Holiday Party 2009

On Dec. 16 we held our 2nd annual Holiday Party for the NAA NY Metro Chapter in NYC. It was a wonderful event. It was made all the more special this year by our decision to invite all our past speakers from every event to come to the party as our honorees. So besides the incredibly hard working and passionate NAA NY Metro Chapter volunteer board and committee members, we also had many amazing parent warriors and some of the most gifted and special people who gave their time to create some memorable events for us to offer to our members.

It was extremely easy to get enveloped in a lengthy conversation with any one of these groups of people. The only other time you have the chance to gather this many interesting and caring people under one roof is at one of the many conferences. However, in this instance there was no work involved, just purely enjoying one another's company and being able to reflect on the events of the past year.

The party was put together in the same style that almost everything is regarding the NAA NY Metro Chapter. And that is by teamwork. Many of the board and committee members signed up to take care of a task and then got to the party early to help set up. There is always a unique sense of comraderie among the NAA community, which makes spending time with everyone enjoyable whether setting up or enjoying the wonderful food and drinks at the party.

Now it's time for me to address the food and drinks. Kirstin Boncher, of WhatToFeedYourKids, really out did herself and impressed us all with her very lively and delicious GFCF party spread. She made some simple dishes that tasted anything but simple. Everyone loved her chicken satay skewers with peanut sauce and the vegetable dumplings in asian dipping sauce. I can't imagine how many people must have asked her for the recipes to these outrageous tasting dishes. Now let's talk about the desserts....WOW! They were out of this world. No, truly they were. Being on a gluten free diet as I am has never been so easy.

If only I could eat Kirstin's food and GLOW gluten free cookies everyday. The cupcakes were as delicious as any gluten containing ones. I dare anyone to try to tell the difference. GLOW gluten free cookies also provided their amazing gluten free casein free cookies. The ginger snap cookies and the chocolate chocolate chip were our favorites. The lemon squares, made by Kirstin, were purely decadent...need I say more.

As far as drinks, Norene Chin was kind enough to pick up everything from water to juice to soda. But she really showed us what she can do by making a hot apple cider tea punch from scratch. This was a huge hit and really put many of us in the holiday mood. My husband Mark Berger was kind enough to pick up and haul over many bottles of wine that he carefully selected as well as sampled at the party.

All in all, the party was truly a major success. I am already looking forward to next years!

Special Thanks to GLOW Gluten Free Cookies for donating their gluten free/casein free cookies to our holiday party and you can find all the recipes at WhatToFeedYourKids.com

Enzymes and Autism

On November 18, 2009, Dr. Devin Houston, the founder and CEO of Houston Enzymes, presented to our group on the scientific basis supporting enzyme use in children on the autism spectrum and the practical ways in which enzymes can have a profoundly positive effect for many children. Dr. Houston was kind enough to travel – along with his wife Tricia – all the way from Arkansas to share with us his knowledge as a biochemist and a pioneer in the field of enzyme research – especially with respect to children with ASD. Dr. Houston holds a PhD in biochemistry and before founding Houston Enzymes worked in academia and research (researching with respect to enzymes and other areas) as well as the enzyme industry for several years. (photo: Sujata Setya (NAA-NY Metro), Dr. Devin Houston, Tricia Houston)

In his presentation, Dr. Houston defined enzymes, discussed the different types and sources of enzymes and differentiated system enzymes from the digestive enzymes, about which he was presenting. He discussed how and where in the GI tract enzymes were active, and why. Following all the science, he gave parents good practical advice about choosing enzyme products: what to look for in enzymes, enzyme safety, and what dosing to consider.

So many children with ASD have gastrointestinal issues stemming from a variety of causes, including GI inflammation, allergies or the immune system dysfunctions, malabsorption, nutritional deficiencies. Enzymes can be an important adjunct to special diets or a stand-alone therapy in lieu of special diets (when families are unable to, for whatever reason, implement a special diet) to help many of these children. Enzymes help us to break down foods into an absorbable form and therefore can help many children with ASD (and others!) whose own bodies cannot properly process various foods. As Dr. Houston explained, different enzymes work on breaking down different types of foods, and therefore, if you know that your child has difficulty with certain foods, you can actually choose enzyme products that target your child’s needs. As one example, Dr. Houston showed us how the enzyme DPP IV broke down casomorphin and therefore would potentially be helpful to those with a casein (dairy) issue.

