It’s over. Done. Chapter ended, book closed; we’re moving on. Tonight, with Niksdad literally helping me to hit the SEND button on the email, we withdrew Nik from school…and not for the medical reasons we thought we were going to use.
I was on my way to school with Nik this morning after his feeding therapy at Easter Seals; I happened to run into our advocate who was on her way in for a meeting of a special council for children with disabilities. She asked me to join the meeting and I said I couldn’t; I had to get Nik to school. She gave me the “hairy eyeball” and asked whether we had or had not decided to take Nik out of school.
Long story short, Nik and I stayed for the meeting.
When I came home and got Nik settled in for lunch and his nap, I called the Community Legal Aid Society; they have a special Disability Law Project group that handles all sorts of things including FAPE and insurance issues. They took my information and someone will review it and call me back. As I hung up the phone, I cried. Frustration and exhaustion hitting me all at once; I feel weary before the battle even begins. It shouldn’t have to be this hard.
When Nik woke from his nap, we played and laughed and sang and tickled. We played together with his shape sorter for nearly 30 minutes —taking turns, picking out the shapes when I asked him to, finding the shapes of the same color. It wasn’t always consistent and perfect but there was clear cut intent and understanding —and enjoyment for both of us. Every once in a while Nik leaned into me making smacking sounds to give me kisses. He chose another toy and snuggled into my lap with it. It was the way I always dreamed it could be to spend time with my toddler. The way I knew it couldn’t be if we had to keep school in the picture. Regardless of Nik’s placement as “home instruction,” if we pulled Nik out of school for medical reasons, we would still have to fight all the same battles with school.
Niksdad and I talked it over at dinner and decided that we were going to take the chance and cut school out of the picture entirely. We may have to do some battles with Medicaid but we agree that it will be easier than dealing with the school district. And, in the (please, God!) unlikely event that Medicaid completely stops all services — well, we’ll just do the best we can until we find other solutions.
I am not going to lie and say I am 100% comfortable with that possibility; I am afraid that I might not have what it takes to give Nik what he truly needs in terms of education and development without the support of PT, OT and Speech therapies. It’s all we’ve ever known. But, I do know a lot of rehab professionals who would give me great resources to use and I am smart and willing to do anything to help my child. I guess that counts for more than I give myself credit for. And Niksdad and I agree that we don’t want to have to go through the hassles we would with school until Nik absolutely must be there.
We’ve even decided that we are not going to follow up on some of the procedural types of things (and there were many!) which school screwed up. We will make it known for the record that we do not agree with his IEP as it is written; hell, it’s not even complete. There are two full sections missing —his OT and Speech present levels, goals, and objectives aren’t even done. But, we will make damn sure that when we ride this merry-go-round again that we play their game from the get-go. We will insist on every prior written notice, every 10-day notice for meetings. We will record every meeting, do everything in writing, and sign nothing we don’t agree with. We will make sure that we know the laws better than they do and use them to our complete advantage. When Nik is five.
For now though, we’ve jumped even though we can’t quite see the net. It’s a funny thing, too, because between Niksdad and me, I am usually the one taking leaps of faith and dragging him along with me. But it feels right —and good— that as I leap, he is right there holding both my hands, looking into my eyes, and telling me “It’s going to be OK.”
He’s always right, you know.
Of course, I should have mentioned that I *do* have a safety net for myself…all of my blogging friends who keep me sane, send cyber hugs when I’m down, and celebrate the good stuff. I couldn’t do it without you guys!