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.