Monday, October 10, 2011

A note regarding Setbacks

I wrote about E's setbacks a few posts ago. Well, her Feldenkrais practitioner Mr. Keith had a few words for me. Since writing that post, Elena has been more active, and her gait is looking better. Maybe with more exercise (different exercise), she's looser? I don't know. When we see setbacks, I'm sure fatigue has a lot to do with it, as does general growing pains (physical, social, academical, etc.) and I'm sure I could use more patience to deal with my kids. (Don't we all?)

Keith put this very eloquently--he acts similarly to how he writes. Maybe you all can identify with my frustrations, and glean some pearls of wisdom from his letter too.

It does not surprise me if her gait has lost some grace. And I think there may be several factors at play.

1) She may be sitting in a chair more for longer periods of time, which is a flexed hip and knee situation. That has a tendency to limit even more the ability to straighten up. It happens to everybody, but matters more when there is a slowness of the nervous system's ability to tell the muscles to relax and lengthen. In working with Elena it was always remarkable how the tone (in her feet especially) would be very general and high. After a few minutes of gentle movement and some attention to them, they became more lively and differentiated in their responsiveness.
It is not just a matter of lengthening the tissues, as in stretching, but of keeping the nervous system actively "listening" to what is going on there. The longer the shoes are on without a break, and the longer she sits not needing to feel and regulate the actions of her legs, the more they lose some finesse. Again, that happens with all of us, but the effects are exaggerated and take more concerted attention to recover from in a situation like Elena's.

2) She may be growing in her bones, and the muscles and connective tissue tend to lag behind the bone growth and adapt to it, so there can be periods of exaggeration of the shortness. Once again, the remedy for this is activity that (gently, in my opinion) moves her through the ranges, repeatedly, and with attention to what is happening, not forcing. Infants spend a lot of time paying attention to themselves… its their full time job. Kids moving out into the world start shifting that learning attention outward. For a kid in Elena's position, she needs this continuous exploration of herself more than other kids her age, because the basic physical learning that normally happens earlier is an on-going project for her. She definitely can continue to learn better control and finesse in her feet, legs, pelvis and low back to improve her gait, but it just doesn't happen as fast. The basic learning and adapting ability is there, but it is as if both the incoming sensation signals, and the outgoing motor control signals are muted. So it takes more time. Beyond that, it takes helping her to stay in a situation which she can experience things multiple times. Infants do that naturally, because they are exploring within the limits that they have… When they can't yet roll over, they are exploring all the things that lead to being able to roll over. Elena has passed by some of the basics for walking, because she could, and because her intelligence and maturity outpaced her physical learning. The games we play together in the Feldenkrais sessions get her to explore those fundamentals over and over and over again, so her nervous system can make sense out of what is happening through those distorted signals.

It is great to hear she likes the water. With the right kind of guidance, and given the skill and strength she has in her upper body, it could be an experience of grace and lightness hard to match on land in a world of balancing on the legs and falling. Those kinds of experiences build up the soul, not just the body of a young person.

One more thing about what Elena was getting this summer from the Feldenkrais sessions: acceptance. I built the activities around her abilities and her intentions. (It sounds like her teacher understands this too.) It was a place where she was pretty much queen of the roost, even though I was putting her into all sorts of situations that required her to pay attention to what she was doing, and do it over and over and over again. That's a rare combination that creates a potent learning situation.

The "holding on so tight" you mention is an example of her "passing by" the explorations that she needs to learn to be on her feet. Because she can find other ways of getting where she wants to go, and because her interests and ambitions have grown beyond working out the fundamentals like an infant or toddler does, just taking away the support is not going to lead to her getting more graceful on her feet. She needs the guidance (and a situation in which she is enjoying it) to put in the "study time" on that part of the development she missed.

4 comments:

Krystle said...

He sounds awesome!
I feel like so much of that can be applied to Peyton, thank you for posting!

Anonymous said...

HI AMY
SOME OF OF MR. KEITH SAID ABOUT ELENA MY PILATES LADY SAID THE SAME THING.. IT;S SO SIMILAR.. I WISH I KNOW HOW I COULD ACCESS THIS TIME OF THERAPY.. I DO NOT DRIVE SO IT MAKES IT HARD.. BUT I WOULD LOVE TO CHECK IT OUT! DO YOU KNOW HOW I COULD GO ABOUT DOING THAT?

Steph said...

I've been reading your blog off and on for a year or so. You seem to critical and so ungrateful for everything your daughter has accomplished. Her CP could be so much more severe and she would never be able to walk. Who cares about her gate? The fact that her brain is fully functional is a huge blessing. My child has CP and his brain is never going to be fully functional. If his only obstical was a funny gate and getting tired easily, I would be doing back flips.

Amy said...

Hi Amy,
I very much enjoyed this post. While Emma is currently out of commission for walking due to the work we are doing ABR and her hip subluxation, I still found so much of what you shared helpful. While Emma is much more physically involved than Elena, I gained some insight into some of Emma's issues through what Mr. Keith shared. How nice to find someone, a therapist, who is that thoughtful. I have to beg for eval sheets on Emma, looking for anything useful or helpful about her progress, lack thereof, and/or even setbacks (as I often perceived them). Anyway, thanks so much.

Plus, please tell Elena that I shared the swimming videos with Emma. I will quote Emma here, "Wow, Elena can swim!" Believe me it's hard to impress Emma.