New Challenge: School

September 2009 brought about some new challenges for our family. With our son's steady decline and ongoing tests to look for some diagnosis, the possibility of him going to school was questionable. I thought about his ability to be able to handle school for the entire month of August. He was so "out of it" that I didn't think school would really be an option. My only other options were private school, homeschool, or no formal schooling at all until he could become more stable. I made several attempts in contacting our local school board to discuss the situation, but found it pretty difficult to get any response since they were on summer break as well.

It wasn't until the end of our son's 2nd hospital stay in August that we saw a ray of hope. His treatment allowed him to experience a break in the seizure activity and regain at least a small amount of stability. He came home almost looking like himself again. He was able to walk and run on his own, he was engaging in conversation, drawing, writing, and wanting to play with friends. It was such an amazing contrast to the previous couple of months. Maybe a regular classroom environment, with an aide, was a possibility after all.

With only a few days remaining until classes resumed, we attempted to contact the school again. We were able to discuss how our son's condition changed, and was continuing to change, throughout the summer, but we were left with the impression that everything was already in place from the previous year. He could return to school as planned.

The day prior to 1st day of classes we took our son to meet his new grade 2 teacher. We discussed his care and needs, and everything seemed to be falling into place. Our little guy was really excited to get back school. That is until we received a call later that day from the vice principal requesting that we not bring our son to school the following day. They didn't want him returning to school until an aide was in place for him, whom we were told only a few days before was already there. We decided to take the request as only a request, and had him ready for class the following day. didn't want him missing out, especially since he was feeling so well.

Upon our arrival to the 1st day of school, we were immediately sent home. The school board decided that our son would not be allowed to return to school until they met with our Neurologist, and hired someone trained with experience in seizures. I was extremely confused and upset. It took a full month for them to return my calls prior to school starting, were told an aide was ready for him, and then they demand meetings with his doctor??

It was really difficult for us to get an appointment for our son, it could take up to a year for some children to even see a Neurologist. For some reason though the law suit fearing school had to hear straight from the "doctor" what our son's seizures looked like and what his needs were. It made no sense to me that they thought the Neurologist, who to this day hasn't seen any of my son's actual seizures, could describe what his typical events were like. I contacted our local Epilepsy Association and they had never heard of such a request, the Neuro team at the hospital had never encountered one either.