I just read someone’s epiphany – their turning point when they changed their perspective in life. I’ve had a number of those and quite a few of them have centered around coping with the challenges of raising a child with special needs.
It’s very clear in my mind. I was standing washing dishes and talking to my mom. I felt distraught and discouraged. Laundry was piled on the couch. I was working through a mountain of pots and pans. I KNEW the floors needed swept, the beds needed made, the carpet needed vacuumed. And that didn’t count the car washing, garden weeding, and grocery store run.
I said to my mom “What am I doing wrong?” “Why does this all feel so hard?” “Other people get these things done!”
My mom replied “Other people don’t have a child with special needs.”
My mom tends to get to the heart of things quite simply. Somehow, hearing that from her helped me to forgive myself.
You see, I was the one who wasn’t going to let having kids slow me down. I was still going to go camping, backpacking even, and run all around town doing my business. What’s a kid or two thrown into the mix??? Just load them up and continue on.
That lasted until we were in the Sierra’s, miles from a hospital or even any other person, with my son coughing like a seal. Yep – it was croup. His dad was boiling water all night and passing it under the blanket to me where I was holding my son and trying to help him breath the steam.
I heard him quietly say – “Andrea – I can have us packed up and out of here in 30 minutes – Should we go home?” Don, who couldn’t yet talk, mind you – started chanting like ET “hooome” “hoooome!” I sighed and said, “let’s just give it a little longer. We can make it until daylight.”
That was our last trip into the wilderness. It was just too risky to be that far from hospitals and other help. Reality was quickly setting in.
Back to my mom and fastforward a couple more months. Me: “Mom – I feel like I can’t be a happy mom for my kids. How can I ever be happy when one of my children isn’t ok?”
Note that I was still in “Fix-it” mode. I wanted to make everything better for my boy. That is what parents do, right? There was no way to kiss this and make it better. I felt like I was failing my son and he was at risk because I couldn’t make cerebral palsy go away.
My mom, clearly and simply said, “but Andrea. He could have died.” Ok. Wake up call. Yes. I had plenty to be happy about.
I never had any problem what so ever with loads and loads of love for my children. I had quite a few more steps to take to get to totally accepting my son just the way he is, no need to fix, and appreciating his uniqueness. These were a few of the first steps. What a fantastic life lesson this became for me. It’s something I wish for all parents, and especially parents of children with special needs.
We had the great good fortune to have Elinor visit the San Francisco Bay Area to work with families and practitioners. In San Jose, at my office, she did 6 brain-gut focused lessons to help families and to illustrate for Feldenkrais and ABM practitioners what the impact and possibility would be when including this work in their practice with children with special needs.
Wow. I am even more convinced that her work will change the future for children who are atypical. Each case was a unique opportunity for Elinor to demonstrate how nutritional needs, and function of the enteric nervous system impact these children’s development so strongly.
Here’s who she worked with:
28 year old with athetoid cerebral palsy with some spasticity and retained ATNR who lives independently and uses power chair
6 year old with spastic quadriplegic cerebral palsy beginning to speak and very active
1 year old with severe hypoxic event at birth who has issues with autonomic nervous system and does not move
4 year old with signs of autism which appeared at 16 months who is very robust and vital
3 yr old with floppy head and athetoid type movements with great health
5 year old with chromosomal disorder resulting in agenisis of the corpus callosum and slow myelination.
Here are some brief synopsis to give you an idea what was covered:
With the 28 year old she was able to calm the tight contraction in his small intestine and teach him to feel how to sense that area as he comes to sit so he does not contract in his legs and become stiff. She recommended lots of onions to help him normalize the small bowel intestinal flora.
Update: He immediately went to the grocery store to purchase onions and add a lot of them in his diet. He experienced cramping in his small intestine area that night and the next two days. No longer constipated but uncomfortable. Day 2 I did additional enteric work and was able to get the small intestine area soft again and the illial-cecal sphincter area to relax after 4 circles through the system. There was a huge amount of motility all around at the end of the session (15 to 20 minutes) in his abdomen and in his rib cage, sternum and shoulders. NICE! The second lesson completely gave him relief again.
With the 6 yr old SQ CP – Elinor recommended checking his fillings to see if they were amalgam, checking the Folate level in his spinal flood if there is a non-invasive way to do that, and using magnesium citrate or glycenate daily. She worked with his vagal nerve and esophagus, stomach and small intestine to “tonify” the vagal nerve and get everything more active.
With the 1 year old she recommended Activated Folic Acid (-5mthfr or folinic acid) supplements and checking for the MTHFR gene variation. She worked to calm the reactiveness of the branch of the vagal nerve going to the liver which was connected to her eyes rolling back in her head and the “startling” of the autonomic nervous system. She worked on the pull going diagonally through the body to the illial-cecal valve which was connected to the dystonia.
