Archive for the ‘Genetic’ Category

Outsmarting Autism

July 6, 2014

Front Cover

With great excitement and pride I announce the release today of my second book, Outsmarting Autism: The Ultimate Guide to Management, Healing and Prevention.  It is available on Amazon in both an e-book and a paperback, as well as from the publisher.  As I watched the magnificent spray of fireworks brighten the skies over the Allegheny River in Pittsburgh last night, I secretly thought they were celebrating not just Independence Day, but also this momentous milestone of mine.

In 2008, I downloaded 40 years of experience and knowledge from my brain into EnVISIONing a Bright Future, my first book. It contains all that was known then about possible causes, treatments and management of autism spectrum disorders. I never dreamed that just as much NEW information would emerge in the next six years: genomic testing that explains in part why some kids become autistic, and iPads with amazing apps, are just a couple of additions.  So…I just HAD to write another book!

Outsmarting Autism, like EnVISIONing in 2008, is the most comprehensive book available on what is now called Autism Spectrum Disorders (ASDs). Whether you are new to the world of autism, are familiar with treatment options, or are a veteran who has “been there, done that,” this book is for you! Discoveries about possible etiologies and promising therapies are emerging so quickly that you are sure to learn something new.

Outsmarting Autism guides you step-by-step with practical information from a variety of fields that families, specialists, and educators can put to use immediately.

Step 1: Take Away the Bad Stuff, and Add Back the Good Stuff

♦ Clean up the environment ♦ Eat, sleep, and drink smarter ♦ Boost the immune system ♦ Balance hormones ♦ Detoxify

Step 2: Correct Foundational Issues

♦ Remove structural impediments ♦ Integrate reflexes

Step 3: Address Sensory Problems

♦ Improve sensory processing ♦ Develop vision

Step 4: Focus on Communicating, Interacting, and Learning

♦ Build language ♦ Concentrate on social-emotional skills ♦ Learn to read, write, and calculate ♦ Use technology

Step 5: Plan for the Future

♦Transition to independence ♦ Prevent autism from conception

Don’t let the book’s mammoth size scare you. Even though it is over 500 pages, I have made it extremely easy to understand, and Cindy Coan’s amazing index allows you to find anything you are looking for quickly and easily.

I hope you will read Outsmarting in sequence.  If you decide not to, at least read Chapters 2 and 3 on Total Load Theory and how today’s lifestyle has contributed to the autism epidemic, before jumping ahead. Autism did not just show up overnight. We now know the many risk factors, and how to be proactive and prevent more children from becoming affected. Individuals with autism are physically sick, and making healthy lifestyle changes, no matter how overwhelming they seem, can be the difference between management and healing.

This book could not have happened without the help and support of so many people.  To the owner and staff at Word Association, my awesome editor, Kendra Williamson, and all of my colleagues and friends who contributed material, proofed and edited, and stood by me while I worked every day for the past two years, my deepest gratitude.

Outsmarting Autism is meant to challenge some of your beliefs. If you have questions, I have answers. “Like” the book on Facebook, and write me a comment.  Go to Amazon and review it. Check out my website at www.OutsmartingAutism.com and see where I am speaking next.  I will be launching the book in Denver and Boulder on July 29th.  From 3- 5pm I will be at Proactive Wellness and at 7:30 pm at the Boulder Bookstore. In September, I am finalizing dates for New York City, Westchester and New Jersey.  Want me to include your town on my year-long book tour?  Let me know.

Now it’s time to get started. We can outsmart autism together.

 

Kuwait Revisited: Offering Help to Those with Severe Disabilities

January 3, 2013

Kuwait Dubai Jordan and Erika's wedding etc 441Kuwait Dubai Jordan and Erika's wedding etc 241artists

