My daughter, Vaeda Zo was born June 6, 2011. She was diagnosed with Hemiplegic Cerebral Palsy in her first year of life. Hemiplegia is similar to a stroke and in Vaeda's case the left side of her body was affected. As I learned about Cerebral Palsy what gave me hope that my daughter would someday experience running, was our brains have a tremendous ability to create new connections (neuroplasticity).
The MRI of our daughter Vaeda's brain shows that she has scar tissue on the right hemisphere, which we were told occurred as she suffered a stroke while in the womb. This brain injury means the movement on her left side is affected. Neural connections to use her left arm, hand and leg haven't been well formed during early development. Movement with attention creates these connections elsewhere in the brain so that the loss of functioning returns. In fact children with Cerebral Palsy and other developmental delays who get the help they need, have "extra"ordinary brains as they have mapped functioning to new areas of their brains to overcome their "dis-ability."
We began getting Osteopathic treatment locally right away at McKinnon Health, which immediately afterwards she began moving her left arm. Our osteopath told us about the Anat Baniel Method (ABM), and recommended the book Kid's Beyond Limits by Anat Baniel. After reading the book, we decided to take a week long trip to Halifax to get an intensive 10 lessons when Vaeda was about a year and a half old. After those lessons Vaeda began to sit up evenly without leaning to the left. After that success, I decided to take the ABM training program to become a practitioner in 2013 when Vaeda turned two years old.
At two, she had another intensive 8 lessons. At that time, her vocabulary increased and she was a very expressive chatty happy girl. She was scooting on her bum to move around. Vaeda wasn't able to crawl and was delayed walking. We advocated for increased physiotherapy and occupational therapy at the QEH from 1 appointment a month to 1 appointment every week. She progressed well during this time and began walking holding on to a walker or someone's hand. We decided to take Vaeda to the ABM Centre in California just after she turned 3 years old and she began walking on her own. After only 3 lessons with one of the best ABM practitioners in the world, instead of her left leg being out on an angle to support herself in standing as she had developed with physiotherapy, her alignment had changed to have her leg under her hips as it was on the right. Since then she has improved at a tremendous rate as her weight bearing shifted and her balance improved. She now runs, and jumps unassisted! Her left arm continues to improve as well, and she uses her arm quite well. The functioning of her left hand continues to improve, and I believe will continue to improve as I work with her as I complete my training.
We sold our house in West Royalty to downsize to a mobile home in the country to afford the training which is $35,000 USD in tuition over 4 years. I've made 8 trips to California for a period of 10 days at a time since 2013 to complete my basic training and in June of this year graduated as a Certified ABM Practitioner. I will continue on with the ABM Children's Mastery Program this fall that will require 4 more trips to California. The airfare and accommodation has taken the total investment to well over $60,000. The ABM lessons aren't currently covered by insurance companies, so the lessons Vaeda received were all out of pocket and cost close to $2500. Getting insurance companies to cover this type of neuro rehabilitation by extended health plans is something I will continue to advocate for in Canada. The advances of neuroscience support this type of rehabilitation and the outcomes have surpassed traditional methods.
The decision to take the training came from a deep desire as a mother to help my own child to have the same chances for development as any other child...and a deep passion to help other children get the same benefit and opportunities that Vaeda has. This experience has forever changed the course of my life for the better as it showed me how helping others has made such a difference in their lives that it has brought meaning to my own.
Traditional rehabilitation therapy vs. neuroscience research
7/28/2015 10:40:00 PM
There are some oversights when it comes to traditional rehabilitation therapies when compared to advances in neuroscience research. The idea of focusing on muscles instead of the brain, doing mindless repetitions to create "muscle memory" will only provide limited outcomes.
The whole idea of thinking in terms of muscle memory instead of the brain is backwards. There is no question that to be able to move, we need our muscles, and that stronger muscles provide us with the possibility for stronger, more powerful movement and stamina.
