Strabismus: Implications for Development

I received a beautiful holiday card from a lovely couple showing several pictures of their two young children. The three-year-old boy is playing ball and laughing. The year-old-girl is wearing glasses and staring into space unfocused with her mouth open. I last saw these children about a year ago, when the girl was just an infant; I had not spoken with her parents since.

It appears to me that this little lady has crossed eyes, also known as strabismus. Her development concerns me greatly.  Unknown to me is what treatment she is receiving. I know from experience that strabismus is a serious visual condition that affects the ability of the eyes and the brain to communicate. A strabismus rarely goes away untreated; children generally do NOT outgrow it.

No one knows this better than neuroscientist, Sue Barry, the author of Fixing My Gaze. I just finished reading her remarkable book, and recommend it highly.  You don’t have to be a scientist to understand the impact of going through life with misaligned eyes. 

What happens normally? As we scan our environment, not only must our two eyes simultaneously aim at the same object, but our brains must integrate a message from each eye into a single image. The process of fusion (combining the pictures from each eye into a single picture) enables us to perceive three-dimensional depth and helps us to determine our relationships to objects in our environment. Vision emerges as the primary sense when a typical child integrates it with touch, movement and the other senses.

What goes wrong?  In children with developmental delays, signs of incomplete or inefficient eye teaming (binocularity) usually appear around eighteen months, just when expressive language is emerging. However, later onset is not uncommon. Poor eye teaming can be associated with neurological disturbances related to heavy metal toxicity, high fevers and childhood illnesses such as strep or pneumonia. Dr. Melvin Kaplan found that about half of the children with autism that he examines have an undiagnosed strabismus.

Initially, the inability to efficiently and effectively team the eyes may appear only at times of illness, fatigue or intense concentration. However, frequently, the vulnerable binocularity can worsen; strabismus and amblyopia or a “lazy eye” can result. 

First, Strabismus… In strabismus, one eye accurately aims at the object of regard, while the other eye misses it by aiming above, below or to the left or right of it. Double vision (diplopia) then results. The misalignment may be constant or intermittent, and thus not always noticeable.  Disorganization and confusion follow as the brain struggles to integrate competing messages.

Next, Amblyopia…. In order to minimize the disorganization and confusion, sometimes the unconscious mind adapts to strabismus by suppressing signals from the faulty aiming eye.  Eventually, visual suppression leads to amblyopia or “lazy eye,” in which the nerves that transport and interpret visual information lose some of their ability. The result is poor vision in one eye, due to an interference in the neurological interpretive mechanism. 

In many instances the reduced vision cannot be corrected with glasses or surgery.  With the eyes functioning at less than 100% efficiency, any sustained visual activity such as reading may require extra effort and strain. As in strabismus, the only obvious sign of amblyopia may be an eye turn. However, some people with amblyopia may turn or tilt their heads to see certain things or close one eye when reading.  I diagnosed a possible strabismus in a child after looking at photos in which his head was tilted to the left in each and every one. 

Proper early developmental vision examinations by an optometrist trained to look at the whole child are essential. Eye turns cannot always be observed and require special testing. Untreated binocular vision problems can pose obstacles to development in many areas.

Strabismus & Amblyopia Affect Spatial Relations and Balance Usually, such as in the holiday photo, cosmetic aspect of misalignment is obvious. Even more important are the effects on function and vision, because strabismus disrupts the ability to orient oneself in space.  A good number of the eye’s neural fibers bring information to the body’s balance system. If they deliver inaccurate information, the person’s sense of where he is in space can be compromised.  

The Psychological Effects of Strabismus -  Strabismus and double vision can adversely affect social-emotional development.  A child who is disoriented in space experiences himself and his environment as unstable and unpredictable. He may grow increasingly inward, become belligerent or demonstrate sensory defensiveness, all characteristics of “autism”

Treatment and Referral – Strabismus and amblyopia always require attention. Surgery, even when done when a child is young, may cosmetically straighten the eyes but usually does not improve visual function, especially without pre- and post-surgical vision therapy. Clinical studies indicate that fewer than 20% of patients who undergo strabismic surgery acquire depth perception.  Patching the “strong” eye to force the “lazy” eye to see is also of limited value.  Barry is one of surgery’s failures.

