The Face of Intimidation

Summer time seems to have brought a lot of very interesting things to the surface that involve our little Claire. It all started with our end of the year update on the IEP. Mind you that at home Claire has been saying all sorts of wonderful stuff on her talker and it has made life a bit easier. For example at dinner on Sunday she found a button that said, “I need to go to the bathroom.” So Jared took her straight to the potty where he pulled down her DRY pants and then she sat down and peed, AWESOME on so many levels. So I am reading the note from the SLP that says that Claire does not understand the concept of choosing from a category of three to then get to more choices. Right, her talker has 45 icons and she found the page that led to the “I need to go to the bathroom.” icon exactly when she needed it. As I read it I am thinking what child are they accessing, this is absurd! I thought about it for a while and came to the conclusion that after almost two years of working with Claire, some of the people still don’t get it, aaaggggghhhhhh!!!! So it had become clear that I now need to take more drastic measures. This morning I talked with our SLP that we use for our home, the one who wrote the report to get the ECO2 because she believed that Claire had a lot to say (we like her a lot!). She was wanting to move our scheduled appointment back so that she could have more time to prepare. She was explaining that she wants to bring something in her visits that would help Claire to grow and make progress and she is having a hard time. We spoke about the SLP at school and her IEP remarks. It was then that she made a remark that really got me thinking. She said that it was good that the school SLP was retiring because when people have been at it a long time and they see something that they have never seen before and they don’t know what to do it is intimidating. I laugh to myself as I type this but it is so true, Claire is terrifying, in a good sort of way, but still terrifying. We have so many really smart people on her team and people that really want to do what is best for her, but truthfully, no body has a clue, myself included. Poor little Claire. I know that she doesn’t mean to scare people. Like when she gets upset because she needed to go potty and we don’t make it and she becomes outraged which fades into deep sadness that she just can’t do what she wants to. I can only imagine how intimidating it is for her. Every day is a huge mountain to climb, to use her muscles to chew and swallow and practice walking and survive Chloe’s hugs. But she does it, and she does it with a big smile and pretty ribbons in her hair. I find myself renewed in my fight for her. I realize that most of the therapist she will ever work with never really know how to help her and will be overwhelmed by the many dimensions that is Claire. But I will help them to think that they can do, help them to understand how she works. And I know that all of it will be worth it, that the investment in Claire will always yield far more than I could ever dream of.

3 thoughts on “The Face of Intimidation

  1. man did i ever need to read this. what is with tuesdays? they are so crappy around here. but this was what I needed to be reminded of. thank goodness for you!!

  2. so true. Wes went with us to Abby's OT today. He noticed that she kept asking me if there was anything I wanted her to work on. Its like she doesn't know what to do. I gave her a Rett handbook and bookmarked a few sections. I think she wants to help, but she just doesn't know how. Our girls are very scary for their therapists!

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