Did you listen to episode 544 of NPR’s This American Life, Batman? Well you need to. For some kids things come easy. Things don’t come so easy for Tommy, unless you are talking about music. He’s naturally tuned into that but the rest is hard work.
Episode 544: Batman “Can other people’s expectations of you alter what you can do physically? Alix Spiegel and Lulu Miller of NPR’s new radio show and podcast Invisibilia investigate that question – specifically, they look into something that sounds impossible: if people’s expectations can change whether a blind man can see.”
Every time I read about Daniel Kish I think about Tom and where he is his with mobility and daily living skills. He’s making progress, but I know he’s got a long way to go. It’s not fair to compare people, but there are general developmental guidelines that we can follow. I know we have to work really hard in the next year and a half before he’s ready for public school, because right now he just isn’t ready. He isn’t emotionally ready. He doesn’t have the toileting, social or daily living skills to be a mainstream kindergarten student. When he gets to class he’s going to have to pick up drinks and not spill. He’s going to have to get his food and eat it successfully on his own. Sometimes I want to cry because I know he’s capable of these things. He need to be pushed. I can’t push all on my own. Everyone had to do it. That means no more lazy days! No more wearing a pull-up. It’s time to get serious about teaching Tommy to be independent.
I think part of this comes down to personality. Tommy is laid back and will happily let others do things for him. He is a busy, on-the-go type of guy, but he’s not motivated to put on his own coat or get his own snacks. Those are the things we need to work on. It seems small but it’s not.
I must say that Tommy is doing great according to his O&M at school. She’s a no-nonsense type of teacher that makes him get things right. That’s probably why he’s doing so well! He looks like a natural with his cane (to me, but what do I know…) and he does a great job with it in public. I am so proud to see him enjoy public outings and crowded environments. That was not always the case! I also know that we need to challenge him by getting him out in nature more. He needs to go on walks and hikes with us. I’m also thinking about some boating this summer. When we get a decent bit of snow we are going sledding! Tom doesn’t like snow but he does like to go fast.
Now I do know that they won’t throw him to the wolves when he gets into a mainstream school. I know that the mainstream experience can be modified in many ways, but I also want Tom to have a real experience. I want him to have a fighting chance of having friends and being accepted.
Tom will need a para-educator to help him in class and to adapt things for him. He does have delays and I know he will need that support. I am fine with that but I want him to be able to interact with his peers in a more equitable way. It was always so hard to see him play with other kids when he was a toddler. The other kids were so fast and they would be on to the next toy while Tom was still investigating the first. He’s come a long way socially but I know there’s more work to be done right now.
This is the start of a new push for Tom’s independence. I know it will not make me popular with everyone but it’s time to get serious. Tommy is five and he’s been cruising for way too long. He is capable of much more and we have to help him get there. We are doing him a disservice by not being firm. It was a long road to get him to eat by mouth but we have succeeded. We can do it again.
So get ready friends and family. It’s time to get to work!