Archive for February, 2009
As a parent, and as a parent of a child with special needs, I am constantly amazed at the dramatic highs and lows I experience. Fortunately they seem to mostly come together, and the end result seems to be one of some balance of sorrow and joy. I suppose that’s how it is for all parents, but I’ve always thought there was an entirely larger range of the ups and downs for those of us lucky enough to parent these very special kids.
So this week, arguably one of the toughest I’ve had as a parent, and one full of heartbreak, anger, stress, and concern over C’s immediate future, I’m thankful it was tempered by the big reminder (stay tuned next week for details) that I have the most amazing child. His heart, bigger than he is, teaches me more about life than life itself has taught me thus far.
I know people who profess to want to hear exactly what other people think about them, good and bad. I have never been one of those people. Although I suspect I’m much more critical of myself than other people are, I still wouldn’t want to hear a single one of those criticisms actually confirmed. Having someone sit down and tell me exactly what they think of me, no holds barred, sounds like torture.
Yet today I discovered an even worse form of torture. I can’t give the details here of why or how this occurred, but I can say that hearing first hand what other children think of your child is quite possibly the cruelest form of emotional agony I can imagine. Blessedly, C wasn’t there for any of it, and like any good mother anywhere, I will gladly suffer this pain and be thankful that he didn’t have to, and hopeful that he never has to.
I sense a shift afoot in my world, and I think I like it. It makes me feel a bit rebellious, a bit wild, and just a little bit assertive. It’s not a huge change, and it’s not as though I’ve gone from one side of the issue to the other. I guess I’ve just landed on one side after all this time sitting on top of the fence trying to balance. I still have one hand on the fence, but I suspect I’ll move away from it as time goes on.
All this time, while loving C just the way he is, I’ve tried to follow his lead and help give him the skills he so desperately wants. He wants friends, and I’ve tried to show him the way. With therapies, facilitated playdates and Mommy intervention at the park, I’ve gently coached him in the finer skills of friend-making as if I had a list of what those skills actually are.
What I’ve realized is that he just is who he is, and he’ll probably always struggle with the social subtleties of friend-making. And to heck with everyone else if they don’t love him like I do. They don’t know what they’re missing. I’m tired of trying so hard to help him fit into their world. Why can’t they come on over to his?
I’ve always been an open book when it comes to C, and I generally share his diagnosis with just about anyone. C himself doesn’t know, although he’s seen the A-word on books I have sitting around the house, heard me say it to people, and probably actually does know it means something for him. Frankly, I’m surprised he hasn’t asked me what autism is, given his curiosity about every other word in the English language. Yet we haven’t started the discussion with him because we don’t feel he’s ready to hear how different he is when all he’s interested in at the moment is being the same as everyone else.
As C and his peers are all becoming more aware of all things, I now find myself closing up in order to protect him. A reporter is coming to see him at school in the morning to talk about a charity project C is working on, and I had to call the reporter back after our initial conversation to tell him to please not use the A-word in his article. Despite C’s autism being the subject of several newspaper articles a couple of years ago and C’s loving that his picture was on the front page, now his classmates can actually read and I’m quite sure they’ll read this article. The last thing I want them to do is have a name for him that is not his own.
It’s been a little over a year since I started What We Need. I have enjoyed every moment of it, and have been amazed at the fabulous people who have shown up here to hear about a piece of our lives. I feel as though C has his own little cheering section all over the world in the thoughts and hearts of my readers.
Lately, however, I’ve been feeling a bit burned out. There’s been so much going on, between my working, at one point, three part time jobs; school challenges with what I reluctantly but truthfully call “bullying” (challenges that are being addressed, I’m happy to report); and our eternal search for the right school setting as C grows and new challenges present themselves. Even though I have long felt blogging is therapeutic for me, there are things I just haven’t wanted to say here lately. So instead of censoring myself, I’ve kind of hunkered down until the dust settles.
