Thursday, October 27, 2011

Did it work?

If you read last week's post, you're probably wondering if our 1700-mile roundtrip to the Anat Baniel Method Center in San Rafael was worth it.

Well, I think the answer is yes. Yes with a but.

See, Malachi did improve quite noticeably. No, he didn't achieve any of The Important Milestones, but his body was much looser and better organized. He was happier and wiggled a lot more. He arched his back in controlled ways, such as to reach the edge of his highchair tray, instead of reflexively. He ate and drank better. He manipulated objects with his hands much more fluidly, and he was more tolerant of putting weight on his hands and elbows. And the crowning achievement was his ability to bring his legs up and over to roll onto his side, instead of arching his whole backside in a crescent moon shape.


This isn't the greatest example, but it shows
Malachi trying to lift his legs while rolling onto his side.


Notice I said was. Already in the time we've been back, I haven't seen Malachi pull his legs over nearly as often or as easily. I can feel the gains he made slipping away and for all my talk about how expensive it was to go down there, I want to sell my house and go right back. I feel like a drug addict and Malachi's progress is my crack.

Which leads me to my biggest criticism of the Anat Baniel Method: it's ridiculously expensive. Don't get me wrong, Anat Baniel has come up with an amazing thing and she deserves to get rich because of it. Likewise, she and her practitioners are providing a benefit that outweighs any of the doctors that we've seen and — combined with our insurance — paid thousands to. But this is not covered by insurance; not even a little bit. Not to mention, the training for this method is far, far less time and money than the four years of medical school and years of residency those doctors are required to take. The appointments look like a combination of massage, acupressure and guided yoga, yet at even half their $200-plus fee* they would be more expensive than any of those proven (i.e. researched) therapies.

So what gives? I did ask one person there why the sessions were so expensive and he not only didn't have an answer for me but didn't realize how much they were. He told me to ask the accounts receivable person why they are so expensive. If I were still a reporter and this were some kind of newspaper story, I definitely would, but I'm fairly certain that she doesn't have any idea either. That is simply the intersection between how much they feel their expertise is worth and how much they feel desperate parents are willing to pay.

When I started out looking for alternative therapies for my son's condition I had no idea what to base my judgement on since none of those methods had any definitive science behind them. I decided to go with my gut instinct about which practitioners seemed to really care about Malachi and which were going through the motions. Perhaps not coincidentally, this also happened to be those practitioners who were willing to give our struggling family a discount on their fee. That is how we found ABM and I'm eternally grateful to our practitioner for being so generous that we stuck with it and for continuing to be so generous that we can afford to continue.

But we won't be able to afford another trip down to California for quite some time — if ever — and that's where we saw the big gains. Even if we went with a more experienced ABM practitioner here in town, it would cost $600 per month to do the same schedule we are doing with our own practitioner. That's just not going to happen.

So, sorry, Malachi. I guess you should have chosen richer parents.


*We paid per-session fees of $200 and $250 to our two skilled practitioners in San Rafael. Anat Baniel herself is considerably more expensive. Run-of-the-mill practitioners, such as one you may have in your town, are considerably less. Each session is 30-45 minutes.

19 comments:

  1. Anonymous2:18 PM

    Happy to hear that the trip achieved some of the anticipated goals. It is incredibly frustrating that we place "experts" on pedestals in our society and therefore merit paying them exorbitant fees to justify their expertise. I bet Malachi was flirting like crazy with his beautiful sparkly eyed smile!

    p.s. he chose his parents for their qualitative not quantitative traits!

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  2. Anonymous2:19 PM

    p.s. People should be paying YOU for your expertise in Malachi/Jaden parenting!

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  3. Ugh the paying for expertise thing always bothered me when hubby and I were lawyers. Each new crop does it because the ones ahead of them did. Hubby actually tried to have lower rates when he first started out, and it was counterintuitive. For all people's complaining about exorbitant legal fees, if you charge less than your competitors, they think it's because you suck.

    As for Malachi's progress, I don't know that it's any one method, but rather the intensity that you have when you do these types of things. Of course you saw gains when you were there, because that's all Malachi was focusing on. And then you get home, and you settle into your daily routine, and he is doing other things other than just intensive therapy. He has to learn how to incorporate what he's learned into his regular life. And sometimes I think it's easy to just fall back into bad habits when you're home, because it's what you're used to.

    I think the important thing is Malachi *showed* that he can roll to his side in a more appropriate manner, but it may take him a bit to do it spontaneously, because it's not what he's used to. It's not unlike when "normal" kids learn a new skill, and then may not do it for awhile. It's just that for our kids, the period of "not doing it for awhile" lasts a bit longer. I've never seen Julia learn to do something and then not do it again. But it does usually take her a bit in between learning and then continually doing it.

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  4. Thanks anonymous. I agree that we should get paid for our expertise. Let's all get paid for being awesome, shall we?

    Thanks Amy, I agree on all counts. The regression part is so hard though. And I also think the intensive thing is key, but it's hard for me to try a different kind of intensive therapy since I know this one works and I don't want to undo the good it's done. But what if there's something out there that would work better for him (and would be covered at least in part by insurance)?? What if?
    Also, that sucks about your husband's fees. I think the key is to have a market rate and then liberally apply discounts to people based on need/ability to pay. That way everybody is happy: clients feel like they are getting a good deal, lawyers feel like they are doing good and nobody is suspicious.

