Wednesday, January 4, 2012

On being "one of us"

I noted a topic on an AS discussion board  tonight entitled "What's the best/worst thing about being an Asperger's parent?" All I could think, in my own overly analytical way, was "Am I supposed to give a sentence or novella for each part?" So, since I'm incapable of short answers...

The bad & ugly side

I'm not going to lie- Autism can suck. I watch my child struggle so hard that he's near tears (or in them) just by trying to complete a simple task- like learning to tie his shoes, which he still has not learned. Damned fine motor skills.

Seeing other kids make fun of my kid when he's really trying to play with them... and seeing those kids' moms allow or even encourage it. The worst part of that? Morgan sometimes won't even notice the teasing, name calling, or that crap. What he notices is that the kids don't want to play with him.

You notice why the kids don't want to play with your kid. My son is literally the nicest person I know. He drives me up the wall, but I'm his mom. However, Morgan talks constantly about his trains. I mean, constantly. Kids his age usually have more than one thing to talk about extensively.  He's recently latched onto Transformers and Angry Birds, so there's hope that one day Thomas the flippin' Tank Engine's boiler will burst for good in our house, never to reappear.

As a parent, anytime that autism is mentioned in conjunction with your child, one of your initial thoughts is "I can't die." It's horrible. You can't die, you have to live one day longer than your child because who is going to look after your child the same way you do? What if, God forbid, you die while your child is young? To a neurotypical child, it would be horribly traumatic, but how would an autistic child adapt?

I can't get sick or Morgan gets upset. True story, and a very hard thing to deal with sometimes. Morgan spent the first two and a half to three years of his life with me in fairly good health. The last four have been awful. I have some autoimmune disorders that cause me a lot of pain when they're not in remission. When Morgan knows I'm in pain, he cries at school. He worries about me. He misses me. It makes me feel like the worst mother on the planet.

When your child is stimming, you can be driven to the point of absolute insanity.

Not every Autistic is like the guy from Mozart and a the flippin' Whale, okay? Just like not every Autistic is like Rainman, got it? Not every frickin' person on the spectrum is a savant! So quit telling me that ALL Autistics are highly intelligent or that ALL of them are savants! Quit generalizing about crap you don't know about!

IEP meetings....

Insurances companies- like mine, who don't cover any therapies unless they can be proven restorative in nature before the onset of therapy. I wish I was making this stuff up.

Don't assume because autism is mentioned that my child is a moron, either.

Best things

My son can manage to entertain himself for hours on end, no kidding. I rarely hear "I'm bored" come out of his mouth and he actually seem to mean it. He's always been that way. Even as a baby, Morgan amused himself by figuring out complicated locks, puzzles, pestering the cat, or locking Mommy out of the house- that wasn't fun. Seriously, my less than a year old brilliant child dead bolted the door behind me without warning during a freezing downpour. I was in my jammies. Not cool man.

Being the parent of an Autistic make you appreciate the details in life that you wouldn't notice otherwise. Be it a speck of mud on a window, a faint whistle in the wind, or a cloud that looks like Bertie the Bus from Thomas the Tank Engine, at least 1,000 times a week there are moments when Morgan points things out to me that I would have never taken the time to stop and notice. He finds patterns in everything and that's incredibly, well, cool, for lack of a better term. That he can find patterns in random forms and find it beautiful is striking to me because as an artist, I crave composition, too.

Having an Autistic for a child makes your other child instantly compassionate towards people with different abilities. The other night, we were in a crowded bookstore and without being told, Bay grabbed his brother's hand to guide him along in order for Morgan to step out of the way for a lady in a wheelchair (he spaces out sometimes- kind of like sensory overload). Most four year old kids would stare at the woman or point, or wonder aloud how she got in that chair. Not Bay. No, my younger son somehow always gravitates towards the children that are in leg braces, have developmental delays, autism, etc., whenever we're out at the doctor's office, playground or elsewhere. I don't tell him to, but he does. I'd like to think that he's just instinctively knowing who needs a friend, like his brother (who he worships without apology).

Having an Autistic child makes you grateful as hell for that diagnosis because you know how much worse it can be.  A kid cannot die from Autism. He'll grow up to be an adult with Autism. He'll struggle, sure... but with the right therapies, interventions, supports and educations, he can be "fine" - whatever that is. This is not to say that I'll ever get into a normal sleep pattern and quit worrying about my child. I don't think I'll ever stop worrying about Morgan until he has a career, relationship and kids. And even then...

The best thing about being an Autism parent? You get to define your own sense of normal- and feel great about it. I used to feel like crap because my child wasn't/isn't "normal." What the hell is that anyways? MY normal is a kid that might just lick someone else. MY normal is a soulful boy that memorizes whole episodes of Thomas the Train, The Nutcracker Suite, Adele, The Temptations, BB King, and Kenny Chesney. MY normal is a boy that has fears about everything but what would seem rational to me to fear (like heights- hello?). MY normal is now IEPs, The OASIS guide, Temple Grandin memoirs, prowling online at midnight scoping out new information, and dissecting for the billionth time the proposed changes of the ASD definition in the new DSM. Normal is worrying so much that my stomach feels weird if it's not in knots.

Also, another best part are the surprises when your beautiful, amazing, wonderfully introverted flamboyant child does something that he (or she) isn't "able" to do.

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