Dr. Houston’s presentation helped parents and others in attendance to better understand the science behind enzyme therapy in children with ASD (and others with gastrointestinal difficulties) as well as the practical application of enzymes. His tips on what to look for in enzyme products to choose a quality product were practical and easy to follow. For example, he told attendees that “mass units” such as milligrams were not a useful in indentifying potency in enzymes – rather, each enzyme has an “activity unit” (such HUT for fungal protease) that identifies its and that activity unit is what should be provided on the packaging by the manufacturer. With respect to dosing, he advised that dose should be based on the size of the meal, and that you have to work up to a dose that works for your child – everyone is different. He also recommended taking enzymes that the beginning of a meal, in this way, the enzymes are in contact with the food from the get go. He also reminded us that not everyone needs every enzyme – if you can determine which foods your child does not tolerate, you can more specifically target your enzyme therapy with enzymes that affect those foods.

Many thanks also to Jillian, Tara and Ben (pictured below) who volunteered to help our event run without a hitch!

Autism and Shamanism at the Rubin Museum of Art

On November 8, 2009, the NAA-New York Metro Chapter proudly collaborated with the Rubin Museum of Art, a dialogue between Sas Carey and Eric Hollander, MD, on the topic of Autism and Shamanism. This event was part of the Museum’s series entitled “The Red Book Dialogues,” in which the paired guests interpret and discuss images from Carl Jung’s “The Red Book,” as a jumping off point for their conversation. Ms. Carey and Dr. Hollander came to the conversation with very different perspectives, but along the way they also found some common ground. Ms. Carey is a holistic nurse, a healer, and a spiritual guide with a background in the traditional medicines of Tibet and Mongolia, in particular. She is a frequent traveler to Mongolia, where she has worked closely with the nomadic communities for many years, and is the director of Nomadicare, a support organization for nomads. Dr. Hollander is an internationally-recognized psychiatrist, currently on the faculty of the Montefiore Medical Center University Hospital of the Albert Einstein College of Medicine. Prior to joining Montefiore, he was the Esther and Joseph Klingenstein Professor and Chair of Psychiatry at the Mount Sinai Medical Center.

Along with “The Red Book,” the film (and book) “The Horse Boy” served as a guiding theme for this discussion. Ms. Carey knows Rupert Isaacson (the author of “The Horse Boy”) as well as some of the shamans who treated Rowan, the child central to the film and book. She discussed that a number of shamans have described to her childhoods that sound remarkably similar to those of autistic children. I thought this raised some provocative thoughts about healing and autism, and gifts within each of us that may lie untapped. Dr. Hollander and Ms. Carey also discussed some of the other aspects of the journey to visit the shamans in Mongolia that could have helped Rowan – for example, the act of riding the horse. Dr. Hollander, in his role as interviewer, demonstrated an openness to discussing non-traditional treatment options with Ms. Carey. Because of his openness, the discussion was a lively one.

The auditorium for this dialogue was full. The audience was comprised of people from the autism community as well as people who were not familiar with autism but were interested in shamanism and other similar practices. Dr. Hollander and Ms. Carey fielded many thoughtful and interesting – and often challenging – questions.

NAA-NY Metro is thankful to the Rubin Museum for allowing us to collaborate on this event and we look forward to working with the Museum on future projects.

(Photo: Sas Carey, Kim Mack Rosenberg (NAA-NY Metro), Dr. Eric Hollander, Sabeeha Rehman (NAA-NY Metro))

NAA Conference and the How Much Longer Campaign

by Peggy Becker

I was invited by the NAA leadership, along with all the conference attendees, to participate in the How Much Longer Campaign. We were asked to sit in front of a camera and finish the sentence "How much longer.....?"

With 4 of my autism friends, I went to the location. One friend said "How much longer until the federal government spends more on vaccine safety than they do on vaccine promotion?" Another said "How much longer until my son's words will be able to reflect his thoughts?" Another said "How much longer until we can quit banging our heads against the wall, knowing we've been heard, because we're right." My sentence was "How much longer until my 11 year-old son will be able to tell me what his favorite color is?" It was a surprisingly cathartic exercise. I'd love to hear how others would answer this question!

Dr. Jeff Bradstreet: Common Problems & Effective Treatments at the National Autism Conference

Dr. Jeff Bradstreet (second from left) with NAA-NY Metro's Peggy Becker, Sabeeha Rehman, Khalid Rehman and Kim Mac Rosenberg.


