Discluded

penguin-exclusion

The topic of inclusion for people with special needs has been on my mind lately. In particular, I’m focused on my seventeen-year-old son who recently auditioned and was selected to be in a two-year conservatory program for students with cognitive and/or developmental disabilities. It was a group audition with a one minute solo opportunity of the actor’s choice. Our son told a brief story about his beach vacation, complete with his amazingly good animal imitations. I wasn’t there, but I can only imagine that he brought down the house.

To be included, or not to be included? That is the question.

It is especially pertinent to the parent of a child with special needs. My son has a genetic disease, Familial Dysautonomia. He walks and talks, but his balance and gait are not great. He has a feeding tube, through which he can feed himself and he also eats by mouth. He has no behavior problems and is sweet with an innocent personality. We encourage him to be as independent as possible.

I recall a holiday dinner with friends a few years ago when my then eight-year-old daughter and her friend came to complain to the adults that the big kids weren’t playing with them.

“They’re discluding us,” they announced to our amusement. We did what adults do – told the big kids to be nice and tried to persuade the little ones to give them some space.

But really, must everyone be together all the time? Sometimes I like to hang out with people like me, sometimes I don’t.

When my disabled son was younger, I was very focused on inclusion and mainstreaming. I was so hopeful that he would fit in, make friends, and lead a typical life. Why shouldn’t my child be included? I was his advocate and tried so hard to focus on the parts of him that were like everyone else, rather than the things that made him different. He goes to a large public high school where he is mainstreamed and manages amazingly well with a lot of loving support.

As he’s gotten older, however, my acceptance of his differences has evolved. I can embrace the wacky, fun, quirky things about him. When he aged out of day camp and their wonderful inclusion program, the next option within the camp was with a self-contained group of disabled kids. At first I bristled at the idea of him being with a group of disabled kids – what about typical peers and role models? But, I had no other options, the camp had been great for my son since he was three-years-old, and it was better than him spending the summer playing video games in my basement.  We decided to give it a try.

I learned that my son didn’t mind being in the group at all – in fact he liked it. Even if I perceived that he was higher functioning than many of the other kids, he enjoyed making his friends laugh, helping out and hanging out with the counselors. It was the beginning of my being able to watch him move into and out of inclusion with fluidity and grace.

The campers went on a field trip to an improv place. The counselors told me my son loved it, which gave me the idea to pursue a theater class. While the theater program offers both inclusion and self-contained classes, we opted for the self-contained ones since he had no previous “training.” He took two classes last year. We went to the end of the semester observation. My husband felt that our son seemed so different than the other kids. I, on the other hand, saw him as belonging in the group and was so happy to see him shine. Apparently, inclusion is in the eye of the beholder.

I am thrilled that my son has this opportunity to learn some new skills, have fun, make friends, and be part of another nurturing community. As Shakespeare said, “All the world’s a stage, And all the men and women merely players.” These kids hit their marks, sing mostly on cue, and exit stage right and stage left, albeit slowly. They may have different abilities, but their performances are no less sweet.

 

Advertisements

4 thoughts on “Discluded

  1. WOW! Just WOW! I love this article so much. I get it! I have a sibling with ID and you so eloquently captured my feelings as I have watched her grow up.

  2. I always love reading your posts and find beautiful elements in each and every one. Thank you for the reminder about accepting differences in our own children – it’s not always so easy to do when we live in a world where our children might be outside the norm.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s