Ella just finished fourth grade and will be entering her last year at elementary school in the fall. She loved fourth grade and learned so much. She’s a bit nervous for fifth grade, but she’s up to the challenge.
Ella has been at the same elementary school since kindergarten. She’s the only student in a wheelchair. Needless to say, everyone at her school knows who she is. They even held a fundraiser for her!
Ella is comfortable at her school and has been with the same assistant since kindergarten.
I was sitting on our deck the other night when Ella came out of the house and rolled up next to me. She didn’t say a word but had a faraway look in her eye. We sat in silence for a moment, then I asked if she was excited to be a fifth grader. She looked at me and said yes.
She turned her chair a bit to face me and asked, “What will it be like in junior high school when I start in sixth grade?” I asked her to be more specific — was she referring to classes, teachers, kids, activities, what?
She looked away and said “bullying.”
I asked her to clarify, and she told me about a YouTube video she saw in which junior high school kids bullied another kid. She said she was scared that she might be bullied because she is different, specifically because she is a person in a wheelchair.
I sat back for a moment and thought about what I should say. I reminded her that she will be with many of her friends from elementary school. And although she may be in a wheelchair, it doesn’t take away from the type of person she is. I told her to be herself and to try to make friends with new kids.
I also said that if anyone asks why she’s in a wheelchair, tell them the truth about the disease, that it affects the muscles but not the brain. I also told her to point out that she’s like any other kid at school.
Her eyes dropped a bit, and she didn’t say anything. I continued to say that she needs to make friends with people and that they, as true friends, would defend her if anybody started bullying her. She nodded her head in agreement.
I’ve lived with Ella for 10 years, and I sometimes forget that when she’s at school, she’s still in her wheelchair. In junior high, she’ll have to take the elevator to get from floor to floor, and she’ll have to have a special spot to roll up to during lunch. She’ll still need an assistant to help her physically. All of these things make her different than the average kid. Fifth grade at her elementary school will be her last year in a familiar place with familiar faces.
For Ella, the worries she has about a new school with new kids and teachers align with what other kids her age are feeling, albeit a year away. But because of her SMA, she has a set of worries that other kids don’t have to deal with. We hope that kids will be kind and see her for who she is — just a kid who happens to be in a wheelchair.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.
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