Kim has posted about Dr. Bradstreet's lecture on her blog Embracing Wellness. Go to Dr. Bradstreet: Common Problems & Effective Treatments to see her overview.

Sabeeha Rehman has included the lecture highlights below.

Lessons Learned from Jeff Bradstreet

"My child is getting better". Most of the time we mean, 'our child is getting better in relation to themselves'.
Don't fall into that trap. Your benchmark should be neurotypical kids.

'Six keys to success are 'persistence', 'persistence, persistence.......'

'Your most precious resource is TIME. We cannot wait for a ten year double blind, controlled study'.

'Inflammation is present in the gut of ASD children. And it is not being tested'. The only labs that perform the Calprotectin test (a noninvasive test that may be helpful in assessing GI inflammation)are Genova Diagnostics in the US and a Swedish lab.

'Quadruplets - wombmates. A mom adopted frozen embryos and all four had autism. All four have recovered and are neurotypical'.

Why does one intervention work for one child but not for the other? The influencing factor is the bacteria in your system.

Inflammation and oxidative stress, if present, have to be addressed at the same time.

In doing research, group little kids into a subgroup. They are more likely to be closer to the event. Do not group them with older children.

To assess, you need optimal biomarkers. Neopterin is a very viable biomarker. It indicates an overly active immune system. Porphyrin is another good biomarker for autism. They can be associated with mercury and lead, but do not have to be. These are biomarkers that give you a good target.

Our brains need time-out to relax - children with ASD more so. Concentration uses more energy than flapping hands. When they flap their hands, they are calming their brain.

When comparing labs, check the control units. They vary amongst labs.

Language will take time to develop, even after the biological issues are addressed.

Take the time to take care of yourself, so that you can be PERSISTENT.

-Sabeeha Rehman

Live Posts from the National Autism Conference at Embracing Wellness

I am at the National Autism Conference in Weston, Florida this weekend and I am trying to post short overviews from as many speakers as I can on my blog at Embracing Wellness during or after lectures. Please visit my posts and share with others who might be interested. These are just short summaries of what are long presentations but I hope to convey the positive energy of the conference and give a general overview of what each speaker is sharing. The conference has been great so far.

Here are some highlights so far...
Omega 3's for ASD
Rapid Prompt Method with Soma Makhopadhyay at the NAC
Dr. Julie Buckley - Treating Autism as a Medical Disease
Dr. Dan Rossignol on Assessing and Prioritizing Treatments
Roy Leonardi & Phyllis Musumeci on De-Escalation Techniques to Avoid Restraint
Dr. Theoharis Theoharides on Autism as an Emerging Neuroimmune Disorder

Kim
Treasurer and acting Vice President
NAA-New York Metro Chapter
embracingwellness.blogspot.com

Dr. Devin Houston On Enzymes in Autism and Gut Issues

Dr. Devin Houston
The Role of Enzymes in Autism and Gut Issues

Wednesday, November 18
6:30 - 8:30 pm: Lecture
6 pm: Networking / Social Hour
Educational Program

Location:
The Rebecca School
40 E. 30th. St. New York, NY

Please post questions as a comment below and we will forward the questions to Dr. Houston for him to answer at the lecture.

Enzymes are proteins in our body that do work such as breaking down and arranging molecules so they can be used by the body. Often, children and adults are lacking necessary enzymes and supplementation with plant based enzymes can make up for the deficiency. The results can be dramatic for people who are particularly low in digestive enzymes. Learn all about how enzymes work and if your child (or you) might benefit from them from Dr. Houston, the researcher and scientist who created Houston Enzymes.

Teaching Fitness to Children on the Spectrum

On Sunday, October 25, 2009, families joined together in Central Park, on a sunny, crisp Fall day, for a hands-on tutorial on teaching fitness to children on the autism spectrum. Our group of young athletes and their parents were led by Eric Chessen. Eric brings to his practice not only his knowledge of fitness and physiology but also a background in psychology and training in ABA. He works with children and their families as well as with schools and other organized programs. Eric believes strongly in establishing the fundamentals of fitness so that children have a solid foundation on which to build as they learn to play sports or other physical activities. For many children on the spectrum, basic body movements and coordination are significant challenges and Eric works to remediate these issues.

