When is it Learning and when is it a Crutch?

My priority for my son was to be a part of the community around him.  A child’s social learning is about how to be a friend, how to care for other people, how to be part of a group.  It’s a very complex apprenticeship that we somewhat expect to just happen.  There are  built in learning opportunities like extended family, or school but most parents unconsciously understand their babies and children need social contact so they have play dates, form play groups, enroll their children in nursery schools, sports, and extra curricular activities.  I knew it was important for my son to have as much social contact as possible.

Being around peers enables children to learn and practice the interactive skills they will use as an adult.  They learn to share, to take turns, to respect other people’s property and space and the dynamics of give and take in a relationship.  Skills learned and observations made in the family unit are tested to see if they apply in this new situation.  Who is in charge?  Who makes decisions?  How do friendships form and continue?  Hours and hours of experimentation and testing go in to their exploration of relationships with peers.

A child with a disability is at risk for not having the opportunities to learn the social skills we take for granted.  Physical limitations can make it tough to keep up or join in.  There can be similar problems with limitations in communication, vision, understanding (cognition), emotional development or even just the energy level to keep going with the others.  My son had limitations physically, in communication, and in energy.  He also spent a huge amount of time in therapies.  That might be considered a time limitation.

My vision for my child was that whatever the outcome of therapies was, he would be able to be a happy, productive person in society.  Whether or not he could walk or talk I felt that engaging with other people was the key to a happy satisfying life.  I would have gladly continued to assist him in whatever way he needed me forever, but I knew what independence would feel like and I wanted that feeling of power and autonomy for him.  I understood early on that being in a restrictive environment might be hugely helpful for SOME of his needs but would not take care of ALL of his needs.  The only way to learn to engage and interact in society was to learn people skills and practice them as a child. He needed to be around peers who would become the adults that he would encounter in a community.

So, I started my son in a regular preschool at the same time he started the special school where all his limitations would be accomodated and he would learn computer skills he would need in kindergarten.  Two days a week I would take him to Miss Margie’s class where he became part of the group, made friends, and participated in the pacing and flow of those typical child activities.  He spent one year in a special kindergarten continuing to refine his technology skills but that teacher also merged her class throughout the day with a typical kindergarten class.  Don left the special supportive setting and entered a regular first grade class the next year. He had an “itinerant teacher” who travelled around the district checking on special needs students who were enrolled in regular classes.   Everything went well until we neared the end of second grade.  Don was struggling with reading.  We now suspect that he has damage in his left cortex that affects the centers he needs for reading.  The special teacher was coming in to class to give him one to one assistance but I knew that he did not have the reading skills his peers did to move on to third grade.  I asked Stephanie, the specialist, what was going to happen.

Stephanie Ingnatenko taught me about remediation and compensation.  She explained that when there is a limitation there are two approaches possible.  One is to remediate, to help the person gain the learning that is limited.  The second is to compensate, to find some way for the person to not be so limited by the lack of learning.  The one on one reading help Don was receiving was remediation.  The Anat Baniel Method focuses on remediation.  Most surgeries are remedial.  Brain Fitness software is remedial.  Having Brail books for the blind is compensation.  So are wheelchairs, walkers, crutches, electronic talkers, audio books, etc.  Remediation is focused solely on building the learning that is limited.  Compensation is focused solely on making sure that the limitation does not interfere in other arenas.

Stephanie explained that Don understood the science, history, english and math curriculum perfectly.  He could not do reading assignments and taking notes was a very energy intensive long process.  He would have compensations so those two limitations should not keep him from moving forward.  We weren’t giving up on reading, there would still be remediation with a reading specialist, but Don would move on to third grade with his peers.

The classroom teacher chose a “reading buddy” for Don each week.  It was a very coveted position.  These were NOT always the best readers, but what better motivation for another student than to be the “special” person who got to read aloud to Don?  Wow.  I was so impressed.  In one action Don became part of the group, had his need taken care of, and the other students benefited too.  In later years other students used carbon paper to make him a copy of their notes they were writing, and in college he gets regular emails from someone in the class with their notes.

Some tools combine remediation and compensation when they assist with a limitation but also contribute towards building that same skill.  There are AFOs which are compensating for a limitation in the ability to use the foot and ankle,  but are also designed to give the child an opportunity to continue to learn.  The Kidwalk walker (dynamic stander) has features like the weight shift mechanism which allows the child to shift weight side to side during movement, and the swivel self centering seat which allows the pelvis to turn from side to side during walking.   These features help children gain skills toward walking independently while the Kidwalk provides the ability to be upright and move for those that can’t stand and maintain balance yet.  Augmentative communication devices (talkers) compensate for a child who can’t yet speak, but also allow for language learning because the child has the opportunity to experience communicating and using nouns, verbs, etc to put communicate thoughts.

 Parenting a special needs child does not come with a guide book.  There is no model to follow.  Even if in the past another child grew up with the same limiting condition(s) it does not predict the path or outcome  for your child now.  Learning is based on experience.  Technology changed that opportunity for experience for my son.  New inventions like the cutting edge walkers and AFOs are changing the opportunity for other children.  New ways of working with the brain are changing children’s experieinces.  Being aware of whether remediation or compensation are used can help parents to see the big picture of their child’s experience and help them to make informed decisions.  Parent’s can question, “is this helping my child have more experiences?”, “is it creating more limitations in the future?”, and “is there another solution which will both remediate and compensate?”.


