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A Look to the Future

  • Posted on November 15, 2013 at 10:00 AM

As someone who is working hard to realize my dreams and as someone who is adapting to my changing dreams, I think about the future and what it takes to be where you want to be when you get there. This skill comes in handy when I go to IEP meetings and the staff brings up the issue of “transition planning,” which refers to my children’s transitions out of the school system and into their adult lives.

Alex’s IEP meeting came first and, surprisingly, we discussed transition planning more in his meeting than in Willy’s. The impression I have from these meetings is that they have an established track for “people like Alex,” which involves building “job skills” and being transitioned into a sheltered work environment. Kandu and Riverside are two local examples that involve creating work for people with special needs that severely interfere with their ability to get “normal,” competitive jobs.

I understand why these tracks exist and, for the most part, don’t have a problem with their existence. This post isn’t about the problems I do have with such facilities either.

According to his teachers, Alex has good “job skills” and he enjoys the work. But there’s something Alex enjoys more and that’s art. I know there are individuals who, with appropriate assistance, can share their art with the world and have that as their vocation, even though they have special needs that severely interfere with their ability to live “normal” lives. Special needs, even severe special needs, don’t mean lack of talent. Unfortunately, his teachers don’t necessarily share my understanding of this kind of opportunity.

Part of it is that “artist” is a rather tough, competitive gig anyway you look at it. I know, because while my art is very different from Alex’s many of the struggles are quite similar. I know Alex would need support to make him successful on such a unique track, and I know that some of this support would be beyond my capabilities. But it is possible. It would also be conducive to Alex’s disposition in ways a sheltered work environment would not be.

It’s hard to know what Alex wants. I don’t know if Alex thinks about his future. Even if he does, there are few ways he can communicate his thoughts so that we can understand. But I know I don’t want his options to be limited to a track to a sheltered work environment. I want him to be able to choose to be who and what he wants to be.

Then, there’s Willy. At his meeting, he announced that he doesn’t want to go to college. But he still wants to design video games. I’m not sure the latter is possible without the former, but then again, if he learns the skills he needs, then he can do what he wants with the right support. Again, I know it’s possible and I know at least some of what he’ll need to make it possible for him. He also wants to have our house to himself—good luck with that one, buddy!

My Little Cheesehead is Growing Up

  • Posted on December 14, 2011 at 8:00 AM

Alex turned twelve over the weekend. For eleven days out of the year, Willy and Alex are “the same age,” which pleases Willy to no end, though Alex doesn’t seem to care one way or the other. To celebrate Alex’s birthday, we had an Alex-centric meal of pizza, followed by brownies, because he prefers brownies to cake.

Alex is very much a Wisconsinite when it comes to the consumption of cheese. Cheese is Alex’s primary source of protein, including cheese sticks (not individually wrapped), grilled cheese sandwiches, and, of course, cheese pizza. He likes to peel the melted cheese off the pizza and squish it into a cheese-laced-with-tomato-sauce blob. Then, he eats the blob. He eats the pizza crust last. Well, he might. But he might not. This time he ate some of it, but concentrated on the cheese on the pizza and the breadsticks. He’s a very loyal cheesehead, just so long as you don’t expect him to care that the Packers are kicking butt.

Of course, when it came to presents, he had to get something VeggieTales, so I got him The Pirates Who Don’t Do Anything. The boys love it, though apparently it’s not as good for stimming as Moe and the Big Exit. I also decided to try something new. I bought him a gyroscope. I figured as much as he likes to look at things from all angles and as much as he likes things that spin, a gyroscope might be a good toy for him. So far it’s been met with a mixed reception. He likes it, but it’s not as interesting as VeggieTales. Go figure! One the up side, I learned the basics of how a gyroscope works, though this one doesn’t seem to be properly balanced.

As wonderful as Alex’s birthday celebration was, I can’t help but take a moment to reflect on Alex getting older. He’s twelve. He’s a pre-teen. In a year, he’ll be a teenager. Somehow his delays seem more significant in that context. While other kids his age are starting to look at gender differences and are exploring their feelings towards potential dates, Alex is still watching a show which is designed to teach little kids Biblical lessons.

I’m guessing that pronounced developmental differences like these are what lead to the perpetual-youth-myth when it comes to kids with severe disabilities. The myth certainly does have its appeal. How do you teach a young man who doesn’t talk, who has little control of his own waste removal, who is still fascinated with little kids’ shows, who, as per his own behavior, seems like a little kid, about his own sexuality? How do you prepare this young man for the decision he’ll face as an adult?

It would be easier to deny his sexuality and impending adulthood. He has the mind of a child, so he is a child. He’ll always be a child. We will always have to make his decisions for him. He’ll never be sexually active. He’ll never decide how he wants to live as an adult. That’s just the way it is.

There’s something appealing about that line of thinking. You see, if it were true, it would make things so much easier. And that’s the crux of it. Being a caregiver—oh the tremendous, horrible burden of caring for someone with special needs!—is easier than conscientiously parenting a child with special needs into the adult they will become, and putting the work and the skill-building into the effort so the child will be the best adult they can become.

It would be easier to deny Alex’s maturing sexuality, but I can’t. If you’re willing to admit and are in position to observe his more intimate functions, like changing diapers and bathing, you’ll realize that his sexual development isn’t going to wait for his emotional and mental development to catch up. It’s already started. To deny that won’t help anyone. Which isn’t to suggest that I have any idea what to do about it, but it does mean we’re going to have to come up with something better than burying our heads in the sand singing la-la-la-I-can’t-hear-you.

It can be difficult when your child becomes a teenager, as Brandon has proven for us. It will be difficult helping Willy to grow into his new role as a teenager. In a way, we don’t have to worry about some of the same things with Willy that we do with Brandon. But we’ll worry about other things. Alex becoming a teenager is going to be something else entirely. I just don’t know what yet. I don’t know how we’re going to handle that or what we’re going to do. For a long time, these problems seemed so very far away. Now, they’re almost here and I don’t know what to do.

But I do know that I won’t fall into the perpetual-youth trap. Easier doesn’t make it better. It certainly doesn’t make it honest. Alex is going to mature. He is going to become an adult. And it’s my job as a parent to figure out how to help him do so as best as we all can. Just like it’s my job to help Brandon and Willy become the best adults they can be.

It’s not about what’s easiest. It’s about Alex. And Alex grows, matures, and changes, even though his development is at its own pace and on its own track. He may not appear much like a typical pre-teen, but he is a pre-teen nonetheless. His body is maturing. He’s growing up. Denial is not the answer.