Tuesday, October 21, 2014

What is the Anat Baniel Method and How does it work with Neurodevelopmental Therapy?

I used Neurodevelopomental therapy with Jett and have gotten great results. (See my Therapy page for details.) So, when I had Jett's baby brother, Oliver, who suffered a brain injury shortly after birth, I naturally went to ND. Well... because of Oliver's PSTD (Post Traumatic Stress Disorder) and because of his spasticity (muscle ridgeness), I couldn't really manipulate him as needed for some aspects of his ND program.  (It made him tighter and angrier.) Instead, I had to look to the ABM and MNRI to get him calm enough and loose enough to continue with ND.

I haven't yet tried ABM or MNRI for Jett, but am interested in exploring the benefits of ABM for our children with Down syndrome. That brings me to Rashmi Sundareswara, a lovely mom with a child with Down syndrome who uses both ABM and ND when working with her adorable and smart, Teyjas. She has graciously taken the time to write this beautiful piece for us....


You can see a World in a Grain of Sand
And a Heaven in a Wild Flower
Hold Infinity in the palm of your hand
And Eternity in an hour

    -William Blake


Have you ever experienced wonder in the midst of a mundane or an unpleasant experience?  If so, then it’s probably because you stopped to pay very close attention, even if just for a few seconds, to the beauty of it all – the process of unfolding, of discovery.

That “attention” or “awareness” is the one of the nine essentials of the “Anat Baniel Method” (ABM) [Baniel, 2012].  When combined with the other 8 essentials, it can be very powerful in transforming our movement, our thinking and our lives, wherever we are at.  The power of the ABM philosophy (as well as mindfulness in parenting in general [Zinn, 1997]) has been vital for our family.  It gives us a way to see our kids for who they are and not through our veils of fear and anxiety.  Science is now validating that ancient practices of mindfulness meditation can bring about beneficial effects on attention and emotion regulation, both of which are important for cognition[Kilpatrick, 2011, Kang 2013, Wells, 2013, Zeidan, 2010].  In addition, studies show that it can delay the progression of Alzheimer's, probably due to its influence on the brain's attentional and emotional networks.

The brain longs to find patterns, make sense and “create order from the chaos” [Baniel, 2012] it sees around it.   Our brains are endowed with billions of neurons and trillions of connections for the purpose of interpreting stimuli from our sense organs.  What we make sense of depends on what we bring our attention to.  During an infant’s first couple of months, there is a lot of differentiation in the brain – straight lines vs curves, mother’s voice versus father’s voice, mother’s smell versus dad’s, straightening out a knee versus bending, etc.  In all this, a baby is actively moving and sensing with attention (Essential No. 1) and often doing so slowly (Essential No. 2) to get new input for feeding its hungry brain’s need to differentiate.  The brain is craving “variation” (Essential No. 3) and hence the little scientist is motivated to gather input by experimenting with different ways of bending that knee or moving the pelvis.   As the baby grows, the differentiation becomes more subtle (Essential No. 4) for example, mama singing versus talking.   Imagining (Essential No. 8) herself being picked up when her mother comes near, a baby can replicate the sensation by activating the strong muscles in her pelvis.  This skill, with enough practice, turns into another skill of rolling over – something a baby practices over and over because she is so enthusiastic about it (Essential No. 5).  Throughout the child’s life, learning is taking place as long as the child is motivated and aware (Essential No. 9), which keeps the child’s  “learning switch” on (Essential No. 7).   Freeing ourselves from rigidity and having flexible goals (Essential No. 6) for our children gives them the freedom to experiment with their movement and their thinking and can help them become curious, independent, motivated, gritty and happy individuals. 

These nine essentials, brilliantly described by Anat, are what the “typical” brain does naturally.  When a child has special needs, one or more of these essentials is not functioning well.  What the Anat Baniel Method (ABM) and concepts in the book, Kids Beyond Limits (KBL) [Baniel, 2012] aim to do is bring back the missing essential(s) into the movement or thought pattern that is compromised so that learning can be improved. 

The ABM method imparts a deep respect for the “process” of development and discovery by the child rather than milestones in and of themselves.  By focusing on the process, we as parents are present to the wonder of our child’s current abilities rather than what “should” be.  When a learning process unfolds naturally, it creates a rich web of connections in the brain that are intentionally redundant.  Redundancy makes sure that the brain learns many ways of doing the same thing.  Imagine a spider web that is richly woven.  This rich web makes sure that there are many ways to get to the same spot.  Redundancy is everywhere in nature – from the blood vessels in our brain to the rich network of veins on a leaf.   When something gets broken, redundant networks make sure that the job can still get done.  They provide resistance to damage and allow space for creativity.

Neurodevelopmental programs provide activities that are geared to help the child’s developmental process as well and/or to address sensory needs (in addition to a whole host of other programs like reading, math, etc).  Many ND programs have a list of activities to be done with a certain frequency, intensity and duration.  In several activities (especially those for younger children), the goal is to provide input to the child’s brain by the parent since the child’s muscle tone or sensation/perception system is not allowing them to generate the input for themselves.  We do NACD with our son, which also wants the “process” to unfold by itself – by helping to develop areas such as muscle tone, oral awareness or auditory processing just to name a few.  They have techniques that go beyond the original Doman-Delacato method that they are based on and are also continuously evolving in their quest to help children achieve their fullest potential.

