Failing C

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.

A Friend In Need

Lewis P is in the hospital.

Who is Lewis P and how do I know this? He's a boy who goes to school with C, and he's also one of the first and only people C has ever mentioned to us. In fact, C has described him as "his friend," a proclamation so profound and surprising I don't think I could ever forget the name.

I asked C if he had played with him today. "No, Lewis P is at the doctor."

"He's not at school?"

"No, he's at the doctor."

C says a lot of unusual things, so I asked my wife about it. Her expression was grim. "Yes, I heard he was in the ICU."

So now there's this. A little boy I don't even know, but who has distinguished himself to me by being my son's first official friend, and now he's apparently in the hospital.

I don't know you, little Lewis, but I hope you will be back at school soon. There's a little boy I know who would like to have his friend back.

School, Separation, and Loss

C waits for the school bus.

It's not been easy for me to accept that the twins are going to separate schools now. C seems fine with it, while M pleads with us to let him go to C's school. I guess it represents for me an undeniable divergence in their life paths. While I've come to accept that this is what's best, it still pains me.

Upon reflection I realized why: I lost my younger brother when I was just a little older than my boys are now. Despite my young age at the time, I've always felt the void left by his death.

I've had dreams where he's reappeared, sometimes as a grown man, others how I remember him last. His absence has been a fundamental part of my life's reality. Call it survivor's guilt or whatever you like, I know what it's like to lose a sibling (two, actually), so I have to remind myself that this isn't the same thing. My boys aren't losing one another. They're just spending a few hours a day apart.

Maybe the absence will bring them closer. Whatever the case, this is what has to be for now.

Summer's Last Days

We're spending this long Labor Day weekend as we do most weekends: going to playgrounds and parks, running errands together, and visiting friends.

In just a few days the twins will begin attending different schools; it's hard to imagine the boys apart, since they've been together since birth. Nonetheless, we know this is what's best, and we even wonder if the time apart might bring them closer still.

Above: C hams it up in ladies' glasses at Target

In other news, C did two things today that blew me away. Tonight in the bath, as M protested my brushing his teeth, C said, "M doesn't want you to brush his teeth!" It was the first time I'd ever heard him reflect on the feelings or wants of his twin so directly, and it took me by surprise.

The other event involved identical train conductor hats we bought for the boys at Target yesterday. This morning C suddenly bolted upstairs saying he needed to get one of the hats; we had no idea why, since he was already wearing one. When he found it, he ran back downstairs and handed to to M, saying, "You wear it, M!" Again, I've never seen this kind of reciprocity from C toward his brother, so I was thrilled.

The day ended on a slightly less stellar note: C's evening stims have gotten pretty severe. He is completely unable to settle himself, and spins around and around in his bed, thrashing and screaming at the top of his lungs (what must our neighbors think?). His screaming and thrashing is actually starting to frighten M, so we have taken to letting M fall asleep in our bed until C settles down.

We're doing research on ways we can minimize the evening stims, but we know this is a phase and we're just going through a rough patch. Of course with autism, every bump in the road makes you wonder if things are just going to get worse from here, but time has shown us that, overall, C is making progress. We just have to continue working on the problem areas and supporting the good stuff.

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.