Brain Gut Connection Part 3

This is Part 3 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.  

The Wheat Story – 1978

I don’t think many know this story about gluten.  In 1978 and 1979, Elinor was working in the lab at Cal Poly as she studied towards her degrees.  Representatives from Monsanto came in with a special request.  

Elinor explained that plants have a strong idea of personal space.  When they start to encroach on each other they stop bearing fruit in that direction.  They need a certain amount of spacing in order for each plant to have the highest possible yield.  

So if there is a huge demand for wheat – and you want to increase production on the land – what do you do?  Monsanto asked the scientists to make it possible to grow more wheat on each acre of land.  The researchers were able to do this by altering the genetics of the wheat enough that it no longer had personal space issues.  Plants could intertwine and snuggle up to each other and they would still produce like mad.  

The scientist warned Monsanto that there were side affects of this alteration.  The amount of gluten in each grain was increased 4 fold. (my apologies this was previously reported as to the 4th power.  Corrected 6/15/2013)  This is a HUGE increase in the amount of gluten in each grain.  Monsanto was told that there was no way of knowing what the impact of this change would be on the consumer.  The whole digestive tract evolved over many, many generations, certainly not in just a couple of generations. It would take 1,000 yrs or waaay more than that for change to happen. Human’s would not be able to adapt quickly for this huge change in their food source. Monsanto wasn’t concerned.  Elinor was.  Elinor said “Monsanto went from producing 5,000 loaves of bread per acre to 50,000 loaves of bread per acre! With our help! Uch!”. 

Chromosome changes and Gluten Sensitivity 

Elinor explained that there used to be a small percentage of people with gluten sensitivity.  Now we are seeing the results of this genetic change in wheat.  Gluten sensitivity causes inflammation and that can lead to leaky gut.  The immune system responds, white blood cells are elevated, the whole system begins crashing with white blood cells attacking everything including the self.  Allergies are triggered due to this cascade of events in the overreacting immune system.

In our latest conversation Elinor told me about a baby she has just diagnosed.  The family had fraternal twins, now 7 months old, who were not developing equally.  One twin, a little girl’s development caused her parents enough concern that they contacted Elinor for her special touch.  Could this be the normal variation in development in babies or was it something else?  What Elinor saw within 45 seconds of her arrival was a baby with a gluten sensitivity issue which had impacted her development.  

When Elinor first met her the little girl was held by her parent and her back was rounded.  Could this posture be because of the way the adult was holding her?  Next, the baby turned to look at Elinor, but she did not grow tall and use her back to turn and look.  It was another clue.  Her dad, who is knowledgeable about fitness, said “She does not have great tone, and when she sits she is curved and going to her left.  When she lifts her arms they tremble until she has them lifted.”  At this point Elinor was 85% sure she was seeing a nutritional deficiency.  Elinor did notice that the baby had beautiful skin, a good indicator of a good quality nervous system.

The baby had eaten 15 minutes before Elinor arrived so Elinor should be able to feel digestion happening. With her knowledge of specific organs Elinor can feel movement when she puts her hands on someone’s belly.  She felt the little girl’s viscera and discovered there was zero movement in the stomach.  She moved to the small intestine to see if that was working and felt nothing.  On questioning the parents, Elinor was told this baby only pooped every other day instead of the many diaper changes her sibling had.  Her feet also smelled “yeasty”, an indication to Elinor that the flora in the intestinal tract had already shifted to “bad” bacteria and yeast.  

Elinor explained that lack of motility in the intestinal tract will cause the contents to become stagnant.  Gluten isn’t the only cause of lack of motility but it’s a strong suspect.  Good bacteria need a flowing environment that is constantly receiving fresh nutrients and oxygen.  Bad bacteria grow in stagnant conditions much like we see in standing water vs. flowing water.  When bad bacteria increase, yeast increases, good bacteria die off and enzyme action is impaired.  This is called small intestinal bowel overgrowth (SIBO)  Without movement the intestinal lining is not as permeable and micronutrients cannot pass in or out of the intestine. 

Within 5 minutes of arriving Elinor was 99.9% sure this baby was vitamin B deficient due to gluten sensitivity.  The inability to be upright and the tremor before finding balance are not normal and directly relate to lack of B vitamin.  The mother asked how could this be when the other twin was fine?  

Elinor explained this case is not a genetic DNA issue, she suspected a chromosome cause.  Chromosomes can be altered in utero and after birth from external elements.  The mom could have been exposed to some chemical, used windex for cleaning, or any number of things we consider normal in our households.  For some reason one twin had damage to chromosomes and the other did not.  This breastfeeding mom loved wheat products and they had recently started both babies on cereal made with grain.  Allergies can be inherited, but with no history of allergies it indicates that this baby probably had chromosomal damage which was causing her to be gluten sensitive.  These chromosome changes can happen any time during a person’s life.  A developing baby cannot tolerate the deficiencies that an adult might be able to, but with an adult will eventually exhibit signs of deficiency as well.