At our Central Park event, he taught parents and children some fun, simple activities that got the children moving their bodies, with adult assistance where needed. Kids were engaged in and having fun with bear walks, obstacle courses, ball activities, rope activities (like the athlete in this photo) and many other programs designed to allow them to develop the foundational physical skills that may be weak. With the help of several terrific volunteers, Eric and the parents were able to begin to help the children work on these body basics. Parents also were able to spend time chatting with Eric and getting additional tips on helping their children develop stronger physical skills and learning more about why it is important to have these skills in place so that children then can focus on learning sport-specific skills and rules more easily because movement itself will be more natural.

On his website, autismfitness.com, you can learn much more about Eric and his programs.

NAA New York Metro Chapter President Testifies on Mandatory Vaccinations at a Public Hearing Before Representatives of the NY State Assembly

On October 13, 2009, NAA New York Metro Chapter Chapter President, Sabeeha Rehman, testified at the Public Hearing before representatives of the New York State Assembly with respect to safety concerns related to the H1N1 vaccine, and in opposition to mandatory vaccination of healthcare workers for both the H1N1 and seasonal flu vaccines.

On August 13, 2009, the NY State Health Commissioner, Dr. Richard F. Daines, issued a regulation ordering that healthcare workers be vaccinated for the H1N1 and seasonal flu by November 30, 2009, or risk losing their jobs. Healthcare workers and others spoke up in strong opposition to this mandate and rallied in Albany on September 29 in opposition to Commissioner Daines’ edict. The Albany rally drew hundreds of concerned healthcare workers and other citizens. It appears that others in Albany took notice.

The public hearing held on October 13 in Manhattan and was presided over by Assemblyman Richard Gottfried, Chairman of the Assembly Health Committee and was called by the Assembly Standing Committee on Health, Assembly Standing Committee on Labor, Assembly Standing Committee on Education, Assembly Standing Committee on Higher Education, and Assembly Subcommittee on Workplace Safety.

Speaking up for the interest of families affected by autism, a panel of well-regarded individuals offered their testimony:
Sabeeha Rehman, President, NAA New York Metro Chapter; and the grandmother of a child affected by autism
Lisa Rudley, Coalition for Informed Choice and Autism Action Network; and the mother of a child affected by autism
John Gilmore, Executive Director, Autism Action Network; and the father of a child affected by autism
Louis Conte, Autism Action Network; President, Autism Westchester; and the father of triplets affected by autism
Mary Holland, J.D., legal scholar and a mother of a child affected by autism.

The highlights of the panel’s testimony included:
John Gilmore in providing a context of the legislative framework and history, raised the issue of the legality of the regulation requiring mandatory vaccines;
Louis Conte challenged the assertion of the H1N1 flu being a “pandemic;”
Lisa Rudley drew attention to the critical value of informed consent, and how mandatory vaccination eviscertated informed consent; and
Sabeeha Rehman raised the issue of safety of the H1N1 vaccines, particularly for pregnant women, referring to the package insert of the vaccine that states that these vaccines have not been tested for safety in pregnant women, or its impact on the fetus. One of the Assemblymembers asked to see the package insert. Ms. Rehman walked over to the dais and pointed out to the Assemblyman, on his copy of the package insert, the highlighted text stating that these vaccines had not been tested for safety in pregnant women. It was noted by the Assemblyman that he wish he had seen this earlier. Seeing what the manufacturers of the vaccines had disclosed and acknowledged, put to rest any ambiguity about the vaccine being safe for pregnant women.

The hearing started at 10 am, and the panel on autism didn’t get to present until 7:00 pm. The panel was 29th on the list of 60 witnesses. Testimonies were given by the State and City agencies, organizations representing teachers, nurses, physicians, unions; health networks, educational institutions, the American Civil Liberties Union, Life Health Choices, Consumer Health Freedom, and numerous individuals affected or potentially affected by Commissioner Daines’ policies.
Transcript of Testimony

P.S.: On October 16, Thomas J. McNamara, an acting justice of the State Supreme Court in Albany, issued a restraining order on the regulation, stopping the Health Commissioner’s plan, at least temporarily, in its tracks. http://cityroom.blogs.nytimes.com/2009/10/16/judge-halts-mandatory-flu-vaccines-for-health-care-workers/

