Wednesday, August 17, 2016

It's all therapy all the time

Yesterday Y. had her physical therapy evaluation. (Finally. It's been a saga getting to this point.) What was fun was the evaluator was the same person who did H.'s PT evaluation four years ago. We caught up on how H. was doing and she was thrilled with H's abilities. It all reminded me of how well I click with this woman. That's always a good thing. 

Y. had a very positive evaluation. Both therapists (a second was called in to consult) were amazed and astounded at Y.'s function and mobility. She is doing things that neither of them expected she should be able to do given her diagnosis and tightness in her muscles. Much of that is due solely to Y.'s iron resolve to do what she wants to do. The therapist also mentioned that the single best therapy for most children is working on keeping up with siblings. This is also what she said four years ago when I had H. in and we jointly decided that PT wasn't necessary at that point, that merely living in her new family and playing with her new siblings should be sufficient. We could always revisit that if it seemed necessary.

For Y., while keeping up with the masses is great, we are also going to do 8 sessions of PT. The therapist said that much of that will be training me to do what Y. needs on an ongoing basis. I already have some stretches and exercises that she taught me to do, so we will be building those into our day. The assistive devices question also seems to be resolved. The correct AFO's have been decided on and ordered and... it seems that Y. can look forward to a future WITHOUT having to use crutches. One of the exercises I have is to help improve her balance, which is the only reason she currently needs them. Both therapists watched her walk with them and agreed that they were not truly necessary at all. Building stamina and balance should do the trick. 

Oh, her other big news is that the therapist thought that water therapy would be excellent for her, so she is now on the waiting list. Y. has a love of water and swimming that knows no bounds and she will love that. If I could find an adaptive swim team, I could totally see her being an amazing competitor.

Having spent an hour chatting with the therapist also confirmed my thoughts about R. Like H., she is a child that needs time to mature in the use of her body. In some ways she is stronger than H. was, but also has some other goofy things going on, like a real lack of proprioception (the awareness of ones own body) and a lack of vestibular awareness (the knowledge of where ones body is in space and how to move it around). Any unexpected sensation (ie anything other than standing and sitting) causes R. to react with a screech. Think very high-pitched seagull. Thus, doing things that other children do naturally are things that J. and I have to aid her to do. We have seen improvements, such as her ability to go downstairs, alternating feet. It is still not automatic, but she can now do it without screeching. 

So for this child, it seems that every waking moment is therapy because every waking moment holds the possibility of doing something outside her comfort zone. The beach house this weekend was a cornucopia of experiences. For instance, first we had to get to the beach. See this picture? I took it from the beach. What you see is a path going up and down sand dunes and when it enters the trees are dozens of stairs going up to the top of that bluff where the house is. Then, at the house is an outdoor faucet for washing off the sand. There was sand (screech!) and dune grass (screech!) in bare feet (screech!) up and down hills (screech!) to get to the water (screech!). The screeching isn't necessarily unhappy, it's just the noise that comes out when something surprises her and feels different.

We helped her dig in the sand for a while, which has its own sensory experiences, but then she wanted to fill up her bucket. Now, if you have ever swum in one of the great lakes, you know that the water can be cold, especially Lake Michigan. Usually it is so cold that I don't go in, not being a huge fan of water and really not a fan of cold water. There is no way I would make a child who wasn't excited about water go in. But, this past weekend the water was warm. I thought it was warm. I was able to sit in the water. Yes, it was that warm. So, figuring if I could tolerate the water (which if you know me is pretty surprising), R. could, too. She wasn't so sure at first. Or second. Or third.

Eventually, though, she spent nearly an hour sitting and standing in the water and playing. And no screeching. Well, except in happiness when she would hit someone with that little water blaster she is holding. We showed her once how to make it work and she had it figured out immediately. When she wants to do something, she is surprisingly competent. And therein lies an entire novel...


Carla said...

Once R has experienced something does the screeching stop or does it continue until the sensation is commonplace? For example, did she screech every time you went down to the beach?

thecurryseven said...

No, thankfully, the screeching stops once the initial surprise wears off. Usually, once we reach that point, she will voluntarily seek out the same experience on her own. If there is too much time that elapses between exposures, though, we move back to square one. So, the first time each day of going down the dunes was surprising, but then she was fine.


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