With the child with autism spectrum symptoms she discussed the leaking of seratonin into the brain and consequent behaviors triggered as well as the lack created in the digestive tract and the disruption of messaging between the intestinal tract and pancreas etc that this causes. She said the issue with seratonin and with another brain chemical would resolve with work on the enteric nervous system.
Elinor was impressed with the digestive health of the three year old with floppy head and athetoid type movements. She worked with the timing of the sphincters and digestive tract and this child had 3 poops that morning. She felt the folinic acid would be important for this child also.
Note: I hope to update this article as I get reports in from parents about how their next few days have gone.
Elinor is so generous with her knowledge and is committed to getting this information out to parents and practitioners and to helping children with these issues. She has plans to offer hands on training so that others can do the enteric nervous system work and she will continue to educate everyone about nutrition and the Brain-Gut connection. I will let you know when and where her next workshop will be!
Most of us spend years accumulating the knowledge that we can share with other people. We attend universities, apprentice, study, experience life, and follow our interests and passions, to gather what we know. Really fortunate people make a living sharing their body of wisdom with other people. When you take the teachings and knowledge of others you have accumulated add in your life experiences, and present your own footprint, working flows easily.
Creating this unique footprint is not an easy thing to do. Many systems are in place to encourage you to duplicate what the masters have taught and duplication is not a bad thing. After all, it copies something that is proven to succeed. But it is a creation that was customized to fit another person. Everyone else will feel the extra striving and effort that goes in to trying to duplicate instead to of letting things flow. You are the only one that can bring YOU to the world. What you offer is unique. So copy someone else, or create you. It’s a choice. Developing your own footprint takes knowing yourself, knowing what you know, and creatively combining the two to define what you have to offer and how it will be presented.
I’m working on that 3 step process. I love some of the discoveries I’ve made from challenging myself to do this deliberately.
First of all – discovering yourself. Wow. For someone (me) who has practically made a life’s work out of meeting other people’s needs and being what they needed me to be this one is not obvious. It’s been a journey and will continue to be as I understand what makes me react, what I like, what my talents truly are. I have made a lot of progress with it. It’s a never ending book I can keep going back to.
Knowing what you know. Well, that one takes a little thought to understand how complex it is. We all know lots of things and have an internal measure of how adept we are with them. Is it a cursory understanding? Is it mastery? Somewhere in between? I discovered that internal barometer can be so skewed! Once I understood there are “types” of people with differing perceptual styles, and within those types, differing talents and preferences, I understood another way that my reality and someone else’s might differ. One of my epiphanies: “You mean EVERYONE doesn’t love research? and they’d actually PAY for me to package up that information for them in a useable form?” So, what I thought of as effortless, free, and commonplace was one of my assets. I can put that in the list of what I KNOW. I also had to accept what Anat Baniel once said to me – “You can’t act like you don’t know this (ABM work) Andrea”. I deliberately sought the knowledge she taught, became very skilled at it, and needed to present myself that way to other people, not be plagued with not knowing enough. I needed to own what I knew.
Now comes the creatively combining part. I love my work. I feel so fortunate to be able to offer what I know and help others, especially children with special needs. I’m realizing that I have a unique combination of knowledge to offer (see paragraph one — I have to keep reminding myself). I can make a deliberate decision to add all of me into what I do. I can’t tell you exactly what that will look like yet but I’m working on it. I’ve discovered that writing articles for public reading is part of my footprint.
Since my dad passed away I’ve often thought of all the skills he had and wondered if he was happy with how he used them during his life. I had a sense of lost opportunities because he built all that knowledge and so many skills and now he is gone. Did he wish to do more with his woodworking? Tie more flies? Organize more events? Arbitrate more groups? He was a very renaissance man and could have directed himself many many ways. Now I see that the direction was his choice. He didn’t leave parts of himself behind when choosing one path over another. He brought all his skills along to create what he offered the world. He had a big impact on a lot of individual people. There were not lost opportunities, there was his choice.
We can choose to direct our talents in unique ways to make our contribution. I am in awe of the people who do this effortlessly and I am dedicated to learning how. Can you imagine the richness if every person does this instead of leaving little valuable pieces out so they duplicate someone else perfectly?
Some suggestions for figuring out your talents. No – it’s not necessarily what you are “good” at. That can be somebody else’s talent that you learned really well. It’s the things that make you feel good to do, the things that feel easy. I’m figuring this out with the help of Allison Rapp. She is an awesome coach and is constantly evolving how she can help others.
Feldenkrais Practitioners – This one is for you. Allison Rapp offers a program for identifying clients who are good fit and building your practice around them. It’s a 12 week program called Heart 2 Heart with continuing resources available to participants FOREVER. Enrollment closes this month. It will open again Fall of 2013. I’m also doing additional assessments with her to give me insights into myself and my talents. Obviously, Allison has put her talents to work here. She has very professional, well developed programs that are based on Moshe’s work and how we learn. Many satisfied customers are developing busy practices. I think there are going to be some new programs available for the first time in early 2013. Go take a look.
