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!

Biological Medicine: The Latest from Dietrich Klinghardt

March 6, 2012

I just spent three days in New York glued to every word from my favorite genius, Dietrich Klinghardt, MD, PhD .  My head is spinning!  I want to shout his knowledge from the top of every mountain and have it echo across the world.  Instead, I will have to depend upon the magic of the Internet and cyberspace to get the word out.  Here are some of the highlights bursting from my brain in no particular order.

  • Electro-smog – My daughter says I am obsessed with the dangers of electro-magnetic fields, and maybe I am.  Listening to Dietrich and Magda Havas, PhD, a Canadian expert on the subject, is chilling.  The biological effects of electromagnetic pollution are only beginning to be understood.  With exposures escalating at exponential rates, electro-smog is being associated with an increasing number of diseases and conditions. 

Electro-smog refers to electromagnetic fields (EMFs) and radio frequency radiation (RFR) generated by our use of electricity and wireless devices.  It includes High frequency radiation from microwaves, cellular phones and wireless, Intermediate frequencies from “dirty electricity” emanating from transformers, fluorescent lighting, computers and plasma televisions and Low frequency fields from computers, copiers, clock radios and electric heaters. 

Here’s a couple of gems that I gleaned:  1. The keyboards of laptop computers send dangerous radiation into your hands!  Solution: Attach an external keyboard.  2.  Exercising on a treadmill raises blood sugar markedly because of the EMFs!  Solution:  Exercise out-of-doors.  3. Compact fluorescent light bulbs give off high levels of EMFs!  Solution:  Stock up on incandescent bulbs or change to LEDs. 4. Teachers in “hot rooms” in schools (computer labs especially) took far more “sick” days than other teachers!  Solution:  Get out of computer labs!

General solution:  Buy a Gauss meter and take measurements of EMFs at home and school.  Purchase filters for electrical outlets that block dirty electricity.  Remove all computers, plasma TVs and wireless phones from the bedroom.  For more information on this important subject, go to www.lessemf.com and www.stetzerelectric.com

  • PANS is the new name for PANDAS – What used to be known as PANDAs for Pediatric Autoimmune Neuropsychiatric Disorder associated with Strep has been shortened to PANS for Pediatric Acute-onset Neuropsychiatric Syndrome because bugs in addition to strep are causing the same obsessive-compulsive symptoms.  See Scientific American February 2, 2012.  Lyme and Mycoplasma bacteria, Epstein Barr Virus, and bartonella (the bug that causes “cat scratch” disease) are just a few that have been added to the list of infectious triggers.
  • Tonsils: “the Achilles heel of the human condition” – The big news is what Klinghardt brings to the PANS discussion.  He believes that these bugs live in the infected tonsils of their human hosts, and he has designed a very complex treatment including injecting them, with procaine and ozone, gargling with a fermented product rich in biofilm-dissolving enzymes, and, as a last resort removing them with cryotherapy (burning them off) so they will regenerate.  Read about this procedure in an article from the DDR newsletter.
  • Cats do not belong in the home – I am a cat lover.  My 18-year-old Tussy Pat decided not relocate from Maryland to Pittsburgh two weeks before my move, and I have not replaced her.  After listening to the dangers of having a cat in the house from Dietrich, I’m actually happy I made that decision.  He believes that bartonella is one of many critters that prefer humans to their feline hosts.  The bugs jump and the whole family gets sick.  Solution:  Not cats on the bed or sofa.  They belong outside where they can catch mice, their reason for existence!   Is your cat making YOU sick?  Read this new article in the Atlantic.
  • Doctor your water – We’ve all heard that we are supposed to drive eight glasses of water a day.  Any water?  Absolutely not, according to Klinghardt!  Tap water needs to be treated by reverse osmosis to remove fluoride.  Also add electrolytes and minerals.  Good hydration is an essential foundation for the kidneys BEFORE starting any detoxification program. Klinghardt also believes that dehydration can lead to mitochondrial disorders by slowing down the speed of electrical impluses.
  • Sleep safely – Along with good hydration, a safe sleeping environment are the two most important factors for health.  In addition to removing all EMFs from the bedroom (see above), he puts suggests a sleep “cocktail” made up of tryptophan, 5HTP and lithium oratate for all his patients.  For those with severe insomnia he also recommends the use of a cranial electrotherapy stimulation (CES) machine for 20 minutes between dinner and bedtime.  Stimulation is applied through electrodes placed on the ears.  The efficacy and safety of CES therapy is supported by many studies in the US and in the former Soviet Union where it was developed in the 1950’s. A doctor’s prescription for its use for sleep disorders is required.
  • Parasite testing – As I discovered personally, stool testing for parasites is notoriously unreliable.  Klinghardt helped me understand why.  The live bugs rarely come out, and if they do, they secrete a film that within 15 minutes makes them invisible!  Only “fresh” poop can show parasites, so either buy a high-powered microscope or go to a lab that is prepared to whisk the stool sample away immediately and test it.  Forget those which require freezing and mailing.
  • New Homeopathics – Dietrich has formulated some new remedies that are prepared in a special energetic matrix of sacred water, natural amino acids, minerals and vitamins.  The frequencies of the peptides and remedies are imprinted energetically, using a newly developed laser/electromagnetic technology from Europe.  These homepathics are far less expensive than other treatments for resolving autoimmunity issues, treating co-infections of Lyme, and assisting with the transport and elimination of heavy metals.  Order from www.BioPure.eu
  • Activated Charcoal depletes Vitamin C – This oft-used “harmless” product should be replaced by MicroSilica, which not only absorbs excess water in uncontrollable diarrhea, but also activates detoxification enzymes.

These are only a few of the many pearls I gleaned from my three days in New York.  If you are interested in more, I strongly recommend purchasing the proceedings, which will be available in April from the Klinghardt Academy, www.klinghardtacademy.com.  Better yet, go to one of Dietrich’s  upcoming trainings and experience his magic yourself.

Gastroenterology 101

October 26, 2011

Digestive system

I just returned from an early morning appointment with my fifth local gastroenterologist. The reason I keep looking for one is that I have had a flare-up of digestive problems since summer.  You may recall that I had parasites, about which I wrote in 2007. Dr. Dietrich Klinghardt in Seattle prescribed a  combination of antibiotics and herbal preparations which killed those critters then. My present symptoms are similar, and showed up following a colonoscopy.

I travelled to Seattle in ’07 because I could not find a gastroenterologist in Pittsburgh who would consider parasites as apossibility.  After the last one told me without cracking a smile that “food has nothing to do with digestion,” I swore I would NEVER go to another.  Hoping not to have to return to Seattle, I gave Pittsburgh’s doctors one more try.