On October 22, Governor David A. Paterson announced that the State Health Comissioner Richard F. Daines, M.D., has suspended the mandatory influenza immunization requirement for New York health care workers.
http://blog.timesunion.com/capitol/archives/19305/state-reverse-mandatory-vaccines/

Sabeeha Rehman

2nd Annual Autism/Asperger's Conference in New York City - Oct. 3-4, 2009

James Adams, Nancy O'Hara, and Sabeeha Rehman

They came from all boroughs of New York City, from Upstate New York and Downstate New York, from New Jersey, Connecticut and New Hampshire, from Louisiana and Colorado, and from Montreal. Exhibit space was sold out; an art exhibit displayed the work of artists on the spectrum; gift-bags with food samples for all, colorful booths including an indoor gym set, and parents, grandparents, teachers, therapists, and doctors, settled in for the two-day conference to listen to an array of superb speakers. This was Autism/Asperger’s conference 2009.

Some memorable quotes and take-home messages:

“Oreo!” The baby points and crows. He can’t talk yet, but already he knows what an Oreo is…and he knows that if he looks at his mother and points, she’ll give him one. This amazing process of ‘knowing’ is from his birth. An autistic child is missing this innate gift. He might know the name for an Oreo, but not what it’s for, and not how to ask for it”. Eustacia Cutler – 83 year-old mother of 62 year old Temple Grandin

“Early Intervention assessment should not just rely on data, but take into consideration informed clinical opinion i.e parent’s report, and the natural context.” Steven Blaustein, Ph.D., CCC-SLP

“To maximize your insurance reimbursement, demonstrate medical necessity and the diagnosis code to support it, and get the physician to sign-off on it.” Christina Peck, CPC

“Yoga has the potential to significantly improve fine & gross motor skills, muscular fitness, muscular strength, and balance.” Deborah Gruber, M.Ed., Ph.D.

“Our children should be on probiotics – the good germs; Our children are not getting enough Vitamin D – they need 20 minutes of sun exposure daily; first build up their mineral level, then get the lead out; rotate foods each week; give them protein for breakfast; avoid MSG – an excitotoxin; and if you first treat their medical problems, the neurologic problems will improve.” Nancy O’Hara, M.D.

“Vitamin/mineral supplement is well-absorbed, and improves nutritional status, porphyrins, possibly neurotransmitters, and possibly autism symptoms.” James Adams, Ph.D.

“There is no perception without attention. We see with our eyes and perceive with our brain. Our eyes view the landscape. Our right brain maps the geography. Our left brain interprets the information”. Melvin Kaplin, O.D.

“We do what we do because we want something, or we want to avoid something…child doesn’t want to stay in school – child cries – child is sent home. Identify what he is trying to avoid. Change the antecedent or the consequence, or both, and you modify behavior.” Doreen Granpeesheh, Ph.D., BCBA

“Top 10 Must Buy Organic Foods: Peaches, apples, pear, winter squash, green bean, grapes, strawberries, raspberries, spinach, and potatoes”. Geri Brewster, RD, MPH, CDN

“Family Services offered by Autism Speaks: Online Resource Guide, 100 Day Kit, Resource Library, School Community Tool Kit, Autism Safety Project, Family Services Community Grants, Autism Response Team Coordinators, Family Legal Appeal Project…” Peter Bell.

“Do not delay making your Will and appointing a guardian for your children. You must review your will periodically, as circumstances may change.” Stuart Flaum

And the most memorable moment, as a young lady sitting in the front seat, addressed the writer’s panel:
“I had autism…I have recovered…and I don’t want ever to go back again, it was too painful.” Liz

Sabeeha Rehman

Report on Age of Autism by Kim Mack Rosenberg

Photo Album

Presentation Handouts

Drive Brain Development: Closing the GAP Between Your Child’s Chronological Age and Their Developmental Age

Sujata Setya with Dr. Gruttadauria

On September 23, 2009, Michael A. Gruttadauria, CD, DACAN, spoke about Neuro-Enhancement Therapy and now to enhance brain function in your child while you are doing your biomedical protocol.

