Tuesday, July 22, 2008

So What's It Like, Anyway?

I can't tell you how many times someone has asked me, "What's William like? How does having Autism affect him?"

I welcome the question. The problem is that it's hard to answer.

Many people will spend an hour or so with William, or even an afternoon, and say that they never would have guessed he has Autism. If he's around other children at the park, when the kids are in Thunderdome mode, running, screaming, smashing things, killing and eating the young and the weak, it's hard to tell he's any different.

The best way to outline how he's different would be to describe the hours before getting to the park and the hours after.

The morning starts with William slamming a door in the basement. Over, and over, and over again. This takes place at 5am, and it's still dark. (Man, I can't wait for this kid to be a lazy teenager and sleep until 1 in the afternoon.) Once he's woken up the entire house, it's time to give him a huge dose of probiotics with his breakfast, which is wheat free, dairy free, egg free, and generally taste free. Which he doesn't like, and typically won't eat, cause it tastes like crap. (Did I mention his food costs twice as much as 'normal' food?)

Breakfast is usually followed by an hour of running around naked, culminating in running out in the street. (By William. I tried once, and the neighbors called the cops.)

Trying to stop this behavior is not impossible, but it takes a great deal of patience and skill. If you try to 'lay down the law' or tell him to STOP IT, he will burst into tears, scream, or violently smash his head into the closest thing. Doesn't matter if it's a pillow, wood, or concrete.

Going to the park, you have to strap William in a car seat for babies, cause otherwise he jumps up and down to the rhythm of the car, and turns on every overhead light. Then he screams when you ask him to stop.

After the park, he has a meltdown in the car again, and cries until you figure out that he's thirsty. The kid is 4, and he can't tell me "I'm thirsty."

After a bath, and meltdown about getting out of the tub, he'll hug you and squeeze you around your neck until you think your eyeballs are going to burst. He puts his hands on your cheeks and kisses you on the lips and smiles. And says nothing.

You can't ask William "what's so funny", or "what's wrong." He doesn't know. And even if he did, he couldn't tell you. He can't string together a sentence to have a conversation. If you ask him if he likes the song on the radio, he says "song on the radio." Some things it seems like he's put together a sentence. "Daddy, want take a bath" This is not conversation - this is William using chunked together phrases to get a desired response. Think of a traffic sign. It doesn't have a lot of words on it, but it gets the point across.

William has never told me how his day was. Or what he liked about riding on Uncle Dave's boat. Or why he likes riding in Grandma's car. Nickie and I can only read his face to see the joy or frustration that is coursing through William's brain. There are thoughts and red hot emotions in there, we can tell, but somehow his brain doesn't let him verbalize it.

It would be impossible in a single post, or in ten posts, to lay out a definitive account of who William "is." That's why I started the blog. I'll keep trying. So will he.

9 comments:

jmommylewis said...

You description of your life with William is beautifully done! I work with kids with ASD and their families and "staff" on a daily basis. No matter how I try to put myself in their shoes I do not live in their home. I will continue to check your blog and offer help in any way that I can. Keep fighting the good fight!
Jamie Lewis

Kelley said...

John, very rarely do I read every word of every post on someone's blog. With yours, I did. I am--all at once--inspired, wrecked, curious, heart-sick, awed, and more. Thank you for sharing William and your experiences with the blogosphere. May I put a link to your blog at my place?

Unknown said...

Found this article on physorg about robots helping with autism...thought you might find it interesting: http://www.physorg.com/news135956588.html
Lance

Anonymous said...

Poignant really! You are real and funny, compassionate and optimistic and I can't think of a better way to love your child. This blog is fantastic and hopefully will catch the attention of those who need to remove their blinders to the real issues of the world, especially ones that are becoming an epidemic in this world. It's time for people to stand up take notice and sprint into action! Denise Smith

Tartley said...

Hey. I just subscribed, thanks for the email heads-up. Like someone else said, I read every word. Keep up the good work, on all fronts.

Anonymous said...

Well done, John. Wonderfully written and very touching. I'll keep reading and spreading the word about Autism.

Anonymous said...

Hi John,
I'm Julie's sister. My son Tommy is 11 and he has autism. When he was 3, he used to wake me up at 5 a.m. literally screaming at me for pancakes. He would stare at toys without playing with them. Appear just fine and then walk up to me for no reason and start screaming. He didn't start putting sentences together until he was 4.
I'm glad that you're exploring biomedical approaches. Removing dairy, gluten, and eggs made a huge difference in his quality of life. I believe he was in pain from the foods he was eating. He's by no means cured, but some things are so much better. It's a long road . . . frustrating, exhausting, lonely . . . but as you said, you'll do anything to make your kid better.

Laura said...

Some religions believe that children pick their own parents. Sounds like William made an excellent choice. Thanks for sharing. I look forward to more. Laura Harris

Unknown said...

Thanks for sending me the link to your blog. I just read the whole thing and was truly engaged the entire time.

Good luck to you, your wife, your family, and William.