This one looked  different:  a female with a certification in nutrition!  My hopes that she would know something about diet were shattered however, when, after completing my colonoscopy this summer she handed me a prescription for colitis, while I was still under the cloud of anesthetic. In response to my question about foods, she declared that there was “no known diet” for that condition.  I tossed her prescription, after reading the long list of side effects online.  Still, I harbored the false hope that I might have a conversation with her about my chronic condition. Hence the appointment this morning, for which I rose at the ungodly hour of 5:30 am and drove in the dark to be there at 7:00 am.

The night before I had dutifully and carefully completed an 8-page questionnaire, with queries about my family history of illness, my present medications (only a bit of thyroid), and supplements (a lengthy list of herbs and vitamins which required an additional page.) The paperwork contained not a single question about diet.  Since I was instructed to bring my history with me, I doubted seriously whether
anyone would read it before my appointment. I was correct.

First, an obese nurse weighed me and took my “vitals.” (Is it my imagination or are most nurses unhealthy looking and overweight?) She registered surprise at my low blood pressure. “How old are you?” she asked.  “It’s in my paperwork,” I replied petulantly.  Next, I was moved to a tiny room with a single chair and a lone magazine, “Colitis Today.”  The door closed. I decided to flip through the magazine while waiting. Articles about dealing with the psychological effects of the disease, and ads for clothing that allowed quick and easy toileting. I slammed it shut.  Was I in denial?

Thank goodness I brought a book.  After 15 minutes, another over-weight nurse came rushing in (two for two!),  apologizing.  “Oh, you’re in the wrong room! Follow me.”  We wentacross the hall to an identical cubicle. The reading material in this room was a sports magazine with Raphael Nadal on the cover. Obviously, this was the right room, since I am a tennis fan!   I waited some more.  After another   15 minutes (it’s now 8 am.  I could have slept another hour! How can adoctor be running an hour late first thing in the morning?) A rap on the door, and  the doctor appears with my paperwork in hand.

I had scripted a brief description of my life’s work with families of children with disabilities and my belief that diet and nutrition were worthwhile treatment options.   Before I opened my mouth, however, the good doctor began questioning.  “Any history of colon cancer in your family?” “Yes, both my parents had color cancer. That’s why I came to you for a colonoscopy this summer. It’s in my  paperwork,” I stated for the second time that morning.  She flipped the pages.  “Oh, now I remember you,” she declared.

She continued asking me questions, this time about alcohol and caffeine consumption, again documented in the unread paperwork. I offered up that I ate well, a mostly organic, almost vegetarian diet. “Maybe that’s your problem,” she replied. (Does she subscribe to the hygiene hypothesis, I wondered silently.) Patience, which is not one of my virtues, was running out.

Finally, I interrupted her with my prepared  script, which I had edited and tweaked several times in my mind to be sure to sound respectful.  I ended by stating my surprise that her questionnaire contained no queries about diet.  “Oh, this is a terrible form, she admitted.  We really need to revise it!”

She politely explained my condition as one of “inflammation of unknown origin.” I politely inquired if she was not curious about possible origins. We were both holding our tempers well.  She forthrightly stated that studies were “inconsistent.”  “Could that be because people are all different?” I asked naively.
“Maybe,” she said.  “But drugs are the only way to treat your condition. And I have no problem with your getting some acupuncture and chiropractic too.”  Wow! She just embraced complementary medicine!

“Is it possible that I have an infection?” I asked.  “If you would like me to order some stool studies, I would be happy to do so,” she replied. “But you would not have ordered them if I had not asked?”  “No,” she answered, unfazed.

I have had a number of stool studies, which are notoriously unreliable.  Critters often don’t show up, which does not mean that they are not there.  When I shared my knowledge on this subject, my doctor said, “That’s why I don’t order them!”

I persisted. “How about possible food allergies?”  “Well, I would be happy to refer you to an allergist, if you’d like; I don’t do allergy testing.  (No multi-disciplinary approach that considers the whole person here.)  I used to do elimination diets, but they don’t work, so I don’t recommend them anymore.”  “Don’t  work?” I asked why?  “Because no one can stick with them,” she stated. Determined to win one argument for food, I continued,   “Oh, you mean they might workphysically, but not psychologically?”  “That is correct,” she agreed. One point for me!

“Are you going to examine me,” I asked staring atthe cold, hard, stainless steel table next to me. “Of course,” she declared. I hopped up onto the examining table which could have been in a museum of torture devices, and lay back.  No removal of clothing.  Afterpalpating my abdomen, she declared “All done!” and I sat up.

This seemed to be a good time to escape. I thanked her and headed toward the door.  As I was exiting, she asked me an astonishing question, “Does changing their diet help children with autism?”  “Yes,
I replied, elated that I could share some of my knowledge.  80% show benefit from a gluten- and casein-free diet. Not only do their bowels work better, but often we see positive changes in their language output and relatedness.”  “That’s SO interesting!” was her response.

I ran to the elevator.  Past the tables of Pepto-Bismal-pink raffle items (including an iridescent pink pumpkin!) for breast cancer awareness month. (Excuse me.  Do you know ANYONE who is NOT aware yet?) I couldn’t get out of this hospital, in which I was born more than 65 years ago,
fast enough.

Today’s doctor WAS different. Traditional, yes, but not bad, just uneducated. Thank goodness, she still has an inbox and a smidgen of curiosity. I do not want to be her teacher. I will return to my trusted and
educated team of health care professionals: a chiropractic kinesiologist,acupuncturist, herbalist, and homeopath.  We were making slow, but steady progress toward improving my health. I will continue my regemin of vitamins, minerals, anti-fungals, herbs and remedies, as well as my organic diet, while I work on my patience. This time I will not throw away her prescription.  I will keep it just in case I change my mind, and decide that hair loss and a possible stroke are worth exchanging for some bowel issues. I will then return to her for another round.

Until then, I will continue my stubborn search for the cause of my inflammation and treat it naturally. Tomorrow I will start drinking 32 ounces of apple cider and eating a totally vegan diet for six days in
preparation for a gall bladder and liver cleanse this weekend.  I’m encouraged by what I read about it.  In the meantime, if you EVER hear me consider going to another gastroenterologist, please slap me upside my face!  Thanks.

I’ll keep you posted.

Peanut Allergy Epidemic: What Everyone Needs to Know

October 10, 2011

Last week, I observed a friend frantically chasing her toddler grandson who had slipped out of her grip, run to a buffet table and grabbed a cookie. “Does it have nuts in it?” she yelled in abject fear to no one in particular.

