Thursday, October 18, 2007

Step Stools vs. Power Chairs

Today I am pondering the wisdom of giving my 3-year-old daughter a 300lb power wheelchair.

We brought our beautiful little girl home from an orphanage almost a year ago, when she was two years old. She's bright, active, overly sensitive, temperamental, opinionated, extremely funny, and unable to bend her arms, lift her arms very high or use her legs to walk.

We knew when we adopted her that she would use a wheelchair. What we didn't know was how expensive they were (we weren't thinking power wheelchair), how large they are, and how soon doctors would recommend we get her one. We had planned to wait until she was a little older, when she needed more independence. Knowing all this beforehand wouldn't have changed anything, because she's our daughter and was from the moment God led us to her. We just have had a different time table than the time table laid out by the local children's hospital.

She's been having a blast crawling and scooting through our house, learning to climb the steps, climbing into and out of boxes. At the orphanage she pretty much sat in her crib or sat on a couch. Here she's got loads of freedom. She's just growing by leaps and bounds, even trying to stand and talking about walking -- something she wasn't supposed to ever be able to do and something I think she'd stop doing if she was going everywhere in her wheelchair.

She loves driving the practice chair through the halls of children's hospital, though. I love watching her maneuver it (not to mention the looks of surprise on the faces of the people she's nearly knocked over...).

However, I keep coming back to the same thought: the hospital is specifically set up to accommodate a child using a huge power wheelchair. The rest of our society is not, not to mention our van nor our house. She can't drive it up to the sink to brush her teeth because there's no space for her to do that. She can't elevate it to reach a cup, because we don't have the space for this chair. She can't use it to access her clothes in her dresser because we don't have space for a lift on our stairs. So, this independence it gives her, what is that? I mean I'm not dropping her off at the mall to go shopping, am I? She can't use it at friends houses, she can't take it into a classroom without endangering her peers. So, when will she use it?

Looking at it from that perspective, it seems ridiculous for us to look at replacing our van with a new one and an expensive lift, all for a tool she won't really use for several years. Yet, if we don't have the van set up, we don't have a place to store it (except the garage) and we simply can't use it at home. I'm not even certain the sidewalk around our neighborhood is in good enough repair for us to use it to take a walk.

Then I look at the cost of this wheelchair -- over $30,000. Today our insurance company denied the request to cover it. We expected this, but what I didn't expect was my reaction to it. I could actually see their point. Basically they told us they couldn't even start to review her file because they didn't' have enough evidence of her disability (arthrogryposis) and there was no evidence that we had tried any other options besides getting her the chair.

Well, truly they're right. From the start I've felt pushed into this by one of her doctors. When children are born in America with this condition apparently they are fitted for power chairs at 18 months (about the time they start walking). So, our daughter is "behind" and every day she goes without the chair she's "missing out".

But I just don't see that. She's crawling everywhere, and is significantly stronger and more flexible than when we adopted her. She's learning to dress her self and to climb onto things. She needs more space for us to put step stools up for her. Then she can climb up to the sink, climb into her bed, climb up onto the couch, etc. And, well, she's not going anywhere without us, so she really doesn't need much independence in public....

I just keep wondering if we aren't making something that's not complicated into something that is. How much intervention does an exceptional child need? I mean, my oldest daughter was never supposed to walk either, and despite living in an orphanage in an impoverished country, with absolutely NO medical intervention, she taught herself how to walk. It was her inability to get around that motivated her to do so in the first place. If she had had a power wheelchair and a perfectly controlled environment would she have walked? I don't know, but I highly doubt it.

So, perhaps I'm just crazy but I'm really beginning to think that what we need is a good orthopedic stroller, a bunch of sturdy step stools and more time.


sandra mae said...

hi deb- I love checking your blog... especially seeing the pictures of your kiddos. jsut wanted to let you know you have Readers out there in cyberspace!

gingerswindow said...

You are crazy! Crazy people follow God instead of doctors, orthopaedists,etc., when warranted. So, stay crazy and I know things will work out just fine. They always have.

Greg said...

I got major deja vu reading this :)

Our son is a quad congenital amputee. His therapist kind of pushed us into wheelchair training and getting a power wheelchair too. And unfortunately we kind of let her.

He just wasn't interested - it's not that he *couldn't* operate a joystick (far from it) but he had no desire to be, in his mind, confined to a chair. And we had to almost laugh at the "mobility" theme - he's incredibly mobile around the house, and the few limitations (like going up or down stairs) are not going to be helped by a wheelchair (which, as you say, won't fit in the house anyway).

Our neighborhood isn't all that walking safe even for ambulatory folks, and like you say, we're not going to be dropping him off at the mall by himself anytime soon (he's two!).

So anyway, I'm with ya!