There are many who feel that neurodevelopmental (ND) programs are at odds with various aspects of the nine essentials of the ABM method.  So can the two be reconciled?  I believe so and I hope this blog entry can help you find ways to add an ABM flavor to whatever ND program you might follow.  I would also highly recommend reading Anat’s book, Kids Beyond Limits for a thorough explanation of the nine essentials and taking classes with an ABM practitioner.  This short blog opinion is in no way doing justice to the rich information that is contained in the book.  In addition to going into detail about each Essential, the book contains lots of scientific studies validating the nine Essentials.  I am extremely grateful for Anat and her work, as well as her practitioners, Marcy Lindheimer and Brendan Elms, who have all helped my child (and myself) and thousands of other children.  My heart was palpitating with excitement when I first read her book – every sentence is exactly in line with my background and interest in mindfulness.  I was so excited that there was someone out there who validated the importance of mindfulness for raising a child with special needs.

For me, doing the suggested activities in our ND program while keeping the ABM principles in mind required a shift in my thinking.  I had to be creative and attentive, rather than do them on automatic pilot .  Even though I may only get in 30%-40% of a day’s frequency (hard enough for a working mom who also wants her son to primarily play after he returns from his wonderfully stimulating preschool), what is important to me is to have done it mindfully and with my son’s attention (BTW, the ND term “intensity” can in some ways can be defined as attention too).  Sometimes, the stress and the anxiety of not getting through a program can deter us from doing it with mindfulness.  The beauty and rich possibility of the present moment with our child will dissipate very quickly if we let concerns of the future, our anxiety or our schedules take over.  And most unfortunately, this is what our children too will learn – our anxiety and stress.  I am guilty of this every day, but I am getting better (it’s a process, right?!).  However, I want to parent for the long-term – I want to have fun with my child during these crucial, formative years but do so in a productive manner. 

For the remainder of this discussion, I will use examples of four activities that are quite common to most ND programs for kids with Down syndrome: deep pressure on the limbs, the sit-stand sequence, oral stimulation and auditory processing.   For each one, I’ll describe how I do it while keeping the nine Essentials in mind.

Deep-pressure/sit-stand

This activity in an ND program is suggested to increase the sensation in the low-muscle tone child.  It comes with a certain daily frequency, intensity and duration to normalize the tone.   I wondered when my son would get bored with it and not care for it anymore.  I mean, honestly, if I was deep-pressured or tickled 6 times a day for weeks on end, would I still be tickled?  Wouldn’t I become desensitized to it?  But I have normal muscle tone and my son does not, so I do not know if he will have the same reaction.   However, I do know how I can make sure that my child is paying attention to it.  So, I use the Essentials: “awareness” and “movement with attention” not just for my son, but for myself as I interact with him.  When I apply deep pressure, I think of it as way of discovering him, as if the first time.  “Hmmm…. This is what his toes feel like – his little toe is just as cute as when he was born! …. Interesting, I had not noticed before how his thigh skin is so much softer than the skin on his calf.”    My brain was developing subtleties and hence becoming more differentiated too because I was not on “automatic pilot”!  He too, seemed to be enjoying the activity more because I showed him so much more attention.  That is one of the best gifts we can give our children – our full attention.  But wait!  He soon got tired of me doing that, so then I had to think of other ways of holding his and my own attention.  I started drawing alphabets on his legs and he was so excited to guess what they were!   Some other suggestions from the book are to pause when you are about to start a movement with him and to support and exaggerate the movement.   For the sit-stand portion of the activity (this is where the one or more parents help the child pull-up to stand from a sitting position) I also tried to exaggerate the movement of pulling him up to stand.  I asked him to feel how strong his legs were – and he used to laugh.  I changed up the way I said “strong” to a deep, deep tone.  I varied what he would be sitting on when he was pulled up to stand.  Sometimes, the platform he was sitting on was only an inch high; sometimes, it was 5 inches high.    I would sometimes give him only one arm to hold onto, sometimes two.

I would vary the spacing between his left and right leg, putting one or both feed on the platform, sometimes even let him get close to falling … you get the idea.  Variation.  It’s important – the brain thrives on it.  My brain thrives on it!  I needed to think of ways to change it up to prevent myself from going on auto-pilot.  That is something I want to avoid for myself and my son because that is end of useful information for the brain.  We want the information to be as novel as possible because that means new synaptic connections in the brain.  The end result is hopefully multiple ways of completing a task from a host of starting points. When you see your child successfully learn to use a shape-sorter, for instance, you will probably have noticed that at first the child was experimenting with all sorts of incorrect orientations of the shape through the sorter until the right one clicked.  Having learned this way time and time again probably meant that he could fit the piece correctly no matter what orientation it started in his hand.  That is the idea here with “variation” and can apply to almost any skill your child learns.  I’ll end this section by saying that it had come to a point where my son would beg me to do “sit-stand” with him!

Patterning? 

As far as the activity of patterning goes, I’ve wondered why it works for some kids and some do not.  I think the key is “attention.”  Here are my thoughts:  ABM says that stimulation, for example, given by the parents, by moving the child’s limbs for them – patterning – is not the same as information to the brain.   What does this mean?  This means that as long as the child’s brain is not paying attention to the particular sensation, then it’s not information to the brain – it is just stimulation.  Attention to anything – even for us adults – is what transforms outside stimulation into usable information by the brain.  How many times have you walked in your neighborhood and discovered some aspect of a house (or an entire house!) that’s always been there and you have looked at a thousand times before?  We need to have our children feel, be aware, interested and excited about the activity – then the attention to the movement happens – and the connections form.    Without it, one can pattern, pattern, pattern and not get the desired results – what one might get instead is a lot of frustration for both parent and child.  You want to, as much as possible, as Anat says, to “invite” the movement, rather than “impose” it.


