Monday, July 26, 2010

Ataxia and daily living

Most people probably have never heard of ataxia. I had not before I had Abby.

The complex definition is: Ataxia: Wobbliness. Incoordination and unsteadiness due to the brain's failure to regulate the body's posture and regulate the strength and direction of limb movements. Ataxia is usually a consequence of disease in the brain, specifically in the cerebellum which lies beneath the back part of the cerebrum.

What is means for Abby is being unsturdy on her feet, falling regularly and flapping all day. I think the larger consequences of this are obvious. If your kid falls a lot... they get hurt A LOT. We've learned to help her accommodate. We've modified our house and her world as best we can. We minimize injury through helmets, safety equipment in the house, etc. But some things you just can't help.

There are smaller consequences. If you have trouble controlling your hand movements imagine how tough it is to eat... to draw... the do any difficult fine motor task. If your hands wobble and flap outside of your control imagine carrying a bowl of cereal from point A to point B. We have done things like weighted utensils and weighted sleeves but they only do so much. It is difficult. For now she doesn't care if she spills food on the floor at every meal or flaps food from her spoon to the wall. I do... but that's another story. Coloring inside the lines is not a necessary task for a three year old. But what happens when she's in school? If someone makes fun of her? When someone doesn't realize that she isn't being a brat?

Those are the little things that make our life just a little tougher. You wouldn't notice it from watching her briefly but it is a huge piece of her "puzzle". Hopefully time, maturity and strength will help. I hope so for her sake... and the sake of our rug. ;D

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