Today, more than 1% of American children, like this little guy, and approximately .5% of adults in the United States are allergic to peanuts. That is an estimated one million kids and three million individuals, who could die by simply breathing the air in a room where someone ate a peanut butter sandwich.

When and how did this epidemic develop, and why is it continuing? Most important, what is its cause, and what can we do to stop it?

The frightening answers to these questions are in The Peanut Allergy Epidemic: What’s causing it and How to Stop it by Heather Fraser, a Canadian mom whose child had an anaphylactic reaction to peanut butter at 13 months of age. I could hardly put it down! You and everyone you know who, especially your pediatrician, should read it.

The “perfect storm” that spawned the peanut allergy epidemic around 1990, (not surprisingly paralleling the autism epidemic) occurs, like autism, in more boys than girls. “Victims” are the same: picky eater kids with lessened ability to detoxify, consuming less nutritious food and receiving an ever-increasing number of vaccinations, growing up in an increasingly toxic environment. My friend, Dr. Ken Bock wrote about them in his book Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders.

Bock knows from his busy practice that many children with autism have severe allergies, including life-threatening reactions to peanuts. Likewise, many children with peanut allergies are diagnosed with autism spectrum disorders, including attention deficits, pervasive developmental disorders, Asperger syndrome and full-blown autism. The commonality, he and others agree: an overburdened immune system. How did that happen? Let’s start by understanding allergy and the ONLY means by which mass allergy has ever been created: by injection.

What is Allergy?
Early twentieth century American researchers, Rachel Carson and Theron Randolph, and a contemporary, MacArthur “genius award” winning biologist, Margie Profet believe that allergy is an evolved, and often risky, protective response: the body’s natural defense against toxins linked to benign substances. An “allergic” reaction occurs when the body is exposed to proteins of unfamiliar foods, triggering immunoglobulin epsilon (IgE) antibodies, the soldiers whose job it to protect the body’s mucous membranes from invaders. When they detect trouble, they deploy a biochemical cascade, characterized by coughing, shortness of breath, itchy skin hives, leaking of blood vessels causing swelling and potential asphyxia, vomiting and diarrhea. Scratching, vomiting, diarrhea and sneezing are a body’s desperate attempts at ejecting a toxin as fast as it can. In severe reactions, blood pressure drops, draining vital organs and causing the heart to stop.

The term “allergy” was coined in 1906, only one hundred years ago, by an Austrian pediatrician, trying to reconcile an unexpected reaction to vaccination in some of his patients. The modern concept of allergy grew out of the occurrence of “serum sickness,” a man-made malady. Keep reading.

The Hypodermic Needle
Documented life-threatening mass allergic reactions were rare prior to the late nineteenth century, and first emerged as an “unintended consequence” of a new invention, precipitated by the unprecedented need for pharmaceuticals near the end of the Civil War: the hypodermic syringe. Louis Pasteur was the first doctor to use a hypodermic needle to inject a vaccine: anthrax for livestock, and later rabies to a boy bitten by a dog. Hypodermic needles were quickly adopted as a hygienic improvement over the messy, often dirty, transdermal lances previously used to puncture or scratch the skin to insert pathogens.

As demand increased, costs became more reasonable, and production soared. Upjohn and Parke-Davis (both now owned by Pfizer) and Eli Lilly (the developer of thimerosal) were born out of demand for hypodermically delivered vaccines. Their 1890’s marketing methods closely resembled today’s, minus television and computers. Sales reps visited physicians’ offices, leaving promotional literature and samples in lively packaging. And, don’t forget the annual medical almanacs! By the turn of the 20th century, vaccine manufacturing was big business.

The Need for Preservatives
With an increased demand for vaccines for dreaded smallpox, tuberculosis, diphtheria and cholera, and the realization that a single vaccination did not confer lifelong immunity, the need arose for vaccines that could travel safely and be administered efficiently. Pus and scabs from sick animals decomposed quickly; sick animals were difficult to transport. The answer: preservatives suspended in an antibacterial carrier gel made of vegetable glycerin that extended shelf life and could be delivered by injection.

Early twentieth century ingredients included mercury-based antifungals and various oils. Exact ingredients were fiercely guarded proprietary formulas, protecting the scientists, their companies and shareholders by law.

Serum Sickness
A common outcome of the first mass preserved, hypodermically delivered injections of sera for scarlet fever, tetanus and diphtheria was a poorly understood and potentially fatal condition. It was first called “serum sickness,” later termed “anaphylaxis” by French Nobel laureate and immunologist Charles Richet – from the Greek ana (against) and phylaxis (protection) – the opposite outcome from what was expected from vaccination. Symptoms included fevers, rashes, diarrhea, decreased blood pressure, lymph node swelling, joint pain, an enlarged spleen, kidney failure, breathing difficulties, and shock, lasting for days, weeks or a lifetime, and, occasionally, proving fatal.

What was causing so many people to get sick instead of stay well? Richet experimented with dogs to find the answer. He injected his subjects with raw meat proteins, and then fed them raw meat. The result was anaphylaxis! Two other researchers did the same, except by injecting egg and milk, showing that without exception, all proteins, toxic or non-toxic outside the body could produce anaphylaxis by injection. Richet discovered that this phenomenon is universal for all animals.

Austrian pediatrician Clemens von Piquet and his Hungarian colleague, Bela Schick, studied serum sickness in thousands of children, noting a paradoxical relationship between the two outcomes of vaccination: attaining immunity and acquiring serum sickness. In both outcomes, an incubation period occurs between the initial inoculation and appearance of symptoms. Subsequent injections (just like secondary exposure to infections) are accompanied by an accelerated and exaggerated response resulting from “a collision of antigen and antibody.” This conjecture was confirmed by the fact that in 90% of von Piquet’s patients, immediate adverse reactions occurred following the “booster” injection 10-30 days after the first.

In 1934, up to 50% of children experienced post-vaccinal serum sickness. Families were forced to weigh their fears of fatal diseases such as smallpox against the risk of being injured or killed by a vaccine, and choose the lesser of two evils. The only difference from today is that few of these dreaded diseases kill many people any longer in developed countries because of antibiotics.

Anaphylaxis
As Richet continued to experiment with cats, rabbits, horses and frogs, he deduced that “digestive juices” were required to break down the protein, and if this did not happen, the body would mount an immune response. Experimental alimentary anaphylaxis is almost impossible to demonstrate in the presence of healthy digestion. The first injection of undigested protein into the blood stream sensitizes and weakens an animal, making it susceptible to a second, smaller dose which then could cause a serious, even fatal reaction in persons with inadequate digestion. Conclusion: healthy digestive juices actively transform potentially toxic proteins, rendering them innocuous, or restated, inadequate digestion is a common sense prerequisite for food allergy.