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  5. Anonymous1:55 AM

    I often come to your blog - I always seem to find something here that hits/caresses a nerve. "I feel like a drug addict and Malachi's progress is my crack". I totally know what you mean.
    Cristina

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  6. Crazy idea...what would it take for you to become a practitioner?

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  7. I have the same question as Andi, what does it take to become a practitioner? Either you, or maybe even me could do it. I mean, hell, I have the time.

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  8. Thank you, Cristina.

    You guys reached the same conclusion I did: If I believe it works and I believe we need to do it often and for years on end, wouldn't it make sense for me to get the training? But it wouldn't be easy. For one, the training is in 10 2-week segments throughout the year at a cost of $2,000 each. I have no idea where we would get $20,000 and I have no idea what this next year is going to bring in terms of flexibility to leave home for two weeks periodically.

    I dunno. I'm going to talk to my practitioner about it.

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  9. Kathy Shean-Jones3:25 PM

    Although I have not read this yet, I have heard good things about the following resource:
    Blessed with Autism by Christina Peck
    A Parents' Guide to Securing Financial Support for the treatment of Autism and Children with Special Needs

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  10. next time u vist the bay area let me know I am 20 yearold college student with CP. I have read your blog and i want to let u know that CP is not that bad .

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  11. I hope u do not take this the wrong way I was not trying to b mean

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  12. Thanks, Kathy, I'll check it out and see if I can find some money pots out there I've yet to sniff.

    Hi AZ, thanks for the offer and I totally wish we could have met you down there. I know CP isn't as bad for the people who live it as I might portray it here, it's just sometimes the need for me to do the "right" thing feels so overwhelming. As I said in a previous post, if I knew what it was going to be and there was nothing I could do to change it, it would be hard but in some ways it would be a lot easier because there wouldn't be near as many decisions for me to make.

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  13. Thought you might find some inspiration from this story. It made me feel a little more hopeful about my son's disabilites. . for today anyway.
    http://www.tampabay.com/news/humaninterest/tyler-sexton-wouldnt-let-cerebral-palsy-keep-him-from-becoming-a-medical/1198206

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  14. That is a fabulous story, Torey, thanks very much for sharing.

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  15. Hi Shasta,
    My daughter is 19 months old, also diagnosed with cp, doesn't eat solids (not even pureed food), no rolling over, sitting, standing, etc... I came across your blog when she was dx back in December. You introduced me to ABM and Kids beyond limits. By chapter 2, I was convinced that we needed to see Anat. You also inspired me to run a successful fund raiser and my daughter will receive ABM in early June. We saw someone here in Florida for two days and the results were amazing (pretty much what you described on this post). I cannot imagine what we will accomplish in June. Thank you for sharing your experiences. I do have one question. Did you stop PT and OT altogether?

    Thanks,
    Lauren
    Www.Iloveyoutoeternity.blogspot.com

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    1. Hi Lauren,

      I started a long post in response to this question but have yet to finish it. Your question has a complicated answer. The short version is that, yes, we did stop PT. We did speech therapy for a while but it was soon clear that wasn't really an issue for Malachi. The OT that we have now is really great, though he was trained in NDT which is the closest I've found to ABM in the traditional therapy world.

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  16. Shasta, Thank you for sharing your story. My 4 year old son has epilepsy and after having a seizure in May, he developed encephalopathy which caused him to have severe brain damage- he now has a condition called spastic quadriplegic, and while looking for information on what I can do help him- I ended up on the cerebral palsy page. My son does not have CP but his condition is very similar to what some people with CP have. By reading your blog I found out about the ABM which sounds very promising. I also read about another place in Philadelphia called The Institutes for the Achievement of Human Potential, I am wondering if you ever tried it? Or if you know somebody who did, and if so what was their experience like?
    I am still in shock about everything, I still can not believe a seizure can cause this much damage, and the doctors have painted such a bleak outlook for me. I strongly believe there is something I can do to help my son, sorry to go on and on, I am just......

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    Replies
    1. Hi Lillian,

      My understanding is that Institutes for Human Potential is based on the work of Glenn Domain, which I would describe as the other end of the spectrum from ABM in terms of offering variability and self-directed movement. However, I have only cursorily looked into it. I haven't talked with anyone who has tried it, but I imagine it is successful in certain ways or it wouldn't be a whole thing. ;)

      I understand how you are feeling. Make sure to take care of yourself too. I really mean that. (And am guilty of not doing so too.) More than anything, your child needs to get the message from you that he is OK as he is and that will take a lot of psychological work on your part to achieve. I know this because I'm not there yet either. :)

      I recommend A Stroke of Insight and You Will Dream New Dreams as books to help.

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  17. I charge €40 per hour, with 6 years teaching experience in the Feldenkrais Method (located in Austria, close to Switzerland border). Interesting to hear what Anat charges.

    However, I noticed your detailed description of Malachi's abilities in the 3rd paragraph of this article. That's a description most parents ... what do I say ... most PEOPLE would be completely incapable of. Malachi gave you quite a big learning there ... congratulations ! :-)

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