At Ren’s school recently, we met as an IEP team, and the Assistive Technology (AT) gal shared her evaluation of Ren. There had been some difficulty finding good seating for Ren both on the floor and at her desk. On the floor because it’s hard for her to sit up straight and comfortably because of her KAFO braces. The desk because she could only sit comfortably by sitting on the very edge of the chair so her feet could touch the floor and provide her with support. The simple solution to both? A cube chair.
She also had some concerns about Ren being able to participate in PE, but the only time she really observed her was when a sub was in there. When I have peeked in on her during gym, she is racing around with all the other kids, and the PE teacher (whom is also the adaptive PE teacher) had already come to me in the beginning of the school year for ideas how to help her be able to participate. During the soccer unit, she duct taped a binder to the bottom of her wheelchair so she could “kick” the ball around using her chair. The other staff agreed that we felt the PE teacher was finding ways to include her, so that concern was dropped.
The main concern dealt with Ren’s ability to be mobile and participate in play time during outdoor recess. Before snow, it was ok, because there is some sidewalk, and I often saw her with other kids, racing back and forth on it together. And, she (with the help of an aide) would get out of her chair and play on the “Supernova” (a web looking play equipment), swinging around using her hips and arms and scaring all the teachers with her crazy lack of inhibitions. But, when winter came, it became difficult to move the wheelchair around on snow-covered ground. So, at the IEP meeting, we agreed to try out an electric wheelchair. This would allow her to move around on the snow, even if to just get her outside, and even if she gets out of it to play (which, when she finally did, had a blast crawling around in the snow with other kids, playing cats and dogs). She also wants her to try it inside at school. At first I objected, as I saw it as…making her seem more handicapped….or as making her more dependent than she is. However, the AT explained that they are finding that little ones who have to use their arms so much are getting shoulder problems when they are older, AND….with all the time on her feet (her classroom teacher makes her use her walker in the classroom whenever possible, which I am happy about) there was concern about her losing stamina, and that affecting her academics. So, with some reluctance, I did say it was ok to try it in the school building as well, when traveling to other classes across the building.
She has only tried it 2 days at school so far, and then it got sent home with us over Christmas break, because she wants to see if it would be something we would use at home. I at first was like, No way would we use that thing. Now that we’ve tried it once, I’m still thinking, There’s no way we would use that thing. It is so HEAVY!!
Ren is doing well. I think she still needs to prove to some of the teachers that she knows more than she shows….because the stories they tell me of what she “does not understand” just do not make sense. She is progressing with reading and math, but she takes FOREVER to write things and do her work. She’s just so meticulous and slow…and I think becomes distracted too. I think she is hanging on academically, but her language delay really gets in the way. Don’t get me wrong, her speech has come a LONG ways, and sometimes I wish the staff there could have seen/known her even just a year or so ago so they could see what I mean, but it still is a barrier. She talks about friends, though, and the other day I heard three girls in the hallway arguing over which of them was better friends with her.
Other things: she should be getting a new walker sometime soon, and the wheelchair attachment, the PT is concerned about her right KAFO brace being too tight or short so we’ll need to get that checked out, and she is really getting harder and harder to carry around, so as she gets bigger, we’ll have to change some of the things we do! However, at least I don’t need to lift weights as part of a workout because she provides that for me! Oh, and the school has now installed automatic doors to the building, since it is necessary for Ren. It is hard to believe they did not have this, but I guess an older building and not a need before her….
Praises: No seizures for almost 2 1/2 years now! Good adjustment at new school and re-establishment of care locally. Caring classroom teacher who advocates for and challenges Ren. We were able to jump right into a county program that provides funding for certain equipment and supplies that insurance would not cover – In our former town in WI, we had to wait 5 years for her to get into it.
Prayers: Her fractured growth plate in her knee to not cause the predicted complications (I am sure we will have x-rays on that in the near future to monitor it), her speech and language to continue great progress (to “catch up” with her peers), increased strength and balance in her legs/torso to enable her to walk with arm crutches someday.
Here are some pics!