Laura:
I will be starting high school this year. I’m very nervous about this, and don’t know what it will be like. I am looking forward to seeing my friends, but there is one thing that I dislike about school starting. I found out from the school nurse that I will have to ride on the special needs but because I have emergency seizure medication. I don’t think that is fair because that kind of bus is for others who struggle with other things like having to be in a wheelchair. The bus has a special ramp on it so the boy or girl can get on or off the bus. I just need a trained bus driver that knows how I am feeling and what to do if something goes wrong. I have always been on a regular bus, even after my seizures started. On the regular bus I have my friends who all know I have epilepsy because they have been seen my Mom’s presentation when we were in 5th grade. The thing I like the most about the regular bus is my sister, Emma, is on the bus too. She has seen me have seizures, and knows what to do to help me. I trust her to be there for me. I also didn’t want to get teased by others for being on the special needs bus. No one should be picked on if they need to be on the special needs bus, but it can happen. I felt relieved my mom met with the school nurse and others from the school. I am glad they figured something out so that I can stay on the regular bus. Now, I can look forward to joining different clubs at school, and the musical. High school here I come!
Emma:
I am excited for school to be starting, and seeing my friends. I’m going to work hard to keep my grades up, and doing better than I have done before! I am really looking forward to soccer starting right away too! I did feel upset when I found out my sister’s school was going to take her off my bus, and have her ride the special needs bus. I was upset because she doesn’t need to be on the special needs bus. Everyone would have noticed that Laura was on the special needs bus. I think Laura and I would both have been teased by some other students. I’m happy they figured out a way for Laura to stay on the regular bus. I feel better because I can help keep an eye out of her if she needs help.
Mom:
It is crazy to think that Laura will be in high school, and Emma is not so far behind! I recently got notified there was a busing change in regards to Laura’s emergency seizure medication being on the bus, and being administered. She was going to be assigned on the special needs bus. My husband and I were caught off guard by this. Laura has always been on the regular bus, and has had her emergency medication. We felt she was being singled out because there are other emergency medications for other conditions on the regular bus, and this was not an issue. Laura has only needed the medication once, and it is more of a precaution. Both of our girls were upset by this. It was not only our family it was affecting, but some friends as well who have the same conditions.
I was able to meet with the school nurse and other staff. It was hard because I felt like a mama bear coming out of her cave, but when I got to the meeting I began to see their concerns and they were trying to find a way of keeping her safe. Seizures are complicated; they need to be monitored, timed, and possibly need the medication to be administered. On a bus, this does get more complicated because you have several other students on the bus which need to be kept in control for safety purposes. The nurse provides training to the bus drivers, but did not feel confident the information was completely retained. It is extremely important for the nurse to train staff, teachers and drivers. However, hearing the information from a parent, a person who lives it, and is passionate about it tends to help others to connect and retain the information. The school has agreed to allow me to come into the school and provide training on how to recognize, monitor, get help, and how to treat the student until professional help arrives to the staff. They will be working on arranging for me to do the same for the bus drivers.
They had concerns of someone getting out their cellphone, recording the emergency situation and posting it. It’s a shame, but it is today’s world. The same thing could happen at the store, at an after school function, or anywhere. We are just trying to instill in her that you can’t control what others do, but you can control how you let it affect you. It is a medical condition which she cannot control. Some post videos of their own or family member’s seizures to try to educate and prepare others for what a seizure could look like. Approved videos have been used in educational presentations, and have become a valuable part. This situation is why I feel educating others is so important!
Situations like this tend to have families feel they need to keep epilepsy private because of the way they may be treated or be restricted. We could put Laura on the regular bus without her medication, but we felt it was a gamble we were not willing to take. We felt the issue was the medication being on the bus, but the school’s concern was it being administered properly by the bus driver. I am hoping more training can help that concern.
We came to an agreement she will have her medication with her on the bus, but the protocol at this point is the bus driver will pull over, call 911, and monitor. The chances of her actually needing the medication are slim, but there is reassurance knowing it is there if needed. The school cannot give her sister permission to administer the medication, which we understand. Emma is familiar with it and capable of administering the medication, and in time I am hoping to educate the bus driver as well. Laura will be able to stay on the regular bus. It is so much more comforting to know she will be there with Emma, who will recognize and know to get help quicker than anyone. I will admit it is also a relief to know neither of the girls will be subjected to the unfortunate cruelty of others. However, I do believe kids are more compassionate and understanding than given credit for. If we treat them like we expect them to be cruel, have no empathy, and no understanding, that is most likely what we will see.
When we first found out of the busing issue, we made the assumption they were singling out those with epilepsy or they did not want to do the extra steps to train others. I am so glad we decided to meet with those involved in the decision making process to try to work together. At one point, the school nurse and another staff member offered to personally drive Laura to and from school to allow more time to come to a resolution. That is going above and beyond! It helped to show me they truly did have her safety and health as their concern. During the meeting I had times of raw emotion, anger and frustration, and a few laughs. They were patient and understanding. I had to be sure to keep an open mind so I could hear where they were coming from and why. I could not be clouded by my emotion. I encourage everyone to try to talk about issues, educate each other, and work together. On to the 2018-2019 school year!