Archive for the ‘Sensory Integration and Processing Dysfunction’ Category

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.

My Kuwait Adventure

June 7, 2012

It all started with an innocent email on April 12th.  “Hi Patricia. We are Lamia and Nabil from Kuwait. We have an autistic son. We met you in 1996 in Washington, DC. Do you remember us?  Our son was 5 at that time; he is 21 now. Awaiting your kind reply.”

Did I remember them?  Are they kidding? How could I forget this wonderful couple and their adorable non-verbal son and toddler daughter.  I fired back an instant reply:  “Of course I remember you!”

Minutes later, another email:  “Wow, nice hearing from you. Hope you are fine. We and a group of parents who are working to establish a center for special needs kids age 21 and above. The center was approved by the government a week ago.  It’s a big project. Therefore, we are requesting that you and other consultants whom you recommend, visit us by end of May to discuss the preliminary stages of development. We want to contact you on Skype for further details.”  I was trembling with excitement!

On Skype, we got down to business after laughing about what 15 years had done to our hair and figures.  I was given a carte blanche to put together a team.  Less than a month later, we hopped onto a United airbus, and in the middle of one of those famous desert sandstorms, landed in Kuwait.

Catching Up

Since Lamia, Nabil and I had had NO contact since 1996, they were unaware that I had run a non-profit organization for the past 15 years, written a book, or that exciting new therapeutic options existed for their son and others. They confessed that they had thought about trying to find me in the past, but only now did they ask their 17-year-old son to “Google” me.  They described their pleasure when my photo appeared on the computer monitor; their delight could hardly have equaled mine.

When I decided to wind down DDR several years ago, many asked, “Patty, what will you do now?’  I responded, “I don’t know; something will come up!” Was Kuwait where my boundless energy was headed?  To a country the size of New Jersey, over 6000 miles away, where over 3000 children born in 1991 were affected by the devastating oil fires?  All I could think of was what horrendous damage breathing all those toxic fumes did to pregnant mothers and their babies.

My Team

I asked for a week to choose my team. After making many contacts, I was really fortunate to be accompanied by two amazing women: my long-time friend, occupational therapist Aubrey Lande, and a new acquaintance, special education teacher and art therapist, Becky Rutherford. Aubrey is a Boulder-based sensory processing expert, award winning composer and musician, expert horsewoman and Watsu (a combination of aquatic bodywork, massage, joint compression, shiatsu, muscle stretching and dance) instructor. Becky, a sixth grade teacher at Beaver Run Special School in Kimberton, PA, is an expert in Curative Education and the Camphill movement, both aimed at nurturing individuals with special needs toward leading full lives. She and I met at the Camphill Symposium a year ago.  She still carried my business card in her purse, even though she was sure she would never see me again!

Our Assignment

Our mission was multi-faceted.  We were to advise Kuwaiti professionals, officials and parents on all aspects of the proposed center, including curriculum, architecture and engineering, meet and consult with a dozen families, put on a conference, and visit every government agency and non-profit organization having anything to do with autism, cerebral palsy, Down syndrome, genetic disorders and other developmental disabilities.  In a week, in 110 degree heat, with a mandatory siesta each afternoon! We hit the scorching pavement running!

Our gracious hosts accompanied us to about a half dozen schools and centers, including ones for early intervention.  In Kuwait, children are separated by disability, and the approaches are ones that go way back to the seventies. We observed toddlers sitting in hard, unforgiving chairs trying to match colors and shapes and teachers intent upon extinguishing unacceptable behaviors.

It’s a Small World After All

One of Kuwait’s top SLPs joined us and served as our unofficial interpreter.  “Dr. Lulu” trained at the University of Cincinnati, where she shared that she lived with a Jewish family.  “What was their name?” I asked, taking a stab.  Would you believe they were good friends of my family?

One family shared a file folder of reports on their daughter, including a summary from a consultant in Baltimore who had met with them in 1994 when the parents sought medical advice at Johns Hopkins.  The consultant had not seen the child, but took a history and wrote out her recommendations: 1) Begin a gluten-free, casein-free (GF/CF) diet. 2) Use supplements, including omega 3 and probiotics, 3) Have the child evaluated by  an occupational therapist with background in sensory issues, 4) Get an evaluation by a developmental optometrist, and 5) Contact Patricia Lemer and join Developmental Delay Resources!  I nearly feel off my chair!  Although the report was dated May, 1994, it could easily have been written today.  The same recommendations were appropriate!

Vision

Almost every individual with a disability we met had an untreated vision problem. Many had a strabismus, some a nystagmus.   Almost none wore lenses, and those who did were over-prescribed (Yes, I’m practicing optometry without a license again!).  One father told us that the eye doctor anesthetized his 15-year-old, non-verbal daughter with autism to determine her Rx.  At least once a week she rips her glasses off her face and breaks them.  He buys frames by the dozen and every weekend, combines usable components to make new pairs until he runs out of spare parts and has to buy another dozen.  I muscle-tested different strengths of plus lenses on her and recommended one that was half strength.  I’m waiting to hear the results!