Dr. Gruttadauria explained that PDD is a broad diagnosis covering a spectrum of childhood neurological disorders. What it means in actuality is a delay in the brain's developmental process. In essence, for every 24 hour period that goes by, your child's brain only develops for 18 hours. After 1 year, there may not be a visible difference between your child and a neurotypical one, but after 2 and 3 years, you see the GAP. The GAP is the difference between the actual or chronological age of your child and their developmental age; meaning the age that best describes where they are with language, socialization, and overall development. Unfortunately, this GAP widens every year as our expectations of children grow exponentially. Sensory-Motor Integration drives brain development in neonates and toddlers, so can we use it therapeutically. The vast majority of doctors that treat kids on the spectrum address the biomedical issues, but no one is addressing the GAP.

Dr. Gruttadauria, is the founder and clinical director of The Long Island Spectrum Center in Plainview, New York, and one of only a few hundred doctors worldwide to achieve Diplomate status in Chiropractic Neurology. Five and a half years ago, Dr. Gruttadauria's 18-month-old daughter was diagnosed with PDD-NOS. It was at that point that he began a personal and professional mission to help children with neurodevelopmental disorders. In 2006, Dr. Gruttadauria created a research-based treatment program called Neuro-Enhancement Therapy (NET). NET combines a functional neurological and bio-medical examination with hemispheric-based sensory stimulation, multi-sensory integration, IT-based cognitive stimulation and bionutritional modification. In September 2007, Dr. Gruttadauria's daughter began kindergarten without any special education and without a diagnosis! Dr. Gruttadauria was recently awarded the Caring Heart for Autism Award.

Dr. Gruttadauria’s contact information:
(516) 470-9525
(516) 470-9525
http://www.lispectrum.com/

NAA NYM Rallies to Oppose Forced Vaccinations - Sept. 29, 2009

One Voice
“Stop the Shots!”
“Stop the Shots!”
“Stop the Shots!”
The crowd chanted, making their voices heard, raising their banners.
At the steps of the East Capitol, they gathered – parents, families affected by autism, advocates, lawyers, doctors, nurses, therapists, scientists, leaders, followers...
They came - to the steps of the East Capitol – from Upstate New York, from Downstate New York, from New Jersey, from North Carolina, from where they came, it didn’t matter.
They spoke with one voice, rallying to the cause of Freedom of Choice.
Freedom from forced vaccinations.
Freedom of informed consent.
Freedom to choose what is injected in your bodies.

The Rallying Point
This historic gathering of over 700 healthcare workers, advocates, and families affected by autism spectrum disorders was sparked by an unprecedented regulation promulgated by Health Commissioner Daines to invoke the Emergency Preparation Act 2009. This act requires healthcare workers and pregnant women to be vaccinated with the seasonal flu vaccine and the H1N1 vaccine by November 30, or risk losing their jobs. Under this regulation, there is limited to no recourse for vaccine injuries or death sustained as a result of these mandated vaccines.

Forced vaccination!
Risk losing their jobs!
Is that constitutional?

That was the rallying point.
And it was awesome!
Massive turnout. Over 700 people crowded on the steps of the Capitol and the plaza, raising their placards and posters, waving stars and stripes, handing out posters, signing the petition, donating to the legal defense fund, and chanting: “Give me liberty!”
And waiving signs:
“Freedom of Choice should be mandatory”
“My Body, My Choice”
“Got Consent?”
And the sun shone on them.

The media lined up the circle, videos rolling, cameras clicking.

They Speak for the People
The line-up of speakers was remarkable and energizing. Kevin McCashion, President of We The People, Albany Chapter, roused the crowd with his passionate appeal for freedom. Doctors, nurses, and therapists expressed their outrage at the government’s decision to deprive individuals of their right to informed consent. Scientists challenged the safety, efficacy, and lack of sound research to support this decision. Lawyers challenged the constitutionality of forced vaccination. And advocates appealed to the crowd to stand up for their rights, and to fight for their rights.

People’s Voices
Today it is the doctors, the nurses; tomorrow it will be the school teachers…That is medical genocide… we are not living in a totalitarian nation- yet. Gary Null

I won’t tell you what to do, you don’t tell me what to do. Louise Habakus

Promote a goal of healthcare that promotes health, and not public sickness. Mary Coyle

The answer to 1984 is 1776. We are endowed by our creator and not the government. Kevin McCashion

It is like selecting one religion for us. Vaccine is not the only option..Seasonal flu is not an emergency. Alan Philips, JD

How to avoid the flu? Wash your hands. Judy McQueen, RN

Just because the FDA approved it, doesn’t mean it is safe and viable. Deb Gerhardt, RN

Stand up for your rights…contact your legislators, work with the Autism Action Network and National Autism Association’s New York chapter…stay out of my body, stay out of my kid’s body. John Gilmore

Face-to-Face
Gary Null, PhD, Ralph Fucetola, JD, John Gilmore (activist), Michael Schachter, MD and Heather Walker (Healthcare student and activist) met with the Department of Health officials, and Gary Null reported back on the outcome, at the rally. A copy of the “letter petition” was hand-delivered to the Secretary Deputy Saunders for Governor Paterson.

