The 1-on-1 Coaching team often hears from parents whose children are being bullied. Sometimes these kids have disabilities and are perceived as being “different” by the other students in their class. I understand the pain that parents feel in this situation on a very personal level. When my daughter was 5 years old, she was also getting bullied at school. At the age of two, she was diagnosed with a rare muscle disease that fell under the muscular dystrophy umbrella. She was teased for walking funny, being too slow, and not able being to run. Luckily, she was a pretty tough little girl and her command of language left some of her peers not knowing what hit them. In other words, what she didn’t have in physical strength, she made up for verbally.
As her Mom, I found the situation at school devastating. This was kindergarten. What would the rest of her school years be like? Equally disconcerting was the fact that she was consciously using her disability to her advantage, feigning weakness in academy award winning style to get people to do things for her. I knew it was going to be a long year.
I had some great experiences going to a progressive college that was designed for people who had disabilities with wheelchair accessibility. Many college students there had to adjust to life in a wheelchair after being paralyzed in serious accidents. I learned a great deal about the importance of independence from them, which helped with parenting my daughter.
One afternoon, after hearing how my daughter had a girl carry her art project back to class, I sat her down for the hardest talk I would ever have with her. I explained to her that she would not ever be allowed to use her disability to manipulate people. She would have to work harder than other people physically. That she would feel pain more intensely due to the lack of muscle mass, and would probably have less energy. But, I also told her that it was her job to learn how to compensate for it and do things for herself. It was the longest walk down the stairs from her room I ever had. I felt like the cruelest human being, and the harshest mother on the planet.
My daughter didn’t understand why the kids in her class were being so mean to her. Fortunately, she had a great teacher who supported us while we came up with a plan. My daughter made it clear that she wanted to talk to the class about her muscle disease.
See also: Advocating WITH Your Child: Talking to My Daughter’s Classmates about Her Disability, by Anna Stewart.
We reviewed the facts of her muscle disease, which was a rare diagnosis, and briefly went over what she would say. I was proud of her invincible attitude. She appeared completely unfazed by the entire situation. As for me, I vacillated between fear and sadness. I think I could feel my heart for the next few days, it was so heavy.
That day, I went with her to school and sat in on their class meeting first thing in the morning. She stood up in front of the class and told them that she had a rare muscle disease, so she couldn’t run, or walk fast. She asked them to stop making fun of her, because she couldn’t help it. I can’t remember all of their questions. I do know that they asked her if she was going to die. She replied with a very strong “No!” Someone asked if they could “catch her muscle disease,” to which she again said “no” — after conferring with me. Finally, someone asked how she found out she had it. She showed them the scar on her thigh. She told the class that the surgeon took a piece of muscle out and sent it all around until someone figured out what was wrong. The last question asked was if she missed the muscle they took, and she said she didn't.
See also: Does Your Child Have a Disability or Disorder? Using Books to Talk about It, by Anna Stewart.
In hind site, I was so impressed by the thoughtfulness and respect the class showed her. They were curious but kind while she spoke. From that time on, her classmates stuck up for her. On the playground, if someone from another class called her a “slow-poke” one of her classmates would yell, “Leave her alone — she has a muscle disease!” And they left her alone.
As parents, we are limited in how we can help our children deal with a disability. My daughter was a “Just the facts” kind of kid who would not be deterred until she understood the whole picture. The grades that followed did not always protect her from ridicule. But she was never passive. At times she would feel victimized, but she stood her ground. What worked for us was:
- Being direct and factual about the disability.
- Allowing her to address it in her own way.
- Supporting her while acknowledging the pain of being bullied — and helping her through it.
Most importantly, with all the unsolicited advice we get from family, friends, and professionals, we know our child better than anyone else. Trust your intuition. My daughter is now 24, a college graduate, a successful writer, and very independent. I’m happy to report that she — and I — both survived her school years!