Oil Rich, Resource Poor

Many think of Kuwait as a place where the streets are paved with gold and everyone wears Rolex watches; that’s a myth.  Yes, the COUNTRY is rich and takes excellent care of its citizens, but the PEOPLE are just like us.  While they do not have to pay taxes or worry about the cost of gasoline, they work hard to make a living.  They are lawyers, accountants, computer specialists, investment bankers, and business owners. If they decide to go out of the country to seek help for their children with disabilities, it’s on their own nickel.

Occupational therapy (OT) and speech-language pathology (SLP) are both emerging fields, with new master’s degrees just becoming available at Kuwait University.  Until the first classes graduate this year, like almost all other commodities, including food, cars and clothing, therapists are imported.

Multiple Disabilities

Few families have a single child with issues.  Because they live with large, loving, extended families, many homes have several children with delays, including autism, Down’s and some rare genetic syndromes I never heard of.  Obviously the chemical soup from the Gulf Wars, unknown viruses and bacteria, and combinations of heavy metals including depleted uranium, mercury and who knows what else, tweaked their genes in a unique way. I could not help but wonder if the deer tick that carries Lyme disease has a cousin who lives in date palms. Add an incomprehensible vaccination schedule that starts with tetanus shots for the pregnant mother at the fifth and seventh month, a hepatitis B shot at birth for the baby, and monthly boosters containing up to ten pathogens, and you have an immunological nightmare!

And the pattern of birth order defies everything we thought we knew about “toxic load.”  The first couple of children may be neuro-typical, then one or more with autism, and then a couple more without delays.  We also saw many females with disabilities.  What’s that all about? Are estrogen levels low?

Parents Everywhere Have the Same Concerns

Our conference attracted over 100 parents and professionals who carefully wrote out questions and waited over an hour to query us in person. “Will my child ever lead a ‘normal’ life?”  “How can I calm my two non-verbal adult sons with autism sufficiently so they can fly out of the country?”  “How can I stop my son from masturbating?”  “Two of my five children have autism and my wife is pregnant.  How can I prevent my new baby from becoming autistic?” I really struggled to find solutions that were compatible with Kuwaiti culture, religious beliefs and family values.

Center 21

Lamia and Nabil and their friends are extremely concerned about what their son will do all day now that he has no school, no program, nothing to get up for in the morning.  So they took the bull by the horns and petitioned the government for help. After a year of hard work, Center 21 was born. Kuwait is no different than the rest of the world, where those babies born at the beginning of the autism epidemic are turning 21 this year. The need is prodigious.

Center 21 will launch this summer with a small camp of a dozen or so individuals who have autism, cerebral palsy and variety of other special needs. It will gradually grow to 30 or so, and in the fall be housed in a villa. By 2013, hopefully it will expand to accommodate 100, and relocate to a renovated school building.  Hiring will begin soon for bilingual Arabic-English speaking special educators, occupational therapists, speech-language pathologists and recreational therapists.

While no statistics exist on numbers who are aging out of schools, the plan is to serve 1000 young adults with special needs by 2015 on a lively mall-like campus that includes villas, shops, cafes, a medical center, therapy rooms, art studios, a sports complex and more.  A huge undertaking?  You bet!  And if anyone can accomplish this enormous feat it is these dedicated, determined parents!

For now my team’s job is to help the Kuwaitis understand the relationships between health, sensory processing and behavior.  I think if we can accomplish that, our work will be rewarded by seeing these beautiful young adults become more functional.

Next Steps

I cannot wait to set up a testing program to evaluate, identify and prescribe treatments for the underlying biomedical issues. Thyroid problems, vitamin D, essential fat and other nutritional deficiencies are clearly rampant.  We have already started working with Great Plains Laboratory and New Beginnings Nutritionals in this regard.  A Kuwaiti pharmacy is prepared to import whatever supplements are necessary to treat underlying problems.

I hope to return to Kuwait in the fall, as the Kuwaiti’s say often, “In sha Allah.” Lamia, Nabil and their extended families were such generous hosts. We parted in tears with promises to stay in touch.  Putting together a team of developmental vision experts is my next goal.  Some lenses, prisms and simple visual therapy activities can make a HUGE difference for these young adults.  I believe we can “buy” 10-15 IQ points with these measures that take stress off the nervous system and free up energy for other functions.   Is it too late?  Never!

I am heartened by one touching “thank you” I received from a father, who told us that all he wanted was for his 21-year-old daughter to be happy.   “You taught me so much, and believe me, if I had the chance, I would be your house boy to learn from you. Friends come into our lives and go out of our sight, but they are always in our hearts.  You will be always with us here in Kuwait. You are a second family and country, and if you are in this part of the world again, please come and see us.”

It doesn’t get much better than that!