Oral Stimulation

Hard one.   Most people reading this might be familiar with the ‘nuk’ brush.  The bumpy brush that we are supposed to rub and massage the insides of the mouth with.  Again, same idea here: if you want the child to feel it as much as possible, we have to make them 1) look forward to doing it  and 2) feel the sensations that we intend for them by having them pay attention to it.  To this end, I sometimes have him feel the bumps on his finger and then I ask him, “hmm… I wonder what this would feel like inside your mouth?”  Once when I said that, he grabbed the brush excitedly from me and put it in his mouth!  Sometimes, I draw letters on his tongue and ask him to guess what they are or I ask him what alphabet he would like me to draw.   I do the same for around his cheeks.  If your child is not familiar with the alphabet yet, you can try drawing a “ball” or a “triangle” or anything simple that your child is familiar with.    I have also asked him if the nuk brush feels differently on his fingers than it does on his tongue, and how so.  The possibilities are endless.  I will admit that it can be exhausting constantly think up new ways of having him feel the brush in his mouth, so I sometimes just use it on his body for a change.


Auditory Processing

There are many suggested ways of doing auditory processing.  I will take one example to expound upon: digit span.  This activity requires the caregiver/teacher to say out loud to the child a certain amount of digits, a second apart, and the child repeats it back in the correct sequence.   The number of digits usually grows linearly with age up to a point.   My son counts in four different languages (English, French, Spanish and my native language of Kannada – a language of one of the states in the Southern India).   We do digit span in different languages.   He was first used to doing it in English only, so when we introduced the different languages, it threw him off a little.   The result was that he paid more attention and got back on track.  He still prefers to do the activity in English, but the other languages provide enough variation to keep it interesting and difficult.


And in the end...

Doing our ND program is not easy.   It requires enormous discipline to come back and do the same set of activities day in and out.   The only way one can come back and do it over and over again is if there is the strong belief that it will work.  This belief, for my husband and myself, wavers all the time, even though we have seen good results for our son and have a huge amount of respect for NACD.  Let me explain why.  The first issue is that of time – both my husband and I work full-time.  The second is our own parenting legacies:  My husband and I were raised in two different continents.  We were both just left to play, however we wished to by our parents, when we were under their care.  Neither of our parents are technical-minded, however now my husband has a Masters in Mathematics (almost a doctorate) and I have a doctorate in Computer Science (my focus incidentally is Artificial Intelligence).  Granted we achieved this because of the opportunities that environment provided for us and hard work – but it was not in the way of our parents helping us when were young other than allowing us to be whatever we wanted to be.  I understand that our children need more help than typical kids, but just how much help is a question I constantly struggle with… I want him to learn to read by himself because he wants to do so; because he sees how excited I am to read with him, not necessarily through flashcards.  You see my dilemma.  I do want to work hard with my son, but what I really want to teach him, along with increasing his muscle tone, sensory issues, is “grit” because that studies show that is more powerful than IQ [Tough, 2012] in navigating our world.  (Quick digression here, I just want to mention even though reading does change the brain in desirable ways, specifically sharpening visual attention skills, strengthening split-second micro movements of eye muscles, it also makes one less adept at other visual feats that people with dyslexia are good at – spotting visual anomalies and a propensity for visual causal reasoning [Schneps, 2014], skills that serve scientists well).

Teyjas independently finishing a 24-piece jigsaw puzzle.
Doing our ND program with the nine Essentials in mind makes it a bit more exciting and hopefully more effective.  However it also requires a huge amount of discipline – discipline to be completely aware of my intention as I work or play with my son (Is it kind or anxious or greedy?), discipline to not “impose” desired movement on him but to gently “invite” it from him, and discipline to not let feelings of discouragement come through in my interactions with him.  It is a daily practice achieved through frequently becoming aware of the state of our body, breath and mind.  This skill of focused contemplation gets better with time – not just with frequency, intensity, duration, (ha ha – sorry, couldn’t help it!), but with a generous amount of self-compassion. Parenting any child is hard enough, but parenting a child who has some extra needs is phenomenally hard.   It is easy to judge ourselves all day long.  If we are compassionate to ourselves first, then it becomes easier to transfer it to the other people in our lives – including and especially our children who are doing marvelously despite the issues they face.

The old adage, “It’s the journey, not the destination” (or the process, not the milestone!) really fits my journey on this path of parenting my son.  My son, Teyjas, just turned four.   He continues to surprise me everyday – not just with his cognition and speech, but his “grit”, his motivation and his humor.  I want my son to glean from my husband’s and my own experiences – successes and failures – in parenting him.  I want him to know that just like there are innumerable questions/methods on how to help our kids – there is always an answer lurking around – and its an exciting, gritty, grateful, journey to sort through it all – and best of all – to see each new moment as ripe with potential.

Thank you Andi for extending to me the opportunity to voice my thoughts on your well-deserved, extremely inspiring blog for parents of children with Down syndrome.

Teyjas loves coconuts!
May all our children break through stereotypes of the past.

May we all gracefully walk the fine line of high expectations and acceptance.

May we all be present to the enormous love, compassion and possibility in every moment.

Rashmi Sundareswara and her (incredible) husband Sam Peterson are parents to Teyjas, recently turned 4 year old (with Down syndrome), and 6-month old Maya.  We all live in sunny Santa Monica, CA.










References

Baniel, Anat, (2012), Kids Beyond Limits, New York, NY. Penguin Group.

Decharms RC, Merzenich M., (1996). Neural Representations, Experience and Change.  The Mind-Brain Continuum, MIT Press.

Tough, P.  (2012) How Children Succeed. Grit, Curiosity and the Hidden Power of Character, New York, NY, Houghton Mifflin Hartcourt, 2012

Zinn, Jon-Kabat, (1997) Everyday Blessings: The Inner work of Mindful Parenting, New York, NY, Hyperion.