Effective treatment programs using vision therapy combine involve lenses, prisms and motor activity designed to teach the eyes, body and brain to work together.  Research shows that vision therapy can be effective at any age, but more treatment is needed the longer the condition has existed. Barry is one of vision therapy’s most prominent successes. 

At 50 years of age, she danced among falling snowflakes, experienced skyscrapers looming toward her, and tree branches projecting upward and outward, “enclosing and commanding palpable volumes of space” for the first time in her life. 

If you suspect that a child’s eyes don¹t work together, as I do with my friends’ child, go to the vision section in the Practitioner Directory at http://www.devdelay.org/ to find a qualified eye care practitioner in your area. This section lists organizations that train and certify optometrists to work with children and adults with a variety of vision issues. Go either to www.covd.org or www.oepf.com For a  complete explanation of this common problem, go also to http://www.strabismus.org/ .

Vaccine Politics

 

Wow!  What a year it has been for news about vaccines.  Just when you thought it couldn’t get any crazier, it has!  The biggest, best, most informative conference ever!  A governor elected on a vaccine-choice platform!  And pediatricians petitioning against vaccine choice in Jewish schools!

 The Fourth International Public Conference on Vaccination: We Came Together, We Made History!  A huge congratulations to Barbara Loe Fisher and her husband, Paul Arthur for a most remarkable conference at the beginning of October. What a success!  Over 700 attendees from 44 states and 11 nations were riveted by over 40 speakers from dawn to late evening for four consecutive days. Their subjects included vaccine risks, global vaccination issues such as contamination, injury and safety, pregnancy, swine flu, Gardasil vaccines, and military families. We heard from investigative reporters, scientists, physicians, nurses, parents, homeopaths and others.  Sometimes speakers had to agree to disagree. 

I was honored to assist with book sales, registration and general organization. What a pleasure to work with such dedicated people with amazing energy and passion. I have worked closely with Barbara and her co-founder, Kathi Williams for many years, and attended the three previous conferences.  This one was THE BEST! 

The National Vaccine Information Center (NVIC)  raised over $100,000 in 24 hours to fund a study of the health of vaccinated vs. unvaccinated children. Go to  to view Barbara’s five-minute YouTube video describing it.  Watch the NVIC website to order CDs of the talks and downloads of the Powerpoint presentations. 

Governor Christie Elected in New Jersey!  Congratulations to Louise Habakus, Founder of Life Health Choices, in leading vaccine choice advocates who showed up in record numbers in to cast their votes and elect Chris Christie as New Jersey’s next governor. Christie made an official campaign promise to citizens of New Jersey in support of vaccination choice. He further cemented his position by becoming the first gubernatorial candidate to utter the words vaccines, autism and parental choice in the same sentence on Don Imus’ live radio show.  Habakus is now asking NJ residents to thank Christie for his promise.  Hopefully he will act in accordance with it!

Policy Recommendations to Pittsburgh Jewish School Administrators!  A group of 28 pediatricians in the Pittsburgh area, a majority of whom are Jewish, distributed a paper with the above title stating the following:

“We, the pediatric healthcare providers for the majority of the Pittsburgh Jewish community, ask the day schools, preschools and religious schools in the community to unite in stating the following policies regarding immunizations:

1.  All students will be required to provide proof of current, age-appropriate immunizations according to current Allegheny County immunization requirements, prior to the beginning of each school year.

2.  Any student not meeting these requirements must provide written, signed documentation, with state medical license number, from his or her licensed PRIMARY healthcare provider explaining the MEDICAL rationale for not immunizing the child in accordance with the American Academy of Pediatrics.

3.  While Pennsylvania law and Allegheny County code recognizes the right to “religious or philosophical objection to immunization,” our school does NOT accept such exemptions!  We consider vaccination to be a part of a person’s Jewish obligation to protect their own life and health and that of others; just as we expect that students and families choosing our school will accept that we provide explicit instruction in a variety of religious beliefs and practices, and expect our students to conform to school policies on dress, food, prayer, and ethical behavior, we consider this issue to be of equal, if not greater importance, and therefore expect the same level of respect and adherence. 

4.  Students not meeting the requirements outlined above will be excluded from school until they can comply with the requirements.

