Monday, December 17, 2007

More on the Wheelchair -- Will She Ever Stop? Probably Not!

I think the thing the bothers me most about this wheelchair controversy is that the medical professionals are assuming that they know what's best for our daughter not because they know her, but because of case studies and "research" done on the use of power chairs. However, they are blowing right past one aspect of arthrogryposis: the fact that you just don't know for certain how affected the muscles and joints are! While we know that her muscles and joints aren't working properly, we don't know what atrophy is from the arthrogryposis and what atrophy is from lying in a crib in an orphanage for 2 1/2 years. The fact of the matter is that she is significantly stronger than she was when we first adopted her. However, her Doctor is certain that all the atrophy she saw at the first visit was directly related to arthrogryposis! She totally dismissed the idea that any of it could be from life in an institution.

The other thing that's bothering me is that they are making it like she needs certain things in order to be whole. There is this idea that we need to provide the perfect house, the perfect van, the perfect wheelchair. No wonder pregnant people worry so much about if their child has a disability! I mean, I had no clue all the balls and chains that our culture had attached to the parents of special needs children until we adopted our youngest (mostly because we avoided the medical scene as much as possible --- something I'm so glad about now!).

So, here I am planning a future for her that includes following God where ever He leads, including marriage, higher education, and travel, and trying to decide when she should start learning to read, study Latin, and piano. Meanwhile, her doctor is talking about her needing "on going therapy for the rest of her life" in order to just function. Are we on two different planets or what? So, when does she get to be a kid? When does she get to be a student? An adult? A wife? A Mom? In between the "ongoing therapy sessions?"

In the end, I'm angry because they just keep trying to fix her, and I don't think she's broken! I think the we just need to assess where she's at and meet her there. If a manual chair works now, then use the manual chair. If she wants to crawl on the floor, let her crawl. If she wants to use the chair, let her use the chair, and if she wants to try to walk, help her walk. She's the one that's going to have to live life in her body, and, especially considering how well spoken she is, she lets us know what she needs!

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