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This is a picture of India
People are all different. They come in different colors and sizes; they come with different personalities, thoughts, behaviors, values and priorities and so on. However, the differences do not affect certain categories, for example there are no people who carry their heart in their leg instead of their chest cavity and even though we have different blood types, we all circulate blood in our veins and not something else. We’re not THAT different.
Disabled people are all different too, their disabilities are different and their disabilities affect their life and their family’s life in different ways. However, the differences do not affect certain categories. There are no people who are capable of growing a new limb in place of an amputated limb, and there are also no people who are able to grow new brain cells to replace the ones that died. We’re not that different.
There is currently no cure for cerebral palsy or for any condition that’s caused by permanent damage to parts of the central nervous system anywhere in the world. (There’s nothing wrong with the word ‘damage’, as long as it refers to the damaged parts only and not to the whole brain, worse yet the whole person!) None of these people can be cured regardless of how different they otherwise are. As cruel as this sounds, not knowing or understanding this unfortunate fact hinders acceptance and acts as an obstacle on the way forward. Acceptance of disability is the first step towards successfully addressing any difficulties that we encounter on the way. While people with damage to their central nervous system can not be cured, they are well able to learn, and they are well able to learn a lot more than we think. Life can be just as full and happy for anyone with a disability; they just need to be given the chance to do their best, without comparison to an able person’s best. We’re all different.
Acceptance is, of course, inherently difficult, and it is just the first step on the path (we can’t solve all problems of all disability just by merely accepting disabled people). The shock of finding out that our child has a permanent disability is horrific:
“It’s like a dream, a surreal event, which isn’t happening to me. I’m in disbelief, then in despair; I have no idea how am I going to deal with this and it’s terrifying.”
“I always held out for a cure. I have always hoped that within her younger years something would come together that would make a massive difference, not a pill, but a way of retraining her brain and muscles in order for her to be able to function well.
As long as I knew I did everything I could, I felt like it took a way form the debilitating feeling of having a disabled child.” (Donnie’s words)
That’s how they get you. You’re desperate, terrified, and hoping the impossible. You’re incredibly vulnerable. You just became the perfect target.
You become a target of the quacks the moment you’re in this situation. The doctor told you that there is no cure, but that can not be possible; there must be something out there that the doctor doesn’t know about or something new in a different country, just something, anything that could help your baby, no matter how little. It doesn’t matter how far away it is or how much it costs. You must try it.
Therefore, quack therapies of all sorts thrive. They promise the impossible, which is either a cure or at least some level of improved abilities or functions. Miracle cures and stories of miracle cures are everywhere; they are circulated on the internet and in every possible media and by hearsay. These stories are often very catching and emotional, describing parents’ journeys on their way to finding the therapy, often in a faraway country that made the very much sought after positive changes in their child’s condition.
None of these stories are true. The vendors and promoters of quack therapies do not base their claims on evidence as they do not have such. They use various cunning methods and refined techniques to convince all but the most skeptic that their therapies have a firm scientific base, or that they use the latest, cutting-edge scientific methods (they often put images of neurons and such on their web pages to create a sciencey look). Sometimes they base their claims on “ancient wisdom”, as if cures for brain damage were available at ancient times (?). They use fake or real titles (MD, Prof.) to increase their credibility (some titles are real as health professionals do become quacks sometimes for a number of reasons, mainly for the huge income quackery generates). They describe the way their therapy “works” using medical language and/or popular breakthrough-science key words like “stem cells”. They provide very convincing testimonials from their previous customers. It’s extremely difficult, if not impossible for the desperate parent not to get hooked on, regardless of how intelligent or educated they are, those aren’t even factors; all parents are uniformly holding onto the hope.
Besides the sites of millions of vendors on the internet we also find thousands of parent discussion forums, Facebook pages, TV talk shows, a wide range of magazine and newspaper articles and good old hearsay through which anyone’s very last doubts are eliminated that the miracle cure will work. These stories become possible because human thinking is biased by nature. Confirmation bias, wishful thinking, selective thinking, post hoc fallacy and such change the way we perceive and think, and when they come together with despair, the debilitating feeling of having a disabled child and desire to hold onto anything that offers the slightest hope, we get what we get: deception.
