Wednesday, August 3, 2011

Families of Special Needs Primer

As we continue to get comfortable in our special needs family skin, we realize that people are as uncomfortable with this as we have been from time to time. It is difficult to know what to say or not say sometimes. We thought we would do a brief primer that could be helpful, this is from our own experience.

-Kyle is a person.
This is obvious, but what we mean by this is he is not just defined by his disability. Of course his disease effects every part of his life but that isn't his essence. One of my worries over the past 9 years is no one would get to know Kyle as a person.
That has changed over the last few months with his notoriaty with his triathlon. I believe before that there wasn't much common ground between Kyle and others. People didn't know what to say or how to talk to him.
Getting to know Kyle or other disabled people is more difficult than getting to know the average person, but there is still a soul who has hopes, dreams, desires, and humor that shines through when given the chance.

-Questions aren't offensive cliche comments are.
Asking about Kyle isn't offensive at all. Asking questions about why he is in a wheelchair or about his disease shows us as the family that you are interested and care about him as a person.
The flipside of that when a stranger or aquantance makes a cliched statement such as "God won't give you more than you can handle." Those kind of comments are very offensive and extremely hurtful. It shows us that you don't care at all about our situation and are only concerned in fixing a problem that may or not be there.

-This isn't a curse.
Yes it is hard, yes this isn't the life that we would have chosen. But it isn't a curse. Sure we may be envious (at times) of the life of "normal" families who have the superkids of good grades and are good athletes, but in the end we wouldn't trade our lives for anyone elses. We celebrate and enjoy the small joys of life that many "normal" families will never understand.

-If you live in a bi-level we can't visit you
Having a son in a wheelchair means that we always ask "can we get a wheelchair into your house/gathering etc?" This is one of the top things on our mind. It never occured to us before Kyle was in a wheelchair and we don't expect others to think of that. But this is reality. We don't want to be rude and we want to go be with other people, but if it isn't handicapped accessible we can't go.

-We go at a slower speed.
Unfortunately we can't keep up with the normal schedule of life, family, fun, and faith. We can't do everything, and that is sometimes frustrating for us, as we realize we don't have the strength to do everything that we want to do. The physical toll of daily lifting and manuvering 91 pounds of Kyle is tiring. Constantly helping him go to the bathroom, and other basic every day functions drains us physically and mentally. With that it is hard to keep up with the rat race of the American life.

-Kyle doesn't function at his physical age.
This was a struggle for us, and we know it is a struggle for others. We can't treat him like a ten year old, he functions at about 4 years old. Now he suprises us many times and makes statements and comments that are beyond a four year old mentality but in general we have to be patient with him. Many misunderstandings and frustration both on Kyle's part and on others part comes from the idea of Kyle functioning at a higher level.

As we continue to learn and get more comfortable in how our specific family works, we hope we can help others understand, and support other families with special needs members.

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