However, muscles do not know what to do on their own. It is the brain that “tells” the muscles what to do—when to contract and when to let go—through the signals it sends to the muscles. And in order for the brain to know what signals to send to our muscles, it has to first “know” that the muscles are there to be used and learn how to coordinate the different muscle groups successfully. The brain needs a rich variety of experiences from which it creates the necessary connections and patterns of our movements, also known as “mapping” in the brain. When a child has cerebral palsy and not muscular dystrophy - they have nothing wrong with their muscles, they have a brain injury and need to learn their muscles exist. That happens through self exploration using approximation and variation not repetition.
Brain research has shown that movement done automatically does not create new connections in the brain, but rather it grooves in more deeply existing brain patterns (those stubborn limitations, making the limitations and poorly organized movement more pronounced instead of introducing proper function). However, the moment we bring attention to what we feel as we do any movement, there is an immediate, dramatic increase in the number of new connections associated with the areas of body that we are moving.
Research shows that movement done automatically creates little or no new connections in the brain:
“[T]he variable determining whether or not the brain changes is . . . the attentional state of the animal.” Schwartz J, Begley S. 2002, rpnt 2003.
The Mind and the Brain: Neuroplasticity and the Power of Mental Force. New York: HarperCollins. Recanzone G. H, Merzenich MM, Jenkins WM, et al. 1992.
Topographic reorganization of the hand representation in cortical area 3b of owl monkeys trained in a frequency discrimination task. Journal of Neurophysiology 67: 1031-56. Nudo RJ, Milliken GW, Jenkins WM, Merzenich MM. 1996
Use-dependent alterations of movement representations in primary motor cortex of adult squirrel monkeys. Journal of Neuroscience 16: 785- 807. See Doidge N. 2007. The Brain That Changes Itself. New York: Viking/ Penguin.
Jueptner M, Stephan K, Frith CD, et al. 1997. Anatomy of motor learning. I. Frontal Ccrtex and attention to Action. Journal of Neurophysiology 77(3): 1313- 24. Johansen- Berg H, Matthews PM. 2002.
Attention to movement modulates activity in sensori- motor areas, including primary motor cortex. Experimental Brain Research 142(1): 13- 24. “Experience coupled with attention leads to physical changes in the structure and functioning of the nervous system”: Merzenich MM, deCharms RC. 1996.
"Neural representations, experience and change.” In Llinàs R, Churchland PS, eds. The Mind-Brain Continuum. Cambridge, MA: MIT Press.
A physiotherapist once told me ”the brain needs repetitions to form muscle memory.” Based on the above research that’s fairly inaccurate. There's no doubt that when a child with CP is performing new functions and paying attention to how they are moving this is improving their brain mapping, so movement even rudimentary movement can be helpful. Some of what they are doing is effective when learning is actually occurring but some of what they are doing is introducing limitations. Mindless repetitions and the focus on muscles before brain is a limited approach and will produce limited outcomes, while new experiences and variations within the child’s present ability while they are paying attention and aware of the movement is helpful to create activity in the motor cortex.
Think of movement with attention as bringing about a virtual explosion of activity in the brain: Scans showed high levels of activity in the prefrontal cortex during new learning but not once the performance became routine.
I think of a martial artist, if they learned a block ineffectively and practiced it for years they would groove in the less than ideal movement. It’s so important when learning a new skill to go slow and do less repetitions until the ideal movement is formed. At that time repetitions are helpful to groove in the movement pattern in the brain. I think this is what’s commonly referred to as muscle memory. To use this technique before the ideal pattern is formed and learned as part of a rehabilitation strategy, is only going to introduce and groove in a limitation.
What is ideal movement? There is a trajectory of minimum effort, it is reversible and there is a perception of differences when done ideally compared to less than ideal movement.