How does choosing quack therapies “judge” the parents? It doesn’t. The professionals who take their time to tell the parents the truth (that currently, in 2010, it isn’t possible to replace damaged parts of the central nervous system) know the above detailed working mechanism of popular quackery and would never even dream of blaming the parents for it. The parents aren’t doing anything wrong; they’re trying to help their child, which is the most respectable thing in the world. They are the victims, not the offenders. The “judgment” goes to the quack doctors who sell their useless treatment, offer false hope, and sell snake oil.
If your GP, neurologist or other professional take their time to tell you the truth, they’re doing that because they’re your friend, not your enemy. It’s not because of their difficulties with “getting along” with you that they would like to you know what’s real and what’s not, it’s because you’re in need of help and they want to help you. While you are the one who knows what’s best for your child, there is no way for you to bring informed decisions if all your research brought you results that came from the snake oil vendors and from deceived parents’ testimonials. Reliable information is scarce and you may never encounter any of it. This has nothing to do with you being ‘intelligent’ or not, being a ‘good parent’ or not or how much you love your child. You may have never been shown that there’s an other side of the story; you may have been lead to believe that brains heal and all you need to do is make an ‘informed’ decision of which therapy to choose for the ‘healing’. Those options are not real options, they are fake since you can’t win no matter which one you choose. Protecting you from quacks is a huge help, even if it doesn’t look like that first.
You may first feel that they’re taking your hope away. They’re not. The hope they’re supposedly taking away was never even there, there was only deception, lies and fraud. Offering people false hope and quack cures when there is no cure is unethical and potentially damaging to families in multiple ways: the ‘cure’ may be the administration of a dangerous substance that can cause serious health problems; the financial strain may become unbearable; the time spent on travelling to the other side of the moon for the therapy takes time away from the family and takes your child’s time away from living and learning.
Any time and money spent would be justified if the therapy had just the slightest potential to do the fraction of what they claim. Some parents well understand that there’s no proof that the therapy will work, neither do they require such; they expect that a miracle will happen because miracles do happen. That is true, and miracles, of course, happen. But for a miracle to happen you don’t need to buy into fraud first. If a miracle is meant to happen, it will happen without the assistance of dishonest quack doctors, and it can happen in your backyard, without the need to travel to China , Germany
Please accept your children for whoever they are. Your children are beautiful, they are sweet and they’re perfect. A ‘fix’ is not bound to come soon, not in their lifetime. If you feel you would do anything for your children, then make them feel secure, loved, accepted, and teach them the best way you can. The real hope is in the fact that every living human being can learn, provided that appropriate methods are used for teaching that work for them and help them learn. These methods differ greatly by individual and finding them and implementing them is not the easiest thing in the world, but if we do, the difference made to the disabled person’s life will be much more wonderful than anything the quacks ever dared to offer. The miracle is the ability of all human beings to overcome everything that’s been thrown at them through love and the hard work of their teachers and themselves. That way they will be more likely to make the best of what they have and what they’ve learnt and live a full and happy life.
An incomplete list of snake oil therapies (for cerebral palsy or conditions of the central nervous system; some of these may be legitimate for other conditions, for example HBOT is approved for the treatment of decompression sickness) contains Hyperbaric Oxygen Therapy, Magnetic Therapy, G-therapy, CranioSacral Therapy, Reiki, Homeopathy, Naturopathy, Ayurvedic medicine, herbs, diets, overpriced vitamins marketed for cerebral palsy, ABR, and the greatest offender stem cell therapy in any form whether it’s using embryonic, fetal, bone marrow, cord blood or rabbit cells, whether it’s injecting these into the bloodstream, spinal cord or brain (via drilling holes in the skull first…), and many, many more.
Stay away if you can.
This is perfectly written!! As a teacher I saw so many families falling victim to snake oil vendors and quack medicine promising grand claims of cures and miracles, and I longed to be able to say everything you just said. Instead I was forced to walk a tightrope between providing appropriate information and "remaining sensitive to the beliefs and decisions of the family". What broke my heart was watching the families be filled with false hopes over and over again only to blame themselves when it failed for "doing it wrong", "not doing it soon enough", or "not choosing the right one".
ReplyDeleteLike Bethany said. Feeling grateful for blogging!
ReplyDeleteThat photo of India gives me a sad feeling. For her and her parents.