The “ingestion” theory of anaphylaxis has persisted to explain the vast majority of food reactions. Some of these reactions, however, are not life-threatening, but more subtle and hard to pinpoint, such as migraines, skin conditions, fatigue, anxiety, irritability and behavioral problems. Egg was a case in point; why did a young boy suffer from “egg poisoning” in 1908 when nobody had ever injected egg into him? Hmm…Unfortunately, his doctor did not know that for many years prior, emulsified egg lecithin was used extensively in vaccines, and vaccine manufacturers had introduced fertile hen’s egg as medium for growing viruses. What was the link? The answer came in the 1940’s with the discovery of penicillin.

Penicillin Allergy
When we first examined the peanut allergy epidemic, we recognized the attributes of the perfect storm for the “victims.” With the discovery of penicillin in 1928 by Scottish biologist Alexander Fleming all the pieces of the “perfect storm” for the “weapon of mass destruction were in place: a pathogen suspended in an injected or encapsulated undigested protein from oil.

Both oral and injected forms of penicillin contained a new ingredient, cottonseed oil, a product whose proteins are considered potent allergens. A gelatin capsule sealed the drug, which was not released until it reached the small intestines, bypassing the modifying effects of digestive enzymes. I’m sure by now you can guess what happened!

From the 1930’s through 1950, sensitivity to cottonseed oil grew, as did penicillin allergies. Scientists sought a cheap, plentiful replacement. You guessed right again. After World War II, the all-American peanut replaced cottonseed as the oil of choice in the manufacturing of penicillin and in almost all vaccines! It was plentiful, inexpensive, stable in heat, and during the war, patriotic.

By 1953, Pfizer and others produced six hundred tons of penicillin, laden with peanut oill mixed with beeswax (POB for penicillin in oil beeswax) to coat the penicillin particles in a concoction known as the Romansky formula. As the body metabolized the wax and oil, the drug was released into the system. By the mid 1950’s, an estimated 2.5% of all children had developed an allergy to injected penicillin. Scientists reduced the amount of beeswax and oil in an attempt to reduce and eliminate undesirable reactions, such as fatal anaphylaxis, antibiotic resistance, fungal overgrowth and dysbiosis.

Then came a new formula mixing penicillin with aluminum monostearate (PAM), also suspended in peanut oil. PAM was the delivery of choice from the mid-fifties through the 1980’s. More frequent and more severe allergic reactivity, including anaphylaxis emerged during what was dubbed “the PAM era.” Penicillin had created an unparalleled outbreak of allergies and anaphylaxis.

Peanut Allergy
During the late 1940’s and throughout the fifties, peanut oil in penicillin was not suspect. It was used not only in this wonder drug, but in streptomycin, broad-spectrum antibiotics, injected epinephrine for asthma, in anesthetics and vaccines. Unknown to consumers, peanut oil was a popular ingredient in vitamins, skin cream and even infant formulas!

Prior to 1941, the literature shows no report of peanut allergies in adults or children. A survey of people showed self-reported peanut allergies in .3% of those born 1944-47, .4% of those born 1948-57, and .6% between 1959-67. In 2008, over 1% of people born 1944-67, reported allergies to nuts, including peanuts.

Articles published in the late 1950’s and early 1960’s show a growing awareness of peanut allergy, but the first formal study of peanut allergy in children was not launched until 1973, and then on only 114 kids. Doctors watched the mysterious rise in peanut allergies, but few asked “why?” By the early 1990’s tens of thousands of peanut allergic kindergartners entered school, not only in the U.S., but in Canada, the United Kingdom and in Australia. This allergy accelleration was concurrent with an unprecedented push of political, social, legal and economic reforms to alter and accelerate the vaccination schedule in these countries.

The Vaccine Connection
In 1964, pharmaceutical giant Merck announced a new vaccine ingredient promising to extend immunity: Adjuvant 65-4, containing up to 65% peanut oil as well as aluminum stearate. An adjuvant (from the Latin “adjuvare,” to enhance) is a vaccine additive that stimulates the immune system, upping the body’s production of antibodies to a pathogen. Adjuvants reduce production costs as the vaccine maker needs less of the expensvie antigen; they also increase a vaccine’s efficacy. The can also be dangerous; the more effective a vaccine, the greater the risk of allergies and other adverse effects.

The inventor of Adjuvant 65-4, Maurice Hilleman and his colleagues at Merck knew that allergic sensitization to the peanut oil in the adjuvant was a distinct possibility, but considered toxicity and allergenicity inevitable outcomes of vaccination. It was simply difficult to balance potency and safety.

The public clearly did not know what was being injected into their children, called by immunologist Charles Janeway, “the immunologist’s dirty little secret.” The peanut allergy epidemic in children was precipitated by vaccines. Lawsuits ensued, especially related to the DPT vaccine. By 1985, over 200 lawsuits were pending against four vaccine manufacturers. This litigious environment caused many pharmaceutical companies to abandon the lucrative vaccine market, causing a vaccine shortage. A solution: combination or conjugate vaccines.

Vaccines were combined for convenience. With speed and efficiency the U.S. Pediatric vaccination schedule took off, helped by President Clinton’s Childhood Immunization Initiative in the mid-nineties. By 1998, childhood vaccination rates were at an all time high. So was the incidence of peanut allergy in children. Between 1997 and 2002, the peanut-allergic pediatric population in the U.S. grew by and average of 58,000 children a year, and doubled between 2002 and 2008. By 2008, more than one million children under 18 and another two million adults were allergic to peanuts in the United States alone.

According to Heather Fraser, “vaccination was the elephant in the middle of the room. Researchers glanced at it, knew it was there, but were reluctant to get too close.” The possibility that hundreds of thousands of children have been sensitized to peanuts by ingredients in one or more routine pediatic vaccinations is just too much to conceive. But it is too obvious to deny. The real clue is the sudden rise in peanut allergy following the escalation of the pediatric vaccine schedule.

Cross Reactivity and Vitamin K1
Most peanut-allergic patients have IgE antibodies against other legume proteins, including soybeans and other oil seed proteins, such as castor. At the same time that the vaccination schedules were accelerating in the mid-1980’s, doctors in the U.S. and many Western countries added a prophylactic injection for newborns. The purpose of this shot was to prevent hemorrhagic disease in newborns (HDN) or vitamin K-deficiency bleeding (VKDB). The two available brands contained castor seed oil, as well as aluminum, a well-known IgE stimulating adjuvant, 4% of which remains in the body indefinitely.

These ingredients remain in the body for an extended period of time, and are still being released as a baby receives its first Hib, DpaT, and Hep b shot at one or two months of age. IgE to castor could cross-sensitize a child to peanuts.

