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.
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.
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 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!
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.
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.
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.
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!