Barbara
I told Donnie not to blame himslef. He did what he thought was best at that time, he did whatever "took away from the debilitating feeling of having a disabled child". Nobody ever warned him to be careful with the quacks :-(
ReplyDeleteCertainly I hope Donnie does not weigh himself down with regret. With that thought, I realize this is the other side of the coin to the feeling one attempts for trying everything offered. Barbara
ReplyDeleteAs a parent you do the best you can given what you know at the time. When you know better, you do better. Donnie was doing what he was told by someone with supposed authority would benefit his daughter - he was doing what he believed to be the best. Now that he is aware of just how many quacks will take advantage of parents and sell false hopes and snake oil cures, he is doing better for India. The only blame or regrets belong to those who are defrauding parents and taking advantage of their desire to do anything to help their children.
ReplyDeleteBethany,
ReplyDeleteI wholeheartedly agree. The way you see this is exactly the way I see it, too.
I would like parents to have access to trustworthy information and 'know better' before they get sucked in, so they don't have to run these useless rounds, be taken advantage of and pay the price.
Oh, that beautiful child under that magnet. Wow. I share Barbara's sad feeling about the photo, and yet it's such an expression of love and dedication too...
ReplyDeleteThough I do have the bloggy outlet, I find myself "walking the tightrope" (as Bethany put it) on my blog as well. I appreciate your forthright approach! Quackery is a tough subject to engage, a situation that has remained remarkably consistent over the years. I've recently been reading some history of quackery in the US, and the methods the purveyors used and the public responses to them are not all that different from what happens today.
JoyMama,
ReplyDeleteI read your post about snake oil and I recommend it to everyone else: http://elvis-sightings.blogspot.com/2010/03/oil-of-snake.html
I too was "walking the tightrope" for 15 years now, since I first observed the harm quackery does in a family of a child with cp. It was called 'cellular therapy' back then, offered in the same places as stem cell is offered now, with freakishly identical claims, only the substance in the syringe changed (did it?) to a more modern-sounding version to hook today's new parents on (who unfortunately rarely get the chance to learn anything from the lessons of the ones who walked the same path years before them). You're right, quackery remains consistent.
I started this 'forthright approach' just a mere 2 months ago, it just felt the right thing to do. I know I'm fighting with a huge monster and it's only so much I can do for all these people but whoever is interested to see the other side of the coin is welcome to read this article and the future ones still in the making.
V - what about Anat Baniel Method
ReplyDeleteHearing a LOT about this lately...
Would Love love love your thoughts...
dw
Debbie,
ReplyDeleteI was planning to write about this later, but since you asked I'm going to try to answer the best I can:
The ABM is a revamped, remarketed version of good old Feldenkrais. The Feldenkrais method had ran its course, and there’s no better way to sell it again then inserting a lovely, enthusiastic lady into the picture-Anat Baniel.
This method isn’t harmful. There’s no risk of cancer like there is with the injection of stem cells. That said, it’s extremely limited in what it can really do.
If the therapy table of the Anat Baniel practitioner is the single only one place where a child gets get out of the wheelchair/stroller and wiggle around at least a bit, then the opportunity to move is going to make a difference for that child. It’s not the ridiculous, pseudo-scientific explanations that aim to support the method that are making a change; it’s that the child is finally doing what children usually ought to do: move.
Note that ABM also has anti-aging claims: that’s a red flag, a no.1 quackery indicator. Pseudoscience sells well, that’s all, and that is basically what the ABM is all about, a bunch of well-marketed woo-based products claiming “it helps the brain right itself”, which is, of course, baloney, but without much harm.
If a child with cp goes to a Conductive Ed school, their day is planned and organized around constant, active movement (made fun and play!). They don’t get to sit around like a sack of potatoes for the most of their day, so a little extra wiggly woo on an ABM table is not going to make any difference. If your child is free to move around at home (and get the help they need to be able to do that), that is already waaaay superior to any kind of manipulation that an ABM practitioner can do.
The Anat Baniel method may be a small consolation if there’s no better. What they say about traditional physiotherapy (that it makes stiff children stiffer therefore discourages children from moving) is simply not true.
Thank you kindly as always...I am one of those parents that holds onto the HOPE when and where ever I can get it. Your forth right blog postings are worth a million bucks and as a bonus brings us closer to the plain and simple...acceptance. Acceptance and hard work those are our outlets these days :) So glad to have discovered the world of CE.
ReplyDeletedw
Never loose the HOPE. Just know where the real hope is. It's in the ability of every human being to learn. It's inside you, your daughter, your family, your love for each other. X
ReplyDeleteJust curious what do you think about the program at the Institutes for the Achievement of Human Potential?