Detoxification
Why don’t ALL children react to peanuts? Ken Bock and other doctors treating children with autism spectrum disorders believe allergenicity is inversely related to an individual’s ability to detoxify. Children with peanut and other allergies have compromised immune systems and are poor detoxifiers. Most have gut problems, including fungal and other infections. Most are male.

Prevention and Rationalization
Screening children before each vaccination could help, but is antithetical to the goals of mass vaccination. Obviously, the “one size fits all approach to vaccination is simply not right. We have sizes of shoes, different ages of walking, teeth eruption, speaking and reading. We need to look individually at appropriate vaccine schedules.

But why should the burden be on the consumer and a family’s health-care providers? Clearly, vaccine manufacturers must take some responsibility. Right now they are basically financially exempt from ANY damage. Why? Because vaccines are BIG business tied to the military and school admission.

Furthermore, from an economic standpoint “food allergy” is BIG business. Think of all the enterprising companies producing peanut-, gluten-, casein-, soy-, and egg-free foods. Do we want to put them out of business? Hardly.

The biggest problem though is that it is virtually impossible to prove a causal link between vaccination and a later life-threatening allergy, even though the medical literature demonstrates that the ONLY means by which immediate and mass allergy has ever been created is by injection. Starting with combining the hypodermic needle and vaccines at the end of the 19th century, mass anaphylaxis exploded into the Western world.

We MUST have a formal study of vaccinated vs. unvaccinated populations. For starters, peanut allergy is virtually unknown in Amish communities, which discourage vaccination. Now that parents of children with autism are selecting not to vaccinate subsequent children, perhaps a target group is emerging. The National Vaccine Information Center (NVIC) has promised to pursue this research. Let’s hope it comes soon!

So for today, parents of peanut-allergic children are coping. Some have discovered ways to lessen their kids’ reactivity with energy medicine, acupuncture, NAET, and other alternative medicine techniques. But coping with an outcome that was forced upon them is unfair and insufficient. These parents must combine their forces as has the autism community and say “Enough!” Only then can we stop this runaway train.

Camphill Communities: Special Places for Special People

June 1, 2011

What if there were places for adults with disabilities to live, grow and eat delicious food?  Places where they are treated with respect, participate fully in meaningful work, and live in nurturing and supportive multi-generational family-type atmospheres?  Well there are more than 100 such “life-sharing” communities in over 20 countries in Europe, North America, Africa and India. They are called Camphill Communities.

Last month I attended the Camphill Symposium “Being Human in the Twenty-First Century: Toward New Thinking,” celebrating 50 years of Camphill in North America.  My goal was to explore Camphill communities as alternatives for the multitude of young adults with special needs graduating this year from our high schools, and for others in their twenties and thirties whose parents are aging and who languish at home without a social network or life skills.

The symposium brought together almost 100 folks from a variety of disciplines.  I met social thinkers, environmentalists, scientists and members of a dozen life-sharing communities who spoke passionately about their desires for collaboration and cross polination.

The Camphill community model is based on the teachings of the philosopher Rudolf Steiner (1861-1925).  Steiner’s philosophy melds body, mind and spirit to apply “spiritual science” to all aspects of life. The legacy of this true Renaissance man is an amazing array of accomplishments, including a worldwide network of Waldorf Schools, a farming system now known as Biodynamic agriculture, holistic medicine encompassing a broad range of complementary treatments, as well as art, architecture, and even ethical banking!  His writing, including about 30 books, was so prolific that no one even knows how many lectures he authored, but it is estimated to be well over 6000!  Today, his teachings are known as “Anthroposophy” and practiced around the world.

The Camphill movement was founded in the 1940s by an Austrian pediatrician and follower of Steiner, named Karl Konig.  Anthroposophists believe that every human being possesses a healthy inner personality that is independent of physical, developmental, cognitive or emotional disability.

The symposium took place at Camphill Village Kimberton Hills, PA, near Valley Forge, a vibrant farming and handcrafting community of about 100, including both neurotypical  individuals of all ages and 40 adults with developmental disabilities. At Kimberton Hills, Copake Camphill Village in New York, Heartbeet in Vermont, and Camphill Village Minnesota, as well as in Camphill communities worldwide, villagers live in small homes, learn vocations, eat what they grow, move, paint and live anthroposophy 24/7. Neurotypical adults and their families, including young children, support and care for each other, the land and the environment around them, following organic and biodynamic principles whenever possible.

Each day of the symposium had a theme.  Invited speakers presented to the group as a whole, and then intimate focus groups of mixed ages, abilities and disciplines fleshed out the subjects further. The conversational sessions were enhanced by an artistic activity of our choosing.  Offerings included pastel painting, poetry, clowning, eurhythmy (a form of therapeutic movement) or singing.  We dined together for lunch and supper in the newly renovated café on delicious locally prepared cuisine. I listened to and shared insights with some astounding people during these opportunities.

Shelley Burtt, the Executive Director of the Camphill Foundation, spoke of “robust inclusion.”  She believes that society needs to be more open and expand its thinking about what is “normal.”  This process includes finding a new vocabulary that does not pathologize, but rather is accepting of people with differences in abilities and knowledge.

Judith Snow, who despite being paralyzed from the neck down, concurred with Shelley, urging us to support inclusive, not exclusive communities. Judith, who has a master’s degree, fully participated in all symposium activities in her wheelchair, which she propels by blowing into a tube.  With the help of a personal assistant, she spoke passionately about the assets individuals like herself bring to communities.  As a life-long advocacy for the disabled, she calls herself a “social inventor,” in addition to being a sought after motivational speaker and visual artist.

Coleman Lyles, President of the Camphill Communities of California expertly and equitably facilitated the morning focus group in which I participated.  His lifetime experiences with and love of the Camphill model is palpable.  He understands the history of the movement and its roots, yet has a vision for its future, as well.  The session he monitored on “nature, nurture and technology” was memorable in that he helped the group see how these forces can live compatibly in today’s society.

Eugene Schwartz, a veteran consultant and expert on both Waldorf education and Camphill communities, was a member of my focus group.  He has labored for over 30 years to make Steiner’s work available to the public through his extensive website and teachings.  He believes in the power of Camphill to spin off new communities to meet the needs of today’s populations of adults with special needs.

Tom Stearns, President and founder of High Mowing Organic Seeds in Vermont, turned a seed-collecting hobby into one of the leading organic seed companies in the United States.  Tom agreed with Eugene, and spoke to Steiner’s sense of urgency, which frequently fueled his inspirations into action.  He described the Camphill communities as the seeds for future organic-based farms for the disabled.