Human neuroplasticity at work:The daughter who changed her brain
6/2/2015 1:14:00 PM
These days I find myself reading about neuroscience and minimalism. I’m presently reading Norman Doidge, M.D.’s new book “The Brain’s Way of Healing”. I’m fascinated by the discoveries in neuroscience and especially reading how it has impacted the lives of those affected. I was particularly interested in this book because there’s an entire chapter on Moshe Feldenkrais and his student (my teacher) Anat Baniel. What I wasn’t expecting was the very next chapter about a blind man who recovered his vision using a principle from Buddhist teachings but wasn’t able to put it all together until he discovered a Feldenkrais exercise for improving vision called “Covering the Eyes”. Doidge presented parts of the Feldenkrais lesson and as I read I recalled doing this lesson in one of my training segments. Marcy Lindheimer led the lesson, and her soft voice along with the instructions of palming the eyes with your hands led me to a very relaxed state afterwards. I sat up when the lesson was over and my vision was blurred. I recall feeling a little bit freaked out, as I’d never had that reaction with any lesson I had before. It took about 5 minutes before my vision was restored completely. I slowly went to lunch and felt fine. It didn’t occur to me at the time, that my vision may have changed during that lesson.
My eye glass prescription prior to the training was Left (SPH +.50 CYL -0.25 Axis 120) & Right (SPH +.50 CYL 0 Axis 0). I was told I had astigmatism and I used the glasses while reading or using the computer. I didn’t bother with them during any other activities. One day not long afterwards, I don’t know what made me instinctively do it, but I closed one eye while wearing my glasses, then I closed the other. The left eye was now blurred looking through the lens. The right eye was the same, sharper with the glasses on. I booked an appointment with my optometrist. Sure enough my prescription changed. Now both eyes were the same (SPH +0.75 CYL 0 Axis 0) which was purely to make things larger while reading from a screen for 9 hours a day. My vision was actually now 20/20 in both eyes. I asked my optometrist, "How did this happen?" He assured me that although it’s pretty uncommon, people sometimes improve their vision over time instead of the other way around with age. It wasn’t until I read that passage in Dodge’s book that I was certain that that exercise caused the muscle tonus in my left eye to stop contracting and the reason my vision improved. If a man who had 20/800 vision in one eye had improved to 20/200, I was assured that my own improvement could be attributed to the Feldenkrais lessons.
Another book I’m reading (which along with "Kids Beyond Limits” by Anat Baniel should be required reading for any parent of a child with cerebral palsy) is “Way out of cerebral palsy during infancy and early childhood with the Feldenkrais Method®” by Paul Doron Doroftei. Anat brings the perspective she’s learned from her 30 plus years of experience, first working alongside Feldenkrais and then on her own with children with special needs. She has developed nine essentials that bring about improved functional abilities. Parents can use these essentials such as slow, variation and subtlety right away when interacting with their children to help them learn and thrive. Paul’s book has the unique perspective of someone who has cerebral palsy and received lessons from Moshe Feldenkrais himself. Paul decided to take the training program to become a Feldenkrais practitioner after continuous improvements in his balance and function over time. He recalls how it felt to come home to himself with Feldenkrais lessons and how it compared to other methods of rehabilitation that his parents subjected him to as a child. He talks about his approach with children which is to make them feel supported, never coerced. He discusses spasticity as the way to compensate for a deficit in perception of the child's own body. Increased muscle tension used to intensify self-perception. “The increased tension in the muscles, however, operates counterproductively concerning the perception of external stimuli coming from the environment because it massively disturbs the perception of stimuli, such as the force of gravity, creating a vicious circle: disorder in the perception leads to increased muscle tension leads to more perception disorder.” As I train to become an Anat Baniel Method practitioner I find this type of information so valuable to begin to understand what my daughter feels. I start to see how I can create a learning path forward for her to overcome this challenge that is so cyclical in nature.
Dodge writes about Feldenkrais, “These insights contrast with the approach of many conventional physical therapies or the use of machines for rehabilitation, which generally give patients with “biomechanical problems” repetitive exercises, based on the assumption that there are ideal movements for lifting, walking, getting out of a chair and so on. Feldenkrais hated it when his ATM classes were called exercises, because biomechanics repetition of action was what got people into bad habits in the first place.” and “ Feldenkrais’s approach differs from some conventional body therapies in terms of method and goals, insofar as they focus on specific parts of the body and hence are “local” in orientation. For instance, some of the forms of physiotherapy will use exercise machines, to engage specific body parts of move through stretching and strengthening. These approaches, often extremely valuable, are arguably more inclined to treat the body as though it were made up of individual parts and therefore more mechanical in orientation. They may prescribe particular protocols for particular problem areas. Feldenkrais claimed, “I have no stereotyped technique to apply ready-made to everyone; this is against the principles of my theory. I search and, if possible, find a major difficulty which can be detected at each session and which may, if worked upon, soften and be partially removed. I…go slowly and progressively through every function of the body.”