DNA is also involved in a non-genetic way, Elinor explained.  Humans are born with an incredible length of DNA to direct their growth, development and function.  In addition to our bodies being regulated by our OWN DNA we have a symbiosis with the bacteria in our intestinal tract that helps to digest food, and THEIR DNA influences our function.  There are at least a few million cells of DNA in the normal gut flora. They might have more influence on our function than our own DNA does.  When the intestinal tract is inflamed these bacteria can’t survive and the influence disappears.  Instead the bad bacteria an yeast are influencing our systems.

Elinor stated that without good bacterial DNA, without the digestive enzymes, with disrupted absorption, a state of deficiency is created.  Essential fatty acids, the B vitamins, the minerals, and other nutrients are essential for processing in all of our body but, most significantly to a child with special needs, processing in the nervous system and brain.  Read more about this in the next article.

Elinor used the Feldenkrais way of touching and quiet listening to work with the baby’s viscera – such a light touch it almost looks like you are not doing anything.  The mother reported that within 1 hour of Elinor’s 15 minutes interaction with the baby she passed lots of stool.  Elinor’s recommendation was that this mom go completely off gluten while nursing, that she use potatoes and non-grains for her starch, and that the baby stop cereal.  She predicts that in 1 week the intestinal tract will turn around and that in 2 to 3 weeks this little girl will begin normal development.  She will have back the gift of her genetic inheritance from her healthy mom and dad and can grow to her full potential by making these changes.


A combined way that gluten sensitivity and chromosome changes can get progressively worse from one generation to the next is explained with epigenetics.  Epigenetics refers to heritable traits (over rounds of cell division and sometimes transgenerationally) that do not involve changes to the underlying DNA sequence.  Mechanisms can enable the effects of parents’ experiences to be passed down to subsequent generations.  These changes may remain through cell divisions for the remainder of the cell’s life and may also last for multiple generations.  wiki: http://en.wikipedia.org/wiki/Epigenetics

Many genes are not active and methyl groups silence the genes that are not needed.   Elinor explains that environmental issues such as pesticides can change chromosomes and turn these genes on.  It is believed that these genes activated in a mother can be passed down to the next generation.  If each generation is being impacted by the environmental trigger such as an endocrine disruptor that affects hormones, then more and more chromosome changes may be passed on to each generation.  Without a DNA change there can be worsening of conditions that are hereditable.  

Permanent villi damage from gluten sensitivity

 Ellnor explained that once the intestinal tract has healed and SIBO is replaced by healthy bacteria people with as many as 70 allergies can go back to having the one or two that it is usual to have.  So, first, you need to remove the offending agents, then replace with good flora and start the healing. Now, that’s reliable! says Elinor.  You can also add probiotics to replace the flora and Elinor recommends the 500 mg of L-Glutamine for healing intestinal walls.  Unfortunately, the villi, the finger like projections lining the intestine which absorb nutrients and send them to the blood stream, cannot regrow.  Once they die there is reduced ability to absorb.  Elinor stressed that it is important to respond to signs of gluten sensitivity to avoid the condition worsening.  

 If gluten sensitivity is suspected Elinor suggests taking gluten out of the diet for awhile. Those with gluten sensitivity may be able to tolerate small amounts in time.  People with Celiac’s disease can never have gluten without further villi damage.  Elinor’s son was able to eat small amounts of gluten and test negative for gluten sensitivity in his blood tests in his teens.  College years brought more pizza and other things with gluten and his blood tests came back positive for gluten sensitivity.  He was able to revert to a healthy blood test by controlling his intake again.  Each person’s system can change based on what they are being exposed to.

Both constipation and diarrhea are indicators of an intestinal tract in distress.  Elinor said, an occasional episode might have a simple trigger but chronic constipation indicates a metabolic cause.  The first step is to eliminate gluten from the diet.  500 mg of L-glutamine given daily will help to heal the gut.  Within 3 to 4 days it will stop the diarrhea.  It comes in powder form and can be easily added to food.  That dose can be given to anyone from 50 lbs to adult.  If your child is less than 50 lb experiment with less and increase the amount until diarrhea stops.  When the gut calms the immune system can stop being so active and there will be a huge increase in the absorption of vitamins, minerals and nutrients.

There is a strong connection here for children with special needs.  Immune system activity and intestinal absorption is directly tied to the nervous system and brain.  

Future articles willI be about the prevalence of MTHFR mutation and it’s impact on children with special needs, spasticity in the gut and visceral work,  constipation and seizures, and Elinor’s recommendations for nutrient supplementation.



Brain Gut Connection Part 2


Here is Part 1 of my understanding of the impact of metabolism and nutrition for special needs children based on my conversations with Elinor Silverstein.

In preparation for publishing this article I spoke with Elinor again today.  She is so excited to have this information being sent out to more parents and professionals. 

I worked with a young man who had severe torticollis, dystonia, apraxia and autism. We completely got him on the road to feeling better using this nutrition!” — Elinor Silverstein

A little about how Metabolism works

The process of absorbing, converting and using nutrients is metabolism.  When someone has a metabolic condition some part of the process is not working properly.  It could be the wrong food coming in, absorption being blocked by inflammation,   missing components for conversion, or inability to use the nutrients at the cellular level.

