My oldest son has cerebral palsy. He does not have functional use of his arms and legs. He uses a wheelchair. He also uses a communication device with eye gaze. When he first started middle school, he had to choose an elective. He wanted to try band.
As his mom, I encourage him to do whatever he wants. But I was so overwhelmed with moving from elementary to middle school, I didn’t think I could handle figuring out band as well. So, I talked him into trying drama. He hated it!
During our annual Admission, Review and Dismissal meeting in 6th grade, we met with his educators and discussed electives. I shared with the team that he didn’t like drama. I also shared my hesitancy about band. Much to my surprise, the staff thought band was a great idea! We all recognized his physical limitations. However, we also realized the benefits of being in band.
Band students are usually a good group of kids. They become their own community. They do a lot of activities together. They look out for each other. This would be an elective that he could stay in until he graduates. So, with a bit of cautious optimism, we moved forward.
We met the band director a few days before school started. I was blown away! He was so willing to think outside the box. It was very clear how passionate he was about band. From that point, I knew we had made the right choice.
The director made sure my son was included in everything. We were even successful in making sure he went on the band trip to the roller-skating rink. My son got out on the floor and “skated” by using his power wheelchair.
During this year, he also learned the music notes and how to read music. The band director and I worked hard trying to find ways my son could independently use an instrument. We explored a head pointer, different apps, and different websites.
Unfortunately, this is the year COVID hit, so our efforts were halted. Even more unfortunate, we spent his 8th-grade year in remote learning. This really prevented us from really preparing for high school marching band.
Before high school started, I again doubted our decision to stay with band. After remote learning, I didn’t think I had the energy to again navigate the transition to high school while also figuring out band.
Yet again, I was surprised and blown away by the support of the high school band director. He clearly saw the vision. He knew the importance of inclusion and community. He understood the importance of really experiencing high school. He believed in the possibilities.
We just finished our first year of marching band season. It ended with a playoff football game in Lubbock—all the way from Fort Worth! There were a few obstacles in the beginning, surprisingly from the special education department. But with a lot of persistence, we prevailed. The band director is also determined that my son WILL play an instrument before he graduates!
Read about other parent experiences and their children’s successes and struggles as they transition to adulthood.
Children – with and without a disability – go to school to prepare for life: continued education, employment and independent living. Do you have a vision for your child’s future? Does your child’s Individualized Education Program or IEP move your child closer or farther from that vision?
Categories: Education & Schools