“Your unique gifts fuel your passion and bring you to the place where you can truly make a difference. All too often, we minimize our gifts, believing that no one values them. Or we imagine that because our gifts come easily to us, everyone can do what we can.And then we go about making our lives difficult, in order to achieve something ‘worthwhile’ — which only means, of course, that we have to struggle to attain it.
Your gifts are your strengths… the world can’t do without them! How you combine them with your unique life story and offer the world something it can’t get from anyone else — this is the basis of your legacy!
What gifts do you bring to your family, your friends, your clients, yourself? What do you make people grateful for, without even realizing you’re doing it? Take a few minutes and start making a list.”
Here are links to see what they are about, but I recommend working with someone (who is a good fit for you) to review your results and apply them to your work/life so they do not become just another survey you’ve done that doesn’t become useful to you.
Not a practitioner or wish to get some free tools to know yourself better? I found Marcus Buckingham online. Oprah featured him and now offers video of the class he gave: (added bonus – fantastic Scot’s accent) It’s a series of 8 videos – about 2 to 3 hrs of work to go through. It doesn’t have the depth or detail but it is along the same lines. I’m glad I did the other assessments first before watching Marcus Buckingham because the focus in the Perceptual Style/Talents assessments is on the differences between types (all positive) rather than on Marcus Buckingham’s course to identify strengths and weaknesses (judging positive and negative). That said, Mark emphasizes it is not about personal weaknesses but on what makes you FEEL weak during your days. He has tools to bring awareness to that – and it’s free!
Another great resource: Marie Forleo is the epitome of creating your own style. She is a business coach who changes people’s lives. Talk about enthusiasm and creativity! I get her email newsletter to see the Marie Forleo TV video episode every Tuesday. You can also go through her existing library online. Just look at this list!
Feel Like A Failure? Here’s Why That’s A Good Thing
The Single Most Important Factor of Your Business
Who Else Influences Your Customers
How To Transition From Your Day Job To Your Dream Business
Fear vs. Intuition: How To Tell The Difference
Are People Around You Holding You Back?
Alienating Potential Customers
What To Do When You Doubt Everything + Just Wanna Stay In Bed
Should You Combine Your Many Passions or Choose One?
When Life hands You a Sh*t Sandwich
And finally – Guess What? This is not just about making an income. It’s about making a living – and about living your life. As Allison said to me – “You are not two people – your personal life Andrea and your work life Andrea. It’s all you.” What a great life I have to have these options and opportunities.
I am thrilled to be hostlng Elinor Silverstein in San Jose, CA January 18th and 19th, 2013. As a Feldenkrais practitioner and scientist Elinor has many years experience working with children with special needs and she has developed a unique expertise working with the sphincter muscles, the viscera and the Brain Gut connection.
Elinor will be seeing children the afternoon of January 18th and the morning of January 19th. The focus of her work will be normalizing sphincters, identifying gut issues, and nutrition suggestions. There are a few appointments still available.
Please have interested parents call Andrea Bowers @ 408-750-4302 to reserve space.
Elinor will welcome interested practitioners who wish to discover the strong connection between a child’s gut and our ability to help them with Neuromovement work. Practitioners are welcome to observe both days. Friday night we will have an informal buffet dinner and Elinor will present about the brain gut connection and answer practitioners’ questions. Costs will be minimal.
This is part of a Huffpost article about gratitude which was posted during the Thanksgiving holiday. It is such a simple concept that filling yourself with positive thoughts, learning, or gratitude is a choice – a choice that moves you away from the alternatives.
Happy Thanksgiving everyone!
Pastor Don Mackenzie:
Several years ago I found myself saying that when we live our lives framed by an awareness of our blessings, we can find the resources to cope with our curses, with our difficulties. But when we live our lives framed by an awareness of our difficulties, we cannot get access to our blessings. When we are not feeling grateful, we are more inclined toward resentment. And resentment is what happens when life contains too much suffering and sadness, when things don’t go the way we had planned, when our dreams seem fragile. When that happens, we must find our way back to gratitude. It takes practice to keep in touch with our blessings, practice through prayers, meditation and other forms of centering. What the practice gives us, in time, is a way to open our hearts, a way to get beyond the ordinary boundaries of our egos to a place where we can, in an awareness of blessings, be lifted above the difficulties that might otherwise frame our lives.
This is Part 5 of the Brain Gut Connection series. It is my understanding of the impact of nutrition and genetics in children with special needs as explained to me in conversation with Elinor Silverstein.
In previous articles Elinor has detailed how important nutrition and properly functioning metabolism are to everyone’s health. She has discussed how the gut and the liver work and how dysfunction can impact the brain, CNS, muscle tissues, and other systems of the body due to inflammatory response, inability to eliminate toxins, and/or inability to deliver nutrients to the cells themselves.
