The Daughter Chronicles

Sunday, March 02, 2008

Therapists and their motives

This is Mia in her SWASH device. What, pray tell, is a SWASH device? Well, I'm not sure what the acronym stands for, but it's supposed to help Mia keep her legs from scissoring when she walks - in other words, to keep her legs from crossing midline, which screws up her ability to walk. Her physical therapist (that's him holding her) has been working with her for months to keep her legs straight. Her horse therapist (who is also a PT) suggested this device, so about a month ago we went to see an orthotics specialist and he let us take this home for a while to see if we liked it.

Well, we didn't. It helped keep her legs aligned, but didn't help stabilize her hips, which is why her legs scissor in the first place. Her PT has been trying to figure out a way to keep her hips steady, because she tends to raise her right hip when she steps, which screws her up. She also keeps her hips back, which means if she steps with her right leg she finds it almost impossible to move her left leg because there's too much weight on it. This causes her left knee to collapse, which doesn't do anyone any good. The SWASH is treating a symptom, in other words, and not the cause. Her horse therapist liked it a lot, but I don't think she was working Mia as hard as her home PT does. Plus, her school PT concurred that it wasn't stabilizing her hips all that well. Meanwhile, her OT (occupational therapist) said that when she sat with it on (it's supposed to help you sit up straight), she leaned against the waist belt. Mia can sit up without any help, even in a straight-backed chair with no arms. She does that quite often, and can even use her right arm to grasp things while she's sitting in the chair. Her problem is that whenever you give her any slight thing to lean on, she leans. So the fact that she had something to lean on while wearing the SWASH meant that she leaned.

We took it back this past week, and I told the orthotic guy that if she ever gets her hips stable and still scissors, we could use it, but until then, it was kind of pointless. He agreed, although he did think she should get an ankle-foot orthotic (AFO) for her right foot to keep it from pointing, which she does when she steps. She already has one on her left foot, as I've mentioned before, but her home PT doesn't think she needs one on her right, for the same reason he didn't like the SWASH - it doesn't address the problem with her hips. I have to bring up the right AFO with him, however, because it seems to enjoy some support from others, including her school PT.

The experience with the SWASH has made me think about her various therapists and why they recommend certain things. I'm certainly not saying that their motives are sinister - every therapist she's had has been very nice and has worked with her very well. However, I tend to trust her home PT more than her other therapists, because he's been working with her for almost five years and knows her very well. I also trust her home OT, for the same reason (she's only been with Mia for about three years, but my reasons are still applicable). So even if her other therapists recommend something, I'm not signing off on it unless her home therapists think it's a good idea (this holds for her speech therapist, too, but stuff dealing with speech isn't as "controversial," so it doesn't come up often). As her home PT and I discussed why he didn't really like the SWASH, I speculated on why her horse therapist liked it so much. Now, it seems like a good device for kids whose skills are a bit more advanced than Mia's. It also seemed like it did help her, but only marginally. When we take into consideration the cost of the device (I never asked what it was, but I'm so it's hefty) and the mild assistance, our choice was easy. But why did the horse therapist like it?

I have no idea, of course. I have a theory that says it's a bit easier for her - but I have no proof one way or the other. It's the same thing with getting a right AFO - would it help Mia, or make it easier for the therapists to work with her? Again, I don't know. Her home PT is convinced that an AFO on her right foot would only be a crutch - much like the SWASH would be, we decided - and when we took it off, she would revert to pointing her foot. What he wants is to teach her how to keep her hips stable, which will stop the foot from pointing. The orthotic guy is convinced that putting an AFO on her right foot will help stabilize her hips, and therefore, when we take it off, she won't have a need to point her foot. That's certainly possible.

Again, I don't know if the therapists want devices for her to make their lives easier. If they do, I'm sure it's completely unconscious on their part. Another theory I have is that they want to make Mia's life easier. This is certainly a possibility, as Mia has plenty of problems and I would love to make her life easier. However, now is the time to make her life difficult, in my mind. She doesn't complain about things, she works hard, she's relatively light (we got her weighed at the doctor's last week, and she's at 39 pounds), and she doesn't know any better, as she's only five and her brain isn't complex enough for her to grasp how disadvantaged she is. I would much rather her life be difficult now, when she's five, than when she's twenty-five. Then, she'll be much heavier, she'll know a lot more about what kind of issues she has, and it might be too late to teach her anything. So I don't want to give her any crutches now, because there's still a chance she can live somewhat independently. I don't want her relying on devices that help her out when there's still a chance that she'll learn how to do things herself.

The third possibility, of course, is that it's just a difference of opinion, which is fine. When that happens, I'm going to lean to her home PT. He tended to agree with me, in that he never makes things easy for Mia, and she usually rises to the challenge. She is struggling with walking, of course, because of her balance problems and the fact that it's more comfortable for her, ironically, when she twists to the left. So when he forces her right hip down, her right heel goes down on the ground, which is what we want, and she stands straight up and looks far more balanced than she has been - but of course, this upsets her. It's the way it has to be, though, so we're still working through that. If her other therapists want to make her life a little easier, I don't blame them - she's very cute and gets very upset when she works a lot, so it's easy to assist her. I can't resist the temptation occasionally! But that's the point - she can do quite a bit, and has to learn the rest, and making it easy for her isn't going to help her.

So the SWASH device is back with its owner, waiting for the next kid who needs one. Mia is still working hard, and maybe will get a new AFO soon. And we'll keep making her cry when she walks, because that means it's working!


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