I think, for me, one of the most frustrating aspects of interacting with parents that have kids with SMA is some of them sometimes have the compulsion to underestimate their child’s capabilities. Truthfully, for some of the children with more severe cases of Type I, this is uncharted territory. We cannot ignore the fact that there are children still dying because of SMA. That is the reality of this condition. At the same time, we simply cannot ignore those that are living. Yes, I said LIVING!!! We need to keep encouraging them to prove doctors wrong, about everything!
I feel this way about pretty much any disability, but parents need to realize that it is okay to fail at something. Of course, there is nothing to say they will fail, but if it happens, at least they tried. The best thing a parent can do for their child, is give that child the chance to pursue their interests and dreams. We have sports teams for people with disabilities, arts programs, honors programs, books clubs, and the list goes on. If your child is interested in something, you should never tell them they cannot do it. You should find a way to adapt the activity to their needs.
One of my biggest regrets is never having the chance to play sports. Sure, I couldn’t run. My reflexes were great, but my muscles often slowed them down. My parents told me I couldn’t do it. I couldn’t play sports. Kids would laugh at me. Kids would hate me. It would be a bad idea. Who knows if I’d have hit the ball in t-ball or done well in any other sport? The point is, I never got the chance to try. Yes, some of our interests are not ideal,but those of us with SMA are used to troubleshooting. We thrive at adapting things to our own needs. You might be surprised by our ingenuity.
People with disabilities, especially those of us born with disabilities, have grown up having to adapt in a world that is not overly accessible to us. Many of us are quite capable at navigating this inaccessible world, and coming up with innovative solutions, so that we can live independent and self-sufficient lives. One of the worst things a parent can tell their child is that they cannot do something, because of their disability. Sure, we often cannot do things the SAME WAY the average person does. We can, however, come up with our own way of doing things. We should also be encouraged to seek help, if we need it. There is zero shame in telling someone how to do something for you, if you cannot do it yourself. This is the cornerstone of consumer directed care, and can allow us to be independent, in our own homes, due to our ability to tell our PCAs how to help us take care of ourselves.
Additionally, I do not think that a child with a disability should be forced to feel bad if they lose some ability. SMA is a progressive muscle disease. We lose physical abilities. That is the nature of our disability. I spent years feeling bad about the prospect of going into a wheelchair, because I grew up being told that if I did I was giving up on myself and my body. I have to tell you, forcing myself to continue walking, standing, and moving, was hard on me. It was so difficult and sometimes painful. Sometimes, my body would just shut down on me, and I felt guilty for it. The truth is, you need to find a balance between the concept of not moving it so you lose it, and being realistic to your body’s limitations. I actually felt a lot of relief when I went into a wheelchair full time, because I was so tired. I was tired of falling, struggling to walk, and being left out of activities, because I did not have the stamina to keep up. As such, my wheelchair provided a huge sense of independence. I was finally able to keep up with everyone else!
What I think parents should do, is encourage your children to follow their dreams. We live in a society where we are automatically seen as less than, simply because we have a disability. We need to be encouraged to seek out whatever we would pursue if we did not have a disability. We are not less than. We are WHOLE, as we are. Maybe your child will never live on their own. That’s okay, if they do not want to or feel they cannot. They never may get married, have a family, or find the perfect job. However, they deserve a chance to pursue all of these things, if they want them. Parents of kids with SMA NEED to encourage them. Let them know they ARE capable or they at least deserve the chance to try to have the things in life they want – just like everyone else.
If your child did not have SMA, would you encourage them to go to college, move out on their own, and live their own lives? If you would, then you owe it to your child with SMA to give them the exact same opportunities. We never truly know if we can succeed, unless we try. If at first you don’t succeed, try again and never give up trying!
You have to understand that society is often more disabling to us, than our actual disability. SMA is not easy. Adapting to an inaccessible world is not easy. Society is going to try to bring them down. Of course, nothing worth doing in life is easy. We may have to make modifications, but we CAN find independence. We can find success. We can find love. We can have children. WE CAN have a future….in spite of SMA. We just need to be given the chance to try, and if we don’t make it, be there to hold our hand, and encourage us to try again!