Looking over my previous post, I've realized how much progress we've gained in the last few months. I also remembered that our Neurologist has seen a few of our son's absence (staring) seizures, and the Nurse Practitioner we work with actually saw one of his "grand mals" just a couple of weeks ago. So, I guess I was wrong. Going through all this history has also helped me see how much ongoing care we do receive.
Our son's Neurologist is very thorough, knowledgeable, patient, and treats us with great respect. So much so, that he helped what began as an incredibly frustrating situation with the school board become extremely positive. I wasn't sure how long it would take to get a meeting set up with the school and the doctor, or if it would even be a possibility. However upon hearing our dilemma, the Neurologist was more than happy to cooperate with the school and answer any question they had, especially if it would help our son. We already had an appointment booked for later that week and he agreed to meet with the administrators for the last 15 minutes. I was a little bit shocked that such a meeting would fall into place so easily, but was truly grateful for his generosity and willingness to cooperate.
The day of the arranged conference, 4 individuals came to meet with the Neurologist: the principal from our elementary school, the resource teacher, our son's grade 2 teacher, and a member of the school board. Our son's condition and treatments, as well as answering any and all questions from the school staff. One of the main questions regarding what protocol they should take if our son did have seizures at school. We had a system in place the previous year, but given the new situation it was a necessary question.
We were able to leave that meeting with a whole new outlook and respect for the school board. It didn't take me long to realize that my initial anger was based on a simple miscommunication. Once the time was taken to explain the situation at the school, we were very happy with overall goals. Yes they were covering their butts, but they were also ensuring the best care and education would be available to our son. I put my defensive momma bear reactions aside and began to trust their decisions.
We also left that meeting knowing the principal had an interview lined up with a possible special needs aide, who recently moved to our city, and had experience with seizures. This aide would be by his side for the entire day at school. She would be there to help in the event of a seizure, but she would also be there to help him learn. Our son still wasn't able to start school right away, but there was a solid plan in place. Which was a good thing because, yet again, our son's "awake" days only lasted for about a week before the seizures returned again, along with his haze.
Over these past few months, the special needs aide has been amazing. She meets us at our drop off spot each morning and afternoon so my son is always in arms reach, and we update each other of how things are going for him. I basically get a run down everyday of how my son is doing at school.
I know not everyone gets that much interaction with their children's educators. I also know there's many parents of children with special needs who have to fight, sometimes for years, to get any help from their school boards. Eventually some of these kids are granted funding for supports, but they may only see an aide for 30 minutes a day, or not at all and the money is spent elsewhere. Our fight didn't really turn into a fight at all, but now I have a small idea of what some parents have to face for their children's education.
I feel an overwhelming sense of gratitude for the school our son is attending. Along with their effective reading programming, the principal and any teacher our son's had have been patient and kind. Plus, I really love his aide. I genuinely feel as though my son is receiving the best education available.
Monday, December 6, 2010
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.