August 18, 2015

The hardest time of year

My Facebook feed is filled with photos of children heading back to school, their eyes brightly filled with nervous anticipation. Next week, I'll post some back to school photos too. Jelly will be starting first grade. I can hardly believe it.

But Moe, once again, will not be starting school. Not traditional school anyway, the kind with backpacks and lunch boxes and newly decorated classrooms. Moe will, for now, continue to be homeschooled. And even if it is the right thing for him, it hurts.

While most parents of special needs kids learn to ignore milestones, to accept their children exactly as they are and celebrate progress whenever and however it comes, there are still those things that are bigger reminders. As if we could forget.

It might be the holidays, surrounded by family or friends whose kids are striding forward just as everyone expected them to. Maybe it's birthdays that unglue you, forced to face a new number, another year of nowhere near where you thought they'd be. Maybe it's summer break, watching kids go off to camp and family holidays, knowing you're unlikely to ever take a real family vacation again.

It's all hard, but for me, back to school time is especially rough. Facebook is filled all at once with photos of every kid I met in the early days of motherhood, through babyhood and first steps and mommy and me classes. How big they are! How far they've come! Third grade already. Happy to get the teacher they wanted. Happy to see friends. Happy.

And we, once again, are faced with choices, risk in all of them. Send him back to a public school that isn't able to serve him well? Fight for placement, knowing that it would be better than what the public school would offer but unsure if it would be better than what we're doing at home? We're doing the work to figure that out, and we will. But it isn't the problem I want to be solving.

I want to be helping Moe with friends and homework and auditioning for the school play. I feel bad that I can't give him those things. I feel bad that I can't take away his frustration and anger and anxiety. And mostly that I brought him into a world that is not set up for him, and for not knowing how to help him get set up for the world as it is.

June 28, 2015

Things Change. Things Stay the Same.

It's been hard for me to write lately. I'm tired, working full time. And since I work as a writer, even though my daily writing is very different (should the button say "cancel" or "continue?"), that piece of my brain, the piece that makes me need to move my fingers around a keyboard, is tired at the end of the day. And then there are kids to put to bed and dinner to make and chores to finish. And also Orange is the New Black.

But those are all excuses. You know it and I know it. The truth is I haven't wanted to write. It's been too hard. Too hard to find the energy to hash it all out. It's so much easier to block it out for a few minutes with a glass of wine or the latest episode. Or both.

Moe turned 8 in May. And while I've long given up on the comparisons and the what would he be doings, each birthday is one step closer to the rest of his life and all there is to worry about. The Future. About no good options for housing and care and what are we going to do when we aren't here anymore. I woke up in tears one day wondering who will make Moe his favorite foods when I'm gone. It's a silly thing. Except it's not.

And then, because it was June and the end of the school year, we once again began the IEP dance with our school district. They do the assessments. We observe sessions. We craft goals. We talk to some very well meaning people and some not so well meaning and they offer us the same thing they offer us every year. A bundle of services in a classroom that is totally inappropriate with a staff that is woefully unable to handle a kid like Moe.

So we continue to do what we've been doing. And hoping it's the right thing. And not sure how to proceed if it's not.

And along with all of that, the aggression and self-injury has returned. Moe hit his head so hard on the dining room table that his entire forehead swelled up. And then, as the swelling drained, his eyes turned black and blue. With newly missing top teeth (even the most special kids can't escape some of the normalcies of childhood), he looked like a prizefighter. A cute, eight year old boxer in striped pajamas.

We went through the gamut of reasons. Pain? Teeth bothering him? Sick? We took him to the dentist just in case. He was messing with his ears a little. Ear infection? Just unhappy? Needing sensory input? Too much input? And how we want to help him, and how we want to stop being scratched, grabbed, attacked by our boy. And the whining and needing but never knowing what. Food? TV? iPad? Sorry kid, you broke it. Bit and cracked the screen - right through the case.

His doctor increased his medication. We waited a few days to get some baseline data. And then we started. Just a small increase. And things got better. Just like that. It's only been a few days and I'm trying to enjoy how sweet he's been. Affectionate and wanting to sit with me. And he's better at communicating. I'm trying to remember not to flinch when he turns quickly toward me. Trying to enjoy the silence and have a little more patience with Jelly. Trying to push out the fears of what if this dose isn't enough? We can't just increase it forever. Right now it's enough. Breathe.

There were good things this summer too. Jelly turned 6 in April and then finished kindergarten. I took her back east for a week to meet all the cousins. She got to run and play and not have every day determined by Moe's mood or needs. It was important for me too. I have good cousins and aunts and uncles I don't get to see very often.

This week starts the next chapter for us. After a few months off to take care of Moe, Jeff goes back to work tomorrow. That was a big deal I haven't talked about here. Maybe another time. Our new nanny has her first solo week with Moe. She survived a rough first week, but I hope next week will be better. Jelly has one more week of camp before she's off for the summer. And I'll keep on working, and writing when I can.

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