Friday, February 1, 2008

Update on the Wheelchair Saga (Also Known as "The Young and the Unmotorized")

Well, I thought I would update on the entire wheelchair controversy. We're still in wait mode on the funding, and so everything is on hold until that's settled. The good news is that our original therapist is back from maternity leave. Since she has actually met us a few times, she has more of a context for our family. I talked with her last week and she ended the conversation by saying, "I just don't want you to feel like I'm pushing this wheelchair on you."

AMEN! This I can work with! But, the push is still, really, to get the chair.

One big thing I'm noticing is that people are assuming that our daughter's "spark" will carry her through and make her able to do anything. To a degree, I believe that's true. But, in the course of the past year of mothering her, I've learned that that spark is also very able to help her dig in her heels are refuse to do even things she knows she can do! Her greatest disability is not arthrogryposis, it's "victim syndrome". The world owes her, and we should just pity her and do for her. At the risk of using the oldest parenting cliche in the history of parenthood, "When we give her an inch, she takes a mile."

For instance, we know that she can dress herself. She knows she can dress herself. Yet, many mornings she chooses to lay in bed and cry about having to dress herself because "it's just so too hard." After she finally realizes that her pity partying isn't going to move anybody, she puts her clothes on and crawls downstairs.

So, we're still really hesitant to do anything that's going to give her an easy way out before she's mastered other ways first. And, I still think this wheelchair is going to sit in our garage for the next 3 or 4 years.

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