The realities of inclusion and kids with special needs

Here's a happy sight: this girl in a wheelchair in the Girl Scouts fall 2012 catalog. 

The catalog also features this girl with Down syndrome.

I get all giddy when I see kids or teens with special needs featured in magazines and catalogs (as happened recently with baby Valentina, who ended up on the cover of People magazine). I'm also filled with greed: I want more, more, more. But inclusion in a catalog is one thing; inclusion in real life is another.  

Shortly after a reader shared the above (thanks, Faye) I read that an Illinois family is suing the Girl Scouts for excluding their daughter due to disability. Megan Runnion, 12, who is deaf, had a sign-language interpreter at meetings and troop outings. Earlier in the year, her Chicago-area troop was disbanded—allegedly since Girl Scout officials were limiting the group's activities because of the cost of the interpreter. Her mother, Edie Runnion, says she was later told the Girl Scouts would pay a maximum of $50 a month to support services for girls with special needs, and that Megan's family would have to pick up additional expenses.

The Girl Scouts are said to have a good track record of inclusion, so perhaps this is an anomaly. But if you're the parent of a child with special needs, you may well know the challenges of including your child in mainstream activities. I've been wrestling with that since Max spent two weeks in an inclusionary program at a camp in our area. Inclusion is awesome in concept—but in reality, it can be so tricky.

Max had a shadow, a counselor dedicated to helping him out. A couple of days after camp started, I emailed to ask how things were going; it's not something Max could tell me himself. I was told Max had made two "friends" who regularly said hello to him—and he'd "respond positively back." And that Max was having a blast.

Well, OK. I figured Max would have a good time at camp, given that there was a pool and ice-cream, but I'd wanted him to have an inclusionary good time. I wanted to know if kids were otherwise interacting and playing with him.

In subsequent days, I was told that one girl thought Max was "cool" but was having trouble understanding him. The camp hadn't wanted iPads there (to avoid breakage), but I sent it in so Max could use his speech app. I said I was open to other ideas they had about inclusion. I pointed out that Max had good comprehension, and could answer "yes" or "no" questions. I'd already filled out a list of his interests before camp started, along with certain favorite phrases of his.  

At the end of Max's time at camp, I had a brief talk with the program director and Max's shadow. Although Max made some real breakthroughs, including going into a crowded auditorium for singing, and it seemed kids genuinely liked Max (as people tend to do), in the end I just wasn't sure how much he'd interacted with other kids—or how inclusive his time there was, other than the fact that he was physically among so-called typical kids.

I think the camp needs more organized ways of communicating with parents. I will also say that I am SURE my hopes were too high. Max joined the camp mid-summer, and stepping into an already-formed group isn't easy. I am glad he tried it, and grateful that there even is a camp with a program like this in our area (the only one of its kind). Most other camps in our area wouldn't even take Max. But I was disappointed, and left wondering about techniques that help facilitate inclusion.

This same thing cropped up with Boy Scouts earlier this year. The troop leader was open to including Max, except as it turned out Max wasn't open to including them so things didn't work out. At one point, we had the troop over to our home to bake cookies. I had to take Sabrina to a Girl Scouts meeting that night, so Dave held down the fort. Afterward, Dave told me the boys weren't interacting that much with Max. Again, a situation in which they didn't know him well, but I wondered what we could have done to make things go more smoothly.

I so want inclusionary activities for Max, who has spent much of his life around kids who have special needs. Right now, this isn't on Max's radar, but I think it would do him good. Hanging with so-called "typical" kids would give him new perspectives, teach him new things, boost his confidence and open up his world. Inclusion works both ways—Max could expand other kids' perspectives, too, and help them better understand kids with special needs. Also: It would be lovely if he had someone else besides our family to share his fart jokes with.

I'm going to speak with an expert about inclusionary tactics, and I'll share what I learn. Meanwhile, if you've had success with inclusionary activities, please pass along any tactics that have helped.