Good nutrition and metabolism are important to any growing child, but children with special needs are more at risk for the issues Elinor has discussed to cascade into severe limitations. Many doctors and medical professionals are making information available about the impacts of nutrition on children with Autism Spectrum Disorder and similar conditions. What is less known is the impact on of deficiencies and toxicity for children with Cerebral Palsy, torsion dystopia, Torticollis, and other neuromuscular conditions. Knowledge of this relationship between movement disorders and the Enteric Nervous System can change the course of a child’s condition. When the gut calms down and children get the nutrients their bodies need to thrive, improvement is dramatic.
The Viscera Elinor is a highly skilled Feldenkrais practitioner. She was trained by Moshe Feldenkrais and was mentored by Gaby Yaron and Ruthy Alon. Years ago she asked Gaby for advice about her work, “What else can I do to help?” Gaby responded, “Everything in the body is connected. People will leave your lesson improved and come back next week crooked because you never talked to the organs and connective tissue in the abdomen.” To do this Gaby worked very deep in the viscera, but Elinor found that she could put her hands very lightly on the belly and feel something pulling and moving.
Years later, a well-known physical therapist who Elinor was working with, and is one of the main Upledger teachers, explained to her what she was feeling. While Elinor used Feldenkrais hands and touch, she constantly felt pulls and movement. The PT, showed her the anatomy and physiology of sphincters and connective tissues suspending the organs, and what they were doing while receiving this kind of touch. A light went on and Elinor moved forward with this in her way of working with her clients. Especially, those in dire need. Slowly, but surely, more and more of the people who came to her practice improved quicker than before. She created lessons to teach them what she was doing and how they could use their movement lessons to help their organs function in synchrony with the rest of their body.
Sphincters are the ring muscles that function by closing and opening. The most well known are the gastric-esophageal sphincter where people experience reflux from the stomach to the esophagus, and the anal sphincter that controls the passing of bowel. We have sphincters in many places throughout the body including around the orbit of the eye, between the liver and the bile ducts etc. Sphincters in the body are related to each other in a rhythmic way. Deliberately contracting one sphincter, such as pursing lips, can impact the other ring muscles in the body.
Elinor explained that some of this understanding of the viscera comes from the work of osteopath and physical therapist, Jean-Pierre Barral, the founder of the Barral Institute. Also, Ruthy Alon, a masterful Feldenkrais practitioner and founder of “Bones for Life”, was “huge on the sphincter muscles” explained Elinor. In 1981, Ruthy recommended reading the book “Secret of the Ring Muscles” by Paula Garbourg, which became a major source of information and inspiration for Elinor.
Spasticity and the Gut Elinor uses her knowledge of visceral and sphincter functioning through the lense of Feldenkrais thinking. She incorporates healing the gut, ensuring that nutrition is being delivered to the cells, eliminating toxic build up, decreasing inflammation, making a healthy and viable connection between the enteric and central nervous systems, and always remembers the millions of years of evolution from which we have come. By using our body in movement we can work with all of these systems as a whole.
We have two nervous systems. The Central and the Enteric Nervous System. The Central Nervous System (CNS) is the brain, the spinal cord, and nerves connecting to the tissues of the body that have to do with physical movement. The Enteric Nervous System (ENS) is embedded in lining of the gastro-intestinal system (gut). It has been called our second brain. It includes everything that involves the organs and the viscera and it can operate separately from the brain and the spinal cord. Working in the mouth is working with the enteric nervous system. What goes on in the mouth with enzymes and acids goes on in the rest of the enteric nervous system.
Each nervous system influences the other. Sitting crooked can affect the gut. Gut issues can affect posture, tonus and the entire CNS. When the ENS starts to spasm it trips off the CNS too. In her work with children with movement disorders Elinor can feel a wave of spasticity originate in the Enteric Nervous System and move its way to the Central Nervous System. The origin of the spasticity can be the ENS.
Elinor says, “When I put my hands on their belly and show the viscera how it can function properly the contractions with the arms stop and torsion and twisting of the head, neck, and spine quiet down without even touching the limbs and skeleton.”
HUGE VITAL INFORMATION!! Kids with CP almost always have gut issues, says Elinor. She explains, children with hypoxic trauma have experienced oxygen deprivation in both the Central NS and the Enteric NS. Both systems directly communicate with each other. You cannot damage one without damaging the other. The recent concept that we have 2 brains for nervous system control, one in our head and one in our gut, helps us to understand this relationship. The impact of hypoxia to the CNS can appear as damage to parts of the brain that control movement and thinking. The impact from the same hypoxic event can cause damage to the ENS which will appear as dysfunction of the organs and intestinal tract. This is why these children seriously suffer from constipation and other dysfunctions of the gut. A truly fantastic way to take care of the brain is to take care of the gut, states Elinor Silverstein.
