Friday, April 1, 2011

What I've learned in the last 8 years...

For those of you that don't know, today marks the begining of Autism awareness month. It's nice that once a year the media throws a spotlight on autism, really, it is. I don't resent attention being paid, even it's only for a brief period. (OK, I do resent when the attention is paid to sensationalistic, panic inducing, non-scientific crap like the vaccine/autism garbage, but still...) I think that raising awareness of the challenges that autistic individuals and their families face is a good thing. Increased funding for early intervention programs and special education would be better, but hey, I'll take what I can get.

So, for the next 30 days there'll be a steep learning curve, people will be flooded with information, and sometime around April 30th everyone will move on with their lives until next year, or until Jenny McCarthy publishes another hard bound pile of excrement and starts making the talk show rounds again.

For me though, the learning curve never stops. I've spent the better part of the last decade coping, learning, dealing, and adjusting to living with autism on a daily basis. It's been almost 8 years since I first heard the word autistic applied to my son Wyatt. In the time that's passed since then I've learned a few things - about autism, about parenting, and about life in general.

I've learned:
My child is not defined by his diagnosis - My son is an amazing kid : he's funny, affectionate, smart, sensitive, and very quirky. Most people who meet him for the first time don't realize he's autistic, they just think he's a little "odd". He's not cold or emotionless or withdrawn, he doesn't rock or headbang or self injure. He's not Rainman. He's not "An Autistic". He's just a 10 year old boy who who happens to have a brain that works differently that most peoples.

Don't believe everything you read - The amount of pure dee grade A crapola information that's out there about autism is STAGGERING. Really, there is so much bad science and flat out lies about how to best help your child that it's astonishing. If I had believed everything I ever read about autism I would have done one of the following: 1)stripped every non-natural item out of my home/pantry/closets/toyboxes, moved into a hole in the ground, breastfed him until he was 15, and only let him play with rocks and small clumps of unfertilized grass. 2) Realized that my life was now only going to be devoted to caring for a child incapable of loving me back or ever being the slightest bit independant, and started drinking heavily while posting incessently on mommy message boards about how the vaccine companies did this to my kid. 3) Taken a full on Greg Lougenis worthy dive into Mommy Martyrdom, given up everything in my life that wasn't centered around my kid (all while looking fabulous in a perfectly co-ordinated J Crew ensemble), and waited patiently for the 2 hour long Lifetime Movie "A Mothers Martyrdom" starring Valerie Bertanelli to be made about me.
Obviously I didn't do any of that. Instead, I focused my attention on learning everything I could from reputable sources (peer reviewed, well researched, evidence based sources), put the things I'd learned into practice with Wyatt on a daily basis, and we got on with our lives.

Keep your sense of humor, you're going to need it! - Being able to see the humor in Wyatts quirks is what's kept me from falling apart. Some day it's the ONLY thing that's kept me from falling apart. Parenting a kid who doesn't fit into the mold of whats considered normal is never easy, especially when your kid looks fine. I've written more than a few blogs about the dirty looks I've gotten from people when his behavior hasn't matched up with what his appearance leads people to expect of him. The best way I've found to deal with this is to laugh - at myself, at him, at the absurdity of the situation. If I can laugh at something, I can deal with it, and Wyatts learing the same thing. And dammit, he's a funny kid! Really - how many other kids do you know that read peoples name badges and call them by their name? Or eat Catsup like its soup? Or decide they're in love with a belly dancing troupe and invite them all over to his grandparents house? See? He's funny!

Flexibilty is essential - I learned a long time ago that I was going to have to be able to adapt to Wyatts needs, because he couldn't adapt to mine. It was much easier for me to take the extra 30 seconds to let him jump up and down in front of the automatic door, than to deal with the 45 minute long meltdown that would happen if I tried to rush him through it. That doesn't mean that he ALWYS gets his way, I'm not raising Charlie Sheen here. But when I can be flexible with him, I choose to do it, because I know that in the long run, it's just easier on both of us.

Pick your battles - My kid lives on crap food. I know this, and I accept it. My kid has to be the one to open the door at the store, he doesn't want anyone to hold it for him. I'm fine with that. My kid has to ride the elevators at the mall in the same sequence, we have to take the long way home from school every other day so he can see his favorite car wash, we have to get a reciept when we pay credit at the gas pump, and his Sprite can never have ice in it. I can deal with that. I have bigger fish to fry with him than making him give up routines that are safe and reassuring to him. Fish like keeping him working on grade level, teaching him that he can't kiss girls at school like Shrek kisses Fiona, helping him realize that you need to wait until you're actually IN the bathroom before you pull your pants down. You know, little stuff like that. So I pick and choose what battles I'm going to fight, and I try not to lose sleep over the rest of it.

Never take anything for grantedI think the most important thing I've learned over the last 8 years is that your life can change in a heartbeat. Everything that you believe is true and solid can be turned on its' ear, and you'll never see it coming, so the best thing that you can do is appreciate what you have, right here and right now.

OK, that's enough of me lecturing.

9 comments:

  1. Great blog Peg. I would love to hook you up with my friend Allyson, who has just started her autism journey. I did wear blue today.

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  2. I like it. Sometimes I think parents of different kids get very caught up in the diagnosis and not the fact that we're all dealing with a kid with differences, whether it be ADHD, bipolar, schizophrenia , Aspergers and Autism. We are all parents after all.

    Having a kid who knows they aren't like the other kids and is hurting over it is the worst pain I have ever felt as a parent. Much like you, I never let their issues be a crutch, picked my battles and tried to prioritize the behaviors I needed under control well.

    Peggie, Wyatt will have to deal with those other types of people as long as he does things people perceive as 'odd'. Just remember there are just as many people who think he's absolutely awesome because of those things too! Besides, we're all a little quirky in my world LOL

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  3. Treesy: I'd be happy to connect with your friend, if she's on FB have her send me a request, otherwise you can give her my e-mail.

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  4. Laureth, i know you get this, thanks honey!

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  5. YAY For Autism Awareness Month. Nicely written Peg! Maybe someone will learn from this post what life Could be like......and we have "easy" children when it comes to autistic spectrum kids. I don't think having an autistic child is ever easy but once you get into a routine is makes things a little easier. I can relate to every sentence of this blog! Thank you for posting!~Karen

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  6. Peg, she's trying to put together a walk/concert/ benefit for autism. Eutaw is going to play at it. I'll talk to her then and tell her to send you a request. If I send her a link to this blog can she read it without signing up?

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  7. That was awesome Peg! xoxox

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