There are a few preschools near us that are a good fit for children with C’s type of autism, but as soon as they find out that he’s on oxygen, they tell us they don’t think they can take him. Mind, you, these are schools for children with disabilities; these are schools that collect taxpayer money to help provide services.
Oh, they’re all very nice: “We think C would be a great fit, and he would thrive here. Unfortunately, we’re worried about his oxygen tube; it could be a tripping hazard for the other children.” Read: “We don’t want to get sued.”
So we bring C to these schools so they can see how well he negotiates the tube; how other kids are actually quite aware of its presence and navigate it pretty well themselves; and we tell them we can get a nurse to shadow Colin to ensure the tube isn’t a problem.
The response is always the same: “I’ll discuss it with our board.” The meaning is clear: your son’s not getting into our school.
Some well-meaning friends have said this kind of news might be a good thing; after all, why would we want to send C to a school that doesn’t think they can handle our son’s issues? The problem is there are a very limited number of schools that deal with autism, so if none will take him, where does that leave us? Sure, we can hire an attorney to fight the system (it’s pretty obviously a violation of the ADA and other regulations), but with what resources? And what if the schools fill all the available slots in the meantime?
And so we’re faced, yet again, with the fallout from the double-whammy of lung disease and autism.
On a positive note, I’ve learned that some kids on oxygen are learning to use small backpacks with mini air tanks in them, so they won’t have a tube snaking around behind them. I’ve ordered just such a backpack, and hope to load it up with weights this weekend to see if C can manage it. We have to be careful to pad the top of the tank, because it is sharp and could pierce the back of his head. We also need to make sure the pack is adequately padded because if an oxygen tank’s neck is snapped, it will go off like a rocket.
If this solution works, however, the next step will be to negotiate with our insurance company and medical supply company to see if they’ll allow us to get these much smaller oxygen tanks. And so it goes.
Fingers crossed, as always.