Elinor explains, ideally we would eat what we need and all food would be utilized for the keeping us at peak health and ability to do what we wish to.  Reality can be somewhat different.  Some nutrients are utilized in the form we take them in.  As long as they are actually in our food in adequate amounts and our ability to absorb them is functioning well they are simply put to use.  

What goes in

There are many articles available about the changing quality of our foods.  The nutritional value of our food has been altered in order to produce greater yields.  I’ll talk more about that later when I tell you what Elinor knows about the changes in gluten in wheat.  Just know that you can’t take for granted that the food you buy has all the nutrients you expect it to.

What gets used

Elinor explained what can happen when the intestinal tract is not healthy.  Absorption happens through the intestinal wall so it’s very important that it be in good shape.  Inflammation has a huge impact on the lining of our intestinal tract.  Inflammation is not being sick or injured.  It happens when our body believes the immune system needs to kick into action because something is there that should not be there.  An immune response brings white blood cells, and extra circulation.  When this happens in response to something we chronically eat the intestinal walls can begin to swell, villi that normally absorb nutrients become inactive or damaged, and over time, there can even be perforations in the intestinal wall leading to leaky gut syndrome.  Guess what? MORE stuff for the body to react to.  Nutrients are NOT supposed to be in the body cavity. Food allergies begin to appear for whatever is leaking into the abdomen.

More complex processes

The second way that nutrients are utilized is when they are absorbed and then converted through an enzyme action to become something useful, said Elinor.  If there is no enzyme then the conversion is not possible.  Sometimes nutrients are working together synergistically in these cycles to produced the required outcome.  The products of these cycles are not optional parts of our systems – these are necessities for further processes and for good health and functioning of all the cells and systems in our bodies.  

What goes out

Then there is the clean-up crew.  When these processes of conversion or the actual use of nutrients happen it generates some byproducts.  Byproducts plus toxins we consume or come into contact with through our lungs or skin all need to be eliminated from our bodies. We have the liver, kidneys and skin for this.  The liver uses methylation in the transsulfuration pathway to process out toxins.  (I promised Elinor I would use that sentence.  Google it for many links to more information.)  If toxins are not processed out of the liver they immediately exit the liver in to the blood stream, which in turns transports them to the brain and other tissues through the body, explained Elinor.  Toxins such as heavy metals deposited in the brain, heart and muscle tissues create the conditions that doctors have names for like high blood pressure, peripheral neuropathy, diabetes, and heart disease. 

The magic of methyl

What it means to you and I is that there is a good chance that the methyl form of supplements like B12 is useable while the other forms just make your blood tests look good and don’t go in to the cells.  More about that when Elinor discusses supplement recommendations.  

Disruption in the ability to produce the methyl piece are caused by a genetic anomaly.  It used to be considered rare.  Then it was considered more common place.  Elinor has tested hundreds of people for this gene anomaly and ONE did not have it.  The rest did.  We will go into more detail about the impact of this genetic change.

Next articles

Next I’ll cover gluten, supplement recommendations, genetic testing, and their relationship to children with special needs with disabilities such as autism, Torticollis, dystonia, ataxia, and cerebral palsy.




The Brain Gut Connection

Dr Hyman is a functional medicine doctor who writes repeatedly about the impact of metabolism on health.  He helps many children and adults by addressing this foundation and making sure that their body has what it needs with supplements and tests to identify what is NOT working.  Tests for specific genes shifts can explain why some people are more likely to have deficiencies or mitochondrial disorder which affect their ability to produce energy or detoxify.

Here’s what Anat Baniel has to say about Dr. Hyman’s insights on her Facebook wall:

Let’s hope that more doctors will start seeing the individual!

“My work has always been based on getting the person and their entire system to work better, not on “treating pain” until it goes away. Someone may walk in with back pain and just want to make it go away, but in reality what needs to happen is that person’s whole system needs to find a better way of working as a whole in order to find solutions that don’t cause pain. Every thing that happens to a person is intricately linked to everything else about that person — which is why doctors should treat the person, and why I have always had a holistic view of people, their health, their needs, and my work!”

A New Era of Medicine has Finally Arrived

Dr. Hyman on nutrition and Autisim


Here is an article with more detail about how this perspective can really impact the Autistic condition.  These ideas about necessary nutritients and metabolism does not just apply to children with autism.

Can Autism Be Cured?


 Elinor Silverstein on metabolism and nutrition

I’ve spoken extensively with Elinor Silverstein about this relationship between brain, body, and metabolism.   Elinor’s knowledge comes from her background as a scientist with Biology and Zoology majors, and Pre-med and Pre-vet minors from Cal Poly, training as a practitioner with Moshe Feldenkrais,  and her continuing study of nutrition, genetics and visceral health.  She has a unique ability to help children with special needs and is a huge resource for families and practitioners. Elinor spoke in detail about the gut-brain connection, the importance of methylization, and her nutritional recommendations.  I will be posting articles about our conversations soon.



