Audrey is too Special even for the Special Programs, of course. I know this, and knew I'd need to send her to the "free" evening with her $18-an-hour sitter, because no matter how inclusive people want to be, they are never inclusive enough for one-on-one supervision (plus sign language). I explained to the program manager that Audrey doesn't enjoy organized games, peer interactions, or circle activities, but would love the activities available in a gym if they were okay with her doing her own thing. She seemed to understand, on the phone.
So I duly filled out the four full pages of medical information - that the team doesn't even need, because Audrey is going with our sitter, but they require it for their files anyway - and headed over there tonight for our first session.
The gym is in an older school, with great murals everywhere and those bathrooms with the half-high stalls that leave little girls exposed to any adult who pokes their head through the doorway. Cheerful but shabby. One placid little girl with, it looks like, Downs syndrome, was rolling a ball back and forth with a counselor when I walked in.
I was excited to see a rock climbing wall, plus wooden and rope ladders along another stretch. "Audrey will love that!" I told the manager. "Oh, we can't use those," she replied. "They belong to the school." Uh oh. I got a familiar sinking feeling. Audrey was stuck in traffic with her sitter, but on her way - and I knew her first go-to when she got to the gym would be those climbing walls - and that the whole hour and a half could be taken up with blocking her from determined efforts to get up them. Or at least, the 20 minutes she'd keep trying before melting down and having to leave.
"She's really going to want to climb," I said.
"It's okay. I usually explain to the kids who want to climb that those toys don't belong to me, so we need to play with these toys." She pointed to a meager pile of balls, traffic cones and a hoop or two.
I had a brief hope that she was joking - but her serious expression doused that immediately.
No, it's NOT okay. Enough, already! Why, with a supposed epidemic of autism, are the special needs of severely autistic kids still almost completely unrecognized, even in programs that are supposed to be totally inclusive?! Damn it, you don't put a child with autism who loves to climb and jump and roam, in a gym where all the equipment for these activities is off limits! Blocked off with cute little handwritten signs. Ha!
All the other kids who showed up were apparently okay with the limits. They are the gentle, compliant type of "special" kids that the special programs like to get. A couple of walkers, a wheelchair (that Audrey tried to confiscate when she saw it because it was, frankly, the most exciting prop in the room without a "do not climb" sign taped to it); slow, plodding, sweet children who apparently believed an obstacle course made of traffic cones and a low balance beam is fun.
Audrey did sit in the middle of the balance beam and bounced for awhile - the most inclusive thing she tried, I'm very proud of her for it! Instead of making Audrey part of the obstacle course, I am told, which probably would have added to the excitement for everyone involved, all those sweet kids waited while aides tried to convince her to move out of the way. The mountain and Mohammed, I want to tell them. Figure it out!
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If you're looking for a politically correct or inspiring account of living with adversity and loving my "special" angel, you're in the wrong blog. That stuff might seep out sometimes, but this is where I plan to be raw and angry when I need to, and not paper over all the hurting with platitudes.
Your "raw and angry" story shows the ferocity of a mother's love like no numbed-out politically correct story could. Thank you for sharing this.
ReplyDeleteOh I know this. We keep wanting to give the "Special Pops" programs a go and have tried several times only to be asked to leave. Though we've been able to do the swim lessons (course the boy has his one-to-one we provide and then instructor to himself) Even "Ski for All" has asked us to excuse our hitter. Someday there will be room, the struggle is just a little exhausting.
ReplyDeleteSometimes amazing things happen. Here in Cairns, Australia, the support group, on a whim, booked a 'birthday party' at the local gym which meant the kids had 2 hours to explore the equipment, parents trying to chat while they remain on a short leash. The trampoline and foam pit being popular congregating areas. This has become the groups most popular monthly event, with up to 30 kids attending - including siblings who get a chance to bring a friend too. The ASD kids are at all levels of functioning and playing with the security gate or roller door for 2 hours does not raise an eyebrow - if that's the best bit at the gym. The staff enjoy a nice two hours in their office catching up and then try to organise group games at the end - we like to make them feel needed even if it means the parents are the only ones playing. But how many whims do you pursue before it becomes a 'good idea'? Quite a few.
ReplyDeleteJoy, getting to see a glimpse into your love, struggle, joy, anger, frustration, and mother's angst for her child is not only cathartic for you (I hope), but a privilege for us, those that love you, to be invited in to your world. Thank you for sharing it with us! Love you...
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