People will talk about our kids. Little kids will ask them questions. Adults will ask them questions. Some will just point or stare. Cute little kids in wheelchairs are hard to resist. Teaching your child how to handle these interactions with strangers will make these interactions a lot less stressful, and even fun.
My daughter just had a girl ask her why she is in a wheelchair. She answered, “Because I have weak muscles.” The girl replied, “Well, at least you aren’t disabled.” Finding humor in that, my daughter said, “Lucky me.” Sometimes you have to take what is said with a grain of salt. It doesn’t pay to get upset with people when they do not know any better. It is so much easier to take a deep breath and be kind. Explain why they are in a wheelchair, introduce them, and ask if they have any questions.
We participate in a lot of nonprofit groups in our area for kids with special needs. It is so much fun to go into businesses, schools, city buildings, and spread awareness. Through these interactions, Leah has learned how to be courteous and also has learned how to be her own advocate. She has shown people that she is not just a kid in a wheelchair. That she is no different than any other fifth-grade girl.
We have found that most people do not mean to offend by pointing or staring. They just do not know any better or they do not know how to approach the subject. By being gracious and offering them information, we have formed many new friendships. Most of the time, it just takes a side comment like, “I gave up many years ago trying to keep up with her,” when someone sees her zooming by to open up the communication. We have learned that if we act like it’s no big deal others will start acting like it’s no big deal and will open up and ask questions.
I challenge you to go out and interact with the people who point, stare, or whisper. Smile and say hi. Make a comment about your adorable child zooming off in their wheelchair. Teach them about SMA and help them understand. It will help make your child more comfortable in their shell if they know how to handle these situations with graciousness and a smile.
It is hard. I cannot lie. It is hard dealing with SMA. It is hard not knowing at all what your child is going through. It is hard “not getting it” over and over again. We are so committed to our kids, but we cannot always help them ourselves.
I like to think we’re a well-oiled machine in our house every morning, but I may be delusional. Every morning is started with the best intentions, which quickly evaporate into controlled chaos, and ends with a sprint through the door, praying we didn’t forget anything.