The Medicated Child

November 15, 2009

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PBS stations nationwide ran a documentary last week on FRONTLINE entitled The Medicated Child. Marcela Gaviria produced this piece in an effort to respond to the dramatic increase in the number of children with serious psychiatric diagnoses, including bipolar disorder. The program also was to focus on the one-size-fits-all treatment with untested pharmaceutical medications that doctors are prescribing for these children. 

According to child psychiatrist Dr. Patrick Bacon, trying medications on young children is really an experiment…a gamble… we do not know what’s going to work. I tuned in with great anticipation, hoping at last to see some expert reporting on alternatives to drugs, whcih can cause serious short-term reactions and unknown long-term effects.  What I saw instead were many sick kids with black circles under their eyes, obvious vision problems and nutritional deficiencies that no one was talking about!

The trailer promised that the producer would “confront psychiatrists, researchers and government regulators about the risks and benefits of prescription drugs for troubled children.”  Yet this film and its doctor experts offered few alternatives.   

The Parents’ Guide written by Harvard Medical School child psychiatrist Joshua Sparrow to accompany the documentary “provides background on the issues associated with treating a child with psychiatric medications.”  Unfortunately, it too falls short of giving parents and teachers any practical alternatives. 

In the section entitled Observing, Describing and Understanding Your Child’s “Out-of-Control” Behavior, Sparrow offers several bullet points.  I reproduce them here with my edition of the type of information I wish he had provided.

  • Warning signs – Early risk factors for behavioral and learning issues include:
    • Missed developmental steps, such as no crawling  
    • Repeated infections, such as strep, ear infections
    • Skin problems, such as eczema and serious diaper rash
    • Chronic diigestive problems, such as reflux, diarrhea or constipation
    • An eye turn, called a strabismus
    • Hyper- or hypo-reactivity to sensory stimulation such as lights, sounds and touch
  • Triggers – All behaviors are reactions to something in the environment. Common triggers are:
    • Foods. Some kids’ digestive systems react to popular foods, such as dairy products, gluten (the protein in wheat and other grains), eggs, chocolate and soy.  In babies who have any of the above digestive warning signs, food is suspect.  The reaction may not be immediate.  I watched one child gradually dissolve an hour after a lunch of pizza and milk. 
    • Food additives. Artificial colors, flavors and preservatives, such as BHT cause behavioral issues in susceptible kids.  The Feingold Association has known this for years and is available to help.  Excitotoxins, such as fluoride, MSG and aspartame can all cause behavioral and psychiatric problems.
    • Pesticides and cleaners.  Many kids react to products used to exterminate bugs and eliminate bacteria.  Behavioral issues are more common on Mondays than any other day, due to schools being cleaned on Friday and closed up all weekend.
    • Chemicals from carpets, paints and other building materials.  Any building with new construction or renovation is suspect.  Formaldehyde from new cabinetry, fabrics and carpets can set off many kids.  The fumes from new paint are also toxic. 
    • Perfumes and air fresheners.  Some people become literally psychotic from breathing the artificial smells from these products. 
    • Contexts, settings – The cafeteria and playground are common “meltdown” arenas.  Why?  Because of the noise levels, bright lights in the former and possible mold, sprays and pollen in the latter.  I know one boy who acted out every time he went to the “reading room” where the teacher had placed a lovely, toxic, area rug.  Everyone thought he hated reading.  What he hated was the rug, and when it was removed, he was fine!
  • Symptoms – Symptoms are very individual and sometimes subtle. Doris Rapp, MD has been an expert on this for many years.  Some kids go into meltdowns.  Others may get spacey, talk too loudly, put their hands over their ears, stomp their feet, run in circles, scream, cry, kick, self-stimulate, throw things.  Some may be seeing double, become unfocused, stare out the window, look “depressed,” get sleepy, blink, look out of the corner of their eyes, fiddle with their clothes, masturbate, mouth objects. Any and all of these symptoms must be looked at diagnostically, rather than as behaviors to extinguish. 
  • Aftermath – Timing, frequency and recovery periods are crucial to evaluate. Keeping good records will help in the Sherlock Holmes process of pinpointing and eliminating triggers. 
  • Effect on overall functioning – Environmental reactions can interfere with a child’s learning, social relationships, sports performance and consume a family’s emotional and financial resources. Make changes for all family members and the whole class rather than just for the behaviorally reactive child.   

Consider non-pharmaceutical alternatives

If only FRONTLINE had included these interventions:

  • Change the diet – Consider eliminating colors, flavors, preservatives, excitotoxins.  Learn about Feingold, the Body Ecology Diet, the gluten-free dairy-free (GFCF) diet
  • Up the nutrition with foods and supplements – Add essential Omega 3 fats such as cod liver oil and flaxStudies show conclusively that good quality fats are efficacious alternatives to drugs
  • See an occupational therapist (OT) – Have the child evaluated for sensory integration problems by a private therapist who can pinpoint underlying reflex integration issues, tactile defensiveness, vestibular dysfunction or auditory processing problems.  Sensory-based OT can program the nervous system to respond in a more balanced way.
  • See a developmental optometrist (OD) – Make sure the two eyes are working together as a team and that the brain is giving proper meaning to what it sees.  With an eye turn, depth perception is impossible. Sometimes eye turns occur only intermittently and must be diagnosed by an expert.  Therapeutic lenses and vision therapy that includes activities to help the eyes and brain work better together can alleviate behavioral and learning issues.