Schneps, Matthew  (2014) The Advantages of Dyslexia. Scientific American. August 19, 2014.  http://www.scientificamerican.com/article/the-advantages-of-dyslexia/

Kilpatrick LA, Suyenobu BY, Smith SR, Bueller JA, Goodman T, Creswell JD, Tillisch K, Mayer EA, Naliboff BD (2011) Impact of Mindfulness-Based Stress Reduction training on intrinsic brain connectivity, NeuroImage. 56(1):290-8. doi: 10.1016/j.neuroimage.2011.02.034. Epub 2011 Feb 18.
http://www.ncbi.nlm.nih.gov/pubmed/21334442

Kang DH, Jo HJ, Jung WH, Kim SH, Jung YH, Choi CH, Lee US, An SC, Jang JH, Kwon JS. (2013) The effect of meditation on brain structure: cortical thickness mapping and diffusion tensor imaging. Soc Cogn Affect Neurosci. 2013 Jan;8(1):27-33. doi: 10.1093/scan/nss056. Epub 2012 May 7.
http://www.ncbi.nlm.nih.gov/pubmed/22569185

Rebecca Erwin Wells, Gloria Y. Yeh, Catherine E. Kerr, Jennifer Wolkin, Roger B. Davis, Ying Tan, Rosa Spaeth, Robert B. Wall, Jacquelyn Walsh, Ted J. Kaptchuk, Daniel Press, Russell S. Phillips, Jian Kong. (2013). Meditation's impact on default mode network and hippocampus in mild cognitive impairment: A pilot study.  Neuroscience Letters, 2013; 556: 15 DOI:10.1016/j.neulet.2013.10.001

Zeidan F,  Susan K. Johnson, Bruce J. Diamond,, Zhanna David, Paula Goolkasian, (2010) Mindfulness Meditation Improves Cognition: Evidence of Brief Mental Training.  Consciousness and Cognition, Volume 19, Issue 2, June 2010, Pages 597–605
http://www.sciencedirect.com/science/article/pii/S1053810010000681

Tuesday, April 1, 2014

How Two Minutes Can Make A Difference

Down Syndrome Day to Day blog readers often ask me what they can do for ME...
Well, this is your chance!

Just sign this petition for better health care for children and adults with Down syndrome! Do share it with friends and family.

What good will this do?

With enough signatures to show support, we can bring our story to big media and physician associations. This is the only way we can show the world the support that's out there for children with DS! Think of all of the kids who will be helped. The new generation of DS treatment is here and NOW!

Petition Summary:

We simply ask doctors to read the research that already exists to help understand the underlying causes for the health issues commonly experienced by children with Down syndrome and to recognize the possibility that the health of a child with Down syndrome can be greatly impacted by diet, lifestyle, supplements and proper thyroid treatment.


Brought to you by:

Petitioning Down Syndrome Specialty Clinics

This petition will be delivered to:
Down Syndrome Specialty Clinics
Medical Geneticists
Endocrinologists

Recognize the value of biomedical treatment of children and adults with Down syndrome

The completion of the Human Genome project in 2003 opened up research into the underlying cause of many genetic conditions, including Down syndrome. The over-expression of genes for the enzymes SOD, CBS and DRYK1A are all linked to the phenotype of Down syndrome. There has been a recent explosion of research in the area of understanding the cognitive delays that often accompany Down syndrome. A large collection of research occurred before this recent explosion to uncover vitamin and amino acid deficiencies, defects in the methylation cycle and causes of oxidative stress, to name a few. The underlying causes of the Down syndrome phenotype are recognized by many well-known and respected researchers, but not by the very doctors that see these patients on a daily basis.

Some parents of children with Down syndrome choose to give their children supplements like a multivitamin, fish oil and green tea extract, among others. Many parents who give their children supplements do so, not with the goal of improved cognition, but to help their children be healthier.

There is a growing online community of parents of children with Down syndrome who have expressed their frustration with doctors who dismiss their concerns for their child's symptoms. Many doctors excuse these concerns as "just Down syndrome". These parents seek help from one another to better understand their child's own health when doctors can't. There are only a handful of doctors who have the knowledge and training to help guide these parents through the vast amount of information available on supplements that have been researched and shown to be helpful.

In addition, the symptoms of Down syndrome are identical to that of congenital hypothyroidism. The type of hypothyroidism experienced by many children and adults with Down syndrome is not detected by a TSH or T4 lab test. Cellular hypothyroidism is the term that has been used to describe what people with Down syndrome experience. The symptoms of this type of hypothyroidism are the same as hypothyroidism caused by a defect in the thyroid gland itself. The conversion of T4 to the active thyroid hormone T3 is imperative to the function of all cells. A second version of T3 exists that is called reverse T3. It is a stereoisomer, a mirror image, of active T3 and is inactive within the cell.

Physiologic processes that contribute to an elevated reverse T3 are low iron, low or high cortisol levels, inflammation and oxidative stress. People with Down syndrome experience all of these processes. Active thyroid hormone is essential for the functioning of literally every cell of the body. Without it people experience slow gut motility, slow growth, delayed cognition and many other symptoms that are so common to people with Down syndrome.

We simply ask that doctors start reading the large body of research that exists to help understand the underlying causes for the health issues commonly experienced by children with Down syndrome and open up to the possibility that the health of a child with Down syndrome can be greatly impacted by diet, lifestyle, supplements and proper thyroid treatment.

----
To:
Down Syndrome Specialty Clinics
Medical Geneticists
Endocrinologists

Recognize the value of biomedical treatment of children and adults with Down syndrome

Sincerely,
[Your name]
-----

If you need more information about anything mentioned in this petition, please feel free to ask!

Friday, March 21, 2014

Celebrate World Down Syndrome Day!



Celebrate World Down Syndrome Day by signing this petition for better health care for children and adults with Down syndrome. 

