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Wednesday, October 23, 2013

Including those who will never catch up

I got to Janey's school a little early today.  I try to do that now and then, although morning sluggishness and traffic often prevent it, but Janey loves the extra time to run around outside a bit.  Today was beautiful, a lovely fall day.  The morning play area was covered with leaves and sticks and acorns and all the things kids love like that.  Some boys were playing football.  Most everyone had on something Red Sox, in support of the home team playing in the Series tonight.  It was one of those great Boston mornings.  Janey was very happy running around.  Every now and then she'd stop to pick up a leaf, or hold a stick, but mostly she ran, ran among the other kids, never quite interacting but still, I think, very aware of what was around her.

It made me think about inclusion, and how as kids get older, support for it seems to melt away among professionals advising parents.  I've heard quite a few times now from professionals saying that inclusion isn't right for Janey, that she would be better served in a classroom specifically for autistic kids.  I get the feeling that most people think inclusion is fine for little kids, but that when the kids are older, it doesn't benefit either the disabled child or their classmates.

I think this reflects society as a whole.  We embrace, often, disabled children, but disabled teens or adults make us uneasy.  There's probably a couple reasons for that.  One is that we like to think we can "fix" kids.  Sure, let them take a while to catch up.  Let them be around other kids, and have it "cure" them.   In time, they will be just like everyone else!  They just need lots of love and patience!  The other reason is kind of a vicious circle.  Very few "normal" teens or adults spend much time with disabled people their own age, and that leads to fear and maybe even sometimes disgust.  "Look, that big girl can't talk!  She's making strange noises and waving her arms around!  We better steer clear of her!"  We're more tolerant of a range of odd behaviors in the young.

But as I watched Janey today, I thought about how important it is for inclusion to continue to be her life as she gets older, if at all possible.  The reasons for this might be different than when she was younger.  She's not going to catch up.  She is probably understanding less and less of the mainstream curriculum.  She's not going to suddenly be able to make meaningful friendships with the kids in her class.  But in a way, that's all the more reason to have her around them.  I want her to sense the Red Sox excitement, to watch the boys toss a football, to hear the excited chatter of early morning kids.  I want her to have the fullest life she can, and because it's harder for her to access life's everyday joys than most, she needs to be around them MORE, not less.  And it works both ways.  As the kids she goes to school with get older, they are probably noticing her differences a lot more, and working out in their own minds what is going on with her.  By seeing her every day, by being familiar with how she acts and what makes her happy and sad, they are learning that we don't just include people when they are little and cute.  We include them for life, because they are human beings just like us, deserving of a full and interesting and meaningful life.

It seems like there is a point, an invisible line, where many professionals give up.  They seem to say "We gave it a shot.  It didn't work.  She's never going to be part of real life.  It's time to give up on that and find a place for her away from everyone else"  I'm sure they would never consciously say that, but I've sensed a change of attitude from the medical and psychiatric professions.  Not from her school, not from her teachers or administrators  or aides or even the other students, but from the "experts".  Maybe she represents a failure to them, someone that didn't get fixed.  But watching her today, happy among the rest of the kids, content to be living life on her own terms, I think she deserves a chance to be included for life.

3 comments:

Sophie's Trains said...

So beautiful. I do think people turn away from sights that make them uncomfortable, be it disabled people, starving children, cancer patients... Until it affects them. It's like pretending it doesn't exist- until you can't pretend anymore. But I agree with you, inclusion is for the good for everyone - the kids that are included and the kids that are made aware different people live among them from an early age.

sara said...

I think about htis all the time, even trying to pinpoint the age when disabled (especially intellectual disability) stops being cute and starts making people uncomfortable. I've decided it's 10 years old. Tate, at 5, is like a little special needs celebrity at her elementary school - other kids (and parents) go out of their way to say Hi because they know her from the mainstream integration activities, they know she is different, but think it is cute and know they are *supposed* to reach out to her. Here's the thing I struggle with: *I* am uncomfortable with intellectualy disabled teens and adults. Will I be uncomfortable with Tate? Probably never. But will I be uncomfortable with her peers? Maybe. That freaks me out - how do I not be? I think what makes us uncomfortable is that we expect certain reactions from people and when they are unpredictable, that puts us on edge. And I wonder if even integration can get us over that human trait. Don't have any answers, just going to have to play it by ear.

David Fee said...

I'm not sure what to think about inclusion because my daughter is only 3 and goes to a regular daycare. The teachers aren't really equipped to deal with the single autistic kid in the school but they have done some research online. My daughter never got the full blown autistic label but she's on the spectrum and not on the high functioning side of it. A teacher sheepishly asked if she had my permission to do a developmental test on my daughter with the rest of the 3 year olds as courtesy to parents. Sure, why not? She's been through more general developmental tests than most adults experience in a lifetime and I won't be shocked at the results. Maybe she'll do better in an environment where's she more comfortable and the teachers will understand her limitations. I think some of teachers probably believe she's just stubborn or have lousy parents but they seem to think differently when they see her little brother acting normally. Everyone develops at a different rate and we change friends as go through life especially in childhood. Kids that don't fit in get left out and forcing them to mingle seems artificial and looks awkward. What do they have in common when the activities and conversations become more complex? Outside of disabilities there's another inclusion. Even after decades of racial integration, you'll still see a lot of kids self-segregate like they're programed from birth to only swim up the same stream as their parents did. It takes a long time to change attitudes and public exposure to autism is only very recent. I'm 49 and can't remember ever meeting someone on the spectrum in school or long after that. Maybe they were there but I never heard the word "autism" until I saw "Rainman" when I was 24 and still thought it must be a rare disease.