Exception:  We recognize that a student who is delayed in receiving immunizations often cannot receive them all at once.  Therefore, once a student can provide proof of having received the first doses in a “catch-up” schedule, along with a dated schedule from the physician indicating when the next doses are due, that student can be allowed to return to school.  The school reserves the right to exclude the student at a later date if the family does not follow through with completing the “catch-up” schedule in a reasonable time frame.  It is reasonable to expect that nearly all new students with immunization delay should be able to complete any standard “catch-up” schedule by the conclusion of their first academic year in the school.”

 Attached to this white paper are three pages of “Medical Evidence Supporting Immunization Requirements.”   No studies, no research. Just unsupported opinions on why “vaccination against infectious diseases is one of the most successful innovations of modern medicine ” Another statement:  ” Vaccination is perhaps the most rigorously tested, safest interventions practiced by modern medicine!”  WHERE ARE THE STUDIES?

A reporter for the Jewish Chronicle, a Pittsburgh Jewish weekly picked up this story.  The comments from Peter H. Meyers, Professor of Clinical Law at the George Washington University Law School and Barbara Loe Fisher of NVIC are worth reading.   Meyers, who is Jewish, directs the vaccine injury clinic at GWU Law School, and teaches courses on vaccination law.

To me this looks like an ACLU case waiting to happen!   I heard that one of the Yeshiva Schools had already sought legal counsel.  I just cannot believe that these doctors think they are above the law!  How can they dismiss the law of the state and people’s individual rights? 

Vaccinations and politics will no doubt continue to butt heads in 2010 for sure.  Wishing you and your family a healthy, happy New Year free of vaccines and politics!

 

 

The Medicated Child

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

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

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

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

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

• Warning signs – Early risk factors for behavioral and learning issues include:
  • Missed developmental steps, such as no crawling  
  • Repeated infections, such as strep, ear infections
  • Skin problems, such as eczema and serious diaper rash
  • Chronic diigestive problems, such as reflux, diarrhea or constipation
  • An eye turn, called a strabismus
  • Hyper- or hypo-reactivity to sensory stimulation such as lights, sounds and touch

• Triggers – All behaviors are reactions to something in the environment. Common triggers are:
  • Foods. Some kids’ digestive systems react to popular foods, such as dairy products, gluten (the protein in wheat and other grains), eggs, chocolate and soy.  In babies who have any of the above digestive warning signs, food is suspect.  The reaction may not be immediate.  I watched one child gradually dissolve an hour after a lunch of pizza and milk. 
  • Food additives. Artificial colors, flavors and preservatives, such as BHT cause behavioral issues in susceptible kids.  The Feingold Association has known this for years and is available to help.  Excitotoxins, such as fluoride, MSG and aspartame can all cause behavioral and psychiatric problems.
  • Pesticides and cleaners.  Many kids react to products used to exterminate bugs and eliminate bacteria.  Behavioral issues are more common on Mondays than any other day, due to schools being cleaned on Friday and closed up all weekend.
  • Chemicals from carpets, paints and other building materials.  Any building with new construction or renovation is suspect.  Formaldehyde from new cabinetry, fabrics and carpets can set off many kids.  The fumes from new paint are also toxic. 
  • Perfumes and air fresheners.  Some people become literally psychotic from breathing the artificial smells from these products. 
  • Contexts, settings – The cafeteria and playground are common “meltdown” arenas.  Why?  Because of the noise levels, bright lights in the former and possible mold, sprays and pollen in the latter.  I know one boy who acted out every time he went to the “reading room” where the teacher had placed a lovely, toxic, area rug.  Everyone thought he hated reading.  What he hated was the rug, and when it was removed, he was fine!

• Symptoms – Symptoms are very individual and sometimes subtle. Doris Rapp, MD has been an expert on this for many years.  Some kids go into meltdowns.  Others may get spacey, talk too loudly, put their hands over their ears, stomp their feet, run in circles, scream, cry, kick, self-stimulate, throw things.  Some may be seeing double, become unfocused, stare out the window, look “depressed,” get sleepy, blink, look out of the corner of their eyes, fiddle with their clothes, masturbate, mouth objects. Any and all of these symptoms must be looked at diagnostically, rather than as behaviors to extinguish. 