The beginning of our journey with our son who has CP

When I found out my son had cerebral palsy I had no idea what it was. I happened to be in the intensive care nursery having a quiet chat with my husband when two doctors walked in. Don’s little incubator was one of their stops. They didn’t know we were attached to him. One said to the other “oh yeah, he’ll have cerebral palsy”. Wow. We went across the street to a restaurant and stared across the table at each other. I remember asking Don’s dad “do you know what cerebral palsy is?” and he said he did not, but he had a friend in grade school who had been in a wheel chair and passed away after a few years. 

These were the days before internet so we had no ready resource to go to for information. You can bet we cornered Don’s pediatrician on his next visit and asked him what was going on. But we didn’t get much information. He said “They never should have said that. We have no way of knowing how things will turn out for Don”. That satisfied us in the moment and we eventually took our son home to enjoy his first months.

Babies don’t do much at 1, 2, and 3 months. When awake he was alert and seemed to be doing what my daughter had done. Yes he was a little stiff and we could successfully prop him up in standing…what can I say? We were new to this. I remember being heartbroken that I had to let him cry to sleep the first few weeks, but no matter what I did to comfort him I wasn’t helping. But lots of babies have trouble going to sleep, right? Now I know these are clues to damage in his brain.

At three months our pediatrician was not happy that his hands were still fisted tight with the thumbs inside. No diagnosis, but enough concern to send us to a Kaiser pediatric physical therapist. We learned to prop him up on his stomach. He was also arching back so well that he could roll himself from his tummy to his back. At Don’s 4 months old visit the pediatrician said “Well he’s not rolling over, of course”. “Yes he is” I was proud to say and Don demonstrated. That’s when we ended up referred to the state agency, California Children’s Services for therapy.  Ok.  Arching is NOT normal.

That poor therapist that did the intake for Don. She tested, wrote up her report, and called me in to let me know the results. When she said he had cerebral palsy she had no idea that I had never been told. Cue tears and LOTS of questions. She excused her self and practically ran out the door to get her supervisor. I remember asking “will he walk” “will he be able to play and have fun?” “will he live very long?”.  We were scheduled for occupational and physical therapy to start the next week.

Our first appointment was with two of the most amazing women, Mari Nomura and Christine Wright. These two observed my son and marveled at his intelligence just by seeing what he focused on and what he had accomplished so far. Yay! Finally something positive. Little did I know what good hands Don was in. These two led Don to be the youngest little guy ever to have ankle foot orthotics, a talking board, a walker, and a power wheelchair. He had all these things by 2 years old. Their can-do attitude modeled for me a way of approaching disability that formed our future.

Yes, I was majorly stressed, to the point it eventually ruined my health. It’s difficult to say I would do it any different. I would wish for other parents to be able to slow down and enjoy the moments more. To take more breaks, and come back refreshed. But it feels like war. I was battling the limitations imposed by the disability, the school district, the doctors, and the finances. I was described by someone as a mother bear protecting her young. When you are at war you rally all resources. The problem with this war is that it went on for a very long time.  My personal resources were eventually exhausted. Thank goodness not until my children were almost grown.

I am so happy today to see both of my children grown and enjoying the lives they have chosen to live. That is the biggest gift I could give to them both; to try to make sure that they got to choose their paths. They both gained and I did too. I learned so many things along this journey and now have a career spending my time doing something I love. 


Canine Companions for Independence

My son received his first dog when he was about 10 or 11.  It changed our life for the better.  Tarella was with him for many years and he now has his second dog Lee.  Tarella lived a very long and happy life and recently passed away.  Here is a repost of my message saying goodbye.

Tarella – A special tail – Saying goodbye

There is nothing more clear and direct than the love of a dog. Tarella lifted the hearts of everyone she met from the time she was with her teenage puppy raiser, through her journey with Don, to her retirement with Don’s Dad and Lisa. She was always happy, always connecting with people, and everyone could feel it.

I remember arriving home from the team training at Canine Companions and letting her loose in our house for the first time. Two weeks of intensive human training (she was already an expert) had showed us what a professional she was – always eager to understand what she needed to do and thrilled to work. We didn’t realize there was switch, a button to trigger, and that exuberance would be let loose in our house with the simple word ‘release”. We were wide eyed as we watched her bound around indoors and outdoors and life was never the same again.

During our time living together, myself, Jamie, Don and Tarella, we trained more and more skills. I think she had close to 100 commands. She could take off Don’s sox and jeans, put them in the laundry, and run the wash – oops not that last one. But the “sock” command and “laundry” command were a couple of her favorites. One night she went into action a little pre-emptively. I turned around just in time to see Don airborne as she jerked so hard on his jeans that he sailed through the air and landed on the ground. We fell all over ourselves laughing. I’ll never forget sitting at opposite ends of the house teaching her to bring things to each of us. “Go to Mom”….”HERE Tarella!” and I could hear the toenails as she ran through the hallways tracking me down to deliver the pencil unmarked and with just a tiny bit of spit. We knew she wasn’t always angelic, Jamie’s hair ties and stuffed animals paid the price, but she was our angel. She brought us together, brought us into the amazing group of people that make up Canine Companions for Independence, and was there for Don every minute of school, rest, illness, hardship and joy. Life was hugely improved having her alongside him.

