Starting a new school year is hard on every parent and child, but it’s particularly difficult when you have a child with special needs. As a parent you want to make sure that those needs are met all day every day, even if you are not with them. Even after you explain what your child may need, no one will ever truly understand like you, the parent, do.
We are a family of educators. My parents were teachers, and now my husband and I both work in schools. So going to school is just second nature. But being a parent to a little boy with Duchenne muscular dystrophy has meant learning some lessons not on the syllabus.
Our son Ethan has always had very positive school experiences, but it can be challenging to ensure everything is in order for him to start a new school year. To start with, it’s more than just Ethan that we need to coordinate. To help him throughout the day, he has a one-on-one aide (a role filled by three different people at different times of the day) who helps Ethan when he needs assistance carrying his backpack, using the restroom, during PE and climbing stairs. Sometimes, Ethan rides in a wagon pulled by his aide when the distance is too far. (Our family is in the process of getting Ethan a powerchair, but it did not arrive for our first day of school.)
Second grade got off to a bit of a bumpy start this school year. When I pulled up to drop Ethan off on day one, there was no one there to greet him, get him out of the car or carry his backpack. I immediately contacted his case manager and made sure that there was a plan in place for the future. Luckily Chloe, his sister, was walking in with him and they had each other.
There is a lot to consider and a lot of coordination necessary to make sure Ethan has the best experience possible. We need to know his schedule, who is picking him up from the car line, who will be with him during the day and when, what kind of PE (adaptive or regular) he will have, if there will be someone with him during extended day, and if he will have a rest time.
To help Ethan have a great day at school, every day I make sure he has in his backpack a snack to stay energized, a water bottle to stay hydrated throughout the day and any written communication that needs to go to the teacher.
Getting around in the classroom can be tricky for a child with a muscle-debilitating disease. Teachers can do a few small things to make their learning environments more accessible to students like Ethan. For example, they can make sure his desk is on a corner by the door so he doesn’t have to climb over any other chairs and risk tripping. Ethan is shorter than most 2nd grade students so having things within reach of a shorter child is also very important. It’s also essential that during floor-time activities like story time to have pillows, small chairs or bean bags so that students like Ethan are more comfortable when not at their desks for long periods of time. In other areas of the school, it’s best if Ethan’s locker is near the entrance so he doesn’t have to drag his backpack very far.
Can you guess Ethan’s favorite part of the day? Here’s a hint: it involves food. Yes, Ethan loves lunch. He is also enjoying adaptive PE. This is the first year he is able to do adaptive PE, and what a difference it has made! Last year he wanted out of PE because he couldn’t do some of the activities the other kids were doing or he was getting too tired. Now he comes home raving about what fun he had! Ethan also enjoys math. The hardest part of school is that the long days are hard on his little body. Ethan truly loves school, but he is very tired in the afternoon from all the activity and walking around.
Ethan’s best allies at school are the nurse, aides, his teacher, his case manager, the counselor and the principal. I communicate with each of them to express his needs and the expectations I have for Ethan. Building relationships with the teachers and administrative staff who take care of any child with special needs is crucial. They will see that you are involved and there to make things work for everyone. Get cell phone numbers, get emails, request communication and demand it when things aren’t going well. In the world of muscle-debilitating diseases, what works in August may not work in November and everyone must be willing and ready to be flexible.
Sometimes people ask us how we manage it all. My response is simple: day by day, moment by moment. We don’t get too far ahead of ourselves and don’t spend time thinking about the should-haves/could-haves. We take each moment and deal with whatever we are faced with and then try to make the best of it. There are days we fail miserably, but that is okay. The next day brings a new day to try!
Jordan Lybrand lives in Alabama with her husband Josh, son Ethan and daughter Chloe. The family is very involved with MDA and hopes to raise awareness and funds to one day find a cure for Duchenne muscular dystrophy.