Congratulations to FRONTLINE for recognizing the serious risks medications for bipolar and other disorders pose. We heartily  agree with them that research and insurance coverage for non-medication treatments are under-funded, and recommend that treatments such as these deserve further investigation.    

We can also concur that the forty-fold increase in the number of children and adolescents diagnosed with bipolar disorder over the past 10 years might be due to preventable causes. The simultaneous increase in environmental toxins, reliance on technology such as computers and television, and changes in food nutrient contents and genetic engineering are just a couple of obvious areas to    consider.

Thank you to the parents who took the time to tell their own stories of drug horrors and success with the Feingold program, naturopathy and other “natural’ solutions.  Add yours!  Maybe one day PBS will give us a useful commentary on how to prevent and help kids without drugs.  I sure hope so!  In the meantime, you can find out about more therapies that work in my book EnVISIONing a Bright Future

 

 

 

 

 

 

Temple Grandin: A Real Inspiration for People with Autism

July 23, 2009

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Yesterday I had the pleasure of hearing Temple Grandin speak. Thank you to Community Health Connections for bringing her to Pittsburgh.  I have attended Temple’s talks a half dozen times over the past 20 years, and each time I am amazed at how she continues to develop her skills. 

As arguably the world’s most accomplished adult with autism, Temple spoke with minimal notes and a high level PowerPoint presentation for almost two hours.  She was funny, irreverent, passionate and articulate.  How awesome is that, given that once she was a non-verbal, temper-driven child who sought solace in her relatives’ cattle brander to comfort herself? 

While pacing back and forth and waving her arms at times, Temple covered a good number of subjects:

  • How imprecise and meaningless labels are in helping those with autism
  • How “brains with problems” have sensory issues that sometimes look like “bad behavior. Maybe it’s those flickering lights, memory of the sound of a fire alarm or an itchy t-shirt.
  • How medical problems such as constipation, toothaches and yeast infections can also cause behavior problems.
  • Helpful accommodations for those with visual and auditory processing problems such as using colored paper or tinted/prism lenses, incandescent instead of fluorescent light bulbs, and wearing a hat.
  • Why we have to return to the practice of expecting even our most disabled children to take turns and do chores. Play board games and walk the dog, she advised.
  • Why hobbies and clubs are essential for learning social interactions. Chess, rockets, video games give kids something to talk to each other about.
  • Why she prefers aerobic exercise, deep pressure, special diets and omega 3 fats to medications with untold side effects. She is now taking probiotics and EFAs in addition to her “old-fashioned” meds for anxiety. 
  • The differences among the different classes of drugs, and why she is opposed to labeling and drugging very young children.
  • Possible successful careers for individuals at both ends of the spectrum.

Temple believes that too many of today’s teens and young adults with Asperger’s  are unemployed and unemployable because they have not had the advantages she did.  While she hated what she calls her “Miss Manners” lessons, she now recognizes their role in teaching her not to swear, make fun of overweight people, dress neatly, and chew with her mouth shut.  She related that she was over 30 before she understood why she had to so something to please others.

If you are unfamiliar with Temple’s story, I strongly recommend reading Emergence: Labeled Autistic, her early story, and Thinking in Pictures, written later in life.  Her latest biography is The Way I See It:  A Personal Look at Autism & Asperger’s.  Her love of animals, which led to her career as the world’s foremost animal handler, is palpable in her Animals in Transition and her newest book, Animals Make Us Human.  More information on these and her work are available at www.grandin.com.

Thank you, Temple for all you do to help those with autism.  Giving you a copy of my book EnVISIONing a Bright Future, and shaking your hand yesterday was a real thrill.  After I unthinkingly and spontaneously extended my hand, I did not know whether to withdraw it quickly or wait.  When she took it and gave me a hearty shake, I thought, “WOW!” What a long road she has traveled!

 

Judith Bluestone HANDLE

March 7, 2009

Owner wrote:

HANDLE Founder Judith Bluestone Passes Away

On February 18, 2009, the world lost an amazing woman.  Judith died at the age of 64, in Atlanta, GA, where she had lived for the past several years. She is survived by her son and sister, and by thousands who very personally feel the loss of her from their lives.

Judith Bluestone was an internationally renowned specialist in neuro-developmental disorders and learning challenges. As an intuitive healer and educator, she had remarkable gifts for enabling function in herself and others.  

Judith dedicated her life – heart and soul – to the creation and expansion of The HANDLE® Institute in Seattle, WA, which she founded in 1994, the same year I co-founded DDR.  I first met her soon after we both started our organizations, and realized that we were definitely “on the same page.”  I was humbled by how Judith had experienced many of the same issues as her clients: autism, seizures, constant pain, and hypersensitivities, and was applying what she had learned about healing herself to others.   In the end her efforts became overwhelming.