• Aftermath – Timing, frequency and recovery periods are crucial to evaluate. Keeping good records will help in the Sherlock Holmes process of pinpointing and eliminating triggers. 

• Effect on overall functioning – Environmental reactions can interfere with a child’s learning, social relationships, sports performance and consume a family’s emotional and financial resources. Make changes for all family members and the whole class rather than just for the behaviorally reactive child.   

Consider non-pharmaceutical alternatives

If only FRONTLINE had included these interventions:

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

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

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

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

 

 

 

 

 

 

What Does "Keeping Kids Healthy" REALLY mean?

 

The TV bombards us with ads promising that vaccines and pharmaceutical products will “keep you and your family” healthy during the flu season.  Are there alternatives?

I just gave a talk at a local school on “staying healthy.”  Parents came armed with notepads, ready to hear my favorite natural solutions to sniffles and coughs. They went home with those.  However, I started with a question:  Does “healthy” necessarily mean, “not sick?”

Philip Incao, MD, a physician in Colorado, describes health as “a beautiful sunny day with a brilliant blue sky and no clouds in sight.  At any time, if our Spirit is strong, then, like the sun we can dissolve the clouds that come our way. Sometimes too many clouds form at the same time, or a cloud becomes too large and obscures the sun’s light. If we don’t pay attention to these messages, the clouds can grow and merge into a huge thunderstorm. After the rain, the sky becomes clear again.”

I really love this description.  I can visualize my spirit making those clouds go away. I am also well aware of times when I have not paid attention to the messages and I have endured some thunderstorms!

Here are some of the points from my talk. 

Main ingredients for a strong immune system:

• Nutritious, unprocessed, organic food in season,
• Clean, filtered air and water
• Daily and ample sleep/ exercise/ sun / nature

Impediments to staying healthy:

• Toxins from foods, environment
• Lifestyle stressors in job, family, friends
• Issues of inconvenience and changing long standing habits

Here is a list of specific foods and supplements that boost the immune system. Thank you to Lisa Rudley for helping to compile it.

Foods  “Warming” foods. Less raw; more well-cooked for winter.  Soups and stews. Seasonal fruits – apples, pears, persimmons, vegetables – root veggies- onions, turnips, squash, parsnips, beets, radishes, greens, kale, collards, cilantro, parsley. Limit sugar!  Read Animal Vegetable Miracle by Barbara Kingsolver.   

Supplements

Vitamin A – Important for vision and mucous membrane integrity.   RDA 1,000-2,000 IU for children,

Vitamin C – 2-4 grams per day or to “bowel tolerance.”  

Vitamin D3 – Adults need 5,000 IU when midday sun exposure is not possible. Infants need 1,000 IU, and older children need 2,000 IU. – Need good oils for absorption.

Vitamin E -  Anti-inflammatory effects and increases resistance to infection. Use only natural vitamin E (d-alpha-tocopherol), not the synthetic form (dl-alpha-tocopherol). A mixed tocopherol form of vitamin E is best because children need the gamma as well as the alpha forms. 100 mg for children under two and 200 mg for children aged 2-12.

Omega-3 fatty acids – As fresh, wild, cold-water small fish or their oils in capsules or liquid form.   Salmon, cod, mackerel, sardines. Flax & Hemp seeds for vegans.

Zinc – 25 mg zinc per day, but if you continue zinc for an extended period of time also take copper to prevent a deficiency (10:1 ratio of copper to zinc).

Colostrum – Immunoglobulin IgA coats the intestinal lining preventing attack by pathogens. Lactoferrin locks onto iron releasing it to red blood cells and depriving bacteria of the iron they need for reproduction. Lysozyme destroys microorganisms on contact. Cytokines boost T-cell activity and stimulate production of a baby’s own protective immunoglobulins. Polysaccharides bind to bacteria and block their attachment to mucus membranes. Take two capsules twice a day through the winter months.

Mushrooms: Activate white blood cells and stimulate antibodies. Reishi (ganoderma), maitake (grifola), shiitake (lentinus), polyporus, and tremella.  Use dried or in tablet, powder, or liquid extract form.

Homeopathics:

Influenzinum – One dose each week for 4 weeks (9C, 12C, or 30C) if you are exposed to the flu.   

