Sam has, at long last, received a statement that we can live with. The LEA sent a draft statement in late April that was abysmal. Ali of Parents for Inclusion was kind enough to share her son’s statement with me and I rewrote the statement using her son’s as a model. Ali then came over and went through the draft I’d written, offering some useful suggestions. Håkan then attended a meeting with the head of Special Education for the borough; our babysitter fell through at the last minute so I wasn’t able to go. The final document is mostly the statement I wrote and mandates that Sam will receive 27 ½ hours of support from now through the first two terms of Year 1. Now if only that support would start... I continue to be horrified by the statementing system. It is very unfair to those who don’t have any background in education/health and above all, it’s unfair to the children and their families.
Sam ended up having a very long break from school recently. Several weeks ago he had a double vaccination. His arm swelled up a lot and he got a high fever. Then we had a lot of drama regarding the antibiotics. The following Sunday, after having taken him to the doctors Thursday, Friday, and Saturday, we finally realized his throat was completely white with infection. After more antibiotic drama we found one he would take. This meant that he missed almost 2 weeks of school, and then it was half-term, so altogether it was a nearly 3-week break. This meant that the first couple days of this week Sam was happy to go to school, but that of course changed by Wednesday, and today he announced he was never going to school again... How I hope that some support will lead to less tears regarding school. I know he likes some of the things he does there. He brought home a “weather box” yesterday that has “lightning” coming out of it, he was quite proud of that. Weather is Sam’s current interest, clouds in particular. So we currently all have cloud nicknames (in addition to all our other nicknames): cumulonimbus, cumulus, stratus, and cirrus. We also have straight-up weather nicknames. It gets a bit tricky to keep track of all the nicknames at this point.
Nina has learned to climb in the last couple weeks. She has been hanging quite a bit—we have to be careful around monkey bars because she will jump and hang even without an adult spotter. And now she has been figuring out how to climb up bar ladders and rope ladders as well. New steps like that are really fun. We also bought Nina a tricycle (with a parent push handle). That will clearly take awhile for her to get used to. She is excited about the idea but really hasn’t figured out the steering or pedalling bits yet. It doesn’t help that when Sam is home he likes to ride it. But I’m sure she’ll get it in a few months. She is starting to really dislike being confined to a stroller or even the bike seat so I’m hopeful that the trike will eventually be a good alternative. Sam, meanwhile, has gotten suddenly much better at riding his bike with pedals, to the extent that we lowered the seat on his Puky so Nina can try that as well. It is good that Sam rides a proper bike but it makes the walk to and from school, especially TO school, even more anxiety-ridden. Of course if Sam had his way he would drive. I have been studying for the theory portion of the British license exam and the other day I went into the livingroom to find Sam reading section 13: Accidents very thoughtfully on the futon.
We had a lovely visit with Sally, James, and their three kids at their house last Sunday. Two of their three are somewhere on the spectrum, which makes them such an easy family to spend time with, because we all understand each other quite well. We were very lucky to meet them through Kidzactive, the group for activities for young children with autism that is sponsored by the NAS Richmond branch.