There's a tug of war for parents of special needs children that I imagine is universal when it comes to school. How do you know when your child's got a real problem that needs your intervention or when it's an issue that you need to let them work out on their own?
We're always in hyper-vigilant alert-mode, looking for issues before they crop up so that we can be on top of it, in fix-it mode. Some issues, though, aren't ours to fix, but ours to teach our children how to navigate on their own.
Many years ago, my solution to Bobby's schooling was to be there with him and then to remove him entirely and home school him. Each decision was agonizing until the final decision to bring him home. After his stroke, decisions like that became easier. As he's reached adulthood, there have been different types of decisions, every bit as agonizing for me as when he was younger. This summer making the shift from his attending the day center for the disabled to a full-time volunteer at Meals on Wheels and the local SPCA was a tough one. Leaving him that first day at Meals on Wheels, alone, with strangers in the REAL world was terrifying and walking away from him that morning to let him navigate that new world on his own was harder than leaving him at kindergarten so many years ago. But I did it, because, as my mother wisely reminded me, we'd been working towards that moment, for years.
It's worked out well. He's happy there and there have been no issues. He's a hard worker and is doing fine. I don't know whether he'll move beyond where he's at, whether he'll be able to one day support himself, but if he can't, he's in a good place doing good work.
The girls' journeys at school are not nearly as difficult or scary, but there are still hurdles to get over, concerns that worry us, judgments to be made. When Lily started school, we didn't know how she'd do, what her functional level would be. Over the last five years, though, she's proven to be extremely intelligent and able to function well above grade level. We've had to push, cajole, incentivize, argue to get her to do her school work at the level we know she's capable of. This year, we seem to be losing the battle and in the subject areas where we know she tests highest. No, she's not failing, but that's because the effort is non-stop to keep her trying. It's still a 20 point drop, though, in one area, and that's significant.
How do we decide what's the underlying problem? How do we know if we've hit a wall where her autism makes it difficult for her to answer questions because the questions have become more difficult as they move to inferring what characters are thinking and feeling? Or decide whether it's boredom on her part? Or any of a hundred other possible things? It's been a more complicated year, no question about that. She's making friends, but she's also dealing with teasing and moving between three classrooms instead of two.
We'll continue to watch closely, to advise from home, to assist at home, to work to give her the tools to navigate this world, but we'll be looking for those key signs that signal the public, mainstream classroom is no longer appropriate for her, and when we reach that point where the gains don't far outweigh the problems, we'll make the decision to home school her.
We're not there yet, though. We're in that gray area where our guts churn, our hearts ache, and we watch, work, and wait, all while really hoping that choice doesn't have to be made, that with the right tools and motivation, she can navigate this new, increasingly complex and demanding world.