Great news, we were called by the Riley Children's Hospital to see if Jude would participate in their robotics program! They just opened this study within the last year and we are so excited to be a part of it. I may be putting the cart before the horse because we have not done the actual evaluation but he should have no problem qualifying. It is 18 sessions of therapy on his upper affected extremity (right) twice per week. It is almost like a game simulation where he will have to move a joystick to the proper movements while playing a game. I am not all together positive about how it works, I assume it will all be explained on Thursday and I will let you all know!
We finally scheduled the case conference for Jude's IEP (individual education plan) so we are looking forward to next week. Then we will all take a look at my independent evaluations compared to what the school therapists saw. At least twice at the case conference in May his physical therapist admitted that what she wrote in the report was not actually correct. She said there was not a significant gait difference when he walked but was when ran. That's the total opposite of what is really going on, when Jude runs he looks symmetrical. He does hold his hand in a flexed position but his legs look perfect. But when he walks you there is a significant limp. That is just one of the errors in her report. I understand that they have a lot of kids they see and a short time to assess them but if it's not correct then why write that in your evaluation.
One of my biggest concerns about this year were things like opening packages and markers and glue sticks but was assured that he would be assisted if he needed it. I was told that people would watch out for him just like they would for every other kindergartener. I've found out this is not necessarily true especially in the lunchroom. His teacher seems wonderful, he doesn't say a bad thing about the classroom. But when we talk about the lunchroom he says he is sad and embarrassed. Sad because one of the two times he took hot lunch he barely made it to his table with his tray before it fell, luckily it was on the table that he dropped it and nothing spilled so he didn't feel bad. But now he is sad because he wants to carry his tray but the lunch lady said she has to do it for him. Why can't she assist him in carrying it, be there in case it slips instead of doing it for him. How will he ever get strong enough to do that on his own or will she be following him every day until high school? As of right now they won't guarantee someone will do that because he doesn't qualify for services. He also feels embarrassed because he has spilled his fruit cup twice when trying to open it. Friday he came home with a stain on the front of his shirt from his peaches and today he told us he couldn't eat his fruit cup because the lunch lady opened it a little bit and told him to do the rest and he couldn't do it in time. I've already changed the way I pack his lunch, anything that I can repackage (like lunchables) I do so in a ziploc bag and any packages I tear a start in the bag but what else am I supposed to do? So tomorrow morning I have a meeting with his principle to talk about these things and how we can make sure Jude is taken care of. If I have to be there every day for lunch I will definitely do that. But he wants to be independent, who wants your mom coming to open your lunch bags in front of all his friends, certainly not Mr Independent Jude! Hopefully tomorrow will bring good news.
We have a lot of hills in our little road but I am confident that we are at least traveling on the right road. My hope is that I can address these things with Jude so that hopefully someone with the same issues doesn't have as many bumps in their road. If I can do that I'd consider it a success.
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