Right before Christmas, I returned from my second mission to Kuwait. Now that the holidays are over, I want to share my impressions. I made my first trip there in May, when I was invited to assist with the launch of Center 21, whose motto is “putting the able in disabled.” This enormous undertaking is the brainchild of devoted parents who want their son and others to continue to learn and grow despite the fact that they are no longer eligible for educational services. Center 21 will provide therapeutic and recreational services for the thousands of young adults with disabilities in that tiny country squished precariously between Iran, Iraq, and Saudia Arabia.
The Hosts
Lamia and Nabil and their children Abadi, Saud and Nadia, opened their home and hearts to us. Abadi, the inspiration for Center 21 remembered me, and followed the adult strangers around like a puppy dog, high fiving us over and over again. He was clearly communicating his welcome! His younger siblings, one in college, the other a high school senior, soaked up our knowledge, learning from us at every opportunity. One of Center 21’s volunteers, Fawzi, was our driver, tour guide, technology consultant, and caterer, anticipating and taking care of our every need from sightseeing to late dinner. My team of experts instantly fell in love with our hosts’ warmth and generosity. They made this venture so comfortable and enjoyable that it hardly seemed like work!
The Team
This trip had one repeat member, my long-time friend and colleague, Aubrey Carton Lande, occupational therapist, award winning musician and horsewoman. Accompanying Aubrey and me on our excursion was Mary Rentschler, a specialist in Masgutova Neurosensorimotor Reflex Integration (MNRI®). Completing this international team were Scandinavian neuro-developmental optometrists Thorkild and Lena Rasmussen, whose unfathomable job it was to evaluate and prescribe treatment for the undiagnosed vision issues rampant in the special needs population. As team leader, my prodigious responsibility was as case manager, educator and priority-setter. What a humbling challenge for us all!
The Mission
Whereas in May our emphasis was on visiting schools, government agencies and private organizations, this trip focused on providing individual assessments and services that could improve the quality of the lives of those with special needs. We set up serial evaluations with each expert, followed by group explanations of the role of each area in remediation, and the importance of continuity, support and follow-up by the families. In addition, similar to our previous trip, we delivered an evening conference in a magnificent ballroom, followed the next night by small group discussions on prioritizing therapies, sensory diets and reflex integration.

The Culture
Whoever would have thought that a nice Jewish girl from Pittsburgh would come out of retirement to hang out, joke with, and consult to Muslims in Kuwait? We bonded as humans with common goals and philosophies that instantly overrode our religious, educational, language, fashion and cultural differences. When speaking with parents, sometimes with a translator, my brain quickly disregarded the traditional dress worn by some, seeing only the love in their eyes, and the fear in their hearts. Kuwaiti parents are no different than my clients in the States.
The Disabilities
After working for over 40 years with families of those with special needs, I thought I had seen it all. But nothing prepared me for the complexity of the issues facing these Kuwaiti families. While the country is oil rich, it is resource poor. When a young child receives a diagnosis, little remediation is offered. “Take your child with a disability home and love him,” most families were advised.

We met many individuals age four through the mid-twenties with Down syndrome, cerebral palsy, autism, and global developmental delays. Because Center 21 is planning to have an outpatient facility providing occupational and speech therapy services to all ages, younger kids were included in our case load. Many parents had not one or even two children with diagnoses; several had three of eight or so children with serious disabilities under one roof. Only the loving care of live-in nannies from countries such as the Philippines and Nepal helped them cope.
Just like their American counterparts, families in Kuwait are grateful for and blessed by all of their children, regardless of ability. However, because prenatal testing is not performed in Kuwait at the drop of a hat as it is in the US, children with genetic syndromes are common, especially in families where marriage of cousins is not uncommon.
In the United States an estimated 92% of all women who receive a prenatal diagnosis of Down syndrome choose to terminate their pregnancies, according to Dr. Brian Skotko, a pediatric geneticist at Children’s Hospital Boston. In the absence of prenatal testing, the United States would have experienced a 34 percent increase in the number of Down syndrome births between 1989 and 2005, Skotko estimates. Instead, 15 percent fewer such babies were born during that time, representing a 49 percentage point difference between expected and observed rates, according to Skotko’s research review. Add to that other screenings, such as those for over 200 other known genetic syndromes, such as Tay-Sachs, that occur in specific populations, and the number of genetically different births is reduced even further.