ReplyDeleteI am planning to post about this later but for now I’m so burnt out from writing about quack therapies! My next post will about nice things!
ReplyDeleteI’ve read Glenn Doman’s book ‘What to do about your brain injured child’. I understand that this method was born out of all good intentions and theories that initially made sense. However, there’s a disconnect between the initial theory—that the injury is in the brain so we should do something to the brain instead of just rubbing arms and legs—and the therapy methods they worked out for this purpose because we have no idea what these practices are doing to the brain. If you claim to do anything to the brain, you have to provide proof that it does what you claim.
Nobody has any proofs in the field of brain injury and there’s no evidence-based therapy, but as long as one relies on axiomatic truths like ‘moving may prevent pain and deformities caused by immobility’ and that ‘practicing functions may result in improved functions’ as therapy services like PT and OT do, or claiming something so basic that teaching may result in learning or doing things may cause learning things as Conductive Ed does, they’re safe because their claims comply with observations of virtually anybody. These are identical to claims that teaching to play the piano may result in learning to play the piano and that practicing to play may result in better play. Demanding proofs for these is possible of course (and there are always candidates) but I say such demands are rather simplistic and I’d question the need for them. But the moment an abstract claim comes to the picture, like the suggestion that patterning improves brain function and the improved brain function will result in better creeping, or crawling, or walking—there is no direct connection and therefore there is a need to provide proof. The claim is abstract and we don’t know if pattering—if it improves brain function—results in better piano playing too, or if it’s more effective at resulting in better piano playing than practicing to play is. Until there’s proof for such our best guess is that it isn’t; thus so far, better creeping, crawling and walking can be achieved via actual creeping, crawling and walking, and not via patterning.
'...out of all good intentions and theories that initially made sense.'
ReplyDeleteMaybe the former, but the latter was never the case.
By the way, did you catch the following?
http://www.disabilityscoop.com/2010/06/07/cp-stem-cells-china/8909/
Andrew
Andrew,
ReplyDeletethank you for this comment; I stand corrected and change "that initially made sense" to "that initially looked like they made sense".
I'm saying this because of the following story that is included in Doman's book I mentioned: In the 40s, Doman was a PT and he was doing therapy with a guy with stroke. The guy's daughter, who (this is emphasized in the story) was not an educated person, came in and asked if her father's injury was in his brain or no. When she was replied yes, she asked why he (Doman) was rubbing his arms and legs then.
While we know exactly what's wrong with this, it completely makes sense for someone who just found out about brain injury; it also seems to make sense for everyone who hasn't been taught otherwise. This dead end mindset has survived and is still the most prevalent today, hence the popularity of brain-treatments like HBOT, stem cells, Doman-Delacato, magnets and so on. No matter where they look, the parents will find not one, but many of these therapy claims, and the more they read the more it will sink in: "the problem is in the brain, so treat the brain".
I don’t know the parents who have managed to avoid the distraction, and if there are some, how did they do it? Most parents I know are out chasing the brain treatments, even if they happen to bring their child to CE. Many parents who have been involved in CE for years say that "CE is just one of the many therapies we do" and off they go to the hyperbaric next door. They're even told that CE 'works better' when it's combined with HBOT, and that's exactly what they believe.
How many parents grasped the fundamental approach change to disability that we're supposed to teach? I don't know. I seem to have met the ones only for whom the "Peto method" is just like the "Anat Baniel method": one on the list. The brain treatment pushers are wrong but are we right? How did we so badly fail to convey our message?
I am a parent of a beautiful 4 yr old with cerebral palsy, developmental delay and blindness. I have been holding on to hope almost since day one of her premature birth. I have been told stem cells will help my daughter see. I was almost hoaxed into flying to the Domincan Republic for treatment, but it was too shady. The doctor who was in CA wouldn't meet us first and of course the money had to be wired up front. It is all so tempting as "we would do anything" for our children. Your blog is a reminder to me to beware as just today I was making phone calls and telling my husband we have to try everything that we can't look back and think we didn't do anything to help her. Although I'm sure as most of you out there you've done everything humanly possible. I have to be honest, I will continue to do so because I'm not ready to give up yet. I know it is in my mind and maybe I just need to go out of state, somewhere with that great reputation, somewhere that I can be persuaded that they have the "cure". Then I will turn it down because I am not going to be foolish, I just have to feel like I'm trying.
