Dealing with Challenges at School
In the summer of 1988, we moved our family to a new home. Mike was starting 6th grade, our son Daniel started 4th, and Allison entered 1st grade.
This was a transition for Mike coming from a school where the students knew him and were familiar with his limitations. The new school was in a rural area with one class per grade and no more than 20 students in each grade level.
A school without stairs was an added bonus
We felt this was a good and positive move for each one of our children. The fact that the school building was one floor without steps to climb was an added bonus.
Soon into the school year, Mike experienced some bullying from a few of his new classmates. At this point, Mike’s disease progressed and it caused him to have an awkward gait when he walked.
Bullying from classmates
His new classmates began to pick on him and make fun of him because of this. Mike, being a proud and stubborn guy, never complained about this. On one occasion coming home on the bus, he was physically pushed and hit so it became apparent there was a problem to be resolved.
My husband and I went in to see the principal that next morning. She assured us that Mike and the two boys would be called in and talked to that day. When Mike came home and explained that all three had detention for fighting, we questioned that punishment.
Both boys received four days of detention and Mike got two days because he fought back. We felt this was unjust, but Mike insisted he wanted to take the detention. He wanted to be treated like everyone else.
Mike's bullies became his friends
A few months later Mike went into the hospital for surgery. He returned to school with casts on both legs and needed a wheelchair for six weeks.
The same two boys with who Mike had the fight volunteered and took care of his needs in the wheelchair. They were now his friends all the way through high school.
Protecting our son was not always the best option
At this time, Mike began guitar lessons. He was a serious student and practiced every day. Within a year, he began lessons with an electric guitar also.
Mike gained a lot of confidence with his musical abilities and added piano lessons. It was so good to hear Mike play with the church choir where he earned the respect and confidence of all the choir members. His music brought him a lot of joy and pride.
As a parent, we learned to allow Mike to make his own decisions because our protective reaction was not in his best interest. This lesson was tested many times during his life living with the restrictions this disease brings.
We learned to step back and encourage whatever his decisions are and be available if needed.
Learning to advocate for himself
Soon Mike entered high school and that brought many new and sometimes difficult experiences. Now he was doing a lot more walking while changing classes and carrying books. This proved to be too taxing on his strength.
We did advocate for his needs by having his schedule adjusted. It was impressive to watch his mature decisions and ability to advocate for himself.
Which emotional aspect of SMA do you find most difficult?