Tuesday, July 28, 2009

I'm Just Sayin...

Last week was fishing camp. This was a federally subsidized program at a local public park. Registration was only $15 per camper for the week and the idea is to teach kids to fish to give them a productive and fun alternative to illegal drug use. I'm not sure about the premise of that (something tells me several of my pot-smoking friends from my past probably spent a lot of time tripping while fishing...) but I am all for a good deal. And since it was federally subsidized I knew they couldn't turn down my dear children with special needs. That's one child with Down Syndrome, check, One child with Autism and Mental Retardation, check, One child with Reactive Attachment Disorder, check. So I signed them all up - Miriam, Philip and Ruth all got to go to fishing camp. Andrea was also signed up but sine she's stuck in PA with her foster family in a tangled web of interstate compact requirements, she wasn't able to go.

The three of them had a blast. They *loved* fishing. They loved fishing camp and they all said they'd like to return next year. Now my beef is with this whole idea of integration. It's been called various things over the years - started out as mainstreaming and may be called something completely different at this point but I wouldn't know as I checked out of that idea long ago. In fact, I've been kicked out of yahoo groups and left support groups because of the controversy caused by the opinions I'm about to share. So go ahead, flame away in the comments, just keep it clean please.

On about day 4 of 5 days of camp I turned to my three children with special needs and asked them if anyone could tell me the names of people they'd met at camp (and with whom they had now spent about 12 hours of camp time). Out of three people, I got one name. One. And that wasn't a name that was shared with any enthusiasm. Apparently making friends with said child didn't work out too well and I can only imagine the reasons.

Now my understanding of this whole integration or inclusion or mainstreaming or whatever you want to call it is that it is supposed to benefit everyone. The typical children are supposed to glean valuable friendships and insights from their differently-abled classmates, the teachers and instructors are supposed to facilitate and foster such exciting and comfortable relationships and the differently-abled children are supposed to find themselves in a wonderfully tolerant and inviting atmosphere. Never have I seen this actually happen whilst out and about. Granted, we homeschool so it *does* happen in our home. I am their instructor and facilitator, their sibs are their friends and they are the recipients of a lot of social instruction and "inclusion" in main-stream activities and learning environments.

I know their rights and I do try to include them in as many mainstream programs as they can handle. But I refuse, for example, to sign up Philip for a parks and rec U13 soccer team when I *know* he will not be able to keep up with the other boys. He will not understand the team dynamics, he will not be an asset to the team spirit or to the scoring record. The other boys will find him odd and annoying and the poor parent volunteer coach will most likely have no idea how to handle the dynamic, reign in the criticism of the other children and help Philip conquer his autistic tendencies and make his own little splash on the team. It's a pipe dream at best, at its worst it's setting up my chidren with special needs for failure they aren't even going to recognize or understand. Which is why the three of them went to fishing camp together. They had each other at least (Philip also had his one best friend in all the world along too so he had a bonus but that's fodder for a different post) and they could relate to one another when no one else would try to relate to them.

I have had some small successes. I have to say that the key to making the whole idea work is the instructor/teacher/facilitator role. I find, for example, the YMCA programs to work really well for our kids with special needs. Their instructors/coaches are paid employees, well-trained in teaching and coaching children with a broad range of needs and abilities. They are generally great at drawing out the talents of our kids and helping the typically functioning kids relate to them at a more personal level. Our recent foray into swimming lessons went quite well , also, for the girls, who had an instructor who immediately keyed into Miriam's and Ruth's needs and strengths. If the schools were full of teachers with her level of insight and skill at handling their needs I may not hesitate to send them to public school. Philip's instructor, however, was young and inexperienced with his level of needs. She made some crucial mistakes in instructing him and now he may never be able to do a few of those strokes since he learned them wrong the first time. The girls' instructor also made an effort to form a cohesive group among the four students in her class (3 of whom were my girls). Philip's instructor made no such attempt and Philip remained an outsider without any chance at developing relationships with the other students in his group.

But we have had great success at helping our kids with special needs find a place and feel loved, accepted and be able to form genuine friendships. That is within the special needs population itself. When Philip and Miriam are with other folks who share their needs they thrive. Philip gets to be the hotshot on the Special Olympics basketball team because he happens to be a bit higher functioning than the others. Miriam can't sing a single note on key but she loves to sing and she got her chance to put on a costume and sing her heart out in the special needs musical production. The other parents know how to talk to my children, to bring them out, to joke with them and to seek out their true personalities. The place where we feel most at home with our chidren with disabilities and where those children can really shine is right in the midst of others like them.

I do see it as my job to prepare them to be as much a part of the mainstream population as they can be. Eventually they will hopefully hold down jobs, perhaps live in a group home within the community, or walk to the store to get themselves some groceries. But I don't think they will ever find true acceptance in the mainstream, excepting the few gems who surprise us along the way and care enough to open themselves up to them. And so Getting Along in the World is, for us, just another school subject. They don't do well in that subject and they need lots of extra tutoring. Mainstreaming, Integrating, Including...it's nothing but a pipe dream.

You see, I'm just sayin'...if they can spend a week with a group of kids who didn't even bother to share their names with them, even under the tutelage of two paid instructors, what good does the whole idea do them?


elizabeth said...

This would be tricky. And it depends what age the kids are, perhaps. When I was 2-4 years I had a friend who was mentally impaired (not sure what she had exactly) and we were best buds. Later I saw her a little bit and I still loved her, though I knew that she could not understand everything I could.

It is hard to be on the outside and when one has special needs, even harder.

No easy answers and I will not pretend to have any. I appreciate your views and understand that this whole sort of thing is quite difficult.

Gina said...

Your view sounds very sensible to me.

I'm ashamed that as a child I was somewhat of a bully and probably the worst nightmare of kids like yours. All kids are in a struggle for acceptance and will selfishly seize any advantage. That's a "handicap" many people recognized as talented/ strong won't overcome.

Alana said...

I have special needs kids, too, and I wholeheartedly agree with your views, 100%.

the only thing that makes me sadder than sad is how painful Church Youth Group is: The fact that they aren't really included and that they don't "get" that they aren't included. God have mercy.