Failing C

2014-04-28-c-repose@2x Our son C has what’s sometimes referred to (non-scientifically) as a "scattered neurology" (high intellect, severe behavior / social deficits), the upshot of which is that it’s incredibly hard to find an appropriate educational setting for him.

So hard, in fact, that the DOE told us they don’t have a spot for him, and have recommended some schools that might. The problem is that some of these schools are up to two hours away, or don't focus on C's particular type of autism.

Add to that the fact that we’ve already been rejected by some schools who say they cannot support C’s unique neurology, and we’ve been feeling pretty down.

Then, one school appeared like an oasis in the desert, a school that could engage C intellectually while helping with his behaviors, a school that created a program focused specifically on children with the same form of autism, a loving school with dedicated staff.

Since C's been in a somewhat inappropriate educational setting for almost two years — one that does’t focus on autism, let alone children with a scattered neurology — it felt like we’d finally had a stroke of luck.

Last Friday the bad news came: we have one week to come up with a huge deposit to secure a spot in this amazing school. This is the kind of deposit that would ruin us financially; given all our past medical and therapy bills, we’re already at the breaking point.

Certainly we can seek reimbursement from the the DOE since they don't have an appropriate spot for C, but that’s risky: we could have our request denied by the DOE and end up owing the entire sum, plus legal fees. In any case, some future arbitration won't help us come up with the required deposit this week.

And now we're scrambling: how do we find a school for our son before September? Do we bankrupt ourselves, cash out our paltry 401K? Do we move someplace (where?) with the hope that they have better public services? Do we put our son into a completely inappropriate educational setting for yet another year?

And so we feel the system has failed our son, yet again. Perhaps more to the point, however: we feel we’ve failed our son...yet again.

And this is a truly awful feeling.

Postscript: people sometimes ask how hard it is to live with autism. My answer: in our particular case, it’s not autism that makes life unbearable, it's the system and support services (insurance, schools, etc.) that do.

Dear France: It's Neurological

This morning a friend sent me a story from the BBC ; to say that I am shocked and appalled would be putting it mildly. In short, France still views — and therefore treats — autism as a psychological disorder, rather than a neurological one.

The French system relies on Freudian psychoanalysis and psychotherapy, and rejects the much more widely-adopted — and effective — ABA therapy. The result, as one might expect, is that French children do far more poorly than children elsewhere who live in countries where ABA therapy is the primary basis of the treatment regimen.

"In the UK there are 17 times more university students with autism than in France. It is unacceptable." — Daniel Fasquelle, Member of French Parliament

This reliance on psychotherapy rather than behavior therapy points to an underlying perception that autism is some form of character defect on the part of parents and child alike. It means treating the personality, rather than modifying the behaviors that so dramatically affect the lives of those with autism.

At present, there are no therapies to treat the neurological manifestations of autism, though I do believe those will come in time. Until then, ABA and a few other accepted, proven therapies (e.g., Greenspan's Floortime) represent the best chance for children with autism to lead better lives. It is devastating to think that in a modern country like France, ASD children would not be able to get the help they need because of such a fundamental misperception.

Accepted

After months of searching, C has finally been accepted into a school for children with autism. This comes after being turned down by other schools that couldn't or wouldn't deal with his oxygen. (Yes, this is probably discrimination, especially since these schools collect taxpayer money, but we have neither the energy nor the appetite for a legal battle.)

The school is not far from our home; it has a great reputation; the staff seem terrific and caring; and, most of all, they weren't one bit hesitant about his being on oxygen.

While this should be cause for celebration, it comes with one reservation on our part: they want to put C into a class with children who seem to have even more significant challenges than he does. This made us question ourselves:

Is C's autism even more severe than we thought, or is the school simply erring on the side of caution by getting him into a more fundamental setting to see if he can progress from there?

Whatever the case, we're grateful to at last have some resolution with regard to where he might attend school next year. And, while I believe parents usually know best, there are times when you just have to put your trust in the expertise of others.

The Double Whammy

No Entry 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.