Barton Kirk, a fellow Pittsburgher, with whom I traveled to Kimberton Hills, and shared my artistic experience painting with pastels, is an ecological engineer who plants other types of seeds.  His seeds are ideas that germinate into innovative solutions for water and waste problems.  Barton grew up with community supported agriculture (CSA) and interned at Camphill Kimberton Hills. Today he is focusing on interdependence instead of independence in his work.

Hannah Schwartz, (no relation to Eugene), the vibrant co-founder of the newest American Camphill community, Hearbeet, is a true breath of fresh air. She grew up at Kimberton Hills. The late Judith Bluestone, founder  of HANDLE, a sensory-motor program she developed, would be ecstatic to learn that Hannah has introduced the HANDLE method to several Camphill communities.  Accompanying Hannah to the symposium were several of her villagers, including an extremely appealing couple, both with Down syndrome.  Hannah recounted that each had lost over 100 pounds since moving to Heartbeet.  Both participated fully in the symposium, making relevant comments, reading poetry and socializing with others.  Their warmth, ingenuous curiosity and passion brought tears to my eyes. Hannah plans to expand Heartbeet to include young adults with autism in the near future. I hope to visit her this summer in my travels to New England.

Peter Bruckner, my extraordinary pastel instructor, is a multi-faceted artist who heightened my enjoyment of the symposium. While I signed up for “painting,” I did so with fear and trepidation. Peter made it so much fun that I went out and bought some pastels to share my new-found skills with my daughter and grand-daughter. Over Mother’s Day weekend, we spent a full afternoon painting.  In addition to teaching art at Camphill communities, Peter makes one-of-a-kind jewelry, writes poetry, paints, and is the founder of a touring marionette theatre. Peter’s huge heart extended to everyone at the symposium as he sprinkled his talents and humor among us.

Several non-profits are now focusing their attention on developing programs for adults with autism and related disorders.  The Autism Research Institute (ARI) has publishes a bulletin on the subject, and  The Autism Trust from the UK, has launched a United States initiative to establish franchised “Centers for Excellence”  in all 50 states and many other countries, a creating worldwide virtual campus adult community. DDR too is looking at alternatives. I strongly believe that restrictive, non-inclusive communities are counter to what I experienced  at Camphill.  I urge all of those involved in planning for adults to take a look at the Camphill model.  I think that once you see the love, respect and interdependent support in each unique community, you too will choke up with emotion.  For over 50 years Camphill’s success has spoken for itself all over the world. Why reinvent the wheel?

 

A Family’s Quest to Hear and Be Heard

November 30, 2010

 

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“Severe deafness.”  “Profound hearing loss.”  These were the words heard by Jennifer and Bill Rosner within hours of each of their daughters’ births.  Imagine knowing that your children could possibly live in a world without music, voice, laughter and words, when yours was filled with violins, singing, humor and talking?  Unthinkable. 

I learned of this family’s odyssey through an Evite a few months ago:  an electronic invitation to a reading and book signing of If a Tree Falls, hosted by Jennifer’s sister in a Washington, DC suburb.  Since I travel there frequently, she included me in the guest list. Unfortunately, I was not able to attend, but I quickly ordered the book.  The holiday weekend gave me the time to devour it.

As a mental health professional working with parents of children with disabilities for over 40 years, I have listened to and read countless stories. Few have touched me as profoundly as Rosner’s. She takes us on a roller coaster ride into the land of the hard-of-hearing, a fractured battleground where those committed to signing are pitted against those sold on inclusion in the verbal world.

My first thoughts compared the Rosners’ experience to those of parents whose children are diagnosed with autism. Unlike autism, hearing impairment is now routinely diagnosed immediately. Infants are whisked off for hearing tests, and the die is cast.  Confirmation comes two weeks later, with a clearer picture of the seriousness of the problem. With autism, many months of worry, fear, denial and angst usually precede confirmation. Which would you prefer:  knowing immediately that your child faces challenges, or having a year to bond before the diagnosis?   Tough question!

There the contrast ends with a fork in the road.  In autism, those espousing behavioral plans debate those who evangelically preach diet and nutrition. Faced with severe and profound hearing loss, the Rosners immersed themselves into the worlds of signing versus speaking aloud. How to choose?  

After much debate, Jennifer and Bill decided that they were “talkers.” “We were constantly debating, questioning, arguing, doubting, agreeing, wondering aloud. And we were hearers, in the hearing world. A soundless, wordless world was unimaginable.”  They made the difficult decision to bring their daughters into their world.  

Baby Sophia was fitted for hearing aids, and baby Juliet received a cochlear implant on her first birthday.  Then they waited.  Would each girl hear and eventually talk? 

Living this emotional soap opera was insufficient for Rosner. Armed with information from geneticists, family trees, immigration records, and her fertile imagination, she takes the reader back over 150 years to the origin of her children’s deafness.   A chromosomal abnormality, asterisks marking those who could not hear, and a missing name all combined for her to conceive how sisters, brothers and parents were torn apart.  We travel in our minds’ eye to an Eastern European shtetl, where not only being Jewish, but the double whammy of being deaf, isolated ancesters.

All families hide secrets, but this one was in plain view: a mother with hearing aids and a poor ability to listen, was an experience I could identify with only too well. How many readers struggle with the burden of not being heard, and are shushed as I was, because talking about the elephant in the middle of the room was not “nice.”

Thank you Jennifer for opening Pandora’s Box for YOUR girls, and hopefully for others who want to know what was previously “unknown.” Simple, yet profound, this memoir shows how one family answered the question, “After the diagnosis, then what?” I hope that this book will be read widely in the disability community, as it offers hope, love and tenacity when the future looks bleak.

Green and Healthy Schools

November 6, 2010

Do “green” schools positively impact students’ achievement and teacher performance? Common sense says “yes.” Recent studies now pinpoint the factors that make the difference, according to Vivian Loftness, Professor at Carnegie Mellon University School of Architecture.