Judith spread awareness of HANDLE® around the world. Just looking at her course schedule would exhaust the average educator: Australia, Canada, Czech Republic, Hong Kong, India, Israel, New Zealand, South Africa.  Bluestone created the Holistic Approach to NeuroDevelopment and Learning Efficiency (HANDLE®) in the 1980’s and through the Institute, trained and certified over 125 individuals as Practitioners and Screeners of the HANDLE® program.  Go to www.handle.org to view the schedule of courses the Institute is offering, and attend one if you have never experienced HANDLE®

Judith received much acknowledgement for her achievements.  In 2004, she won the Jefferson Award in Seattle, and then the national Jacqueline Kennedy Onassis Award for community service. 

I met with Judith in Atlanta last year at her home office and therapy studio.  She and I reminisced about how some of the “new” therapies are reincarnations of ones we practiced in the 1960’s, and shared our excitement about the strides we have made in the 40 years we have been helping children with special needs. We spoke of collaboration and perhaps a joint conference with DDR and HANDLE®, with the two of us as keynote speakers.  Alas, that will never be.

Judith left The HANDLE® Institute in Seattle in capable and loving hands, and it will continue the work she began. If you would like to do something in honor of Judith, please share your knowledge of HANDLE with anyone you know who might benefit from it. Or make a non-tax-deductible donation to The HANDLE Institute International, LLC to support the Institute or to The Churkendoose Project, a nonprofit organization whose mission it is to provide opportunities for many to experience the benefits of HANDLE. The Project’s contact information can be found at www.churkendoose.org.

The HANDLE Institute has set up an email for you to send your questions, thoughts and memories about Judith. Please share them at HANDLEassist@gmail.com.

 

 

 

 

 

 

From Play to Work with Hattie Larlham

September 8, 2008

On a beautiful day last week I hopped into my car and drove to Mantua, Ohio, about two hours away, to visit Hattie Larlham, the new workplace of my friend, Ingrid Kanics, an occupational therapist.  I was not prepared for my emotional reaction to this astounding multi-dimensional operation serving more than 1000 children and adults with severe disabilities.

I had started my career in Boston at a facility very much like Hattie Larlham.  In fact, Kennedy Hospital was the first place I met an OT and learned about the power of movement.  Soon after I moved back to Pittsburgh, I was introduced to Ingrid, who was busy making play spaces accessible to all kinds of children.  Her two-story treehouse at Pittsburgh’s now defunct Center for Creative Play allowed kids in wheelchairs to get a birds-eye view.

Now she is in Ohio, honing her skills with the same population of medically fragile children I served in the early 1970’s  Just look at the picture of what she has designed! Ingrid’s skills have earned her several awards for incorporating sensory skills into children’s play areas in parks and museums. 

Hattie Larlham was a registered nurse who, in the sixties, became frustrated by the lack of programs for children with disabilities.  So she and her family started the Hattie Larlham Foundation and took children into their home and cared for them. Today, this amazing organization provides residential and community care through group homes, foster care, vocational training and other services.  Its 27 acre campus is growing and changing daily.  Ingrid showed me construction of new therapy rooms, a pool, multi-sensory room, apartments and eating areas that provide a home-like atmosphere of those with developmental disabilities.

Two of the most unusual programs are the sensory playground and the art room.  The programs are truly multi-sensory.  Even the most physically challenged residents can paint and draw by working with technology and a human partner.  The art that is produced is such high quality that it sells for respectable prices at local art and craft fairs.

After the campus tour, Ingrid drove me into Hudson, a charming historic town where Hattie’s Café  and Gift Shop occupy the town’s old pharmacy.  The Hudson location is one of three cafes run by Hattie Larlham.  Complete with old-fashioned soda fountain stools and lighting, it sells lunches, fair-traded items like coffee, and home-made products, both edible and artsy.

We ate a delicious salad prepared and served by a young adult with Down syndrome.  Other employees worked in the kitchen and were making gift baskets with a variety of themes, such as “Just Ducky Baby,”  “Best Teacher” and “Doggie Basket.” All purchases support education and training. Gift baskets are great ideas for holiday giving.  To view them and order, go to www.hattiescafe.org

Hattie Larlham was way ahead of her time.  Wouldn’t she be pleased at how her ideas have grown with the times and still maintain her homestyle feel? To learn more about Hattie Larlham, go to www.hattielarlham.org

Radio Interviews – Listen in!

July 31, 2008

I have just completed three radio interviews about my new book EnVISIONing a Bright Future. What fun it is being on the “other side” of the table after a year as interviewer on Autism One Radio.  It’s amazing how much you can fit into a half hour with a good show host.  I was fortunate to be interviewed by the BEST!