In extreme cases Elinor sees the belly in these children become big and bloated, the head and neck arch back, their arms go to the sides, there is excessive sweating, and there can be difficulty breathing. Some part of their nervous system is being triggered because of existing damage in the ENS from the oxygen deprivation. As a seizure can move through the brain in the Central Nervous System, this same kind of chaos can move through the Enteric Nervous System. Stress can trigger it. Hunger can trigger it. Anything that jolts the system can trigger it. Elinor says this can be worked with and these children can be helped. We are teaching them to have tools to self regulate.
In addition to the existing trauma to the ENS that occurred at or near birth, or in utero, there can be all the issues Elinor has discussed in previous articles, such as reduced or non existent vitamin and mineral absorption and wastes being reabsorbed back into the systems and taxing the tissues, the cells of body, and the body’s ability to eliminate waste and toxins.
Elinor Silverstein has shared video of her teachings on Youtube. Below are some examples with a brief description. For more videos go to Elinor’s Youtube Channel and browse for her videos about children with special needs.
Example 1 – Dylan – Cerebral Palsy, Seizures
Dylan would improve and be great for a week and then go backwards. We needed to work with his gut health, said Elinor. He had very strong cerebral palsy, was hospitalized frequently with seizures.. Eventually, if he regressed he could return to balance with a 30 minute lesson. Sadly, Dylan recently passed away very quickly from what might have been a flu virus. Have no doubt he lived a very gracious, happy, and fulfilling life through his young childhood. Here are short video clips filmed with Elinor Silverstein in which she discusses the things that helped him be a vital little guy.
Example 2 – Miles – Very Important talk – Methylation and the Liver’s ability to detoxify
A short video in which Elinor explains methylation of the liver, and what it means, it’s vital importance, and how to check for MTHFR gene variations. It’s a Simple, simple, simple test for the MTHFR gene variation. Elinor explains how methylation relates to the FM and how we might approach it. Recorded on January 6, 2011 using a Flip Video camera. Video quality is poor, but the content is so valuable Elinor wanted to include it here.
(video coming soon)
Example 3 – Annabelle – Working with metabolic issues 3.1 (part 1 of 3)
If you would like to view a complete lesson with Elinor Silverstein, here is a the first part of a 4 part series of videos showing one lesson with Annabelle. You can hear conversations between myself and the parent exploring the ideas about metabolism and it’s impact on the movement disorder in their child.
Some signs Elinor has mentioned that might indicate your child’s issues with their musculoskeletal system/brain might be connected to their Gut:
One eye moving differently than another (alternative issue to strabismus) nutritional deficiency
Teeth not erupting and positioning correctly – nutritional issues
Eyes showing more white around eyes – strong indication of processing issues
Breathing pattern seems to be very quick – erratic – possible nerve tone issues
Scratching, itching, skin problems-nutritional issues, especially fatty acid deficiencies
Bright pink cheeks, or face suddenly turning red -allergies, possible reaction to food(s),
Ears flushing – possible nervous system dysfunction
Baby crying from lying on back in stroller in malls but fine on stomach – processing issues – overwhelmed by stimulation from floursecant lights and passing images
Babies’ reactions to things nursing moms eat – watch for skin color, eyes, mouth shape, temperament changes
Spasticity – issues with the nervous system, and/or with B vitamin deficiency
Torticollis – turning of the head to one side with a twist of the spine – B vitamin deficiencies, especially methylated folate.
Scoliosis – possible ENS dysfunction
Seizures – can indicate CNS and/or ENS (gut) issues
Nutritional deficiencies -Can be seen as cravings, issues with skin, hair, behavior, and/or sleep
Belly distended – never normal – can be formation of Gas/Wind – swallowed air – reaction to food, sign of inflammation and swelling in the viscera
Diarrhea – possibilities: pancreatic enzyme issues, gut bacterial flora not normal, sphincter disregulation
Constipation – possibilities: food sensitivity/allergy, gut flora not normal, issues with mobility and motility of gut intestines and organs, sphincter disregulation
Seeking more information
Here are some of the professionally specialties that help with these areas of health and well being. Interview the professionals to make sure their specialty or they cover these concerns. Bring list of your concerns and your child’s symptoms.
Pediatric Functional Medicine Doctor – Institute for Functional Medicine (IFM) Naturopath Homeopath Pediatric Immunologist Pediatric Allergist Metabolic Specialist Pediatric Nutritionist
Elinor says “An educated parent is a happy parent. An educated, happy parent makes for a happy and healthy child. Now that you have some tools for viewing your child more fully, you can use your eyes and know what you see, and what you can do to work with him/her. This way your child can have a world of possibilities for growth and well-being. And that is a gift.”
Future articles in this series will focus on the Vagal nerve connection between Gut and Brain, nutritional supplement recommendations for healthy guts, and how to get more information through testing.
