The Importance of Teaching Our Children to Self-advocate
I’ve had a conversation with my son Rowen, 13, that we continue to revisit, and I feel like it’s something all parents raising kids with Duchenne muscular dystrophy deal with on some level. How do we teach our children to advocate for themselves?
My three sons with Duchenne all go to different schools. Rowen, a seventh grader, attends a private Catholic school.
Every year at this time, the school hosts a fundraiser and then prom. As a result, the gym is unavailable for classes during those two weeks, so the kids go to the bowling alley during gym class. While many boys with Duchenne don’t participate in gym, including my oldest son, it’s Rowen’s favorite class, taught by his favorite teacher.
Bowling was not the problem. The alley is accessible, so we go often and have found a way to include Rowen that works for us.
Help was not the problem. Rowen has a one-on-one paraeducator who went with him.
The problem was that Rowen did not want to have to tell his para how to help him. After bowling, he was in tears because he just sat there and watched his friends and classmates bowl.
Usually, something like that would infuriate me. But Rowen’s para asked him if she could help him, and he told her he didn’t want to bowl. He did want to bowl — he just didn’t want to have to tell her what he needed.
I could have easily talked to the teacher and para before bowling and explained what they should do for Rowen, but Rowen was capable. And more than that, he needs to advocate for himself, and this is a perfect opportunity to practice.
We all want our children to self-advocate, but there is no how-to guide for teaching them. We talk with other parents and speak with our children, but mostly, we try something and hope it works. If it doesn’t, we try something else until we find a way that works.
Rowen is going bowling again, which gives us another opportunity to help him grow as a self-advocate. I explained to Rowen that he has the potential to go to college or work after high school, which will require him to take charge of his care. He is very interested in broadcasting, and I think he has the talent and skill necessary to do something in that area. However, Rowen will always need help.
I get that he doesn’t like it. I’m an independent person, and I know it would be hard to rely on others. However, we don’t have a choice. He needs to learn how to accept help, ask for it, and direct it.
Someday, we will be paying for caregivers. He will be the boss and they will be employees. He will need to be able to nicely tell his attendants what kind of help he needs and how they should provide it.
In the same way, his para is there to help him. But she has probably never bowled with a person with Duchenne before and needs to be told how to help him.
Our plan is to take a step toward self-advocacy. I will email Rowen’s teachers and para the process for bowling, but when they get to the bowling alley, it will be Rowen’s job to ask for the ball he wants and show his para where they keep the lighter balls. He will also have to ask her to carry his ball when it is his turn to bowl and show her how to help him put it on the ramp.
Self-advocacy may come naturally to some, but it is an area where Rowen needs growth. While Rowen’s friends are growing more independent, he needs more help. It comes down to our hope and desire that our boys can live in a college dorm or their own space someday and be active participants in their care.
We know that goals don’t always come to fruition, and with an unpredictable disease, anything can happen. The best we can do is take one situation at a time, learn from it, and help our sons grow into young men who can self-advocate and enjoy increasing levels of independence.
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