Osccillococcinum – 3 X a day for 2-3 days

In today’s fast-paced world we “need” our kids to be “not sick.”  If they have to miss school, one of us has to miss work, or grandma, a friend, or other relative has to fill in.  It’s inconvenient, and in using a pathology model, means that something has gone amiss. 

If we trust our bodies, though, “sick” actually means our immune system is working well.  By coughing we bring up mucous; fevers help clear out toxins; rashes mean detoxification. In fact, in the “olden days” getting sick was a bi-annual house-cleaning ritual! 

Dr. Alan Scherr of the Northport Wellness Center on Long Island suggests that we give kids “well days” instead of “sick days!”  I like the idea of putting health into the positive.  Staying home is respectful of your body’s working to stay well. 

Nature is the greatest healer. Take a walk through the leaves. Hike, sit under a tree by a stream. One of the greatest gifts we can give ourselves and our children is to “SLOW DOWN,” says Susan Johnson, MD, a California pediatrician. Remember, doing “nothing” is often the best!

 

 

 

Temple Grandin: A Real Inspiration for People with Autism

 

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

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

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

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

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

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

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

 

Day Lily buds and Zucchini Blossoms: Eating for Free

In the 1970’s with Euell Gibbons’ best seller Stalking the Wild Asparagus as my guide, I used to forage for free food moving from scapes (wild garlic) in the early spring to blueberries in late summer.  Two of my favorites, day lilies and zucchini blossoms arrive together in June, and I cooked them this weekend for friends.

Zucchini plants are prolific, and a single one can provide more than enough of the vegetable to satisfy most families’ needs.  When you consider the blossoms as part of the harvest, you get double the gourmet experience. 

Stuff each blossom with a little bit of goat cheese seasoned with some chopped basil, dip into flour and egg, and fry quickly in hot olive oil until golden.  The blossoms puff up, the cheese melts and they make a wonderful finger-licking appetizer for the eating al fresco. 

With day lilies you have a choice.  You can add yesterday’s wilted flowers to soup or steam today’s largest buds waiting to be tomorrow’s flowers.  I prefer the latter.  Steam about a minute, top with butter and chopped parsley, pop in your mouth, just like asparagus, and just as good! Don’t eat too many, though, because they can act as a natural laxative.  

Thank you Euell Gibbons for teaching me about free foods.  Thirty years later, I am still enjoying foraging.  Hope you are too!

Blog Entry dated 5/27/2009 11:39 PM

Summer Options: ESY? Camp? Intensive Therapy? or Just Hanging Out?

Parents frequently ask me to make recommendations about summer programming for their children with special needs. They are torn between using the season for intensifying therapy programs or giving the child a break from routine.

Any child who has an Individualized Education Plan (IEP) is eligible for an Extended School Year (ESY) program. First, "critical life skills" are identified in the IEP. Next, a committee determines that, without ESY services, critical life skills: 1) will regress and not be recovered in a reasonable amount of time; 2) are emerging and at a breakthrough point; or 3) are impeded by stereotypic, ritualistic or self-injurious behaviors.

If an interruption in programming is likely to prevent a student from receiving some benefit from the educational program during the regular school year, the school system must provide ESY services. IEP goals for ESY are carried over from annual goals; no new goals are added.

My experience is that ESY services sound better than they are. The services tend not to be intensive or remedial, but to fulfill an obligation. Often we can find better ways for children with developmental delays to pass the summer months.

For the child in a self-contained class, summer can be an opportunity to try some inclusion with typical peers. Integrating children with special needs with non-handicapped peers has been proven to be beneficial for both groups. Sometimes a "shadow" from a local graduate school in education, psychology or occupational therapy is necessary for success. Typical children learn about autism, attention deficits and cognitive differences, while those with delays have a chance to practice social interactions, language and physical skills.

Many "special" camps are now available, both as day camps and for a week or two overnight. In the Washington, DC area the GMS Institute has camps that focus on children with sensory integration (SI) dysfunction. One includes typical siblings of children with autism, attention deficits and emotional problems. Both are staffed by occupational therapists and OT undergraduates. Each day, children are involved in activities that stimulate and normalize touch, movement, listening and visual skills. Swimming lessons help children gain confidence and provide the opportunity for movement without the demands of resisting gravity. Some have friends for the first time and are deliriously happy with the nutritious sensory diet they get heavy work, finger painting and the martial arts.

