Maggie had to have x-rays taken yesterday. It was time to get updated films to see how bad her scoliosis is. We already know she has some, and it is time to see if the curve in her spine is increasing. This was requested/required by the doctor at California Children’s Services and it makes good sense to have the information. They requested it at least six months ago and when Maggie went back for her semi-annual checkup last week, they noted they never received it. “Oh,” I said sheepishly, “that’s because I never did it.” Maggie has so many appointments and requires so many tests that it is hard to gear up and follow through for something done on a prophylactic basis, even if it makes good sense.
I want to be compliant and get the docs what they need, but there are a couple of reasons for lack of motivation and the delay in getting these tests completed. For one thing, no matter what the x-rays show, Maggie is not a candidate for the scoliosis surgery. It is an amazing surgery and can make a huge difference in a kid’s life, but not Maggie. She could not handle the surgery; and even if she made it through that, the recovery would be impossible. Another factor in the delay: though not painful, getting x-rays done on Maggie is HARD WORK.
Yesterday was no exception.
I have written about this before. The difficulty is that the technicians have no idea how to accommodate her disabilities. Therefore, they simply ignore them and pretend everything is fine. Yesterday they told me Maggie was supposed to sit in a chair turned sideways with her back to the x-ray plate. English was not the first language for either of the two women dealing with us. They both spoke English fine, but their choice of phrases was both insistent and inartful.
The woman in charge said, Oh, I remember you Mom, you very helpful. That good. We need help with this girl.” You tell her to sit over there and stay still. She have to stay very still”
Me: “Did you hear that Maggie?”... (waits) “Ok, that’s just not going to happen. She cannot sit in that chair and she cannot stay still.”
X-ray tech: It’s ok, tell her she only have to sit there and stay still for a minute. It will take longer if we do it on the table.
Me: well, she’s right here. She can hear you perfectly fine, and I can tell her anything you want, but that’s not going to make it happen. We have to use the table
Maggie’s cerebral palsy causes motor impairment. She cannot walk or stand at all and cannot even sit up on her own, partly because her trunk is so weak.She falls over immediately and it frightens her terribly. In addition to that, or perhaps more specifically, she has neurological movement disorders including a combination of dystonia, chorea and athetosis (together known as choreoathetosis).These are three different types of involuntary movements.Suffice it to say Maggie is a girl on the move. Her body is never fully at rest unless she is in a very deep sleep. She cannot stop moving involuntarily and cannot use her motor functions in any meaningful way.*
None of this had any effect on this tech who has worked with her before.
Tech: "No you can hold her up, just one side and you tell her to keep her legs just like this." (what she was describing was completely impossible)
Me:” I cannot hold her up, hold her in position, keep her legs the way you want them, keep the lead aprons on her and me and not be in the picture. And I don’t think anyone is interested in my bones.”
Tech: Ignoring everything I said, “you tell her stay still.’
Me: “Maggie, stay still.” Maggie laughs uncontrollably and waves her arms around like crazy. I looked back at them “That is impossible. If one of you wants to try it, that's fine with me, but I am not willing to do that. (they didn't because they didn't want to be exposed to the radiation - I, however, did not get a choice.) Finally I said, "whatever time we would have saved has been wasted by this conversation.”
We used the table and no less than 6 times, the woman said how much easier it would have been in the chair. I ignored her five times. On the 6th one I said, impatiently – “forget the chair, the chair is impossible for her, that ship has sailed, let’s just finish this.” She still said it three more times.
When the last picture was taken I put Maggie back in the chair. Only when she was completely strapped in did they realize the last picture did not get the tailbone and they had to do it again. I told them “Maggie doesn’t have a tail bone” (which is true). They looked at each other as though they were trying to translate what I said. “Honestly, you can retake the picture, but you will not find a tailbone.”
The woman then said in perfect English, “then we REALLY need to get a picture.”
I smiled. Of course they were right, but it was fun to shake them out of their comfort zone a little bit. And it was fascinating how the English improved. The whole chair/table debate was O V E R.
*The fact that she is so good at using her talker is amazing and credit goes to her team of teachers and therapists who figured out how to harness this movement and impairment in a way that works for her.