The Children
Each expert spent more than an hour with about 20 children, a few of whom I introduced you to in my previous blog. For the repeats, we had the opportunity to delve more deeply, and to carve out a prioritized plan. Here are some of the complex cases we saw:

  • Dallal is the 16-year-old non-verbal young lady I introduced you to in my previous blog, who frequently rips off and breaks her glasses. In May, I had suggested a less strong Rx, blatantly practicing optometry without a license. Because she continued to reject even the weaker prescription, this summer her father decided to abandon the glasses altogether.
    The examining optometrist determined that Dallal’s eyes turned out, a condition called exotropia, and that even the lower Rx stressed her brain to keep her vision binocular. Dr. Lena thus recommended no lenses at all, and replaced her glasses with some motor activities designed to strengthen her neck and adjacent muscles, thus allowing her eyes to work together more efficiently. In addition, Aubrey worked with Dallal’s parents to design a sensory room that provided her with deep proprioceptive input and calming activities to lessen her frequent agitation.
  • Abdullah, also 16 and non-verbal, has journeyed outside of Kuwait with his devoted parents in efforts to improve function and skills. His calm demeanor and healthy appearance are unusual for a male with an autism diagnosis. His mother shared that he benefitted greatly from a gluten- and casein-free diet, and had undergone a detoxification program. Yet, he experienced both extreme tactile and auditory defensiveness that prevented him from relating to strangers.
    Addressing the tendon guard and Babinski foot reflexes calmed his extreme tactile defensiveness. Mary is hopeful that with continuous work, he will become available for other reflex repatterning techniques and eventually be ready to engage positively and communicate with others.
  • Mohammed is a teen with Down syndrome who looks more like nine than his 15 years. He has a winning smile that makes those around him melt. Totally loved and over-indulged by his family, he is courteous and compliant. He can tie his shoes, speak in sentences, and even read and write a little.
    His glasses prescription for extreme myopia was also found to exacerbate his visual skill development, and was reduced. Work on his large motor skills quickly improved his grasp of a writing implement and his speech. Discussion about the importance of immune system boosting foods and supplements and a referral to Nutri-Chem and the book Down Syndrome and Vitamin Therapy by Nutri-Chem’s pharmacist founder, Kent MacLeod, rounded out his program.
  • Achmed is one of three boys with autism in a family of eight. His exhausted mother shared matter-of-factly that in addition to coping with her sons, she is the only daughter of a mother on daily dialysis, and is having some health problems of her own. Referencing the work of one of my heroes, Dietrich Klinghardt, MD, the alarm went off in my head for mercury poisoning. Klinghardt implicates mercury whenever a family has multiple children with autism diagnoses. I asked Achmed’s mother about her dental status, and she began to weep, showing me a mouth full of silver amalgams mixed with gold crowns: a veritable petri dish for disease. We discussed the importance of working with an expert in detoxification who knew how to remove mercury safely. Without biomedical intervention, this family cannot get well.
  • Yasmeen is a four-year-old whirling dervish with a single eyebrow that crosses her forehead. In an hour’s time she never stopped moving or emitting a high pitched scream. She eats corn flakes with milk for breakfast, spaghetti for lunch, and pizza for dinner, snacks on crackers and cookies all day, and washes everything down with milk. She has a brother nine months old who is covered in eczema. Her young parents, who are biologically related, were told that their daughter is autistic, and that nothing can be done for her. Last year her teacher suggested casting her arms and putting mitts on her hands to prevent her from self-abusing and touching others. Now that these torture devices have been removed, her hands are so weak, that she cannot use them functionally.
    Yasmeen, like Achmed, is physically sick. I have no doubt that she is gluten and casein sensitive, and is ravaged with a combination of toxins, gut bugs, viruses, parasites and metals. All the sensory therapies and external interventions in my tool chest are impotent in trying to improve her function. We must start with nutrigenomic testing such as offered by Dr. Amy Yasko, to see what type of genetic abnormality this family is carrying, and offer supplements to correct the faults. Somehow, some way, we must improve her diet and get some nutrition into her. This case is urgent; the younger brother is another statistic waiting to happen.
  • Hussein is a young adult with severe cerebral palsy. He has little use of any of his limbs, and very poor head and eye muscle control. One of his legs is permanently perched in his lap, with the knee bent. He does not speak, but appears to understand what others are communicating, according to his sister, who is his advocate. He wears diapers, and is totally dependent upon caregivers for eating and moving from place to place.
    Reflex work on Hussein’s feet left his muscles uncontracted for the first time in his life. He was able to release his leg to an almost normal position. He smiled broadly. His sister started to cry, and promised to continue the prescribed therapy daily.