If a child meets ESY criteria, it is remotely possible that a school system will fund a private camp in the same way that it funds private school. Getting this service could require going to due process, however.

Summer can be a great time to intensify or schedule therapy that is hard to fit in during the school year. I would recommend this for older children, especially. If you need to travel to a practitioner in a distant city, combine the trip with a visit to a theme park or camping out. Increase vision or reflex integration therapy to several times a week. Do home therapy exercises in the fresh air. Enroll a child in FastForWord, Earobics or a Lindamood-Bell program. Find a tutor who understands sensory processing and incorporates movement into her sessions.

Vacations with children with special needs can be trying. One family I know was investigated for child abuse at a hotel in Disneyworld because their child with autism screamed all night. Don’t expect your child to hop on a roller coaster and love it. But the unpredictable does happen. With a great deal of vestibular stimulation from ride after ride, one child I know of spoke his first words.

Trips to theme and national parks are opportunities for families to be together, bond and enjoy nature. Fortunately, many parks have tried to make it easier by issuing special passes to avoid long lines and other perks. Use the park’s web site or call before you go.

Remember to keep up the routines as well as proven sensory and nutritional diets that you know your child thrives on. Just "hanging out" can be hard on everyone. Help relatives understand the importance of being flexible within set limits. Those not familiar with your child may think of behaviors as "bad," when they truly are not. Give them books that you have found helpful.

Most importantly – HAVE FUN!

 

Judith Bluestone HANDLE

Owner wrote:

HANDLE Founder Judith Bluestone Passes Away

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

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

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

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

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

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

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

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

 

 

 

 

 

 

A Winter GF-CF lunch

Owner wrote:

A Winter GF/CF Lunch     

 Yesterday, I took lunch to the home of a friend.  A childhood buddy of hers is visiting Pittsburgh from Phoenix (during the most frigid week in a decade) to help her clear clutter and ready her house to go on the market in the spring.  I offered to take the two of them to a restaurant, and she declined, saying they did not want to take the time away from their clutter clearing.  I said I would cater the event.

A little background first.  My friend and her visitor are both breast cancer survivors, she also has fibromyalgia, and her husband has Parkinson’s.  She has been more open to my “goofy” suggestions about eating organic, wheat- and dairy-free than any of my other Pittsburgh friends and family.  We cook and dine together about once a week, sharing ideas and laughs.  She is the caregiver for not only her husband, who has been sick for over 20 years, but also for her almost two-year-old grandson who comes to her house for childcare about twice a week.  He and his newly pregnant mother were also coming to lunch.

My first thought was to make it simple:  go to a local deli and buy prepared quiches and accompany them with a mixed green salad. No, no no!  I had time to prepare something healthier and more delicious.  Why not practice what I preach, and let Whole Foods and Trader Joe’s help me out?  I had just bought vacuum packed cooked French lentils from Trader Joe’s.  I could make lentil burgers! Yes, yes, yes! 

I recalled receiving a recipe for lentil-almond burgers from Care2 Healthy and Green, an online daily newsletter full of great ideas. Could I find it? Adapting it by mashing my already cooked lentils with almond meal, which was in my freezer, cut prep time, allowing the burgers to be ready in a flash.  What about the relish?  Again, a little help.  Whole Foods had a variety of organic pepper and fruit relish options.  I chose Peach-Mango. 

To accompany my burgers, I chose gluten-free cornbread and organic greens.  Into the greens I piled Trader Joe’s cooked beets, a ripe avocado, and topped it with my favorite salad dressing, Annie’s Shiitake and Sesame Vinaigrette.  Yum!

Why not guild the lily?  In my pantry I found a box of Gluten-Free Pantry’s award-winning Chocolate Truffle Brownie Mix, which I mixed up with organic walnuts and an Omega-enriched egg.  Even the burned edges were great!

By noon I was at my friend’s home.  We sat down to a healthy, delicious, mostly organic, gluten- and dairy-free lunch.  While my friend’s visitor asked me if I was “vegetarian” (translation: weird), I think she really enjoyed the meal.  I know that everyone else, including the toddler, did too. And most of all, I think they all appreciated my efforts and could taste the invisible ingredient, love. 