Don’s goal was to have permission to be completely independent – to not need any supervision with Tarella. He was one of the only CCI recipients to ever go back in and UPGrADE his dog’s classification. They proudly graduated with full service honors when he was old enough to qualify. It was a testament to their connection and his dedication to keeping her training high level.

It was very tough for Don to decide Tarella was ready to retire. She’d taken to letting him know she clocked out at 5pm, but he could work with that…it was the fears that came with losing her hearing and eyesight that made it time. Riding in the van was no longer a treat, it was something that made her shake with terror no matter how we tried to make it ok. We even fed her dinner as we were driving. Nothing helped. So, Don petitioned to CCI for a second service dog and prepared a retirement home for Tarella with his Dad. There was a brief glitch when she came back to him again, then he graduated with his second dog, Lee. A few years ago she settled in to retired life with Jim and Lisa. When they bought a vacation place by the lake (where Jim spends most of his time fishing) she fit right in. I heard stories of her riding on the golf cart and running through the woods. She had the prefect doggy retirement. Lots of love and fun. When ever Don would come around she’d position herself right next to his wheelchair. If Lee was there she’d just take the other side. He had bookends. But she was just as happy in retirement to grab her favorite stuffed toy and settle on the bed by the fireplace as he left.

Their last walk together. She’s wearing Lee’s vest on an overnight at my place.

I was the back-up caretaker person. When we had weekends together Tarella came to me all shampooed (and shedding) and I gave her lots of ABM lessons (body work that upgraded her brain body connection). We continued to bond with long walks that now involved lots of sniffing instead of trotting along at high speed beside the wheelchair. One visit she came to me listing to the side because of a mini-stroke. We worked all weekend and she went back home back in balance again and able to climb stairs and be comfy. Steady exercise, high quality diet, EFAs, short toenails, and her own ABM practitioner- the secrets to a long and healthy life.

Jamie said we should have taught Tarella sign language before she went deaf. She’d look at people speaking to her and try to guess what they were saying. From out side the car Jamie would dance around gesturing wildly for Tarella to lie down on the car seat and wait patiently for us to come out of the store. Tarella got it. I’m not sure who trained who on that one…. Some said the hearing and vision issues seemed to be pretty selective. Oh well, she was entitled. She worked for 11 years and earned lots of perks in retirement.

Throughout it all she was a joyful happy soul. She changed all of our lives for the better. Yesterday I got the call. She was gone. Tarella will be missed by everyone who knew her. Her name in the aborigine language of Australia….journey’s end.


Creating a positive social environment for your child with special needs

We were so fortunate to have some wonderful teachers in Don’s early years. He started pre-school at 3 years old in order to learn how to use an AAC device. AAC means alternative augmentative communication device or as we called it, the “talker”. I chose his school because Cheryl Garavalia, the preschool teacher, had obtained a grant to pay for talking machines and training so her students could learn how to use them. Before he even entered school Don was tested and his device had been ordered.

So began our journey into academics. My goal was to have Don be able to stay with his peers. My feeling was that to be part of society he needed to learn about friendships and keep up with his social skills. The best chance to do that was to be right in there with children his age. Physical skills, and even academics could happen other places or at later times, but there was no replacement for the built in school environment for interacting with friends.

anat-baniel-method-therapy-special-needs-childrenI felt so strongly about this that when Don started at his special preschool where he would learn to use the talker and computer (at 3 years old!!!) I also started him at a regular pre-school my daughter had previously attended. Two afternoons a week he went with kids with NO special needs so he could get the best of both worlds.

Once he got into kindergarten the talker and a computer allowed him to complete his schoolwork fairly independently and he could socialize and participate in all the class activities, recesses, field trips, and fun.

I’m going to post a series of articles covering our school experience starting with these three:

How did we talk about Don’s disability?

How did communication happen?

What happened when he could not keep up with the academics? (Remediation vs. compensation)

Part 1 – How did we talk about Don’s disability?

We realized in the regular pre-school that other children had questions that needed addressed. We quickly learned that if we were pro-active and open to educating others it was a much more positive experience than waiting for the dreaded “what’s wrong with him” question. I  learned early on that I was willing to push myself way out of my comfort zone if it was going to make a difference for my child.  So, even though I was not an extroverted person, I began walking around with a smile, meeting people’s eyes and welcoming contact from complete strangers. Trips through the mall usually included at least 2 or 3 stops to chat with well-meaning adults or curious children. On bad days I would still charge along with my eyes down, moving fast so I wouldn’t see the looks and stares – but if I could open doors for Don by being welcoming then I was going to do it, most of the time. I later learned that this became a model for his sister and for Don to follow as they dealt with these issues independently as they got older. It was worth the effort.

So – smiling, saying hello – it didn’t eliminate the “what’s wrong with him” question but I’d grit my teeth and smile again and say “nothing is wrong at all. Are you wondering why he is in this wheelchair?” Most children’s experience of wheelchairs and medical equipment is limited to medical settings and elderly persons. They often wonder if someday they might be in this situation too. When Don was really small I’d just say “When he was born he got a hurt in his brain so he has trouble telling his muscles what to do. The wheelchair makes it so he can get around like you do with your feet when you walk”. At 2 years old my son had his first power wheelchair so most kids thought that was pretty cool. I even heard quite a few times – “Wow mom – I wish I could have one of those”. My internal dialog responded “Grrrrr. No you don’t”.

