October 5, 2011: Vaccine Epidemic Book Talk and Discussion

On October 5, 2011, Mary Holland and Kim Mack Rosenberg, co-editor and contributing editor, respectively, of the book Vaccine Epidemic presented a number of key points from the book on law, science and issues in the debate surrounding vaccine choice and led a lively discussion. N. Chin, a parent who attended the Vaccine Epidemic talk, contributed her impressions:

I have continued to seek knowledge about root causes after my son regressed due to vaccines. The book Vaccine Epidemic contains many revelations about how vaccine safety remains a low priority by those who manufacture vaccines and control immunization policy. I welcomed the opportunity to meet with like-minded parents and professionals for a book discussion on Oct 5.

I will focus on the open discussions following the presentations and the goal of knocking down this 'house of cards' as Mary described. She said it has to be through the legal system and as a human rights issue. Others that evening mentioned how results of objective studies will change opinion.

I have to agree with Mary about affecting change through the legal system. Unless these studies receive air time equivalent to what teens see on MTV with HPV/Gardisil ads, or parents see in Parenting magazine, it is indeed extremely difficult to combat long-held beliefs that vaccines are as natural as “mother's milk.” It is clear that Big Pharma can outspend us and squash the most logical and compelling of studies.

We need to help find legal avenues and budget to knock down this house of cards.
One way is to support the Center for Personal Rights. They mentioned organizing with civil rights organizations as well. I plan to see if a couple of my contacts in DC can offer ideas. If we take the time to check our contacts and make some phone calls, we may just get there.

I wish to end on a hopeful note.

In the book, there is a letter by Dr. Francis Moore, who was a very prominent surgeon at Harvard Medical School. If someone as mainstream as Dr. Moore can be convinced of ill-conceived policy, then I remain hopeful that human reason will prevail.

Evaluation, Education and Treatment for Your ASD Child

On Thursday, October 6, 2011, Staten Island parents and professionals were fortunate to hear from a trio of experts on navigating the complex world of helping your child with ASD get the treatments, education and services they need. Dr. Mark Freilich, a developmental pediatrician, Sarah Birnbaum of NY Special Needs Support, a parent advocate and special education advisor, and Geri Brewster, RD, MPH, CDN, a nutritionist specializing in treating children with autism and related disorders, joined forces to present a comprehensive overview of options to consider for your child.

Many parents in attendance had never encountered a developmental pediatrician and Dr. Freilich explained the important role a developmental pediatrician can play in determining the appropriate types and amounts of therapies, the appropriate type of school program and the appropriate medical and biomedical interventions for your child. A developmental pediatrician can help form and/or work with the multi-disciplinary "team" of professionals your child likely will need. In his practice, Dr. Freilich observes the child in relevant settings (school, home, therapists, play group etc.) to get a holistic picture of a child, since children may be very different in different situations or with different people. This helps him to formulate a comprehensive assessment and series of recommendations that are child-specific.

Sarah addressed finding an appropriate placement for your child and the right to FAPE, a "free and appropriate public education." She addressed parents' rights both with respect to public and private school education options and discussed educational choices parents have to make - including where to live and where to send their children to school and, if private school is the appropriate placement for a child, funding issues. She also discussed parents' due process rights. Like Dr. Freilich, she reiterated that what is appropriate is different for each child and that you, as a parent, perhaps with the help of an advocate or lawyer, are the best person to fight for what your child needs. Sarah's explanation of parents' rights - especially the right to seek what your child needs, not merely what is offered, regardless of whether or not it is appropriate for your child, was an important and empowering take home message for parents.

Geri discussed the importance of a solid nutritional foundation to development and to education. A solid nutritional program can make a child feel better, can improve behavior and attention, and for some children even improve the core symptoms of autism -- therefore making the child more available for learning. She discussed that many children benefit from a gluten-free, casein-free (and often soy-free) diet. Parents likely will see changes most rapidly in removing casein, which leaves the system in a matter of weeks. Gluten takes many months to clear and parents must be patient while trying the gluten free diet before determining if the diet is helping their child. She also discussed that there are many other diets that may be appropriate for specific children and that, based on a child's needs, supplements may also prove beneficial. She noted that an excellent first step - even for those who may not need or be able to follow a special diet - is to clean up the diet, remove junk food and artificial colors/flavors/sweeteners, eat whole foods (not processed) and choose organic when possible, eat grass-fed and grass-finished meats, which have a better nutritional profile, avoid products from animals given a regular diet of hormones/antibiotics.

The trio of panelists provided important information and showed how medical/developmental, educational and nutritional/biomedical pieces of the puzzle work together synergistically to help improve children's outcomes.

Dr. Theoharides on the Science & Treatment of Neuroinflammation

Dr. Theoharis Theoharides presented two lectures to NAA NY Metro audiences - on September 8, 2011 at Beth Israel Hospital in Manhattan and on September 9, 2011 at the Westchester ARC - targeted to both parents and professionals. He discussed his research concerning neuroinflammation, mast cells and autism, and discussed a practical treatment option. The NYC and Westchester events were well attended and appreciated by all. The Westchester site also included a Webinar which was well received. There was a long Q&A period during which parents and professionals gained a deeper understanding of Dr. Theoharides’s work and contribution to autism.

