Friday, May 20, 2011

Della's Ninja Suit or What's Going On With Della: Part 2 of 4

This is Della wearing a SPIO suit which makes her look like a ninja...
 SPIO stands for Stabilizing Pressure Input Orthotics. The first time Della put on the full suit she took NINE steps BY HERSELF!

How does it work? I do not know. But here is my interpretation. Della seems to have a disconnect between her brain and her body. Most of us have a built in sense (like taste or smell) to know where our body parts are without having to look at them. Wikipedia says (very official, I know) "Proprioception: is the sense that indicates whether the body is moving with the required effort, as well as where the various parts of the body are located in relation to each other." When someone lacks this sense it is called "apraxia". This is from the Internet (I do realize that Internet with a capital "I" is not an official source but I lost the site I copied this from), "Apraxia is a disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked, even though:
  • The request or command is understood
  • They are willing to perform the task
  • The muscles needed to perform the task work properly
  • The task may have already been learned

Della's receptive language abilities are much higher than we had thought. We think she understands most of everything that we say to her. But she can't talk even though she tries. She can say some words like "ball" or "bubble" for example very clearly at times and then at other times she tries to say one of these words but then she hears herself making sounds that she knows aren't right and it frustrates her.

So what does the suit do? It really really tight. The shirt looks like it would fit a Cabbage Patch doll. But the fact that it is so tight means that her arms and legs and trunk and even her internal parts are constantly giving her brain input saying "Something is squeezing me." Kind of like wearing a wedding ring. I have been wearing it for 10 years but every day, usually several times, I think to myself "I am wearing something on my finger." Maybe Della waves her hands and shakes her head and grinds her teeth and who knows what else because she doesn't naturally get that input from the different parts of her body. So the suit eliminates her need to do those things almost entirely. It was pretty amazing to see her so calm.

The ways that this could help Della are limitless. Eating, walking, talking, playing, attention span, etc could potentially all be improved. You can read about some success stories on their website.
The suit is expensive, so we thought we would try the less expensive/trashy alternative, Ace Bandages...

Look at that face. Do I even need to tell you that it didn't work out so great?

1 comment:

Science Teacher Mommy said...

Stupid insurance. The suit should totally be covered. How is not walking an optional treatment???

And I heart Wikipedia.