Rose and I started kindergarten together. The first two weeks were half days, so the teachers could make home visits in the afternoons. Our plan was for me to stay with Rose at school until her teachers came to our house for the home visit. They knew this plan and could have scheduled our home visit earlier. Rose and I were both known at the elementary school because Rose’s older brother was there. I had been involved in the Parent Teacher Association and volunteered often.
I will always remember those two weeks of constant action. Rose’s teacher and assistant were both amazingly patient and pleasant women. There was constant activity every minute of the day, even during nap time. I found it exhausting, but very entertaining. I felt really good about Rose being with these two women. I knew, despite their many responsibilities, they would take care of Rose as best they could.
The day of the home visit arrived. Rose served her teachers brownies and lemonade. We talked briefly about funny events that had occurred during the first weeks of kindergarten. Rose was happy to have her new teachers in her home.
They both sat on the couch as I demonstrated how to handle a seizure using Rose’s large stuffed cow, Lovey. I described how a seizure might start and then placed Lovey on her side. I opened Rose’s big red seizure bag that was to stay in the principal’s office. I put a rolled towel from inside it under Lovey’s head and pulled out Rose’s emergency medication and pretended to administer it to the cow.
After I finished the demonstration, I looked into the teachers’ faces and waited. Would they handle this for us? Could they do this? Were they willing to take this on? Most importantly, was I going to have to spend the year in kindergarten?
They looked at each other. Then looked back at us. Ms.J said, “We can handle this.” I couldn’t believe what I heard. Just because public school is obligated to make accommodations does not mean they gladly do it. Ms.S said they both knew how to handle seizures. One had a husband who had epilepsy, the other had seizures herself and was taking the same medication as Rose was. The principal knew all this. That’s why he put Rose in their classroom. I felt so blessed to have these two women be part of Rose’s team. What a relief and a gift. I will always be grateful to these two wonderful women.
Seizure Mama speaks to parents:
A “seizure bag” went wherever Rose went. In it were several towels, a change of clothes, wipes, paper towels, and a bottle of water. Her emergency medications came in packs of two syringes and were somewhat expensive. One was kept in the big red bag at school, the other one in my purse. These emergency drug syringes could not be left in the car. The drug could not get too hot or too cold, so the syringe stayed with me. This meant that I carried an over-sized purse for years. I rolled the sealed syringe in a bandanna scarf to protect it inside my cluttered purse and used the bandanna to cover Rose during a seizure. This is how you live with epilepsy on the go.
Seizure Mama and Rose 