Dr. Theoharides described how children with autism often present with auto-antibodies against brain proteins, gastrointestinal problems, “allergies” and fatigue, implying a neuro-immuno-endocrine problem. His recent research has shown that mast cells (immune cells typically known for causing allergic reactions and which serve as “sensors” of environmental cell damage) can be activated by environmental, infectious and stress triggers that lead to disruption of the gut-blood-brain barriers.

He also discussed how one mast cell trigger, neurotensin, was shown to be elevated in the serum of young children with autism. Mast cell activation during pregnancy or prenatally, in response to allergic or non-immune triggers, could disrupt the gut-blood-brain barriers and permit neuro toxic molecules to enter the brain, and result in brain inflammation. Through his research, Dr. Theoharides has shown that the natural flavonoids, Quercetin and Luteolin (found in the supplement NeuroProtek) can block these processes.

With so many children on the spectrum struggling with neuroinflammation, it is helpful to understand both the science behind the causes of neuroinflammation and the treatment options.

Dr. Andrew Levinson Brings Hope and Healing to Families

On September 21, 2011 Dr. Andrew Levinson (pictured at left with NAA NYM Program Committee Co-Chair Dara Berger and President/Program Committee Co-Chair Kim Mack Rosenberg), presented to parents and professionals about his holistic approach to treating not only children with autism but the entire family. He blended biomedical treatment information with insightful, spiritual guidance in a unique approach. He first discussed that children with ASD have many physical ailments including: immune dysfunction, brain inflammation toxicity, metabolic and mitochondrial dysfunction, and gastrointestinal pathology. As a result they are sensitive to many things including change, environmental stimuli, environmental toxins. He mentioned the need to be aware of contmination of municipal water supplies, fish, other foods (including stevia); electro-smog. He spoke knowledgeably about many different biomedical treatment protocols and how different protocols can help children but the most unique aspect of his presentation was the focus on family wellness.

First, on a very practical level, he said that parents should have an honest talk with their doctors about what they can afford to spend on treatment, reminding parents that they need money to live on and to spend on other family members. By being honest, you enable your doctor to devise the best protocol for your budget. You need a team approach and a doctor you can trust.

He spoke about the harm that stress can cause physically and emotionally in a family and how it impacts all family members. Therefore, you need to find ways to alleviate stress. If you are less physically well, you have less energy available to direct toward healing ("You cannot pour from an empty pitcher"). He also reminded parents that ignoring other members of the household is not healthy. Positive family dynamics are important for a better outcome. He encouraged people to find something that enjoy doing - especially something physical, creative or meditative - reminding us that "you have to be a human being" and that children model our behavior so we have to show them healthy behaviors.

He also encouraged parent to seek help from a trusted source if they are struggling. He quoted: "It is only in darkness, that light can be mistaken for nothing else." He encouraged those who have a spiritual belief system to have faith and to pray and reminded us that, for everyone (whether they have a spiritual belief system or not), joy and positive intention can be very powerful. The mind is a powerful tool in healing. He stated that we have to be willing to remove ourselves as an obstacle to healing and see ourselves as instrumental in the change we desire to see. He quoted Yogi Bajan, "Worrying is praying for what you don't want." He closed with these words: "The world is what you make of it but the future is what you imagine it to be" (Yogi M.D.).

Playdates for Children with Special Needs

On September 27^th, the New York Metro chapter of the National Autism Association organized a talk for parents on Special Playdate, an online service founded by Jane Hsu, and how to successfully develop playdates for your special needs child. Ms. Hsu, who holds a Master’s degree in Special Education from New York University, recognized a gap in services that made it easier for parents of children with special needs to organize playdates and decided to utilize the Internet as a networking tool. Special Playdate was founded on the belief that every child needs friends and that, with the right preparation and facilitation, successful playdates can help children with special needs make friends.

The first step in using the service is to create a profile about your child that will be used to match him or her with other children in the area. Parents can create a free profile on www.SpecialPlaydate.com and at no cost can have Special Playdate’s website make potential matches for your child. Within New York City, either the website can make your “matches” or you can retain Ms. Hsu or one of the trained therapists on her team to help match children based on their strengths, limitations and interests, among other parameters. A member of the Special Playdate team can also help prepare your child for meeting his or her new friend and facilitate during the actual playdate to ensure the greatest chance of success. In New York alone, an estimated 1000 profiles have been created for children ranging in age from 3 years to 16 years. The website also has a special area devoted to siblings of children with special needs.

During the presentation, Jane shared tips on how to plan and facilitate a playdate, how to make contact with a new parent and how to prepare your own child. She recognizes that things that come naturally to typically developing children require planning, explanation, and facilitation to many children with special needs and has tips to make a playdate successful. One point she stressed repeatedly was that parents need to be honest with each other so that each parent has realistic expectations of the playdate and of what each considers a successful playdate. She answered parents questions in a lively Q&A session.

For more information, go to www.SpecialPlaydate.com or e-mail info@specialplaydate.com

(pictured: Jane Hsu of Special Playdate and NAA NY Metro Programming Committee Member Janice Bloch Roth)