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Writings on Motherhood, Judaism, and Happily-Ever-Afters

August 2018Monthly Archives

IEP

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.

 

Summer 2018 retrospective

It was a weird sort of summer for us.

Jessie had a ton of homework, and several scheduling snafus that led to her doing an enormous amount of work for a class she won’t take until next year.  Sam announced happily that he’s ready to think about going back to school, and Julie spent an absurd amount of time watching the Harry Potter movies and far too many Kids Baking Championship shows.

We did hit the beach a few times, several day trips into Boston or up to a lake for a while.  I had big plans that we’d do so much – and we really did next to nothing.

The girls fought almost all the time.  Sam slept far too much.

But on the upside, it did mean that we’re very excited for the start of the school year.  Jessica is starting her sophomore year (three years left – insert dramatic sob here), adn Julie is in the third grade, and so far, loves her teacher.  Sam is finishing up Level 5 in Build Your Library, and hope to finish Level 6 this year.  We’ll finish the intermediary levels in Life of Fred for math and start the decimals and fractions books this year.

I’m feeling… content.  Things are going really well with Marc’s job, and I’m so grateful for that.  He’s happy and fulfilled, and the hours are so much better than anything he’s had before.  He does have to work at home a lot at night, which sucks, but he’s HERE and that’s enormous.  Both girls are thriving – they both wanted to go to public school (because I lobbied for homeschooling for both), but they’ve got friends and like the routine.   And so far… it works for them.  Sam is doing fantastically well at homeschooling this year.  So much more amenable and open to learning, to structure and trying new things.  Which makes it both harder and easier.  Easier because it’s just so much easier, but harder because I know he wants to go back to public school eventually, and I’m dreading it.

It was so hellishly hard before we pulled him out of school.  His anxiety was thru the roof, and now we’ve got a TBI and low vison to add onto the burden.  It’s been three years.  Well, two and a half, and we were just now at the point of starting to maybe think about starting a little math two years ago.  I want him to succeed.  I want him to know that when he works hard and does his best, it gets him the results he needs.  I don’t want him to slam into his disability.

I want him to not have a disability.  But if wanting made it so – the past three years would have been very different.