Monday, May 19, 2008

On the Edge

If you are stressed out, it's your own damn fault.

That's the message running around these days. Modern lifestyle is too hectic- if you'd just slow down and simplify, you wouldn't be stressed. If you'd just take a minute for yourself, you wouldn't be stressed. If you'd just take a nap, you wouldn't be so stressed. If you'd just accept life as it is, you wouldn't be stressed. What's your problem? Why are you so stupid? Get out of the rat race and you wouldn't be stressed!

Yes, and when these things drop from mouths and screens around me, I start wondering about how that would sound if I turned it around on someone else. Replaced a few choice words. But offending others isn't going to help my stress level. It isn't going to get me any more sleep. It's not going to do a thingy-dingy for my blood pressure, or my PVCs, or my asthma. Nor will it help Joey or Andy.

Yes, modern life asks me to do things differently than they did once. Not too long ago, a child with communication issues like my Joey would have been probably labeled mentally retarded, and ended up in a group home (at best), working menial jobs (at best), and probably not spoken about. Children not much more severe than my Joey would have been locked up in institutions and forgotten. Or perhaps a kid with Joey's communication issues could have been found a place on the farm, if he managed any form of communication enough to understand directions. If not- well, those farm kids probably ended up locked up, too- in institutions, in homes- like Boo Radley. Having enough receptive language to understand "muck out the stables," he might have gotten by and survived, scorned as the local idiot or weirdo. We have people walking around our town suffering this fate right this minute. Today. Is this the life I want for Joey?

I see plenty of parents who do little to support their disabled kids. They refuse special education services. They send them to school, and trust the school to provide all the necessary therapies. They assume the state will take care of their child, help their child reach their potential. That's not even what schools do for non-disabled kids! I look at these kids, and glimpse echoes of what might Joey be like if I did the same. If I just went about my "normal" life, instead of what I do. I haven't seen any current outcome that is positive. None.

So I drive him to speech therapy. I drive him to occupational therapies. I work four jobs, so I can pay for them, and for the little ABA he gets. I take him with me all over town. I take him to the store. I take him to the farm. I take him to Williamsburg. I take him to the zoo. I take him to the beach.

It was almost two years ago when we last took Joey to the Aquarium in Baltimore. We went again yesterday. What a difference a couple of years can make. You might remember the disaster we had last time. Basically, meltdowns at every scale level throughout the day, but mostly in the 8-10 range. Dark, crowded rooms are not Joey's thing.

This time, he had a blast. He loved the fish. He's very into fish right now. It can sometimes be hard to tell what Joey is really interested in, so I'm tickled to discover something he really likes, and isn't just saying he likes because other kids say they like it. He's very into the beach and sealife. Maybe he'll be a marine biologist! He looked into the tanks, and saw the fish, and pointed at them, and wanted Andy to see them, too. He laughed. He looked for Nemo and for Dory. We saw Dory-fish (blue tang). We saw sharks. We saw anemones.

Then we went to the dolphin show. It was far better than the show we saw before- and we sat in the splash zone. We got soaked. Andy freaked. Joey was ecstatic. He proudly proclaimed himself wet to anyone who would listen. He laughed and squealed with glee at the tricks, and wanted to get in the water and swim with the dolphins. He's been pretending to be a dolphin all afternoon today. How's that for success?

Yes, he's growing up. That makes a difference. But he's also doing a lot of hard work, because he wants to know about the world, he wants to communicate with us, he wants to be in on the action of life. Did he blend in, look like other kids, act like other kids? No. No need for specifics. He's Joey, and he was Joey at the aquarium. But he was happy.

That's worth a lot of stress on my part. Modern life is still life, and I still think it is important for him to enjoy it.


JoeyAndyDad said...

You forgot the best part, JoeyMom! The best part, folks, is that she and Grandma just walked them in the front door- no preparation, no 'hey guys, we're going to the aquarium', just boom. Deal.

And they were magnificent.

Niksmom said...

Oh this strikes a chord tonight! The picture of your boys hugging? Made me cry. xoxo

kristi said...

This is why I do what I do too!! It is not easy, but my child is so worth it.

Glad the aquarium went well!

abfh said...

I hope this post isn't meant as a response to me. When I wrote about parental expectations and cultural changes, I was not suggesting that parents should just sit back and do nothing and expect the school district to take care of whatever their kids need.

As I mentioned in a post in February, for three generations my family has been spending large amounts of money (and time) to send our kids to private schools, as well as a variety of extracurricular activities. And we're not rich, either. My car is literally a clunker; it has over 160,000 miles on it, and every now and again there's a loud CLUNK from somewhere toward the back of the car.

There is a major difference in perspective, but I'm not sure I can explain it in terms that are easily understandable to people who had more typical cultural experiences. To some extent it's similar to racial integration, in that I grew up in an environment where, for the most part, no significant distinctions were made between autistic people and any other kind of people. I always took it for granted that my "kind" could be very successful, given suitable opportunities.

In my family, the process of carefully choosing schools and activities for the kids is meant to match their particular abilities with environments where they can excel. We do this with our non-autistic kids too. The goal is to give them a good start in life, as with any child; we never thought about it in terms of saving the autistic kids from menial jobs or institutions.

I'd add that there is nothing wrong with having a job that society deems menial, if the person enjoys the job and takes pride in his or her work. I recently read a blog post by an autistic janitor who writes about how much he enjoys his work.