The Future is its Own Kind of Monster

As with most of you, Friday was my daughter’s last day of school. It also marked the end of her first year of middle school. It was rocky but she made it. On to the future.

The future is a terrifying place for parents of kids like Schuyler.

There’s a thing about the future that we don’t always face very easily. It’s uncertain. And while that’s certainly true for any parent, this uncertainty multiplies exponentially for special needs kids and their families. In this season when most parents are celebrating the end of the year and student accomplishments, and when unimpaired kids settle in for a long summer of fun, the end of things brings something different for us. Regardless of how successful or troubled the school year may have been for us, mostly we get to the conclusion of this chapter in our kids’ lives and we think, “Oh, crap. Now what?”

It’s rarely an easy or clear answer. The beginning of summer reveals a thing very much like dread, with all its concerns about child care or the unknowns of summer camps, of sustaining the gains made in school, and of the loneliness of kids who without the enforced socialization of school find themselves spending three months without a single friend. For Schuyler, summer means accompanying me to my university office while I work. That was fun when she was seven. Now at twelve, it has lost its charm for her, and I feel guilty making her spend her summer like this. Perhaps this will be the year we find something else, a camp situation that she can handle, one that WE can handle. Until then, thank God for Netflix streaming and the iPad.

The distant future is a terror for families like ours, especially with an only child. I imagine Schuyler as an adult, burying her parents and facing this grand rough world all on her own. So I do whatever I can to expand her family, to increase the number of people who just might give a damn about her if she were to suddenly find herself alone. And yet I also live in hope that she might find a measure of independence on her own, and peace. Schuyler has always been a lonely child, albeit a mostly happy one. I’m not sure if this makes me feel happier or sadder, but by the time she has to truly face the world alone, she will be a practiced hand at it.

Or maybe, just maybe, she will have found her forever person by then, and won’t have to face a solitary future.

The end of school means an end of fretting about school, but that’s a temporary reprieve. For Schuyler, the past year was a big one, and the more we look back on it, the less successful it feels. I’m not sure I feel like she received the support she needed, not from all her teachers. Her special ed team was solid, and they cared deeply for her, but she had at least one mainstream teacher who failed her miserably, and her AAC use was extremely poor, so much so that we are seriously regrouping over the summer and approaching it anew next year.

There are larger issues, though. This school district represented the very best case scenario in the state of Texas. Its commitment to assistive technology and its belief in what we were trying to do with and for Schuyler had convinced us that we’d found a home at last, after years of moving and started fresh and hoping against experience that this time would be different.

But things change. Administrations change, and each one seems to bring a totally new philosophy with it. The current administration believes in total inclusion. Every kid with an AAC device will attend their home school now, no special classes for AAC users, no transitional work, nothing, just throw them into a school with professionals who have been trained to support AAC and the students will flourish. It sounds very wonderful and fair and ambitious, but I’m starting to believe that the most appealing thing about this philosophy, from the school district’s point of view, is that it requires very little in the way of further allocation of resources, aside from the additional AAC training for every teacher. And here’s some news that will surprise you if you are paying absolutely no attention at all: that training isn’t happening. It’s not even happening at Schuyler’s middle school, and you can literally see that middle school out the window of her old elementary school AAC classroom.

Add to this the fact that this school district is cutting teachers, increasing classroom sizes, and of course — OF COURSE — reducing budgets for pesky frivolities like special education and technology resources. And this is the story all over the state of Texas, and I suspect all over the country. And even if Schuyler does make it out of school with something approximating an education and has the skills to live independently, how will she get around? There is no real mass transit in the state of Texas, not to speak of, anyway. Schuyler’s seizures have so far only been observed outside of the doctor’s office, so she’s not on paper as actually, officially having them. But that will most likely change, especially if she graduates from partial complex seizures to something more… dramatic. And when that happens, she won’t be able to get a driver’s license. What then? In Texas, it’s a very dark prospect. In another city like Chicago, perhaps not so much. The future suddenly looks like it lives somewhere that isn’t Plano, Texas. Or even Texas at all. And she’s twelve; this isn’t exactly a distant problem that we can keep putting off.

So we dust off the long-discarded shoes of the nomad parent, long after we thought we’d never need them again.

Sigh. Deep breath.

And so it goes, and so it goes, into the days ahead, the weeks and years, always driving into the fog, bracing for whatever obstacles may suddenly loom large ahead of us.

Our kids have their own various afflictions, but for parents, the future is our monster. We gaze at it in wonder and fear, trying to discern if we see success or failure, happiness or despair, successful learning or frustration, independence or abandonment. Life or death.

The future is its own kind of monster.

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