There are situations when the opportunity to learn and change are enhanced. I knew that my son, Don, was creating this for himself when he chose to try a new piece on his wheelchair for positioning. There is so much different about how he is supported and sitting with this new equipment that his brain needs to re-calibrate how it solves the challenge of being upright in gravity. I wanted to influence that as much as possible by making sure that he has access to all of himself – no stuck patterns or simplifying his skeleton by holding parts immobile – and by making sure that he was creating new relationships between parts of himself that helped him move easily and with balance in gravity.
Many people know that my son has quite severe athetoid type cerebral palsy, also called torsion dystonia. We found out at 15 years old that he also has a milder form of spina bifida affecting one of his lumbar vertebrae. At 29 years old, Don has had years of Feldenkrais and Anat Baniel Method lessons. He has been driving a power wheelchair since he was two years old.
The new equipment is a bar, called a sub-ASIS bar, which replaces the traditional seat belt for holding his hips. When he was younger we declined this option because it just looked uncomfortable and harsh. Don has been asking for his seat belt to be tighter and tighter trying to gain control. His movements and balance have become more and more about trying to find stability by pressing into something or tightening up muscles in a rigid pattern. Recently, Chris Wright-Ott gently suggested this bar again based on her years of experience working at Stanford Childrens’ Rehab and the Bridge School. I respect her opinion so much that I also recommended to Don that he give it a try. Chris says that the goal is to give him an anchor, or point of support. What I see is that it immobilizes his pelvis.
Don’s movement disorder is about not being able to use gravity. He is not efficient with how he pushes against the ground and he looks for stability by tightening muscles to reduce all those moving parts. Learning balance is very difficult when you don’t have a “down” and an “up” and movement options are reduced. Balance is about being able to constantly correct for your head not being vertical. The more moving parts you have to fluidly compensate the smaller the balancing movements can be. (There’s a good reason that we have all those vertebrae in our spine.) Cirque du Solell performers balance with such small movements that your eye can barely see them. They tighten up nothing. Remember first learning to ride a bicycle? Yeah – big movements to balance until you relaxed, left your head in the center and used all of the rest of you to make tiny changes to keep your head centered and vertical. Having Don’s type of cerebral palsy is very similar to that first bicycle experience.
Don has gradually worked up to using the bar for most of the day. It has not caused discomfort and now does not keep his attention at all. We started noticing differences in how he used his torso and the uprightness of his head within 1 to 2 weeks. I was excited when he started saying muscles were sore in unusual places. I knew that meant his brain was coming up with new solutions that used his muscles in ways he hadn’t been using them before.
With his pelvis immobile Don has a different foundation for lining up his skeleton. His pelvis is now an anchor. Typically developing infants learn to use themselves this way. As adults we take for granted that we sit on a base. Don has never had this experience before. I wondered what his brain would do with it. How would he stack up his spine, ribcage, shoulders, neck and head? Would he be able to do more balancing and less clenching with this stable base?
We’ve started doing lessons in week three. I have been traveling a lot so it has been awhile since we have done a series of lessons together. Since it has been so long I expected him to have lots of trouble settling down on the table and stopping compulsive muscle contractions. I was pleasantly surprised when half way through the first lesson he took a big breath and just settled down. The next lesson it only took moments. There were major issues, which we’ve worked with in the past, with how he was lining up the vertebrae in his lower back (that vulnerable spina bifida area) and his neck, but they changed so quickly that I was amazed. It feels like Don has the opportunity to create something that was never possible before. Today I took these photos because I was so excited about the learning he is doing.
One of my concerns was that by adding this bar, which is a compensation very much like a brace and is an external substitute for learning, Don would lose ability to sit when not in the wheelchair. Quite the opposite is true as you can see. His whole system is quieter, he is wiser about using gravity, and able to balance with far less effort. He has real confidence about his ability to keep himself safe sitting on my table.
I’ll put a video here showing how Don gets back into his chair after lesson #4 once I figure out how to upload it.
I’m excited about the opportunity that Don has created and really looking forward to exploring where he can go with this. This is not a solution for every person in a wheelchair but you can see that the novelty and variety of trying something new gives an opportunity for new experience and learning.
This is Part 4 of the Brain Gut Connection series. It is my understanding of the impact of nutrition and genetics in children with special needs as explained to me in conversation with Elinor Silverstein.
Elinor is very passionate about is the importance of the Methylenetetrahydrofolate reductase (MTHFR) enzyme. It is encoded by the MTHFR gene. Variations in this gene were formerly thought to be quite rare but it is now known to be more common. Elinor has had hundreds of people tested for this gene variation and all but 1 have had it. Dr. Allen Green, MD states that 1 in 3 people now have this gene variation. The impact on health and the ability to help people with this variation is huge.
