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There Are Days My Son Says He Hates His Wheelchair, and That's OK

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I remember the day my son received his power wheelchair. Before that, Giovanni had a manual chair and relied on others to push him around school or on family outings. Giovanni was frustrated with his manual chair because he felt he had zero independence. He couldn’t come and go as he wanted. Giovanni had to ask someone else for help. So, when Giovanni received his power wheelchair, it was a life changer. He could come and go when he wanted to. Giovanni could reach counter tops by using the lift built into his chair. He loved to show off the reclining feature when watching movies and enjoyed driving through the snow for the first time. There was so much joy that came with this amazing piece of equipment and we were thrilled with the boost in self-confidence this green machine brought our little boy.

Fast forward two years and we, as parents, are still just as happy with this amazing piece of machinery — but there are days Giovanni voices his hatred for his chair. After many conversations, we finally understand what Giovanni was trying to communicate, and it is OK that he hates his chair sometimes.

Giovanni can walk short distances. He can go even further when using his walker, but he cannot walk all day, every day. His condition, Schwartz-Jampel syndrome, causes tight muscles and he has joints that cause him pain. He also becomes exhausted very quickly, and it became obvious we needed to look for a way to improve Giovanni’s quality of life, especially once he started school. Recently, Giovanni’s been begging to leave his wheelchair at home and use his walker more. It is not because he has miraculously healed and can walk without pain. It is because Giovanni desperately wants to run and walk without pain or exhaustion. He wants the choice to go to school equipment free. You see, it is not that he really hates his wheelchair — he is furious with his condition.

The first time Giovanni started crying and saying he hated his wheelchair, I took it literally. I felt sick to my stomach, like I had failed as a parent. My job as his mom is to make sure he is comfortable with his equipment so he can use it with confidence. We feel it is incredibly important that he learn how to be independent now, that way, when he goes to college or decides to live out on his own, he has developed his own way of completing tasks. We always tell Giovanni he can do anything anyone else can; we may just need to find a different way of doing it. You can imagine the failure I felt when he broke down begging us to leave the chair at home when we were going out for the day.

We talked about Giovanni’s wheelchair and why he was saying he hated it. After a while, it became apparent he didn’t really hate his wheelchair, but it was the only way he knew how to express his feelings. Giovanni is angry with the reality that he needs his wheelchair. He is tired of people looking at his wheelchair and not him. Giovanni is furious with his condition, which he feels put him in that chair. Once we discovered this is the reason Giovanni keeps repeating the phrase, “I hate my wheelchair,” we told him we understand why he hates his wheelchair and there are days we felt that way, too. We explained how completely natural it is for him to feel this way and just how proud we are of him. It is not easy for a 10-year-old boy to talk about such a complicated and emotional topic, but Giovanni took it upon himself to talk to us about it. He knew he needed to tell us, so we could help him understand his thoughts better. Maybe we have done a better job raising him than I had thought.

I am sure there are many children like our Giovanni out there. I am positive there are many parents out there like us worried they are failing at helping their child become comfortable with the equipment they need to be independent in their lives. My message to you is: please do not panic if your child tells you that they hate their wheelchair. Try not to feel like a you have completely failed in helping your child learn to be as independent in life as they possibly can be. Yes, “hate” seems like a strong word, but chances are your child is just trying to vocalize their anger with their condition. Giovanni was trying to tell us he was very angry he needs equipment when his friends do not, and I bet there are many children like Giovanni who feel that way. It may take many conversations to get to the root of the problem, like it did for us, and my best advice is to do more listening rather than speaking. Giovanni just needed us to listen, acknowledge, and validate his feelings.

My son sometimes hates his wheelchair, and that is OK. Our feelings are completely natural and we will continue to work through them as a family. Sometimes, it feels like we “hate” his wheelchair often. Sometimes, we go months without feeling that way. Those cycles of feelings are normal, too. The important thing is that we continue to talk about why we really say we hate the wheelchair.

Originally published: June 8, 2018
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