I’m an autism dad and I’ve known that I’ve been in this unfortunate fraternity for about eight years now. In my circles and extended circles, I’m pretty much known as an autism dad and I can’t even begin to count the number of times somebody has contacted me and asked for advice. One of the first things I always say is don’t live in denial. Telling yourself that your kid doesn’t have autism might make you feel better, but delaying intervention will only hurt your child in the long term. Early intervention, don’t live in denial — that’s my standard advice.
In a reverse kind of way, eight years into this I think I’m living in denial. I still think it’s going to get better for my son Jack. I keep telling myself that. I look at him and think that someday I’m going to have a conversation with him and stop buying diapers for him. But when I step back from my situation and try to look at things objectively, I think I’m trying to convince myself of something that isn’t true.
Jack, in case you’ve never been here, is my 9 1/2-year-old son. He’s severely autistic and he’s the reason for this site and my foundation. My wife Tiffany and I go to the ends of the earth for him. She’s up late at night researching everything that affects him and frequently (with success) fine-tunes his daily nutrition and supplement regimen. She’s a master at the therapies he needs and does an amazing job working with him. In addition to staying up late, she’s up all night with him because even though he’s 9 1/2, he’s still not sleeping through the night.
We’re both pretty good at predicting his actions based on very subtle indicators and we prevent incidents before they happen. We’ve basically sacrificed everything we have in our fight for him and that will never change. We’re rooted in California but just relocated — sight unseen — to Pennsylvania because we’re confident the services and opportunities here will be better for him.
We’re all-in for him, and one of these days, he’s going to have a breakthrough. We’re working so hard and sacrificing so much and so wrapped up in all of this — there’s no other possible outcome! Well, that’s what I keep telling myself, even if it’s wrong.
He’ll be 10 next month and he’s still in diapers. Still not talking. He threw a fit last night because he wanted to videotape himself opening and closing a car door over and over and over again and we put a stop to that so we could eat dinner. He hits and kicks and head-butts when he gets frustrated. We have to put him in a padded helmet to keep him from injuring himself (he knows the drill and doesn’t resist). He hasn’t had a day in his life that he hasn’t cried.
I keep thinking it’s going to get better, but I’m starting to think that maybe it really isn’t. He’s almost 10, you’d think he’d want to talk by now. He sees us doing it and has the ability to mumble and understands some of what we say, but he just doesn’t care. He knows how to go to the bathroom and he’s really hating diapers, but put him in underwear and he’ll wet himself without even flinching. If nothing is clicking now, when is it going to? And why would it if it hasn’t happened yet?
But I keep telling myself it’s going to get better, really for no other reason than he’s my kid and that’s what I want to believe. I insist that it’s going to get better. MY son isn’t going to be the non-verbal adult incapable of moderately functioning in society. I keep trying to escape this nightmare by chasing a dream. I don’t know if that puts me in denial. I suppose I’ll find out down the road. With each day that passes, my optimism for better days wanes a little bit. I keep moving forward, though, and doing everything I can for my son. I’m a dad. That’s what I’m supposed to do.
Unrelated quick plugs: Check out the Operation Jack Marathon or just register! Great race, great price, great cause! Also, I blame this on Operation Jack supporter Jake Rome, but … I guess I’m for sale.[subscribe2]