On Monday I had a piece posted on another site, a piece about something I did not want. When I read the call for contributors to write about wanting I dismissed it until I came to the provision for "didn't wants." This was easy. I've made peace with Fragile X, but I never wanted it.
Here's a Thursday throwback to the time in that post. April five years ago, 8 months pregnant with Toby and hugging Kaden and Blue after trial one day.
Tuesday Kevin and I participated in Toby's final IEP meeting before he starts kindergarten. This was the biggie where we went through every evaluation ordered this year, chose his eligibility for services moving forward, and choose his primary and secondary exceptionalities. Previously his primary has been Speech/Language but at the elementary school level this would mandate he be placed in a regular classroom. Without the help of a one on one aid, this isn't possible for Toby. And no, one on one aids are not available.
I have no idea what the best school or classroom for Toby will be. It's hard to say what school I want when teachers and students are as much (if not more) of a factor than the actual school. What I do know is that the school Kaden and Blue already attend will be easiest - all the kids on the same schedule. It starts late (9:40) which means that Toby can have a rough night (as he often has), sleep it off in the early morning (as he often does) and STILL get to school on time. I like these things.
Here's what I'm still nervous about:
He'll be in a self contained classroom. (Which would also be the case at another school so I'd be nervous either way.)
Toby mimics, Toby needs to be around "typical" kids to mimic. Toby CAN do subjects like art, music, even computers with assistance. Not a babysitter but a one on one to help him do the work. It's work he CAN do, so I want him pulled to participate in such things.
I'm on the fence about fully including special needs kids in typical classrooms. I just don't see how it's manageable and fair to the teacher. BUT, I also think there needs to be as much messy mingling as possible. On the playground, at lunch. Yes and yes. I WANT this because "typical" kids deserve a friend like Toby. He has much to teach them about how differences can still be very, very fun.
This is happening at church. I want it to happen at school too.
In the most recent school newsletter it mentioned the "Kindergarten Blastoff" and I called to make sure this included Toby too. The person I got on the phone wasn't sure, but didn't think so, but I'll have to be called back.
Here's the deal. This event SHOULD include Toby and his exceptional needs peers. The incoming kindergartners should see Toby as part of their grade. They should recognize him as a fellow kindergartner from the very beginning. Kindergartners that may not have class in their pod but still fold in at lunch and recess and music and art and field trips and then perhaps even birthday parties and play dates. Because how will a kid planning his birthday party ever think to say, "Mom, I need to include Toby. He's in my music class and he sings really loud. It's funny." if Toby's not in her class?
(But before you think I've turned this into MY MAJOR CAUSE AND FIGHT AND EVERYTHING because you think that I think TOBY'S ENTIRE ACADEMIC CAREER HINGES UPON WHETHER OR NOT HE GOES TO KINDERGARTEN BLASTOFF know that when it was Blue's turn to attend Kindergarten Blastoff, I flaked on the date and we totally missed it. So. There's that.)
If Toby's not part of the typical kindergartners world as much as possible. Then he becomes a weird, misunderstood anomaly. And that is not ok.
Let's break this down as simply as possible:
I do NOT want:
*My son to be a weird, misunderstood anomaly.
*I do not want my son to be fully segregated from his typical peers.
*I do not want my child doing the typical curriculum because we know that it's not best for his learning style, and because he's not at that level, so...
*I do NOT want him in a typical class room setting for academic subjects where he'll get nothing out of it.
I DO want:
*Toby to be in a classroom where the academic subjects are catered to his learning style.
*Toby to be around typical kids as much as possible all the other times.
Doesn't seem so complicated, does it?
I should also add, this is a list for the short term. I have wants, big wants for the long term that are also popping into my mind these days because when a mama sends her baby off to kindergarten with tears in her eyes, those tears aren't so much for the cutie five year old, prancing off in his too-big backpack. Those tears are already mindful of graduation day. Because the steps into his classroom on the first day of kindergarten are really the first steps toward walking across the stage and his degree.
*looks around for tissues*
Deep breaths. And maybe I'll think about those long-term wants for another post. But first I'll need to stock up on more tissues.