam. (did you know that it's only 4 inches wide? oops, there I go again) On the right side of the beam is the NT world, the "real" world. It's so close that we can touch it. We don't actually walk in it, but we skirt along the edge and if we lean over just enough, we can sorta kinda feel like we're in it. We can blend in, merge into the traffic of regular life and pedal like crazy to keep up.

On the left side of the beam is the ASD world. The world of ABA therapy, advocacy, RDI, 1:1, IEPs, classroom aides, special diets, and a daily life of valiant struggles and hard-won progress. We don't really walk in this world either, truth be told. A's in a regular classroom, no aides. We don't do ABA, or RDI, or floortime or VB or anything like that. No special diets, no medications, no delayed vaccine schedule, nothing. He gets speech at school, and we do a social skills group once a week, and that's it.

So, I whine. I whine because I feel like we're walking on this tiny, narrow beam and we don't belong to either of the worlds that surround us. And that means I don't belong either. Not to the oh-so-cool Moms that I see at the park, the soccer games, and church.....my life's not like theirs. And not to the brave, dedicated ASD moms I meet in person and online either. It's almost unfathomable to me what these ladies do on a daily basis, and I don't know that I could be as strong as they are, or keep pressing on if my child was non verbal, or violent/self-injurious, etc.

Bless you, dear friend and fellow Obamamaniac. You know who you are. I guess it takes someone who looks at your life from the outside to truly see it sometimes, to give that rational perspective that you may lack. What was this amazing revelation that she gave me? Well, in a nutshell, it was this: She gave us credit. Credit for the tough hand we've been dealt. Anybody who has a child on the spectrum has it tough, no question there. But when I start thinking that I've got no right to complain about A's struggles, MY struggles, now I can remember her words, like this:

"A has some pretty sophisticated expectations placed on him, because he is so very high functioning. In many ways, your life, navigating him through the NT world, is probably much more stressful than mine - because my son is always so insulated and protected from NT expectations. A has so many more expectations on him than my son does, so I totally understand your frustrations about him, even though I don't have a similar child."

ch-ch-changes

2008-07-27T19:11:00.000-07:00

Well, somehow I managed to go another 10+ days without posting. It's been on my mind, just haven't made the time to get my thoughts together. And I can't even complain about being busy right now, but the busy time of year is just about to start back up........

Anyway, the thought of "changes" has been floating around in my head. Changes of various types. Number one is that (sob, sob) summer is officially ending for my family, as of 8 am tomorrow. You guessed it, tomorrow is the return of the hated, dreaded BAND CAMP for K. I feel like each school year is a merry go round......it's always turning, even when we're not on it. We jump off each summer, do our own thing, no schedules, no plans, it's blissful. Then, reluctantly, at the first of August we synchronize our steps to the movement of the merry go round, and then step on. And we can't get off again until June. I don't want to get on, I don't want to get on, but the merry go round is the life we chose when we both became band directors. So take a deep breath, lift your foot, and here we go........

We've tried hard to enjoy our last week of summer, really we did. We went ice skating, shopping, out to eat several times, to the water park, to the beach. You name it, we did it, basically. One of our dinners out was to a local restaurant that does "kids eat free Tuesday", and it appeared that the entire population of our little town was there with the kids in tow. Inevitable that we'd know someone there, and we did. We'd hardly gotten in the door before we saw a family we know from church. Or should I say, KNEW from church. Ever since then, I can't get them out of my mind, and the whole situation is so sad.

Almost 2 years ago now, we had a very abrupt and almost violent staff transition at our church. Essentially, someone was asked to leave/fired, and for most of us it came completely out of nowhere. Questions still linger about the way it was done, did it even need to be done, etc, and I don't even know how to answer that because it was all so secretive and I never had all of the info. But the bottom line remains: it created a big split in the church, and several families that we'd known well and who were active and integral parts of the congregation decided to leave. The family we saw last week was one of those. I haven't laid eyes on them since that time. They have 3 kids, and I was floored to see them and how big they are! How dare they keep on growing, even when I no longer see them as they do it?

It was so awkward though, and I hated that. We were across the restaurant from them, and it was crowded, but we basically just waved at each other and nothing else. We could have gone over to speak to them, or they could have come over, but we all chose not to for some reason. It's like there was a wall there now, and we all felt uncomfortable going across it, so we just didn't. This family, and the others who left too, are great people and were assets to the congregation who (in my opinion) are still missed. I know I miss them. Why does stuff like this have to happen?

Oh, and then tonight we got some horrible news. A friend, a mentor, a colleague, just was diagnosed with breast cancer. I don't know any details yet, we heard this secondhand through another colleague. This wonderful lady has been my friend for 15 years, and I worked with her for 8. She's taught me so much and is a fabulous band director and fabulous lady! I don't see or talk to her as much anymore, since I work on the other side of town (literally and figuratively). But now this news comes, the night before band camp starts. I cannot imagine what is going through her head right now. I DO know that she has a tremendous faith in God, which she's shared with me many times. She helped us so much when our kids were in the hospital, and always reminded us to stay faithful and rely on God to help us all through what was a painful and scary time. Now, this is HER painful and scary time.

So if you don't mind, I think I'll end this with a prayer:

Lord, be with my friend today and in the days and weeks to come. Give her the strength, physically and mentally, to face the treatments that she will undergo. Be with the doctors and nurses; help them provide the very best in compassionate care for her. Be with her co-workers, and her band students, that they may find ways to support and encourage her as they prove the old saying "the show must go on". And lastly, please give me and all of her friends and family consolation in knowing that you are caring for her and that all of this is a part of your plan. Amen.