Yet here I am, drawn back to this place I’ve come to count on with near desperation. This is my outlet, and I need it. Now that I’m only working one part time job and am feeling somewhat less pulled in 4 zillion directions as certain issues get resolved, I’m hoping to hang around here some more. I only hope my temporary burnout was really just that, and that I do in fact have something left to say.
If anyone wanted to figure out what’s going on in my life, all they need to do is look at the books piled up on my bedside table. There’s always a stack; I work my way through those, and when desperate for something else, there’s always the numerous half-finished ones actually inside the bedside table.
One pile is the non-fiction, C related reading. I read those when I’m so frustrated because what I’m doing isn’t working, but calm enough that I can absorb the information. Today I just picked up Kids in the Syndrome Mix, a most useful read that discusses the comorbidity (a terrible word, really) of multiple diagnoses like Asperger’s and OCD. I have a feeling that’s going to be particularly relevant. There’s also a bunch of books on RDI which, every time C has a difficult interaction with another child, I am reminded I must read.
There’s another non-fiction pile that’s just for me, and naturally that one is the last to be depleted, given that it always seems to be the lowest priority. Simply Pray has been sitting, neglected halfway through, for months. Why Am I Always so Tired? waits patiently to be read again to see if I can find a better answer this time around.
Lately, though, it’s all about fiction. Spy mysteries, the entire Harry Potter series (I swore I’d never read or enjoy them and now I’m the biggest fan), and the Twilight trilogy that’s actually made up of four books. I can live vicariously through someone else, fulfilling ridiculous fantasies I’ve always had, like being brave enough to be a CIA agent or captivating enough to pull off a name like “Bella.” I’m plowing through the books at bedtime until my eyes close with sleep, clearly needing an escape from life in general. It keeps me sane, and while it doesn’t keep me fully “present,” it at least helps me get through some tough days, which is sometimes the best I can do.
I remember being young and thinking I could do anything I wanted to do. I didn’t exactly have high aspirations such as becoming President, but I thought I could accomplish whatever my heart desired. Many years later, I know there’s no way I’m ever going to be a Grammy winning singer, a world class golfer (although Husband, bless him, still thinks I could make my way onto the senior ladies tour if I’d just play a little more, you know, in my spare time…), a Carnegie Hall performing pianist, or a famous actor. It just isn’t going to happen.
So it warms my heart to see the eternal optimism C has. While he definitely realizes he isn’t the greatest basketball player on the playground, it’s tempered with an outlook of excitement and thrill about what he can do. Right now, it’s working on his penny drive. He is so excited to think how much money we might be able to raise that he can hardly contain himself.
As I walked down the hall with him this morning at school, listening to him babbling on about which class has the most pennies so far, I had a moment of hope that perhaps some of the dreams I still hold dear can come true. Maybe, just maybe, this slightly weary, somewhat jaded, a little bit cynical person can still shine. I know C thinks I do already.
Okay, I admit it. I’m terrible at Wordless because I always feel the need to explain something. This time, it’s the shirt. Husband is a Stones groupie. He guffaws when I say that, but it’s true. He’s got every single album, poster (thankfully, they’re all hanging in the garage – we have the coolest garage anywhere), book, t-shirt, you name it. He’s seen them in concert about a zillion times. And he can tell you what seat he was in, what Mick was wearing, and what songs they sang, in what specific order (sound familiar???). So for Christmas, as a nod to Daddy, some friends got C this shirt. Even I, so not a Stones fan, love this shirt. It gives me much “satisfaction.”
“Here, Mommy, feel my tummy. Does it hurt?”
“I’m not good at geo-gog-raphy.”
“Mommy, why did the Steelers used to be Uncle T’s favorite team? Is it because he likes stealing?”
At the movie theater, “Is this the place where Abraham Lincoln was shot???”
PA: “C, when I was a kid, I only got a nickel from the tooth fairy.”
C: “What was a nickel worth back then?”