Kuwait Revisited: Offering Help to Those with Severe Disabilities

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

It all started with an innocent email on April 12^th.  “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!