I dropped off Sam’s IEP paperwork today.
I’ve been planning to do it for a month or so now. I was just afraid.
I don’t ever want to repeat what happened to him. Which is, of course, an understatement and too obvious to actually be what I’m saying. But the two to three months prior to Sam’s accident was hellishly hard in ways that got lost after how bad the accident was – at least to everyone else. For me, the accident was just a nightmarish continuation of a situation that had gone downhill so fast and so far.
I don’t know if I want him back in public school. But I do know that what I want isn’t as important as what he wants. And if he thinks that going to school is what he wants and needs, then I need to do whatever I can to make sure that it’s possible. And not only possible, but I want to set it up so that he can succeed, to structure it in such a way that he can do what he needs.
No decision is permanent, and I can pull him out if necessary. Not even if necessary, if he decides that he can’t do it, or doesn’t want to do it. Homeschooling is going well – not fantastic, but well enough that I can see doing this up through high school.
Part of what happened, with the accident, is that in a real way, everything changed for Sam. We were so lucky that it was just a psuedo tumor, just a big scar and vision loss. It changed everything. All of those expectations and hopes that you have when your child is healthy and neuro-typical – those seemed…. beyond what we could think about for a while. Rebuilding that is both incredibly empowering and terrifying.
This is a hard time. Nowhere near as much as when he was in and out of the mental health clinic, and not even close to when he was in so much pain and terrified. But it’s still not easy. I’m afraid of the future. I’m optimistic about it too – because he has come so far, and is doing so well – but there’s a lot of damage and baggage from the past few years. I’m not as resilient as I was before, I know how bad it can be. It’s a lot harder when you don’t know what it’s like to have a child lost in anxiety and fear and rage and terror. When you haven’t sat in the PICU, with doctors coming in and out of the room, all offering a different treatment plan…
This is where we are. And I’m so grateful for it. Just hoping that the gratitude and optimism wins out over the fear and anxiety.
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