Friday, April 15, 2011

Really, I mean it, this time the blog is going to post!

OK so you're all familiar with my pathetic attempt to post a blog from work earlier today. I tried, really I did, but our IE5 browser and our 3 gerbil powered server prevented me from filling the last 2 hours of my work day with a lively blog posting. But I'm home now, so that's no longer an issue.

So, as I attempted to say earlier - Yes, I'm posting another autism related blog. What, did you think you'd get through autism awareness month with just one blog posting from me?! Oh no, no, no my darlings, you've obviously forgotten who you're dealing with.

On Wednesday night my father and I attended a discussion on autistic adults acting as their own advocates. The discussion was sponsored by iCan house, which is a place for autistic kids and adults to go for social interaction groups and activities. It's a wonderful idea, and something I'd love to have Wyatt involved in, but at over $200 a month for their after school program, and over $300 a week for their summer day camps it's just WAY more than I (and most other families) can afford. But, their lectures are free, so I can go and pick up some knowledge, and hopefully apply it to meeting Wyatts needs.

So, Dad (who is always willing to learn something new to help Wy) and I went, listened to some really amazing young adults talk about living with Autism/Aspergers, and about how they learned to stand up for, and advocate for themselves. I got to ask them what was the most difficult thing about Jr high/High School for them and how they dealt with it, and I got a little peek at what Wyatt will be like in his late 20's. One of the men who was there was in his late 20's. he works at a local grocery store, and also at a local community college in the computer lab. Of all of the panelists, he reminded me most of Wy, in terms of his level of social functioning and his verbal skills. One of the things that most impressed me about him was how aware he was of what the difficulties of his Apergers were. He was very much aware of the fact that he had difficulty recognizing subtleties in facial expressions, and that he didn't understand sarcasm. These are both things that Wyatt struggles with as well.

By hearing this man talk about how he learned that these were things he would always have trouble with, it helped me realize that I was going to have to start working with Wy to help him recognize the areas that he struggles with.

One of the things that I think is always going to be a challenge is teaching Wy what he DOESN'T get. That's a really difficult thing to do. How do you teach someone who is color blind that there are colors that they don't see? How do you get someone who is tone deaf to understand that there are notes they don't hear? How do I help my little boy understand that there are rules to a game that he doesn't even know is being played, and that the game he doesn't know is going to be part of every aspect of his life for the next 6 years of school and beyond?

I listened to these young adults talk about how difficult school was for them, and it was as if I was living out the lyrics to "Killing Me Softly". Been there, done that, don't want it for either of my boys. But of course, we don't always get a vote when it comes to the things our kids will have to go through. So I gathered what I could from what these people had to say, and tucked it into my arsenal of weapons I'm going to pass along to the boy when he has need of them.

It doesn't seem like much of an arsenal - the whole "I have trouble understanding subtle facial expressions" arrow seems kind of dull when you shoot it out against the terrifying dragon of pre-adolescent scorn. But I know that Wy is a pretty confident kid. As one of his teachers said at his IEP meeting "Wyatt knows exactly who he is, and he really likes himself". So I have to hope that at least some degree of that follows him into the bog of hormones and insecurity he's about to wade in to next school year.

Of all the challenges I've faced with Wyatt over the last 8 years since he was diagnosed, none has frightened me more than him entering adolescence. It's looming on the horizon now, and I'm still scared, but I think we're both ready to face it. It's good to know that there are people who have come through the other side, and are happy and well adjusted, in spite of (or maybe because of) the difficulties they've come up against.

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.