Graduating Peter

I've mentioned the documentary Autism is a World on this blog before. Gerardine Wurzburg, the director of that film, has a new documentary out called Wretches and Jabberers (HT: Daddy). I haven't had a chance to see it yet, but I did watch his earlier Acadamy Award winning film Educating Peter recently. I found the sequel, Graduating Peter, especially helpful. The two documentaries follow a boy (who becomes a young man) with Down Syndrome who is fully included in the typical classroom.

Other than his fairly extreme behavior and physical disabilities, Peter resembles William in a lot of ways: mildly mentally retarded, severe language disorder, socially and emotionally engaged. The film clarified a number of thoughts in my head about inclusion and William's future. Of course, William is only five. So if any parents of special needs kids are reading this, feel free to comment with helpful or corrective info.

-Inclusion is a mixed bag. Don't get me wrong, I think it's great for special needs kids to be around typical kids and vice versa, but I'm not sure the classroom is the best setting for that. Especially as Peter gets older, the amount of time in the classroom for socialization is pretty slim. And the majority of the time is spent doing things that are specifically the most segregating for him- academics. Even a mentally retarded kid can tell that they are not doing what everyone else is doing.

And I can say from my own experience working with included kids, that they often learn to tune out the teacher and "do their own thing," which tends to backfire on them as they move into employment situations in the real world.

-Inclusion doesn't automatically mean friendship with typical peers. In Graduating Peter, the teachers make the observation at one point that Peter is physically surrounded by people but is socially alone. The special ed teacher then creates a social inclusion group for Peter and other special needs teens with typical peers from their school class. Peter also becomes the manager of the soccer team. All the sudden, these teens who grew up beside Peter start actually hanging out with him, and it makes a huge difference.

Kids don't naturally learn to initiate with special needs kids. They have to be taught, and it often helps them if they come to a situation with that purpose clearly in their mind.

Of course, it also helps that the teens in the movie are seniors by that point. Which is another reason the classroom is not always the best place for inclusive friendships- special needs kids are often more academically similar to younger children (Peter is held back a couple years in school). But typical kids seem to relate better when they are older (teens), or at least when they are a little older than the special needs kids.

-Relationships do matter. Both documentaries do a great job of showing the spiral effect of how good relationships produce positive emotions which encourages good behavior, which in turn improves relationships even more and the equivalent negative effect of isolation breeding depression which fosters inappropriate behavior which in turn increases isolation all the more.

Special needs kids still have emotions, and they still desire friendships. If William is not in an inclusive setting for school (and even if he is), we are going to have to be intentional about helping him develop long term supportive relationships outside the family whether through extra-curriculars, hobbies, church, the local neighborhood, or organized relationship programs.

-Peter's greatest disability is his behavior. Whether it's because of the disability or because of the lack of discipline at home and/or in the classroom is hard to say. But it's clear that Peter's greatest limitation socially and occupationally are his behaviors- not following directions, taking things from people to get attention, not staying on task, etc.

As a mom, this was a fresh, clear reminder that parenting is the biggest thing I can do for William- training him to relate to people lovingly and respectfully, to do chores thoroughly, to obey quickly and cheerfully. These are things we can start working on today that will have a huge impact on his future.

-It's helpful to keep the purpose of education in view. When I was calling around to schools looking for a place for William, one lady asked me what my long term future goals were for him. I said something like, "I wish I knew." And I thought, 'Honestly, what parent has long term future goals for their five year old?' But it really is a helpful question. The other kids are in the classroom to learn skills for them to live and work independently. That probably isn't realistic for us, even just for safety's sake.

However, I think we can learn to live independently in a safe environment. What makes Peter feel like a burden to his family at times is not the fact that he's still living at home as an adult. It's the fact that he can't tie his shoes by himself, that his mom has to get him up in the morning even when he sets his alarm, that he has to be reminded to stop and look both ways before crossing the street.

If William can get up, get his own shower, get dressed, eat breakfast, and pack his lunch, I don't think it's that big of a deal if he needs a ride to work. This is helpful to remember when making educational goals.

For example, we don't need to know algebra, but telling time is crucial. We don't actually need to read a recipe (like Peter practices in his daily living skills class). Eric didn't cook as a bachelor, so why should we expect William to? But he does need to be able to be responsible for himself, to be self-disciplined, to write his name and read street signs, etc. Language skills are especially valuable.

So maybe being in an inclusive class with younger kids may be helpful at some point. And home school is feeling more and more appropriate. Educational success is not walking across a stage to get a diploma; it's living to one's potential in the real world.

-Which brings me to vocational goals. You see with Peter that it's not his poor academics that makes it hard for him to find a job. Character, cheerfulness, and responsibility go a long way.

That being said, not all minimum wage jobs are equal. After trying out a number of jobs, Peter is successful as a helper in a hotel kitchen.

This job seems ideal to me because:
1) It's in a limited space where the supervisor is always in view.
2) It's with a limited number of people (3-4) who get to know Peter well.
3) It involves many short tasks with little sitting, which fits Peter's attention level.

I know such an ideal job might not be available for William, but those are helpful categories to remember: a safe environment, at least one person who's looking out for him, work that matches his abilities.

Like I said at the beginning, these are all just initial thoughts. We haven't even done kindergarten yet. But it's helpful for me to formulate my thoughts. And I'm so grateful for today's technology that makes information like those documentaries available at my fingertips. I'm excited to see what I learn from watching Wretches and Jabberers.