Down Syndrome OPTIONs is educating parents NOW to improve the health and development of our loved ones. Come join us and make a difference!



Wednesday, March 19, 2014

Down Syndrome Conference May 2014


 The Down Syndrome Track 
at the 
2014 AutismOne Conference!

May 21-22, 2014 

at the 
Intercontinental Hotel O'Hare Chicago 
in Rosemeont IL

Register now 
to experience the event of the year!

The conference (May 21-25) is $99, with two full days of Down Syndrome specific presentations (May 21-22) and five days of pertinent, helpful topics from the autism community like fermentation, homeopathy, healthy cooking, boosting immunity, supporting gut health and much, much more. That's a small price to pay for access to such great information!

In addition to the life-changing information, you will meet up with parents, researchers and doctors in person. It will be an amazing experience you won't want to miss!

I'm excited to meet you at the Down Syndrome OPTIONs booth.

Childcare is available.

Speaker Sneak Peek:

Dr. Norman Schwartz

Jill Rabin, MS, CCC-SLP

Dr. Russell Jaffe

Jane Winans, Mom

Dr. Richard Freely

Lydia Winans, elementary school student

Dr. Erica Peirson

Leslie Boswell, Mom

Dr. Jared Skowron

Allison Wimmer, neurodevelopmentalist

Dr. Richard Deth

Dr. P.J. Baggot

Andi Durkin, Mom

Panel of Speakers


Topic Sneak Peek:


Optimizing Pregnancy and Early Infancy

Feeding for Speech Support

Available tests – treatment staging

Sulfur/CBS Upregulation

Craniosacral Therapy

Neurodevelopment - Speech

Navigating the Journey

Communicating with Your Doctor

Pediatric Hypothyroidism in Down Syndrome and Autism

Trehalose 

Methylation and Epigenetic Regulation in Down Syndrome



Click the links to check out previous year's presentations:



Glutamate, the major excitatory neurotransmitter in the brain, is both essential and highly toxic. Patients with Down Syndrome experience a higher rate of oxidative stress that damages neurons, potentially exposing them to the harmful effects of excess glutamate released from damaged neurons. Mediating the effects of excess glutamate is essential to optimizing the health of neurons.

Erica Peirson, ND


Dr. Schwartz will review the history and scientific research documenting the benefit of nutrient and thyroid support in Down Syndrome. He will explain low risk, high gain interventions to: optimize nutrition and supplementation; monitor and support thyroid; choose first line, functional lab tests; avoid environmental toxins; and support detoxification. These are the building blocks needed to form a solid foundation upon which your child may flourish.

Norm Schwartz, MD


Can nutritional supplements benefit individuals with Down syndrome? Kent MacLeod will review the history of supplementation in Down syndrome, and discuss recent advances in nutritional science and how those innovations can be used to positively impact the biochemistry of Down syndrome.

Kent MacLeod


With proper intervention—physical, nutritional, neurodevelopmental, medicinal and environmental—your child's future can be full of opportunities instead of obstacles.
I've devised a proactive plan of action while addressing my three year old child's root causes and symptoms of Down syndrome. This is an exciting journey and I'm happy to share with you what I have learned.

Andi Durkin
GAPS™ - Gut And Psychology/Physiology Syndrome

GAPS™ (Gut And Psychology/Physiology Syndrome) shows the underlying cause of some of the symptoms that plague special needs children, such as digestive issues, malabsorption, food sensitivities and toxicity. This session will explain how the state of the gut directly affects the health of the body and how the GAPS™ nutritional protocol can heal or greatly improve many of these symptoms.

Kristin Gustafson

Parents deal with gut issues on a daily basis. Many parents of children with Down's Syndrome deal with the same GI problems experienced by those with autism. Digestive enzymes from non-animal sources can often improve many problems associated with food intolerance and malabsorption. This lecture will help parents understand what enzymes are and how they work in digestive health
Devin Houston, PhD


This talk will educate participants on current and optimal dietary options to ensure better overall health for their child with Down syndrome. The impact of diet and different methods on how to transition children with Down syndrome to solid foods will be discussed. Oral motor and feeding treatment methods will be explained as well as the importance of using these methods in order to develop a strong foundation for feeding skills and the development of speech.

Jill Rabin M.S. CCC-SLP/L IBCLC

Let's Learn - Reading Math and Fun Stuff

Learn and discuss fun ways to help your child read, do math, socialize, and play. Explore simple, logical strategies and activities which will increase overall retention of the information being presented. Sometimes the best teaching strategies are the most obvious.

Alison Wimmer

Balance tips for a busy household & Lydia presents her life

How do I balance it all? This talk gives helpful tips for maintaining balance while juggling therapies, doctor appointments, food restrictions, other children, marriage and self. What are the possibilities for my child? Lydia is in 4th grade and will share a slice of her life with you.

Jane Winans, MA and Lydia Winans

Comparative effectiveness research depends upon a group of objective, independent predictive biomarkers. A current state of the art in regard to evidence based predictive biomarkers will be presented and discussed.

Russell Jaffe, MD, PhD, CCN

Down Syndrome: Evidence of a Susceptible Subgroup for Vaccine Injury

This talk will present biologically based evidence that children with Down syndrome are uniquely susceptible to injury from vaccines. With an 18% ASD comorbidity, we will explore the mechanisms that may connect vaccines to autism in this highly vulnerable population. The relationship of vaccines to Alzheimer’s will also be discussed.

Laurette Janak

Health Risks for Down Syndrome Moms and What to Do About It

Layman’s terms will be used to explain the folate cycle and its implication to the health risks for a mother with a Down syndrome child. Topics to be discussed include: depression, heart disease, Alzheimer’s, cancer and risk for having a child with autism. Strategies to minimize these risks will be presented.