I learned so much yesterday at the “Green and Healthy Schools Conference,” held at Phipps Conservatory and Botanical Gardens, one of Pittsburgh’s hidden gems, showcased last year by Barack Obama’s G-20. This was my second year attending this amazing conference, co-sponsored by the Green Building Alliance. In case you didn’t know, Pittsburgh is a national leader in “greening” old buildings. That’s one of the reasons I love living here.
What is a “green School” anyway? Many people think it is one that is energy efficient. Well, that is only one of its attributes. Green schools also save water and waste, are toxin-free, and connect interiors with the outdoors.
How do we measure whether greening a school environment is worth it? The following  are considered meaningful outcomes:
• Increases in students’ test scores, as well as teachers’ productivity and retention.
• Decreases in teacher and pupil absenteeism and the number of asthma emergencies
Green Schools are:
Dry and stay dry – Excess moisture, including condensation on machinery, grows mold, which causes sickness. One of the first cases of pervasive developmental disorder (PDD) I ever saw was in a girl attending kindergarten in a moldy church basement.  As soon as she changed schools, she no longer fit that label.  See my article on that subject. Ultra-violet light and sunshine reduce mold growth.
Comfortable temperatures – Doesn’t letting light and sun in create glare and over-heating? “Dress” your school as you would yourself, according to season, suggests Loftness. Shutter and shade them in hot months and filter them in winter. Choosing proper materials for the roof and walls also helps control the thermostat.
Well-ventilated – Which has better quality, indoor air or outdoor air? You may be surprised that “fresh” air from the outdoors wins hands down. Study after study says, “Open the windows!” Naturally ventilated classrooms outperform mechanically ventilated ones because heating and air-conditioning systems are chronically under-maintained. As carbon dioxide levels raise, performance drops.
Quiet – Ambient noise is a problem, especially for our youngest students who are just learning speech and language. Noise from the street (cars, trucks, sirens, trains), air (planes), machinery (heaters, projectors), and adjacent spaces, interferes with learning. One study showed a 21% increase in productivity by decreasing noise.
Clean – Good, “green” cleaning matters. No-touch faucets, doorways and spraying keyboards, desktops, toys and other shared spaces reduces sickness. So do non-toxic products made with vinegar, tea tree oil and baking soda.
Well-maintained – On-going maintenance of the building structure is critical. The poorer the maintenance, the higher the drop-out rate for students and teachers. Obviously, no one at the top cares, why should they!
Surprisingly, lighting is not one of the crucial factors. Why? Because most schools are well-lit, according to Loftness. Performance does change, however, using different types of lights. Robin Mumford’s lamps have been shown to increase reading performance in young children.
What can YOU do to “green” your school and make it healthier for your students?
• Start a “green” committee
• Get students involved by making your school a “living laboratory” with projects such as a “rain garden” built into the curriculum
• Switch to integrated pest management and non-toxic cleaning materials
• Maintain your building with “green” products
• Read Greening Our Built World by Greg Kats
Have fun being “green,” and let me know what you are doing!

Picking Beans at Round Hill Park

September 19, 2010

 

 

I’d passed the sign hundreds of times:  “Round Hill Park.”  Some day I’ll check it out, I’d promised myself.  That day was last Tuesday.  I spent a gorgeous late summer morning and early afternoon picking organic beans.  Thousands of beans.  Fistfuls of beans.  Green, yellow and purple beans. 

Joining me were Bryan Ritti, farmer, and COO of FarmsCorps, Inc., a social enterprise created to support aging farmers, local food banks, and regional agriculture organizations.  This summer he and Chelsea Attwood have co-managed the farm operation at Allegheny County, PA’s Round Hill Park, an oasis south of Pittsburgh, just off of Route 51, near Elizabeth.  Bryan spent two years in a monastery, so the solitary life of a farmer is natural to him.  Like many of today’s new breed of young farmers, he is smart, dedicated and passionate about living  off the grid  and off the land.  For lunch he devoured raw kale on homemade almond bread and chased it with a just-off-the-vine super ripe tomato. 

Also picking was Lauren, an educator from the Outdoor Classroom. She is also a gleaner for the Greater Pittsburgh Community Food Bank, one of the lucky recipients of the bounty produced at Round Hill’s cultivated acre of fruits and vegetables. Organic kale, okra and string beans are a far cry from the rotten apples I saw the last time I volunteered at a local soup kitchen.  Thanks go to the Pennsylvania Association for Sustainable Agriculture (PASA) for this outcome.  PASA, one of the largest state organizations supporting farmers and a sustainable  lifestyle is remarkable also.  They provide mentors for young farmers like Bryan who have chosen farming as a vocation.

So why am I  spending a day picking beans?  First, it is a delightful way to soak up, instead of supplement, my deficient Vitamin D. Second,  Bryan and his contemporaries interest me because, I believe they hold the health of the next generation in their hands. 

Today’s new farmers live and breathe the mantra of “Eat fresh and local.”  My car sports a bumper sticker with that message.  In season food that has traveled only a short distance tastes better.  Food that comes from your neighbors supports your local economy.

Bryan and other twenty- and thirty-somethings are the parents of the next generation .  It is THEIR health that will determine the health of their children.  If they are toxic from pesticides, PCBs, phthalates, mercury, lead and aluminum, they will dump their personal toxic loads into their unborn children.  If they are health conscious, eating organic vegetables, using natural personal care products and cleaners, avoiding fish and other products with heavy metals and watching their electro-magnetic fields, their offspring will be healthy.  It’s that simple!

Bryan and his buddies have big plans. FarmCorps, a not-for-profit modeled on the Peace Corps and Americorps.  It collaboratively provides the critical labor needed for farmers to increase scale and diversity of production.  As a social enterprise project of New Sun Rising, FarmCorps serves local farmers while providing experiential learning and training opportunities in sustainable agriculture – from agri-tourism like the exhibit at Round Hill Park to farm succession. Crops produced in specialized FarmCorps programs are donated for public benefit as a part of FarmCorps’ aim to serve southwestern Pennsylvania through strengthening the local food system.

Inherent in FarmCorps’ mission is providing training and vounteer people power for the aging farmer families. Hopefully fewer will not have to yield to pressure of real estate developers to sell their family farms and succomb to suburban sprawl. With the lofty goal of providing services in all 50 states, FarmCorps is just getting organized.  When I suggested to Bryan that his farms would be viable potential homes for workers with autism, he lit up like a Christmas tree.  “Putting marginalized populations to work is one of our goals,” he said. 

In the next year, DDR is going to be exploring connecting with organizations  like FarmCorps to delve into opportunities for inclusion of adults with disabilities.  In addition, we will be meeting with trend analysts to determine how to connect with tomorrow’s parents to investigate avenues for educating them about having healthy babies. 

In the meantime, shop locally, eat seasonally, and enjoy the gorgeous fall weather.

Treat the Child Not the Diagnosis

August 16, 2010

 

The first photos arrived. The baby didn’t look “quite right.”  But all newborns are “funny-looking,” I told myself.  Don’t be an alarmist.  Keep your mouth shut, Patty!

A long career diagnosing kids’ issues; this one was really hard.  I have known the parents and grandparents of this infant for many years.  Nope, just be quiet.

He’s now three months old; the family is coming for a visit.  Wow, I’ll have an opportunity to get a closer look. I take a deep breath and enter the house. He’s very cute in an unusual way.  A little agitated; maybe he just woke up.  His parents try to calm him; not an easy job.  Bouncing seems to help.  

