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My Son's Demons
By Carol, Guest Writer |Email| |
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My son lives with his own personal demon. He has lived with it his entire life, but we didn’t find out about it until he was in Kindergarten. He had a wonderful teacher who had been teaching Kindergarten for 30 years and she really cared about her students, and got to know them all almost as well as we parents know them. She noticed that something was wrong within the first two weeks of school and at the end of the second month she had called us in special so that we could talk to her about what she had noticed. |
We spent many months taking him back and forth to Children’s Mercy Hospital seeing Occupational Therapists and Physical Therapists and having tests run and basically putting the poor child through a living hell. Finally, in February of the next year, we were given an official diagnosis. He has a motor disfunction. It is called , or some people call it Developmental Co-ordination Disorder. No matter what you call it, it is an awful thing.
The brain forms pathways as we learn things and the more we use those new pathways, the more solid they become. In children (and adults) with this disorder, those pathways form, but even if they are used regularly, they deteriorate and often disappear completely. What that means is that just because my son could do three digit multiplication quite well today, he probably won’t be able to do it tomorrow, and I will have to teach him how to do it all over again. He remembers that he could do it, he just can’t remember how to do it and it frustrates him.
People with Developmental Dyspraxia also have coordination difficulties and problems with both gross and fine motor skills. There is so much awfulness involved with this disorder, it is horrible.
Every day is a struggle for people living with DCD, and for their family it can be heartbreaking. Just getting my son to write his name is a 15 minute long ordeal, and the letters are uneven, a strange mix of upper and lowercase and mostly unreadable. He makes letters and numbers backward not because he is stupid, but because the signals get messed up going from his brain to his hand. It’s not his fault, he can’t help the way he is anymore than he can help being a boy.
I watch him struggle and fight to do things that we “normal” people take for granted, and it causes me physical pain. I hate to see him go through this. It’s not fair that innocent children have to suffer. Not from anything. Kids should be allowed to be kids and not have to get sick. They shouldn’t have to worry about cancer and brain tumors and DCD. They should be allowed to play and have fun and just be themselves. When they have to fight to do even the most simple things, it makes me want to gather them all up and just hold them. I wish that I could take away all the hurt and all the struggle for my son. If there was something I could do to make things easier for him, I would do whatever it was in a heartbeat. I am filled with anguish whenever I see him struggle to butter a piece of toast. When he can’t get his jeans buttoned or his shoes tied, I just want to cry. He tries so hard, and his body sometimes simply will not do what he wants it to do.
This disorder is one of the reasons why I am so reluctant to let him go back to public school. He will be picked on, I’m sure, because he is clumsy, he has glasses, and his hair is so long he can sit on it. He is also highly emotional and many children are like sharks. Once they sense the weakness, they will exploit it until the weaker child implodes. I don't want to put my son through that. His life is difficult enough without having to deal with the kind of things other kids will hand him. On the other hand, I cannot protect him forever. At some point I will have to turn him loose and let him fly on his own wobbly wings.
I just hope the cats don't eat him.
- Carol -
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