Elinor explains that the methyl enzyme is used in the process of combining folic acid (B9) and methyl ions (one carbon bound to three hydrogen atoms) into L-5-methyltetrahydrofolate (L-5-MTHF) the metabolically active form of folic acid. Deficiency in activated folate has been implicated in heart disease, difficulty issues with pregnancy and fetal development, difficulty carrying pregnancy to term, movement disorders, and even high blood pressure in slender healthy people who should not have high b.p., brain fog and others.
In addition, Elinor indicates the inability to convert methyl is tied directly to many other health issues including metabolism of nutrients and the detoxification process. When these processes are disrupted it has a big impact on health in the short term or long term as deficiencies and toxic load increase over time.
B12 is essential for healthy nerve cells. It works with Folic acid to build the genetic materials of all cells, maintains healthy cell function and development, and assists in the production of enzymes. B12 is a key micronutrient that supports immunity and lymphocyte function. Elinor notes that it is important for people to know that when a senior citizen does not receive the methylated form of B12 there are often signs of serious neuropathy in the legs and feet, fuzziness in the head or confusion, or even senior depression, and versions of dimentia associated with it. All this is directly tied in to the fact that a very crucial nutrient, B12, is not getting to the central nervous system and to the brain.
Elinor explains that there are two forms of B12 – methylcobalamin and cyanocobalamin. She says that a person with the MTHFR gene often might not utilize B12 well, and if they take the vitamin supplement in the form of cyanocobalamin it will only make the blood levels go up, but not actually get utilized by the cells. The most usable form in these cases is the methylcobalamin form. It can be used in the cells and transported to the brain and nerves very easily which leads to healthy brain functioning and active nerves all the way down to the legs and feet. She talks more about this in more detail for nerve health.
Elinor says, “You just don’t want such large doses floating around not going everywhere they are needed after many shots (of cyanocobalamin). I know, my mother felt better after the first injection of cyano– but after several injections her blood levels were crazy high, because they were not completely being utilized and the doctor wanted to stop her injections. I told him that if you stop, she will not feel well again. She needed methylcobalamin instead, and she would feel as good, AND the levels would stay good, healthy and normal, because they would be UTILIZED in every way they should be. Sooooo AWESOME, Yea!!!”
NOTE: Elinor recommends everyone supplement B12. ”Yes, everyone should. It’s so cheap, and so easy to do. I give myself a shot every month just under the skin with methylcobalamin. Both my sons do, and so does my mother.” ”Live long and prosper, and take your methyl B-12!”
Elinor explains there are 3 stages for detoxification in our bodies. We take in toxins from our environment through what we eat, breath, drink and have skin exposure to. Stage 1 these toxins are absorbed by the liver. Stage 2 the toxins combine with with L-5-MTHF to then send the toxins to be excreted. Stage 3 is excretion, primarily through the kidneys as urine and intestines as stool. If there is not enough active folic acid to do the toxin conversion the liver pushes the extra toxins out to the blood stream where they deposit in blood vessels, organs, muscles, tissues, the brain, and the peripheral nervous system.
Elinor, herself, gets tested every two years to measure her body load of heavy metals using a urine challenge test. The test for heavy metals uses Ethylenediaminetetraacetic acid (EDTA), a chelating agent. It is most reliable to administer the EDTA by IV in your doctors office because it does not depend on the EDTA passing out of the intestine as an oral dose does. And, it is not expensive.
The body load of heavy metals and other toxins can get progressively worse. Factors such as vaccines or anesthesia can compound the problem by increasing the demand on the liver to do its job. People with the MTHFR gene variation will usually have difficulty metabolizing anesthetics. They may have more difficulty waking up and may be throw up until they start to recover from the toxic overload.
An inexpensive blood test can identify whether this gene variation might be an issue for you or your family member. If one finds they have the variation here are a few things you can do to augment this methylation process. Elinor says, ”Take sublingual B12 daily, however, I found for myself that the shot every few weeks works much better. Also, eat sulfuric foods like fermented cabbage and kimchi. You can also add kale, broccoli, and other good dark greens that contain sulfuric compounds. I really love garlic and onions. All of these foods are sulfuric in nature which helps in addition to B12 and activated Folate to make the methylation process. How awesome it truly is when our foods can be our medicine!”
Future articles willI be about spasticity in the gut and visceral work, nerve health, and constipation and seizures recommendations for nutrient supplementation.
People have asked me Why do Anat Baniel Method (ABM) if you are already doing Masgutova Neurosensorimotor Reflex Integration (MNRI)? or vice versa. Each makes a contribution, but for me, nothing gives children with special needs the joy of learning that ABM does. Sometimes, turning on learning is such a challenge that it absolutely has to feel that good to be worth it. I know that helping a child experience that joy is what makes me feel my work is worthwhile.
Can you tell I feel strongly about ABM? It’s my primary focus and the foundation of my work with special needs children. Read on and you will see why I also incorporate and recommend MNRI when I feel it can help.
