Wednesday, November 28, 2012

What I Should Have Said to My Son's Physical and Occupational Therapists



Every time I venture back into the Physical Therapy (PT) World, I reemerge scratching my head and muttering to myself.

Don't get me wrong — I think physical therapists are very kind and smart and have a great deal of knowledge and experience about cerebral palsy. That is why I keep going back every few months. Just to make sure I'm not getting too far into the Anat Baniel Method (ABM) World and missing some key piece of information. But by and large I find physical therapy philosophies to be fundamentally flawed when dealing with a person with a brain disorder not a muscle disorder.

In October we had a PT appointment during which Malachi was forced to sit upright with as little assistance as possible as he attempted to manipulate objects with his hands. Every few seconds, Malachi would nearly topple over and as a result he became more frustrated, closed and defensive in both his movements and his attitude. My overall impression was of somebody trying to teach him Swedish by making him memorize long sentences phonetically. It was clear to me that by the end of such a frustrating and bewildering venture, Malachi might be able to approximate Swedish but it would never be functionally useful to him because he would have never learned what the words meant or been allowed to order them into sentences that expressed what he wanted to say.

Yesterday we had an appointment with a new PT and OT at a very well-regarded local hospital. (This was an appointment I made some months ago, likely during an "ohmygodamIcompletelymessinghimup?" late-night stress-a-thon.) Because it was a new appointment, they did very little work with Malachi but even so, it was like we were talking about a different disorder.

For example, I told the PT that Malachi's primary difficulty was in understanding and controlling his spine. The PT corrected me, saying "his trunk." Well, yes, his trunk, I guess that's true. But the vast majority of the power and control in your trunk comes from your back i.e. your spine and the manipulation of those large, powerful muscles around it. In my (albeit limited) experience, most PTs ignore the back and concentrate on the tummy muscles, like a bodybuilder worried about his six-pack. But look at any typical baby who first learns to walk and you will see his tummy poofed out, his lumbar curved and his legs far apart. This is a very stable and easy position. If you could somehow force that baby to walk with his butt tucked under and his tummy rigid, he would not be pleased and he would probably fall down a lot.

During another part of yesterday's appointment, the OT had a few objects for Malachi to manipulate. When he would be unsuccessful after a few seconds, she would grab his hand and "help" him with the task. While he was happier that the ring was on the stick, or whatever it was, I could tell that he had learned approximately nothing about what it would take to put it there — except perhaps that he needed her hand on his to make the magic thing happen.

At another point, she was watching him struggle with a iPhone toddler puzzle and remarked at how good he was at figuring out ways around his motor difficulties. "What a smart boy," she beamed at me. "You can't teach that sort of problem solving." I feel so sad at that remark because that's just not true. But how could I possibly explain that in a few short seconds?

Perhaps I should have said this: ABM is all about teaching children that they have a choice to make, empowering their choice (even if we think it's the wrong one), and encouraging them to continually search for better alternatives. The self-confidence, limitless growth and sense of security that results simply cannot bloom in a child who is forced to do things the "correct" way (ways that to him seem dangerous or incomprehensible or else he would already be doing them), or given tasks that are so far beyond his ability as to only teach him that he is hopelessly incapable or dependent on others for success.




9 comments:

  1. Is it possible to ask the PT about where your son is now vs where she thinks he would have been with conventional PT or OT? Ir is that even possible?

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    1. That I can't ask that is quite literally the bane of my existence. If anyone knew with any amount of certainty what Malachi can be expected to do given the injury he has, I wouldn't have to torture myself wondering whether what I'm doing is helping and how much.
      I hope you don't think I'm being sarcastic when I say that the traditional PTs and doctors we see are of high enough caliber that they know not to give us predictions. (I have heard horror stories from others about ignorant doctors who presume to know what's going on — the field of brain plasticity is so new and uncertain that it is not yet possible to know what a baby with a brain injury will or won't be able to do.)
      The physical therapist told us that Malachi has a "classic" presentation for a child with damage in the extrapyramidal region. However, many times during the appointment, Malachi's abilities seemed to surprise them. They would think he didn't have a pincher reflex, or that he couldn't open his hand or that he wouldn't be able to dissociate his legs and hips, etc., etc. but he show them in his own way and in his own time.
      My impression from others with older children on the ABM route is that predictions are more easily made by doctors as kids get older — and more easily disproved by children using ABM.

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  2. Stick to your instincts, Shasta. They are bound to be correct, because you're so tuned in to what Malachi needs for HIMSELF, and no one else.

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    1. Thanks, Nancy! I wish thoughts were clearly marked "instinct" as they waft through my brain. ;)

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  3. I love your ABM updates. In my opinion most therapists leave a lot to be desired, anyway.

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  4. Hey! :) I love this post! I have CP too, and I have never done ABM specifically, but your last sentence really struck me! I can so relate to that. I remember when I was about six years old, my PT was trying to force me to get up by going into a half kneel and pushing off on one knee, and I just couldn't do it...I didn't feel stable. Stubborn by nature, I never listened to her, and I get up in my own way, pushing off with both hands. My mom realized that it works for me, so she never forced me to change simply because it wasn't technically "correct."

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  5. Hey! That's awesome! I LOVE hearing what adults with CP think about this stuff. It makes so much sense to me intellectually, but you guys are the ones who really live it. Thanks for chiming in!

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  6. Shasta you need to move to CA lol but seriously

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  7. REally loved the way you have explained things - its surprising how much information is NOT out there. I've read this book by Glenn Doman 'What to do about your brain-injured child' and he too addresses the fact that you can't treat the symptoms but the brain - reteach it to make the neural pathways and thus learn to function.

    Anat Baniel does interest me - but the cost of it all! We've tried the Scotson Technique (TST) - based in Kent, UK, done a form of therasuit therapy - that also did work for my child. Was lucky to find hyperbaric oxygen at a nominal rate at a not-for-profit multisclerosis centre and, as the studies have said, we did find that 5 months after the oxygen therapy we could see marked changes. I've tried other things too, but these 3 have shown remarked changes, albeit we have a long way to go. And as you said hard to attribute a change to any particular methodology, but I would say since I didnt do everything altogether, and each of the above showed some remarkable improvements both in postural control and cognitive abilities.

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