Laurette Janak

Boost Cognition Potential

Dr. Anju Usman will explain biomedical techniques for optimizing a healthy gut-brain connection including uncovering roadblocks to function as well as introducing nutrients for brain repair and neurogenesis.
What is epigenetic regulation of gene expression, and why is it particularly important in brain development? This presentation will provide a fundamental understanding of epigenetics, focusing on the specific implications of chromosome 21 trisomy.
Richard Deth, PhD



Monday, March 3, 2014

Treating Apraxia in Children with Down Syndrome

Please welcome guest blogger, Christine H., mom to beautiful, resilient, Olivia who has T21, as she openly and honestly shares her hits and misses in her quest to successfully help her child speak despite the additional diagnosis of apraxia.

Our journey with apraxia really began when Olivia was about 18 months old. We saw a Speech Language Pathologist (SLP) for a consultation and she said that Olivia was showing signs of apraxia. Why? She was not babbling and could not imitate mouth movements at all. Olivia could imitate other gross motor movements, like body gestures, but not oral movements, such as puckering, blowing, etc. 


I truly think I have tried EVERY therapy out there is, which I will describe below.... (All items she recommends can be found at the DS Day to Day amazon store.)

What IS apraxia?


According to the National Institute on Deafness and Other Communication Disorders, apraxia is a speech disorder in which a person has trouble saying
what he or she wants to say correctly and consistently. 

The severity of apraxia of speech can range from mild to severe. People with apraxia of speech may have a number of different speech characteristics or symptoms. One of the most notable symptoms is difficulty putting sounds and syllables together in the correct order to form words. Longer or more complex words are usually harder to say than shorter or simpler words. A person with apraxia of speech also tend to make inconsistent mistakes when speaking. For example, he may say a difficult word correctly but then have trouble repeating it, or he may be able to say a particular sound one day and have trouble with the same sound the next day. Someone with apraxia of speech often appear to be groping for the right sound or word, and may try saying a word several times before he says it correctly. Another common characteristic of apraxia of speech is the incorrect use of “prosody” — that is, the varying rhythms, stresses and inflections of speech that are used to help express meaning.

Here is what I didn't know: According to Libby Kumin, speech expert in Down syndrome, about 30-40% of kids with Down syndrome also have apraxia. It is MUCH more than a speech delay. It is a speech DISORDER. If your child has apraxia, you can NOT compare their speech with typical kids with DS. And sadly, our kids with apraxia develop speech MUCH slower than other kids with DS, with the first words arriving at about age five. 

It doesn't mean they won't ever talk (although some kids don't, but it is rare!), but just to expect it to be slow going. Apraxia is also VERY frustrating. One day she will say a word PERFECTLY and you think they have it down, the next day it is GONE! And the parent is thinking where did it go? It is part motor planning and part memory! For example, Olivia can say "bye" and "kuh", but she can not say "bike".

So now that you know what it is (and you're thinking the future is bleak!), I am here to tell you its not. 


There is a LOT you can do. I am a research queen, so let me save you some time....

First thing IF you suspect your child has apraxia, get a diagnosis by an SLP who knows what apraxia looks like. Believe it or not, a LOT of them don't! The treatment plan is different for our kids. If you suspect it, what should you be looking for, other than the signs above, of course? For starters, if your child is not babbling (mama, papa, dada, etc.) by the age of two and cannot imitate your pucker or blowing, then you should suspect it and get a diagnosis. Do NOT believe it when/if an SLP says that your child is just delayed because of the Down syndrome diagnosis!

Next, you must get this bookSpeaking of Apraxia: A Parents' Guide to Childhood Apraxia of Speech by Leslie Lindsay.


And also this book: Early Communication Skills for Children with Down Syndrome: A Guide for Parents and Professionals (Topics in Down Syndrome)by Libby Kumin. On pages 125 - 126, Kumin lists the characteristics of apraxia in our kids.





You must have these CD's: Talk It Rock It, in your car.  They are music specifically designed to encourage your kids to talk.  It is basically speech therapy in the car!!! 


I HIGHLY recommend Talk It Rock It's Imitation Station CD and "Animals Movin and Groovin". Make copies of them so you can play them at home too.


If your child is age three or older, I highly recommend hippotherapy (a form of speech and other therapy in which a therapist uses the movements of a horse to provide carefully graded motor and sensory input). T
here is something about being on a horse that strengthens the core that is really beneficial for our kids. More details are Lindsay's Apraxia book. 


For blog reading, I recommend the following:


Pursuit of Research's Therapeutic use of fish oil for apraxia

Our Perfectly Imperfect Life Blog

Learning sign language, while controversial in our community, has been a HUGE blessing. We started teaching it to Olivia when she was nine months old. She did her first sign at 18 months...it took awhile! BUT I am so glad I did! Without it we would have had huge behavior problems because she couldn't communicate and we don't have that. In addition, it is a wonderful way to help our children learn imitation. It was a nice bridge into the speech program that we chose to use with Olivia.

Learning how to read has also helped Olivia to talk. I recommend starting with your child's favorite things written on flash cards. Working with the Downs Ed See and Learn (match, select and name program) has also helped. Olivia is now starting to read ALOUD basic sentences. I won't go into details on a reading program here as there are others who have done an excellent job with that. (You can see Teach Your Child to Read.)

I give Olivia a LOT of supplements too (except where indicated, see Andi's blog and the DS Day to Day amazon Store).