Having the manual chair or the power chair really made quite a difference. Adults were clear that something was definitely special. Before we got them Don used a stroller with extra support I made by covering foam with fabric. In his stroller, or when I’d run in the store with him carried against my shoulder, I could feel that they weren’t sure what was different. The fact that he couldn’t lift his head once caused a gentleman to scold him for “making his mom carry him when he was such a big guy”, and often people would say – “oh, is he tired?”. Once we got the two chairs they knew that they were looking at a special situation and instead of feeling the long looks as people tried to figure things out we found that many people would say hello. That’s how I got started being the disability ombudsperson.

What helped was having something positive for well meaning people to comment on. It might be cool sunglasses, stickers, the latest nike shoes, that cute levi jacket, a baseball cap, or an eye popping bright yellow wheelchair. Later when he was old enough it was Don’s service dog Tarella. She was a gorgeous golden retriever/lab cross. People want to make contact in a positive way and if you give them something to relate to it gives them a conversation starter. The dog was such an attraction and source of envy that we had to carry post cards with her picture to give out just to gracefully move on from the crowd that often formed.

When it was time to move into a mainstream kindergarten class we got great advice from the pre-school teacher. We made a video and she or I would go talk to the children about what to expect when Don joined them. We asked Don how he wanted his disability to be described. Out of three or four choices he chose “I have an injury in my brain that makes it hard for my brain to talk to my muscles.” Kids didn’t have too many questions but it definitely helped them t welcome him the next day.  

In first grade Don was up in front of the class and we presented together. No video was needed and they had a lot more questions. I got a chuckle out of “how does he sleep”. I could tell that they did not know how to picture him out of the chair. I asked him what he wanted me to say and they got the idea that he could make decisions like that.  We talked about how much he liked pizza, what his favorite cartoons were and things that let them see that he was just like them, only he couldn’t move the way they could. One of the things I told them was that he had some different ways of communicating and we demonstrated what his “yes” and “no’ sounded and looked like. I challenged them to ask him some yes/no questions right then so they could see how he could answer. Later, I heard some say “do you want to play with me? yes or no?” It was a very fun way to launch him being part of things.

As Don got older there were fewer children at school to introduce to him so most of our talks about disability became at the store or park. I’d watch for the timing, and if a child looked like they were trying to figure Don out I’d ask them if they wanted to ask about why he was in the wheelchair. Most said yes. I’d give a sentence or two and offer some suggestions for how they could play with him.  I was able to help Don be included and overhearing the kids later say “Mom, I played with him and he’s my friend” really made my/our day.  It helped that we were always the ones with the really cool sand toys to share.

I noticed as my children grew older that they worked together to continue to assure that Don had a place in any group. Though she hated crowds his sister even accompanied him to high school dances so he wouldn’t have to have an adult hanging around. It has been a lot of effort to extend ourselves so much but very worthwhile.

Don is by nature far more sociable than me, and he feels completely comfortable now at college age going into a group of people he doesn’t know. As a young adult he doesn’t feel much need to explain himself but he is very articulate if he ever has the need to.



Traveling for work

It’s been such a pleasure to meet so many families and children.  I am endlessly impressed   with the dedication parents have for finding solutions for their children with special needs.  I remember being told that I should just go along with what the teachers and other professionals were telling me was best for my child. I even recall a doctor telling me not to listen to anyone with “new” ideas because they were just preying on parents with special needs children.  The message they were sending, “There is no hope”, was one I was not willing to hear. They wanted me to believe that they had the answers and my son could achieve nothing more than their predictions.  Well, I am so fortunate that I also had people with vision, intelligence, and love giving me concrete ideas to make a difference for my child.  It was my job to keep searching, to follow through, to be his advocate and educate myself about what my son needed in his life.  

The parents who find solutions outside the mainstream are those who are not willing to settle.  They are questioning and searching for new or more effective options.  If no one ever did, there would be no new discoveries and no better solutions.  No wonder it is such a pleasure to meet these proactive, intelligent parents.  I feel quite fortunate to have the opportunity.

This year I travelled to Copenhagen, London, and Saipan multiple times.  When a family has hosted my visit, gathering 2 or 3 more interested parents to share the costs, I am able to show and speak locally about how neuromovement (ABM, Feldenrkais, Relfex) can help special needs children.  Word spreads quickly and I never have spare time to explore the sights.  It’s not a tough choice to make because my memories of the kids learning and growing and the parents so open to learning is so satisfying.   There are requests for longer visits, and waiting lists getting longer and longer.  Maybe some day I’ll be able to add some extra days to relax and enjoy – but you know what?  There is a good chance they will get filled with giving more lessons.