Can I hold him?  Sure.  I look into his pale blue eyes.  They appear to be wiggling back and forth.  A nystagmus?  Maybe.  Not a good sign.  I try hard to get eye contact. I make goofy faces, crazy sounds, dangle my keys in front of his face.  No response.  I hand him back to his daddy. 

Back home, I wonder, “What’s going on here?”  Vision is something I know more than a little bit about.  Why are his eyes wiggling?  I should be able to engage a three-month- old easily.

Maybe Goggle can help.  I type in a few key words.  There it is, in a nano-second: a diagnosis of a rare congenital anomaly.  All the symptoms are present.

Do they know?  The father and both paternal grandparents are physicians.  Of course they must know suspect something.  Or do they?

Now I have an ethical dilemma. I recognize the need to move quickly, know the importance of early intervention. If therapies start NOW, this little guy has a chance to maximize his vision and other abilities. 

With whom do I share my concerns? Maybe a loving great aunt, who supports my work. Perfect! She relates my perhaps premature diagnosis to her brother, the other grandfather   Now the dilemma is his.  He calls the doctor grandfather. No, he has not heard of this particular pathology, but he will ask his friend the ophthalmologist.  

A call back.  No, the diagnosis is faulty, because the baby has no nystagmus. What was it I saw, then?  Maybe it was intermittent, occurring only when he was tired.

Sit tight.  Baby boy goes for his four-month check-up.  The pediatrician has some serious concerns. He sees a nystagmus, makes grave conjectures about its source: a brain tumor?

Off to a pediatric ophthalmologist.  In another nano-second, my Google diagnosis is confirmed.  Prognosis unknown.  What to do now?  Wait and see!  Return in three to six months.  WHAT?  Waste valuable time.  Not acceptable!

The calls and emails begin.  First the grandfathers. How many cases of this rare condition have I seen?  NONE!  How did I diagnose it then? 

Google!  Then the grandmothers.  How did I know? I saw a baby with symptoms that I didn’t like. Are there any experts nearby who can help? Yes, I know two special people in the same town where they live!

Treat the child, not the diagnosis!  For over 40 years, that has been my mantra.

First stop, a developmental optometrist. Both eyesight and vision can be elicited with lights and other novel instruments.  Visual stimulation jump-starts some movements. She offers a positive prognosis, and a home program of visual, motor, and other sensory stimulation. Within a short time, he is responding with laughter and relatedness.  Great signs!

Next stop, a reflex expert.  Another home program. Keep stimulating his reflexes passively. Give him lots of “tummy time.” Within  a few days he can almost turn over. 

More calls.  The parents relate their gratitude and grief.  Instead of “wait and see” they now have hope and an action plan. They’re “on the case.” Not the scenario they planned, but one they can handle. In addition to the private experts, they have connected with a multi-disciplinary early intervention center and their local school system.  Perfect!  I encourage lots of “tummy time” and movement.

Still many questions. How well does he see?  Would some lenses, prisms or highly controversial surgery help him? What about further testing? A genetic work-up? Nutrition?  He is still on only breast milk. Should it be supplemented?  Will he be okay cognitively?  These are all unknowns for now.    

Bottom line. The baby’s diagnosis is just a label. No matter what the name for his condition, I would have sent this young couple to the same two experts. No matter where they lived, I could refer them to top professionals.  All of us have the same goal:  treat possible causes, not symptoms.  Use a developmental, not pathological approach. Stay positive. Work with strengths to enhance weak areas. 

As they recover from the initial shock, they will most likely need some psychological support. They have a child with a diagnosis, a possibly devastating reality for high achievers. They don’t know as I do that this outcome is an opportunity for them and their family to learn and grow.  They are unaware of the miracles that can occur. I am grateful that they have the love, time, money and other resources to do everything possible. And to start at only four months.  What a luxury!

Saying “Good-bye” to My Mother

June 1, 2010

 

When my mother died on May 12th,  DDR lost one of its strongest supporters.  Martha S. Heyman was a social worker at heart. She majored in sociology at Wellesley College, because she loved learning about people and hearing their stories. That is a trait I inherited from her. 

While she never received a social work degree, she spent a lifetime volunteering for and donating to social service organizations, helping those less fortunate than herself.  Whether it was counseling young mothers on how to dress for a job interview, improving the skills of disadvantaged minorities, or running a consumer hot-line for those encountering impediments to fixing leaky roofs or mechanically deficient cars, she was the ultimate advocate and philanthropist.  What a role model I had for starting DDR!

The most life-changing event for me in growing up with this “do-good” mother, was the day she came home with some completed vocational interest inventories.  At the adult day care center where she assisted, she was disturbed at the lack of activities available to the residents.  She had decided to poll them and brought the tests home for me to help her tabulate.  Her goal was to initiate some activities based on the interests of those attending the center. 

What fun I had helping her score and tally the results! At age 12, I was very impressionable. This, I decided was what I wanted to do for my life’s work!  Later, as a junior in high school, I plowed though college catalogs for hours (no Google then!) searching for a place to train.  Simmons College in Boston offered a double major in psychology and mathematics, preparing its graduates for careers as psychometrists.  Perfect!  Much to my mother’s dismay, I rejected her alma mater in favor of a non-liberal arts education.

After 30 years of diagnostic testing, founding DDR was a natural. While somewhat skeptical that I could run a non-profit, my mother was supportive financially and personally.  Every year for the past 15, she gave a significant donation, which allowed me to carry on the social service work that she so dearly loved.  Furthermore, because I needed additional education to run an organization, she encouraged and underwrote my masters in business.  She was so proud to attend graduation ceremonies when I received my degree at age 50.

My mother was continuously distraught that neither my brother nor I had a “real” job. For her that meant getting paid a “real” salary, and getting “real” benefits, such as health insurance. At the same time she clipped job announcements from the classified, and networked us with potential employers, she also bragged that although neither of her children was gainfully employed, that we both were making the world a better place. 

While my brother and I caused her a great deal of worry, my granddaughter Penelope brought her nothing but pleasure and pride.  I wish she could have seen this amazing three-year-old march up to her casket, describe a painting she made for her GG (for great grandmother), and then sing “Row, Row, Row Your Boat!”  The painting depicting the two of them (with hearts “because I loved her”), flowers and a butterfly is at the top of this blog.

Life was a painful place for Martha Heyman.  She felt others’ pain profoundly, and somaticized it as her own.  Hopefully, she is now in a better place, free of pain.  Today, I am eternally grateful to her for all the legacies she left, including DDR.  Without her generosity, this organization simply could not have existed. 

Rest in peace, mom.