Fish oils as recommended by Pursuit of Research
Green Tea Extract
Gingko Bilboba 

Blueberry Extract 

Choline
Acetyl-L-Carnitine

As for therapy, you must have an SLP that is an expert in apraxia. A lot of people do PROMPT therapy. We tried it for about two or three months and did not have any success with it. Unless you have wonderful insurance (which we don't), it's an out of pocket expense, and at $150 an hour, that can quickly add up. I also found that it is not IMMEDIATELY duplicatible. I know some people have had good success with it and I am happy for them, but it needs to be done frequently, which is costly, and it can take awhile...as in months. Honestly, I am not THAT patient! 


We had the most success with Speech EZ. Lynn Carahaly is an expert in apraxia and has been a keynote speaker at many conferences. We spent a week in Arizona with her. Within TWO DAYS, Olivia was starting to babble. Lynn uses prompts that are VERY similar to sign language. So if your child knows the alphabet in sign language, which Olivia did, he will pick up how to make sounds very quickly. (Signing Times ABC's)

At the end of the week, Olivia was saying about five words. Are you kidding me? When we went there, the only word Olivia had was, "Hi!" 
Five words in a week!! I will take it!!! I was ecstatic, to say the least. 

Lynn teaches you how to do a program at home, so that is what we have been doing. I'm not as consistent as I would like, but we try to get the program in at least three or four times a week. It takes about 10 - 15 minutes.

We have also done Talk Tools and Beckman Oral Motor therapy. Neither one of those methods produced actual speech for Olivia (p
robably because apraxia doesn't happen because of weakness or paralysis of the speech muscles [the muscles of the face, tongue and lips].)  I do think these therapies helped to strengthen her lip muscles, but we actually never worked on speech sounds during these therapies (shocking, I know!). The only time Olivia worked on actual speech sounds was during the therapy sessions in Arizona. I still, however, do Talk Tools to strengthen her lip muscles and to get that tongue back into her mouth! 


We also work with some great apps on the iPad. We love all of these apps. Olivia probably likes Speech Box the best, but she likes all the other ones too.

Articulation Station
Tiga Talk
Speech Box
Speech-ez apps


As for Olivia's story, we had a preliminary diagnosis of apraxia at 18 months due to no babbling and a fairly quiet child who was unable to imitate lip movements. As the years progressed, Olivia moved from mild apraxia to severe apraxia simply because she did not progress with speech at all. It wasn't until we learned the speech-ez program that Olivia had changes at the age of four! 


She is now almost five and is reading simple, "I see a ____" sentence books. She can say about twenty to thirty words with many more approximations. AND, here is the kicker: This girl is a leukemia patient. She has been on chemotherapy all of last year. We have both worked hard. I hope my story will help someone else whose child has apraxia.

Thank you for sharing, Christine! I know your hard work and experience will save parents a lot of time (and money!).

Sources

Wikipedia: Hippotherapy

The National Institute on Deafness and Other Communication Disorders: Apraxia



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Wednesday, January 29, 2014

Down Syndrome: A Day to Day Guide Store

To help you easily and conveniently find the supplements and products that I write about in my blog, I've put them all together in one little amazon.com store front for you.

I've also added a link to amazon (on right, under the disclaimer) so you can shop for anything else.

Using this store and this link will help support my efforts to continue to write new blog posts for you, update old ones and maybe be able to buy some groceries!

Down Syndrome: A Day to Day Guide US Store

Down Syndrome: A Day to Day Guide UK Store

Down Syndrome: A Day to Day Guide AU Store (coming soon!)


I hope these stores will be a useful tool that saves you precious time.


Let me know if you'd like me to add some other products or categories in our store. 

Thanks so much for your support! I look forward to sharing more information with you. 

Thursday, January 2, 2014

Treating Nystagmus in the Down Syndrome Population

What is Nystagmus?

Nystagmus is an involuntary "flutter" or movement of the eyes (like the actor in "The Crying Game"). Ten percent of people with Down syndrome have nystagmus, while in the typical pediatric population, it occurs in about .015 percent.


Jett seemed to be born with it--at least it appeared occasionally very early on, just a tiny bit in both eyes. I don't know exactly when it first started, but I always knew when to change his diaper because the flutter seemed to coincide with peeing. It turns out that other moms with babies with DS and nystagmus have also seen it appear when their child is doing something physical as well, like trying to lift his/her head during tummy time.  Jett's flutter never stayed for longer than a couple of seconds. His was a very fast, right to left motion, eventually only in his left eye. When he crossed his eyes to focus on something close, it stopped. And then, soon after his heart surgery, at 6 months old, it was in one eye constantly--a fast horizontal flutter. I was concerned, not only because it was giving him poor sensory input, much needed for learning, but because I didn't want an additional barrier between him and the people who might want to befriend him. So, it was important to me to fix it as soon as possible!

If you've looked online and asked your doctors--like I did--they all probably said nystagmus is incurable with 272 possible reasons as to why your child may have it. And the treatment mentioned probably included contact lenses and glasses, medication and/or surgery, none of which completely cure the problem.

"Incurable" is pretty meaningless to me, so I tracked down two people online who were able to cure their nystagmus -- one was a mom named Ali, with a child with DS and nystagmus, who used essential oils; and one was a man in China who found success through a Traditional Chinese Medicine (TCM) practitioner. I found a reputable TCM locally from a recommendation by Jett's pediatrician. She's a licensed Acupuncture Physician (A.P.) and a certified Diplomat in TCM on the national level. She used acupressure instead of acupuncture (since he was a baby) and she gave him the "Free the General" herbal tea blend (brand name Si Jin Boa). But it's probably not a one size fits all... She seemed to know right away what to do. I took him to her once a week (maybe twice a week, at first) and then once every two weeks. It took a while, but it gradually went away within about three months. And it has NEVER come back; he's almost four years old now. 

TCM absolutely worked for Jett. If you choose to go that route, make sure you find a good TCM practitioner. I would be happy to give you Jett's TCM's info (in the Orlando area) in case you are near her or if the one you find would want to correspond with her.