I’ve  worked in these locations with about 25 children.  4 charming kids with Autism or Autism Spectrum, 6 children with Cerebral Palsy, 2 with hemiplegia from stroke or other causes, and many other conditions.  Along the way I’ve added on lessons for a professional bowler, an elite tennis player, an adult relative with stroke, 2 pregnant mom’s, and 2 infant siblings who received well baby lessons.  So much interest has developed in Denmark with families with special needs children that there is now a Scandinavian Neuro Movement Center organized to make more opportunities available to the families in Denmark, Norway, and Sweden.  I’m thrilled to be a part of what is developing.

My experiences in life have brought me to this point.  I am able to do what I do because I raised a brilliant young man with cerebral palsy, because of my time in the medical nursing field, because of my Feldenkrais practitioner training with Anat Baniel, the 2 year advanced baby seminar that we begged her to teach, and all the years supporting the growth of the Anat Baniel Method.  I took classes with Dr. Masgutova, and I constantly learn from my colleagues like Marcy Lindheimer, Suzi Marks, and Syvlia Shordike.  

I look forward to more travels to new locations meeting families and children and being able to make a difference in their lives.  I am a very fortunate person to be able do what I love to be doing.  



How babies shift their awareness

Feldenkrais-Method-practitioner-for-childrenBabies have the natural ability to shift the focus of their attention.  The shift can be from one object to another, or one sense to another or even from focusing internally to focusing externally.  Internal focus gives them the ability to gather information about how they experience and feel an action.  External focus gives them information about the environment, whether it is the surface they are on, mom’s face, or the music they hear.  Being able to shift attention is imperative for learning.  Enhancing this skill is a big component of Anat Baniel Method or Feldenkrais work.  Learning increases exponentially with increased ability to focus on how it “felt” to do something.  It’s important to focus long enough to notice the details which will make it possible to create the experience again.  

Many children with special needs have a disruption in their ability to shift attention.  What we think of as multi-tasking is the ability to very quickly shift between more than one thing. If this process happens too quickly a child won’t dwell long enough to take in enough information to process and learn as in attention deficit disorder.  If it does not happen enough children will not be aware of anything except for what they are intensely focused on.  A child with autism might not be able to shift attention away from a toy, or a baby with internal discomfort might not be able to shift to receiving external information from the world around them.

A healthy brain will be able to prioritize incoming information, to choose which things to attend to in the moment.  When you drive down the road, if you spent as much time seeing the flowers and the houses going by as you do the road you wouldn’t last long.  You pay attention to the cars around you, signs and signals and the roadway as a priority.  The ability to prioritize is one of the things that can deteriorate with age and which is missing in Autism and Autism Spectrum disorders.  Brains can improve this skill through improving the timing of shifting attention, and through noticing greater distinctions.  Dr. Merzenich’s computer programs for adults and children create that experience.  So do ABM practitioners.  

Here’s a video that intrigues me.  In 2 minutes you can see 4 hrs of baby activity.  Notice how frequently this child shifts attention.  The world is explored with hands, feet, mouth and body.  Toys are not the only experience.  Watch how the chair, the cardboard box, the shelves even the wall are part of his experience.  



Book review – Closer to the Light – Learning from the near-death experiences of children

Neil Sharp hosted a wonderful Sunday afternoon in San Francisco this weekend and it gave me the chance to meet another mom.  Our talks reminded me the impact reading Closer to the Light by Melvin Morse, M.D. had on me.  

I had a good friend who would share books with me.  She gave me books on angels, on stress, and eventually this book about near death experiences in children.  I was so struck by the repeated evidence of the same phenomena being recorded with such great similarity from many many childrens’ stories.  

Growing up I did not have formal religious education.  My parents believed in letting their children be free to form their own beliefs.  I visited a few different churches as a teenager but was not drawn to any of them.  The structure and beliefs seemed far more ambiguous than science, logic and facts.  I moved on and my life proceeded until there I was in my 20s with a disabled child and lots of questions about why, but with no real spiritual support.  This book was written by an M.D. and simply presented the experiences and the author’s journey to discover what was occurring during NDEs.  Have you heard the expressions “out of the mouths of babes”?  That’s how I felt as I read.

By the end of the book I realized  – all children with Cerebral palsy have had a near death experience.  During birth cells had enough oxygen deprivation to die and create permanent change.  As a parent of a son with cerebral palsy I was comforted to read Morse’ observations when he revisited some of the children as teens.  He found “these children have become special teenagers who have excellent relationships with their families.  They share a maturity and wisdom that is humbling”. “These children have grown up to become remarkable teenagers…positive and upbeat kids with a joy that is inspiring.” (pg165-7).  I love working with children with cerebral palsy.  I find these observations to be true in my son, and in those I work with.

This is a book about Morse searching for answers using the medical model for evaluating situations.  He presented so much anecdotal information and was so careful about gathering his data that I could not set this information aside.  The next  step for me was to realize that I could choose to believe there was something beyond this reality we are living in this moment.  I realized that knowing there was never going to be a decisive answer I could choose to believe what gave me comfort.  Since that moment of decision the strength of what I call “my faith” has gotten stronger and feels right.  It gives me peace to feel that there is a purpose for us being here and reasons why things occur in this life.  

I feel I changed as a parent and advocate for Don with this decision.  People commented I seemed less stressed – that I was calmer in critical decision making meetings about my son’s services and future.  Reading this book created one of my turning points in this journey of raising my children.