First was on May 28th, with DC area nutritionist, Dana Laake, a long time DDR supporter and friend.  Dana’s show, “Essentials of Healthy Living™” is broadcast live Wednesday nights 5-6 pm on 1260 AM in the Washington, DC area.  If you are not in range, you can listen online at www.progressivetalk1260.com . This show is sponsored by The Village Green Apothecary in Bethesda, MD, another long time friend of DDR. Look in your new 2008 DDR Directory, which you should receive next week, for a discount coupon for nutritional supplements from the Village Green.  They also have copies of my book for sale. To listen to my interview, click on http://ehlradio.com/ArchivedShows/Index.htm

On July 9th, I was jointly interviewed by Chiropractor Larry Bronstein and Special Educator, Deborah Alecson, of CHILD Treatment and Consulting Services, on WBCR, 97.7 FM in Great Barrington, MA for their program, “Food For Thought: Children, Nutrition and Learning.”  We had a lively hour-long discussion of the various treatment options described in my book.  Since the station does not archive shows, I have the program on a CD.  As soon as I figure out how to upload it, I will put the link here.

For the above two interviews I simply dialed a phone number, and was magically broadcast live on the airways.  For my third interview, on July 23rd, I drove to Pittsburgh’s South Side to the studios of the Radio Information Service, a radio reading service for people with visual and physical disabilities.  There I was greeted warmly by Marilyn Egan, the host of ‘Towntalk,” who fitted me with a microphone and showed me how to use the “cough box,” should I feel the urge.

I had met one of the show’s co-producers, Joyce Driben, at a Disabilities Awareness Fair at PNC Park one beautiful evening in June, when the Pittsburgh Pirates honored individuals with all types of disabilities. Sight-impaired, Joyce had used a special machine to write down my phone number in Braille, and had her co-producer Jeanne Kaufman call me to set the date for my interview.  Radio Information Service (RIS) has been reading all types of print materials from newspapers to magazines, advertisements, books, death notices, and even TV listings to people with eyesight loss due to many causes for over 30 years. Qualified listeners can tune in for a small fee.  To listen to Joyce’s targeted interview of me, go to www.readingservice.org Click on “Listeners” and log in with the User Name: volunteer, and the Password: guest05.  Then click on Towntalk to hear the archived show.

I thank all those who have made these interviews possible and would be happy to do any others.  Please let me know if you have access to other opportunities.

Treat Needs not Behavior: Maslow for the Milennium

September 3, 2000
Mental health professionals and schools often depend on a behavioral model to address  emotional and learning issues. Programs such as 1-2-3 Magic, discrete trial training, time out and even tutoring reward positive behaviors and attempt to extinguish less desirable ones. An alternative way to approach problematic behaviors is to look for the underlying needs that drive them. Let’s visit a third grade class, where I recently observed Emily, a mainstreamed nine year old with PDD.Emily wiggled and squirmed, walked to the water fountain, took a long drink, sharpened her pencil and sat down.  She tucked her foot under her leg, which dangled above the floor, chewed on her pencil, tapped it on the desk, and twirled it in her hair.  She stared hard at the visitor. “Teacher, teacher!” she called.  No answer.  Emily glared again, and then tried to make an arithmetic sentence using 8, 3 and 5. “Ooo…ww,” she wailed suddenly.  Her classmates rolled their eyes.  The teacher stared.  “Ooo…ww,” Emily cried louder. Finally, she jumped from her seat. “OOO…WWW,” she screamed. I couldn’t help thinking of psychologist Abraham Maslow’s hierarchy of human needs. Obviously, Emily’s basic needs for water and recognition were competing with her teacher’s need for her to learn mathematics. Are there any solutions, I wondered, that meet both Emily’s and her teacher’s needs?

Coincidentally, the same day I discovered the new book, The Irreducible Needs of Children, by Drs. T. Berry Brazelton and Stanley I. Greenspan. Each of the needs they describe applies to Emily and others whom DDR supports. Four needs are analogous to Maslow’s.
Maslow Brazelton & Greenspan
Biological           Experiences tailored to individual differences
Safety                 Physical protection, safety and regulation
Security              Ongoing  nurturing relationships
Knowledge         Developmentally appropriate experiences

Maslow believed that only after children’s most primitive biological needs are met should adults address the higher level needs for safety, security and knowledge. Unfortunately, in today’s schools many teachers put acquisition of knowledge first.  Emily and others have basic biological, safety and security needs that must take precedence.  Her behavior shows us what these needs are.

Biological needs:  Water nourishes the brain; the mouth organizes it. Emily’s brain, like everyone’s, needs water to function. According to Carla Hannaford, author of Smart Moves: Why Learning is not all in Your Head (see booklist), optimal hydration enhances the brain’s ability to process information efficiently. The mouth is also key to a well-organized brain. Both sipping water and chewing on a pencil are calming. Emily unconsciously did both to get focused. Ideas: Provide everyone with a water bottle. String plastic tubing on a cord for chewing. Hydration and oral-motor work will increase focus for all students.

