A Simpler Season

It’s time for another transition. This is Schuyler’s last week of school, which in her case means the last week of middle school. Next fall, she begins high school, which doesn’t make sense to me. Babies don’t attend high school, after all. And young men don’t have high schoolers for daughters. The passage of time isn’t making a great deal of sense to me of late.

The transition from spring to summer is a universal Big Thing for families. For special needs parents, the contrast can be even more extreme. It’s not the same for everyone, not even close. For some families, the extra work and stress of caring for a child whose daily needs are complex can make for a jarring experience when it suddenly becomes an around-the-clock again for a few months. That’s not a small thing, at all.

It feels different for Schuyler, obviously. She’s ambulatory and largely self-reliant. She doesn’t have serious medical issues, and her complex partial seizures seem to be mostly under control now with her seizure meds. Not completely gone, perhaps, but much less frequent and with a much shorter and less dramatic recovery phase. Aside from the potent headache medication she takes after a seizure, Schuyler receives very little medical care at school. Socially, she requires very little redirection and no real behavioral modification.

When Schuyler comes home for the summer, and especially now following a spring fraught with contentious meetings, there’s a sense of relief for us. There’s a feeling that she’s back home. This was a tough year. Everyone connected with Schuyler tried hard, and some succeeded. But here, standing at the precipice of her high school years, our concern for Schuyler’s future has never been more anxious.

Schuyler is tired of being tested. She’s sick of the ridiculous STAAR test (and retest), she tired of being evaluated, and she’s completely over being shoved into boxes, figuratively speaking. As her parents, we’re equally tired of reading and signing written explanations in the most professional vocabulary possible of exactly how broken our daughter is.

Spring is a hard season for parents of special needs. We all joke about it, about bringing a flask to the IEP meeting (well, that might be less of a joke and more of an example of “out-of-the-box problem solving”), but the truth is, we choke on the anxieties that haunt these meetings like angry ghosts. Those anxieties live in the future, which as we all know is the scariest place in the world for families like ours. Spring is when we face that future. Spring is complicated.

Many of us with special needs kids make noises of outward exasperation at the onset of summer, and we mean it, too. But at the same time, when pressed, I suspect many would admit that we’re relieved, too. The schools will be giving us back our kids. Whether those schools have gotten it mostly right or mostly wrong, when we get our kids back for the summer, we leave a great deal behind. We’re done, for the time being, with all the complications of negotiating school policy and modified curriculum and imperfect behavioral plans and all the modification required to make our beloved square pegs fit into those educational round holes.

For many of us, summer is a simpler season. If spring belongs to the broken parts, summer owns the rest, the parts that we celebrate, the parts that will one day save our kids, if they are lucky enough to be saved.

For Schuyler, summer means the pool. It means hanging with her Miracle League friends and visiting as many of her family members as she can. This summer, it will include volunteering at a summer design camp, which will be new for her. Summer means occasionally coming to work with me, and it means playing too much Mariokarts 8 at home. Summer means never ever wearing anything more shoe-like than cheap plastic flip flops. It means losing as many pairs of sunglasses as possible. Summer is for taking her iPad outside at night and finding stars and planets on her astronomy app. Summer is for laughing. It’s for being herself.

“We are accustomed to look upon the shackled form of a conquered monster, but there — there you could look at a thing monstrous and free.” — Joseph Conrad, Heart of Darkness

There’s been too much shackling, too much conquest of late. Time to be free for a little while.