The Causes
Why so many severe cases with such complex needs? Maybe it started with exposure to the chemical soup from the Gulf War oil fires, compounded by unknown viruses and bacteria, and exposure to heavy metals, mercury and who knows what else, that tweaked their genes in a unique way. Add an extremely aggressive vaccination schedule, the ubiquitous presence of American fast-food restaurants, and stressors such as a well-meaning early intervention program that gets kids walking before their bodies are ready, and you have the “total load.”

The Healing
In the short time we had, we introduced that concept that the body’s top priority is staying well, and that speaking, relating and learning had to take a back seat to digestion, respiration and detoxification. We spoke of the success many families we knew in the U.S. experienced when they combined biomedical intervention with sensory therapies to heal their children with autism, and to improve behavior in those with genetic syndromes and global delays.
When anyone seeks medical help at a hospital, the first step after hydrating and stabilizing the body is running tests to determine what is wrong. We urged our Kuwaiti families to follow this model. We distributed test kits from the Great Plains Laboratory to measure the basics: gut function, the presence of dangerous metals, bacteria, viruses, and parasites, vitamin and mineral deficiencies, immune system markers and more. Hopefully, parents will take the time to collect the necessary hair, stool, urine and blood to open the door to healing.
The Future
As soon as possible, we plan to set up an online network so that parents can communicate with and support each other. Furthermore, we must also appoint case managers to provide continuous education and training. Without support and frequent check-ins families can easily become discouraged and drop out.
Nabil has suggested that we return in February to follow up and continue our work. Whenever we go back, careful monitoring is essential. We need to enlarge our team to include more vision specialists, as well as experts in assistive technology, psychology and counseling.
I would also love to host representatives of Center 21 to visit the United States and see model day, residential, vocational, biomedical, sensory, vision and other programs that they can emulate in Kuwait. If you know of a program I should include in the itinerary, please let me know.
The Payoff
I can think of no more rewarding work than what I have been blessed to do this year. Stay tuned for a continuation of this journey. Lamia, Nabil and their children, Fawzi and his beautiful family, Achmed, Mohammed, Dalal, Abdullah, Yasmeen, Hussein, and the others we saw are my new extended family. I wish them and you a healthy and happy 2013.

Wonder

October 9, 2012

“I know I’m not an ordinary ten-year-old kid….I know ordinary kids don’t make other ordinary kids run away screaming in playgrounds.  I know ordinary kids don’t get stared at wherever they go… It’s like people you see sometimes, and you can’t imagine what it would be like to be that person, whether it’s somebody in a wheelchair or somebody who can’t talk.  Only, I know that I’m that person to other people… To me, though, I’m just me.  An ordinary kid.”

These are the thoughts of August (Auggie, to friends and family) Pullman, a fictitious boy who has endured 27 surgeries to correct extreme congenital facial anomalies of unknown origin.  Wonder is the remarkable first novel by R. J. Palacio that takes us with him to a private middle school, Beecher Prep, where he enters fifth grade after home-schooling for his elementary years.

The school is named for Henry Ward Beecher, a nineteenth century abolitionist defender of human rights. (How appropriate!) Beecher wrote that “greatness lies not in being strong, but in the right using of strength.”  “He is the greatest, whose strength carries up the most hearts by the attraction of his own.”

After Auggie’s parents make the difficult decision to send him off to Beecher Prep “like a lamb to the slaughter,” we learn about his heart and strengths through other, including his parents, sister, Olivia (Via, to friends and family), his principal, Mr. Tushman (yes, a little contrived), teachers and classmates.  Is it painful? Maudlin? A little. And, it is heartening and inspiring.

I have met thousands of families with kids like Auggie.  To them, their child with autism, cerebral palsy, or Down syndrome, is anything but ordinary.  Like Auggie’s parents, they see each and every child as a “wonder.”

This is beautiful story with many “talking points.”  It is book for all ages: one to be read to older elementary school kids, by middle and high school students, and by adults interested in human nature.  I recommend it strongly.