Safety needs: Children struggle to look/listen when underlying senses are inefficient. Feeling “safe” means more than being out of range of gunfire. Emily has sensory processing and regulatory problems that cause her much anxiety. When children fear unexpected movement, touch and sounds, they become hyper-vigilant, as Emily’s staring suggests. Emily simply cannot pay attention to staying seated and do her math problem simultaneously. Ideas: Provide Emily with occupational therapy to normalize her regulatory and sensory processing dysfunction. Put a fidget toy in her pocket to provide appropriate touch and pressure as needed. Do Brain Gym activities before  lessons. Allow movement breaks at least every 20 minutes.

Security needs: Ignored needs don’t go away; they become stronger and undermine nurturing relationships. Being posturally/gravitationally secure helps a child to feel emotionally secure. Emily’s desk and chair are ill-fitting, and her dangling feet, disconcerting. Emily tucks her leg to feel more secure, but the total sensory experience of two ungrounded legs puts her “over the edge.” Her Teacher ignores her, hoping to extinguish her outbursts, but Emily’s need to be heard overtakes her need to learn. Ideas:  Provide Emily with a footstool, a cushion or seat wedge and a chair with arms. Pair her with another student, so that they can work together and Emily has someone who might listen.

Knowledge needs: Children learn and remember lessons when they are developmentally ready.  Emily’s math lesson makes no sense to her. She cannot make number families because she still doesn’t know that eight is more than five. Ideas: Use manipulative materials and story problems to give the mathematics lesson some meaning. Have Emily use the manipulatives while her partner makes the number sentences.

A combination of behavioral therapies and sensory-based, developmentally appropriate activities are best for young children.

[New Developments: Executive Director’s Column, Fall 2000]

Serious Talk About Humor

April 3, 2000
On my answering machine was a message from the mother of Lance, a fifth grader with Asperger’s Syndrome. She was distraught. Sassing the speech-language pathologist (SLP) who ran a weekly social skills group, Lance had exclaimed, “You can’t tell me what to do.” “To the office!” she spat. “You are suspended from this group for three weeks. And you are sentenced to detention, besides!î“Patty, find us another schoo!!” Lance’s mother cried. “I can’t take this anymore.”

Listening, I agreed wholeheartedly. I had just returned from the 15th annual international conference on the Positive Power of Humor and Creativity. sponsored by The Humor Project in Saratoga Springs, NY. After spending the weekend taking life seriously and myself lightly, I wished that the SLP had been with me to hear Joel Goodman’s sage words.

Seven Good Reasons to be Serious about Humor

Jest for the health of it – The health-humor connection is well documented. Norman Cousins helped alleviate pain by watching Marx Brothers movies. Laughter (”jogging for the guts”) increases the immune system’s functioning and reduces stress-related hormones. For kids with immune system dysfunction, laughter is essential.

Love And Understanding Give Hope To Emotional Recovery. Teachers and parents need a readily available “mirth aid kit,” equipped with bubbles, stickers, and zany props. A smile is the shortest distance between two people- Transcending age, rank and size, humor connects people. It helps people disagree without being disagreeable. Whereas businesses use

Total Quality Management (TQM), schools and families need TQH (Total Quality Humor). Laughter loves company, and company loves laughter- Do announcements over the loudspeaker at school get much attention? What if they were humorous? Suppose the principal offered a joke- of-the-day prize. Would more ears perk up? Ben and Jerry’s awards “joy grants” to its employees for good performance. How about joy grants for can-do teachers and students? How about a trip to the toy store for Lance’s good behavior – instead of detention for sassing?

It’s laughademic– Laughter and learning can go hand in hand. Humor in a lesson captures attention, reduces tension, and increases retention. The act of laughing adds energy that further increases learning. Humor creates inverse paranoids- An inverse paranoid is someone who thinks the world is there to do her good! Seeing the world through positive, optimistic eyes is crucial to success as a parent, teacher and student.

Laughter has no accent– Laughter bridges international barriers. It speaks a common language and brings people from different backgrounds together. In our increasingly diverse world, laughter can unite us.

Laughter lessens stress and tension– It allows people to move from “Grin and BEAR it” to Grin and SHARE it.” Imagine the tension of that moment when Lance erupted. What if the teacher had been humorous instead of authoritarian?

Here are some reasons that might have stymied her:

Five BLOCKs to Using Humor

Barriers to perception — Lance is labeled as a child with autism.
Lack of a positive outlook — The adult perceives him as problematic.
Old ways of doing things — Good teachers never let kids take control.
Conformity — Kids must conform to specific behaviors.
KIller statements — “Yes, but I” kills everything before the but.

Let’s rewind the tape and try again. What would have been the outcome had the SLP used humor to disarm Lance and find out what provoked him? Responding to Lance’s “You can’t tell me what to do,” she could have shrugged and said, “Oh, I’m so confused. I thought I ran this group. Hey, if you want to try, I would welcome your assistance.” “Thanks,” Lance might have said. “I have some fun ideas.” “Let’s hear them,” the flexible and fun-loving SLP might have said.