We are very fortunate to live in a time when there are many options for treatments, schools, and helping professionals for children with special needs. Just 60 years ago there were not, and disabled children were kept at home and not included in society. Recommendations and referrals come from many sources and parents of children with special needs have the responsibility to choose who will help their child. There is no one professional who parents can rely on to tell them “THIS is the solution”.
Parents not only have to choose WHAT experience to bring to their child but also WHO will be helping. Professional classifications and certifications are designated to help consumers know how to find specialists and to give some idea about the knowledge and service that person has to offer. No matter what field, there is always a range of experience and specialty to select from and a variety of personalities, people skills, and ways of presenting. Making these decisions is part of the challenge of being a parent of a special needs child. Each helping professional chooses the area they wish to specialize in and offer to others.
I chose learning as the solution out of limitation for my son and it began my journey into the world of movement, learning and brain plasticity. I have always needed variety, creativity, and challenge in my work. At 16 years old I lasted all of 2 days in a library clerk job filing books. What was I thinking to take that job? Well, I love books and didn’t realize that FILING books is far different from READING books. Live and learn. With ABM every lesson with every child is a new puzzle to see what I can offer. No two are ever the same so I am constantly creating solutions. It’s the perfect job for me.
After so many years learning and working with Feldenkrais and Anat Baniel Methods (I can’t believe it’s been 20 years) I became intrigued with the outcomes Dr. Svetlana Masgutova was getting by working with the brain and reflexes and wanted to discover if there was something I could learn from her.
Feldenkrais, ABM, MNRI, Brain Gym, Brain Fitness software have in common the focus on the brain body connection and learning using the plasticity of the brain to help people improve how they feel, act and function. What we previously have learned usually influences our understanding of new information. My understanding of Dr. Masgutova’s work is with that previous ABM context. Other students of her work have often come from other arenas or with less ABM experience so my interpretation and application is somewhat unique.
I learned in the classroom workshops that Dr. Masgutova teaches around the United States how powerful and simple accessing that primitive reflexive part of the lower brain could be. Doing something with intent has a huge impact and what I learned was to have the intent to shift a reflexive pattern by targeting it directly to allow learning to occur. Dr. Feldenkrais and Anat Baniel use the understanding and knowledge of reflexes extensively. Reflexes are not usually focused on in isolation but are built in to the journey toward voluntary organized action. I have found that in some situations that intent and focus on a specific reflex/specific area of the brain can enhance how I can be helpful.
The workshops are a combination of lecture and experiential learning and I actively practiced the “exercises” with my clients and family to see how effective they could be and how I could incorporate them in to what I know and do. During this exploratory time my father had a powerful experience of being able to regain his sense of stability after falling when I applied the work to quiet his foot reflex (babinski) which had been triggered to protect him in the fall. My son reported strong feelings of change in his brain during the asymmetrical tonic neck reflex exercises. I myself had a very powerful reaction to a hip leveling reflex during a workshop when I was still needed to guard my movement after abdominal surgery. Each of these experiences showed me that Masgutova has indeed developed a way to directly access how the brain is organizing itself and it can be powerful.
Masgutova is quite specific in instructing parents and professionals how to do these exercises. She has eliminated the evaluation process for families and any need to adapt what is done by providing the evaluations and changes in program in visits to her team every 4 to 6 months. The home programs give parents a way to contribute to their child’s development and there are a lot of children benefiting.
As I gained familiarity with MNRI I could see that though Masgutova and Feldenkrais have many of the same sources of information their focus diverged with Feldenkrais’ core of learning in gravity and the importance of bones, and Masgutova’s core of pre-gravitational (in utero) reflexes and reflexive protective mechanisms. I find the two perspectives give me more tools to be helpful, especially with children with special needs who are often still so influenced by reflexes that their learning is hugely inhibited.
I am very glad that I experienced Feldenkrais/ABM first and was able to add the reflex knowledge to my understanding of how the human system works. I would like all children to have the experience of the joyfulness of learning and discovering that ABM brings.
I heard a story about an early Masgutova camp in California. 50% of the children were learning quite a bit faster than the other half. When they looked for the common factor it was discovered those were the children who had been receiving ABM lessons before beginning the reflex work. If ABM is the first experience for a child with difficulty learning every other kind of experience will be enhanced.
I recently heard that the words “teaching” and “learning” had negative connotations for people because most have had the experience of feeling bad about their ability to learn. What a shame. I almost can’t comprehend it. I would caution parents to be aware of what their child is experiencing and try to help them have the joyfulness and curiosity of exploring the world that is possible for everyone. It’s a gift you give them that will last their whole life. Choosing WHAT and WHO is helping your child can make all the difference.
NOTE: Portions of this article appear in on the website CP Daily Living. I highly recommend this amazing website as a huge source of information.