ReplyDeleteAnonymous,
ReplyDeleteplease keep holding on to hope. The aim of this blog is not to convince parents to 'give up', it's the contrary: it's to make them realize where real hope is as opposed to no real hope just deception and empty promises.
The real hope lies in teaching and learning, which every living human being--no matter how injured--is capable to do, and which makes the difference between an incapacitated disabled person who has learnt to rely on others for everything and a the happy disabled person who has learnt how to live their life to the fullest.
Parents who feel they want to 'try everything', often really do end up trying everything, except the one thing that really helps--teaching and learning--because they don't know that that's what really helps. The quack therapies do absolutely nothing, just suck the families' time, money, energy and faith and prevent them from living the life the whole family, including the disabled child, deserves. This is good for the vendors of quack therapies (they remain in business), but devastating to the families with disabled people, who rarely realize what a horrible industry they're being sucked in by until it's too late, they're burnt out and have lost all faith.
I think it's worth to try and warn families before this happens, and it's worth to try and show them which way to go.
Thank you. I agree with you about therapy and working with your child. I am well known at my daughters school because I want input on everything she does and information so we can continue it at home. I have witnessed first hand at her school the parents who just leave it up to the teachers. The progress will never come to it's full potential. I think I just need to find the happy medium, keep up the work and try to find the magic answer in my spare time, lol.
ReplyDeleteHi, Im so grateful that my search led me to your blog.I can sense your frustration and yet I feel your passion and love for your daughter. My first-born 11 yr old son has CP. He was born with my umbilical cord wrapped around his neck and body. We blame it on my OB coz she induced me 3x since I wasnt dilating during my 18 hours of exruciating labor, only for her to decide to give me an emergency c-section after there were signs of fetal distress of which the nurses discovered when I sreamed at them when I felt my son do summersaults in my tummy (there was no fetal monitor attached to my tummy).Sad to say here in the Philippines its almost impossible to sue doctors. My son seemed normal at birth, he even got a high Apgar score. But we noticed when he was about 15 months old that he would tiptoe on his right foot and his right hand was always closed. His MRI showed an "ïnfarc" in the part of his brain that controls motor skills of his right extremities. Other than that, everythings okay. We've been making him go through Physical Therapy since then, but in the past three years we stopped his therapy during school days so he could join the sports clubs in his school. Now inspite of his akward movements and lack of agility, he is part of the Grade 5 Soccer Varsity Team. His right hand, fingers, foot and leg are still spastic, so we are still looking for cures. But in the meantime, we let him "shine" in an environment where everyone else functions normally. Luckily in his Catholic School, bullying is strictly prohibited, so he was spared that nightmare. But he did get teased about his "Nemo-hand" a couple of times, but not to a point of him crying about it.... When he was still a baby, the neurologist told us that the only treatment effective was Botox therapy. We never tried it for fear that it may do more harm. I was curious about Stem Cell therapy at first until I read about the risks. But his orthopedic surgeon might do corretive surgery on his foot because his ankle is beginning to caving-in... Im sure you go through emotional rollercoasters dealing with your daughter's condition. I keep on going back to the day I was in labor, how I could have prevented his CP if I had chosen a better OB or hospital,.. why God would allow my otherwise perfect child to get CP...what else could I do to cure or improve his condition...etc... But now I tell myself to look at the "glass half full", it couldve been worse- last December in a mall here in Manila I saw about a dozen children & adults with CP being wheelchaired by volunteer caregivers. I asked them who those patients were. They were orphans, all abandoned as babies and as children. They were being cared for by an orphanage called "Tahanan na Walang Hagdanan" (House with No Stairs).I couldnt contain myself and burst into tears knowing that these children & adults had parents who just gave up on them. And I was moved how these volunteers were so dedicated to caring for them. After meeting those orphans with CP, for the first time in 11 years I forgave myself for whatever I could have done wrong to cause my sons CP. I told myself at least I did not abandon my son, that Im here for him 100% a solid mom, compared to those parents who abandoned their children. I also thank God that my husband has been such a loving and caring dad to our son. Today, my son played in his second inter-school soccer tournament. He wasnt as agile as his teammates, he would limp when he runs, and his right hand was obviously limp, but he had the brightest biggest smile on his face. That smile gives me hope that he will get better, that he will have a normal or better yet-a great life ahead... because he knows he's still a lucky boy because he has parents who love and care for him. Im so sure your daughter feels that way about you. So lets all keep hoping, and searching, and caring, and loving..... :-)
ReplyDelete