If the SLP had connected with Lance and agreed with him, maybe we wouldn’t need to seek a new school. Humor might have made a huge difference. Fortunately, it’s possible for Lance’s SLP – and you – to take advantage of the wisdom of Joel Goodman and his wife, Margie Ingram. You can order tapes of all sessions of the recent conference from Professional Programs (661-255-7774). Better yet, attend their Adirondacks summer camp for grown-ups, July 23rd-28th. The focus is, “Humor and Stress Management: Tickling Stress Before It Tackles You.” Contact The Humor Project at 518-587-8770 or, mark your 2001 calendar and join me, March 30-April Fool’s Day. I always look forward to my annual jump-start and would love to C U there!

[New Developments: Executive Director’s Column, Spring 2000]

Prioritizing Interventions

December 3, 1999
Families who join DDR sometimes share that they are confused about the order in which to pursue interventions for their child. They hear from well-meaning friends, parents and teachers about the benefits of various treatments. Which should they try? B6 and Magnesium? Auditory training? Special glasses? Tutoring? If only a sequence were available to guide them….Here I attempt to grant their wish. I devised the following chart to clarify how to proceed. Explanatory details follow the table.

OPTIMUM THERAPIES AT EACH AGE LEVEL

  • Age 0-3: SI-based OT/PT; Nutrition; Speech/Language; Osteopathic Movement
  • Age 4-7: SI-based OT/PT; Speech/Language; Play Therapy; Music Therapy
  • Age 8-12: Vision Therapy; Speech/Language; Martial Arts; Perceptual Motor
  • Age 13-18: Psychological; Academic; Vision Therapy: Nutrition; Hippotherapy
  • Age 19-Adult: Social-Emotional; Vocational; Academic; Nutrition; Hobbies

Remember that every child is unique. Find experienced professionals within each specialty who will take a very thorough developmental history before suggesting an individual protocol. Then, get a second opinion before you decide upon a course of treatment. Next, understand that a child’s “age” is not chronological, but developmental. A child is as old as she acts. Determine whether your child’s developmental skills are on target and whether lower level needs have been addressed. Focus on one or two primary therapies that utilize about 75% of your available time and financial resources. You may want to select another, secondary, therapy that will take up 15%. A less intensive, “fun,” therapy will complement the goals of the other treatments.

Step 1 (Age 0-3): Therapies at this level lay the foundation for motor, sensory-motor, language and cognitive development, which must wait until the body is ready physiologically. Nutrition includes both dietary modification and nutritional supplementation. A proper protocol can reverse damage done by allergic and vaccine reactions and boost the immune system. Occupational therapy, physical therapy and movement of all kinds (especially sensory integrative) enhance binocular vision, depth perception, bilaterality and language. Balance and anti-gravity activities stimulate the language center of the brain. If your child had a difficult birth, osteopathic manipulation and CranioSacral therapy can help realign bones to allow bodily fluids to flow appropriately.

Step 2 (Age 4-7): Once the body is ready, language should emerge naturally, as it does in typical development. If language is delayed, it is time to focus on understanding and expression with a speech-language pathologist who utilizes sensory integration techniques. Different types of auditory training enhance language and eye movements by stimulating the vestibular system, located in the inner ear. Play therapy encourages a child to use language purposefully through interpersonal interactions. Music therapy, using a variety of instruments, combines auditory, social and movement activities with singing and dancing.

Step 3 (Age 8-12): Now, focus on academics. Ascertain that the child’s sensory systems are working properly. If not, in-office and home vision therapy by a behavioral optometrist, using a combination of lenses, prisms and movement-based activities, may be necessary to resolve eye movement difficulties or binocular dysfunction. There is a myriad of ways to teach reading and writing. Tutoring by an experienced practitioner using a specialized program or trade books comes next. If vision is working well, a child will “break the code” and read with good comprehension. Pre-teen years are a fine time to build self-esteem through martial arts or group psychotherapy.

Step 4 (Age 13-18): Step 4 is an extension of Step 3. Further work on academics and a focus on self- esteem are essential. This is the time to begin transition planning and to determine post-secondary school options. As your child’s hormonal changes occur, revisit nutritional needs. Supplements may need adjusting as eating habits change. Vision therapy may move from work on binocular skills to visual thinking and organization. Horseback riding (hippotherapy) is an amazingly empowering intervention for teens unable to participate in group sports.

Step 5 (Age 19-Adult): Resolving delays does not necessarily end because a child moves into adulthood. There are many ways to fine-tune and encourage growth. Depending on his literacy level, a child now develops life skills in the working world. A complete evaluation of vocational aptitudes and interests is essential. Grooming, cooking and using money are all part of vocational training. This can focus on getting and keeping a job as well as developing hobbies. It is important that adults with disabilities find pleasure in animals, plants, the out-of-doors and other alternatives to television and computer games. Whatever the age of your child, use this guide to choose appropriate interventions.

Trying an interesting new option may make a huge difference.

[New Developments: Executive Director’s Column, Winter 1999 – 2000]