 

Giving and Getting

Owner wrote:

Giving, Getting and Gratitude 

During the holidays, our thoughts turned to the three “G”s: giving, getting and gratitude. When we sat down to our Thanksgiving dinner, many of us declared our gratitude for the abundance in our lives. In December, we showed our thanks by giving gifts to those we love.

Here are some ways that families of children with developmental delays and those working with them can make the three G’s special in 2009.  Give:

The Gift of Laughter

My life is full of females. I am working with a several young women on finding their passion, hosting a female exchange student, and just returned from a wonderful visit with my daughter and two-year-old granddaughter. Why would I fit noisy girls into an already full life? Because they are gifts. “My girls” give me the intangibles of laughter and fun. Children of all ages and abilities make us laugh.  Although some days it seems we only give to them, they too give us so much to laugh about. The healing power of laughter cannot be under-estimated. Laughter jogs your insides, releases endorphins and is definitely the best medicine. 

The Gift of Yourself

• Mentor – Helping someone learn something new, find herself and become self-reliant is of the most rewarding experiences you can have.  The gift of mentoring is almost selfish. I believe that the mentor gets much more than he or she gives.
• Volunteer – Volunteerism offers so many opportunities. Go to www.volunteermatch.org  to see the range. Even our youngest, most disabled kids can participate. Make volunteering a family tradition. One family I know works in a soup kitchen every Thanksgiving. If your schools require community service hours for graduation, make sure the activity is personally meaningful.

 The Gift of Time 

One of the best gifts we can give is unconditional time. Time is a precious, non-renewable resource, and wasting it can be regrettable. 

• Spend time, not money – Remember the smells of Christmas cookies, paper mache, and candles burning. These are unforgettable memories that are stored in our senses forever. Give someone a coupon for an hour spent listening or playing a game of checkers. Give a teacher a break by chaperoning a field trip. Give kids a shared activity of their choice without cell phone interruptions. 
• Wait on Academics – At this time of year educators may ask parents to give a child with delays “the gift of time.”  This aphorism means “wait another year before kindergarten or first grade.” Those who have done it will tell you it is the best decision they ever made!

The Gift of Philanthropy

The Council of Foundations www.thegivingfamily.org  offers a book entitled The Giving Family, by Susan Price, which recounts ways families of all means can instill the value of helping others. With an estimated $12 trillion transferring into baby boomers pockets from their parents’ estates in the next 20 years, family foundations are possible. Price recommends engaging children in giving at an early age by

• Holding a Family Meeting – Discuss allocation of designated funds and let each family member suggest a favorite charity. Consider the arts, religion, science, drug abuse, hunger, environment, animal welfare or women’s rights.
• Engaging Grandparents – Ask your parents to collaborate with your children about how they are contributing to their futures.  Offer matching funds for kids’ contributions with money earned from chores and allowances.
• Using Celebrations – Many young men and women are celebrating their b’nai mitzvahs by collecting money for charity instead of receiving unnecessary trinkets. Creative ideas I had heard about include a sponsored walk around the world, donations to a group providing educational scholarships to needy, bright minority students and an investment club. With the estimated $2,500 spent on gifts, one father leveraged that amount into $500,000. The kids then decided where the money should go.
• Giving Globally – Although, in general, giving to local agencies make it easier for kids to see results, here is one special international non-profit I love. Heifer International www.heifer.org allows giving families to purchase a gift animal or seedling that helps those less fortunate become self-reliant. For as little as $10, you can choose among ducks, goats, geese, chicks, pigs, honeybees and other animals from Noah’s ark. Last year my daughter gave everyone a share of a Knitting Basket: two llamas and two sheep famous for their income-producing wool.  Over time this gift multiplies to help entire communities break free from the grip of poverty and hopelessness.

 The Gift of Letting Others Give to Us

When we let others give to us and accept their generosity graciously, we give them a gift in return. Thank you all for giving so much to DDR. I am so grateful for all I have learned from you. Your year-end gifts are most appreciated.  Rest assured that we will use them to help families find the best help for their children. Happy New Year!