I meet with a team yesterday to discuss options for Larissa. I went prepared for anything. I had a doctors note stating that Larissa could not attend school all day because of the fatigue associated with her seizures. I had the diagnosis from the last sleep study. I was prepared to homeschool (I found a group to join). I was also open to ideas.
My concerns were: she comes home from school so exhausted that if given the opportunity to fall asleep she has worse seizures then she has ever had, some days she comes home so tired she is dizzy, she is no longer able to participate in dance because of fatigue, she no longer carries around books and is excited to read, her test scores are dropping, her reading level has dropped.
The following is her latest progress report, the long stretch of no scores was when she was homeschooled. She started this school year off with a very little gap. I had hoped that she could close that gap. Instead it has widened. Her reading level for her AR books has also gone down. I can understanding a reading level possibly not increasing, but going down was upsetting for me.
Larissa's teacher has been telling everyone that she is fine in class. I have found that to be surprising. The meeting started off with me asking her teacher if she falls asleep in class which she said no. I asked if she could tell that she was tired and she said yes. She said that some days Larissa is checked out. She is not engaging in any way. She is not a behavior problem, just sits there zoned out. I don't consider that to be fine. On several occasions I have asked that I be called to pick her up when she is that tired. I have asked because some days she comes home dizzy from fatigue. There is no benefit to her sitting in class if she is so tired she is zoned out. Larissa has told me that she doesn't fall asleep in class because her teacher wakes her all the time.
We discussed options for a long period of time. Finally it was proposed that Larissa come to school in the morning, go to math, language arts, reading, writing, recess and snack time and then go home at 11:40. No social studies, no science or related arts. So no art, music or PE.
I asked that Larissa be brought in because honestly, if she didn't want to do partial day and homeschool I would have simply done that. Larissa has asked to be homeschooled. She came in and they asked her what her biggest struggle with school was. She told them that she was tired all the time. We talked with her about doing half days. What this would mean to her schedule and what she would miss. She said that she would be fine with half-days. I asked her again at home and she said she was good with that idea.
So we are doing half days. I don't know how long we will do this. We are hoping to get some answers so that she can participate in school all day. However, getting answers is slow, seeing professionals is slow. It is possible that we may never find the answer.