Where can you find a qualified TCM Practitioner?

The National Certification Commission for 
Acupuncture and Oriental Medicine (NCCAOM) website has a national directory of all acupuncturists and TCM practitioners that hold NCCAOM certification. Since NCCAOM certification is a prerequisite for licensure in most states, this is a reliable and reputable source of information about practitioners who have met established standards of competency.

Do eye supporting oils and supplements work?

Ali used supplements that support the eyes to get results: Vitamin C, DHA, flax seed oil, Evening Primrose Oil, a small amount of vitamin E, cod liver oil, beta carotene, milk thistle and lutein. (Now I've found out that the DS population should avoid lutein, so I'd skip that one and maybe consider astaxanthin instead.) Ali says:
"Within two days, our son was back. He was able to focus on us mentally and visually. He began to play and vocalize better than ever. The nystagmus backed off and showed only when he looked far to the side and some days it didn't show up at all. I am still going to supplement him with some oils even as we give him a nutritional formula designed for DS kids. I'm hoping we can keep the nystagmus at bay."
I use many of these supplements for Jett's eye health including Vitamin C, DHA, vitamin E, fermented cod liver oil and astaxanthin.
From a recent survey I did of 24 moms with children with DS who have nystagmus, two more cures were uncovered: one child's issue disappeared once thyroid treatment began and another's child went away with manipulation from a DO (Doctor of Osteopathy). Since hypothyroidism can lead to low muscle tone, perhaps fixing her child's thyroid also fixed the muscle tone which in turn cured the nystagmus. 

Two parents said that it just disappeared after about two years. This description sounds like they had spasmus nutans, which usually occurs between 6 months and 3 years of age and resolves spontaneously between 2 and 8 years of age. Children with this form of nystagmus often nod or tilt their head to compensate for the eye movement. Their eyes may move in any direction. Personally, I wouldn't want to wait and see...

Several parents saw nystagmus appear when using anti-seizure drugs or when giving ginkgo. Discontinuing the products stopped this type of eye flutter altogether.

The direct cause of nystagmus is instability in the motor system that controls the eyes. When nystagmus develops in early childhood (as it seems to in people with DS), it can be caused by a problem with the visual pathway from the eye to the brain. From what I could piece together, the type of nystagmus Jett had may have been due to a problem in his brain stem, not surprising for a child with DS. Since Jett was fresh out of heart surgery and could not yet crawl, I did patterning (manually mimic the motions of cross patterned crawling) with him which, from what I read, helps stimulate that part of the brain. It makes sense that his nystagmus worsened right when he should be learning to crawl, but was delayed. Some moms surveyed saw improvements through creeping (4 point crawling) and walking, which also targets that area. Mom, Jaime, commented:
"My child started crawling last June and has recently begun creeping like crazy. I kind of blame the majority of his progress on creeping and crawling. For sure, once he started crawling, [the nystagmus] improved. I know because I've been paying attention. Now, it's nearly undetectable. At his last eye appointment, the ophthalmologist commented on how hugely it had improved. I found that interesting because at our first appointment, the previous year, she had suggested that they rarely improve!" 
Another way to help trigger the brain stem in an older child, other than crawling, would be to chew gum at the back of the jaw. (A neurodevelopmentalist would be able to give more tips.)

Other moms are seeing improvements through using craniosacral therapy, exercising with vision therapy and patching the stronger eye. One child had a combination of muscle tightening/alignment and ear tube surgery. This child may have had inner ear inflammation, yet another possible cause of nystagmus. The flutter was lessened with each of these approaches, but none of these have completely relieved their child of the nystagmus. (Yet, anyway!) Most said it's now barely noticeable or appears only when the child is tired or sick.

Other types of nystagmus can be up and down (vertical) or move in a circular fashion (rotatory), but, interestingly, all of the moms reported their child has/had horizontal nystagmus in both eyes except for the children who had cataract surgery. Those children had it in the weakest eye, only when patched and both had nystagmus appear only after cataract surgery. Mom, Julia, explained it this way:  
"[The nystagmus was] made 97% better, at this point, by increased patching. The [Pediatric Ophthalmologist] suspects a "searching motion" due to immature neurological connections...."
Most moms said that it seemed to get worse when their child was tired, also indicating a possible muscle issue. As far as whether or not the nystagmus temporarily corrected itself while focused on something was split 50/50. 

Studies have shown that downbeat nystagmus (type of vertical nystagmus) may occur from a partial deficiency of the metabolic cofactors, magnesium and thiamine (B1).  And that a B12 deficiency has also been known to cause nystagmus. Our kids are usually deficient in all three of these vitamins, but I haven't encountered anyone with DS who exhibits it vertically.

Please feel free to comment to add your input to the survey. The questions are:
1) When did the nystagmus first appear? When did it disappear?
2) Is it in both eyes or one eye?
3) Is it horizontal, vertical or rotary?
4) Is it about the same speed, or changes speed (jerky)?
5) Is it worse when your child is tired?
6) Is it better or worse when your child focuses on something?
7) Have you noticed anything making it better or worse?
8) What have you done to treat it?


Sources

http://www.healthline.com/galecontent/nystagmus#2

http://www.cancercare.lahey.org/Departments_and_Locations/Departments/Endocrinology,_Diabetes_and_Metabolism/Ebsco_Content/Hypothyroidism.aspx?chunkiid=100682 

http://archneur.jamanetwork.com/article.aspx?articleid=580158

http://teddybrain.wordpress.com/2013/01/16/what-nystagmus-can-tell-you-in-neurology-clinical-approach-to-nystagmus/

http://www.whale.to/w/b12.html



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