I feel as though there’s still a big part of healthcare and rehabilitation practices that are operating within a paradigm that ignores the brain and it’s potential to change. We were told by my daughter’s paediatrician that she “would walk but she wouldn’t play the piano.” SAYS WHO!!! We were told by our her neurologist that the function of her hand “wouldn’t be perfect”. Who is she to define what perfection is?!!! The limitations for special needs children and their parents are mostly put upon them by others. The worst part of this for a parent, is allowing that to influence the path of experiences they have. The best advice I can give to a parent of a special needs child is don't allow it. Don't allow their limited thinking and experience determine the path for your child. Be their advocate for learning instead.
The idea of strength training for a brain injury is coo coo. First they have to be aware their leg and pelvis, etc., exists and how it can move in the gravitational field before they try to strengthen the muscles. Often strengthening of muscles will occur naturally once they have integrated more of themselves within their movements - and this is all controlled by the brain. Our daughter not only walks now, she runs and jumps, and you can bet I will work with her until she experiences the same functionality with both hands. I love this Ted Talk by Barbara Arrowsmith-Young “The Woman Who Changed Her Brain.” She has similar views that present healthcare is acting based on science from the fifties, imposing limitations that were the belief at the time. Popular books like Barbara's and Norman Doidge's make me hopeful, as there's nothing like a best seller to reach more of society, have us question the norms and change the way rehabilitation is done.
As for the minimalism by nature, I will catch you up on that in another simpler post.
The default reaction of pity and charity when it comes to special needs children needs to evolve to be inclusive by providing the same experiences for all children. Separation by ability takes us farther from a truly accepting and richer community. As we all live longer, there's a great chance that disability will impact our lives in some way. I think Torrie and her organization "Kids Included Together" who teach over 25,000 people a year, changing attitudes toward disability and providing best practices training using a blend of live workshops and innovative technology are role models of society.
As I learn the Anat Baniel Method and get closer to the completion of the basic training, I realize that Anat's approach is completely in line with this way of thinking. To see each child as a child not a special needs child. To start where they are and provide for them opportunities to discover their own abilities, not to fix them as they aren't broken.
This post has been festering with me for a while now. I haven’t taken the time to slow down and put my thoughts together since the event that triggered it occurred. After a blizzard today and being snowed in this evening with no where to go, it allowed time to let my mind wander.
A girl I know from high school was in the local newspaper weeks ago claiming that there was no assistance to help buy her son a GPS tracking device. Her son has Down's Syndrome and over the holidays he had wandered off, leaving the entire family panicked until they found him.
Some of the comments make me question humanity and the type of society we are creating for one another. The fact that the province offered $1000 to fence her yard in, but wouldn’t cover the $600 device leaves me baffled. It’s as though they are saying “we will help you keep your child locked away, but we won’t give you any comfort or ease your stress by assisting with a device that will give you peace of mind at the mall, at the school yard, on vacation etc. basically to continue to have a life less worried outside of your home.”
I feel for this mom. Even being biased, as I know she is a good person, I can’t understand how people could criticize her for buying a Playstation instead of putting her money toward the device. This is a question a family without a special needs child never has to ever answer. They don’t need to budget for assistive devices. Children’s birthday gifts can be planned and purchased without guilt that there is something still required. As parents we care deeply that our children get every great experience every other child has the opportunity to have, and we carry the stress when there are more needs that can’t always be met without support from others.
I’m disgraced at the response from our province, and those in our society who perpetuate greed instead of giving.
Coming up to a provincial election here in PEI, I challenge candidates to open their minds to imagine and help create a future society that we want to live in. A society where we truly care for others who have needs, special or not.
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