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.

Janey Live on Video, singing and talking!

I've had a few people ask if I could post a video of Janey's singing.  I've always had a hard time catching her in a true singing mood, and I've made some attempts that didn't work out.  But this afternoon, she was in the backyard running around and singing eagerly, so I grabbed my camera and started filming.  Hopefully, the link to YouTube will work and Janey can make her debut here!

There are a few things in the video that are very typical of Janey.  One is the pacing around.  I had to follow her back and forth across the back yard to stay somewhere near her.  Janey does this the whole time she is outside, pretty much.  Another is how I prime her for the songs.  I sing the first line or so, and she finishes, if she likes the song and wants to.  She sings lots of songs on her own, but in order to get some sung for the video, it was easier to do the priming!  You will also notice how she completely ignores my direct questions, like asking if she is ready to go inside, and my direct requests, like at the end when I asked her to say goodbye.  This is pretty common!  It's only the last month or so I sometimes get a "yes" answer to yes or no questions, but opened ended questions are just about never answered.

You can also see toward the end that Janey is getting upset, or you might not see that, but she is.  When I asked her to sing "She'll be Coming Round the Mountain", she started singing a bit in her frantic voice, and then she was repeating "Hickory Dickory Dock" over and over.  I could tell she'd had enough, so I ended the video.

Janey probably knows thousands of songs by heart and by tune.  She often makes connections between songs based on lyrics or on melody, or tone.  I wish I could think of the name of the song, but I played something in the car a few weeks ago, and when Janey wanted it repeated, she said "I want that Grinch song"  The voice of the singer and the general tone of the song were very similar to "You're a Mean One, Mr. Grinch", although the song didn't have the same melody or words at all.  She has started adding her own touch a little to songs, like giving them an operatic style finish.  She isn't at her best in this video, due to mostly being concentrated on running around, but I wanted to show how her talking and singing worked a bit, and how she moves.  I hope it's helpful or at least interesting to you all!