We have only just begun
A remarkable start to a long journey. It won’t be easy, but together we can overturn this and make history, or rather, preserve our history of freedom.
Let’s make it happen!

This rally was organized by Heather Walker, activist and healthcare student, We the People, Albany chapter organization, with help from the Autism Action Network, Life Health Choices, and many New York state nurses.

Sabeeha Rehman


See Photo Album.

How To Keep Your Marriage Strong While Raising A Child With Special Needs

We gathered on September 17 for the Parent Network Exchange Meeting on"How to keep your marriage strong while raising a child with special needs". The speakers, Ethan Schutz and Lorin Gold, are both social psychologists who also have a child with special needs. Lorin asked us to try to encourage people to attend as couples in order to get the most out of the workshop. So it was nice to see that 80% of the participants did come with their significant other.


At the beginning, Lorin and Ethan had us go around the room and tell a little bit about ourselves, such as how old our child is and what we were hoping to get out of the workshop.


Next they had us do an interactive exercises on communication. We had to pick a partner, face them and pretend to speak to them about problems in our marriage. In turn, the pretend partner ignored us or was defensive in response. We would switch places, so we got to feel what both roles were like. Lastly, we repeated the exercise while really listening and being sensitive to our partner. This was very helpful to most people to see that we tend to get into patterns in how we communicate that are not helpful to the situation. And we do this without even thinking. Many people found that they had the same fight over and over, since they just replied the same way they always do without really listening to their partner. The exercises were definitely an eye opening experience.


Ethan and Lorin also spent a great deal of time showing us the different types of communicating personalities and how some can sabotage this very important tool in a relationship. We learned that communication is really important and keeping an open mind to each situation is vital. Otherwise we fall back into our old patterns, which can be unhelpful and even detrimental to solving on-going issues as well as everyday problems.


Some participants did express an interest in going into specific materialises. They wanted to hear other couples on-going issues. Ethan and Lorin had already spent a great deal of time getting information that would normally be taught over days to fit into our two hour block of time. So we decided that we would create a separate event for the participants where they could just talk about common marital issues that couples raising a child with special needs face. We are hoping to plan this event for November.


So overall I think many of us found the workshop very helpful in highlighting where we could use improvement in how we engage in our relationship. For some of us it has to do with not listening, blaming,being defensive or falling into bad habits. I think we all left with a renewed sense of approach to our relationship as well as some very good new tools to implement.


Dara Berger

Grandparent Support Group at the JCC

This support group is designed to help grandparents deal constructively with the challenges that face their families when a grandchild has special needs. Share with other grandparents the range of feelings and stressors that make up this unexpected journey.

Facilitated by Hannah Cohen, life skills coach working with young adults and families.

9 Wednesdays: Sept 16 & 30, Oct 14 & 28, Nov 11 & 25, Dec 9, Jan 6 & 20

7-8:30pm $135/$180

The Jewish Community Center in Manhattan
334 Amsterdam Ave. @ 76th St.
New York, NY 10023

To register or for additional information call Hannah Cohen at 646.505.5708

or visit www. jccmanhattan.org/specialneeds

Rethink Autism's Web-Based Program -- Rethinking ABA

On July 14, 2009, Jamie Pagliaro, the Executive Vice President of the Rethink Autism (www.rethinkautism.com) presented his company’s innovative new web-based educational program for children and young adults on the autism spectrum to a group of parents and professionals at our monthly Parent Network Exchange Meeting.

Rethink Autism’s program offers Applied Behavior Analysis-based teaching modules to parents, caregivers, and professionals wherever they may be located (and also licenses the program to schools and other providers with more than 3 children). For parents who are located in areas with few, if any, service providers, or who simply -- for whatever reason -- cannot get the ABA hours their child needs, this site offers an alternative that makes ABA available to virtually anyone.

The site is easy to use so that subscribers can log on and jump right in (training modules are available for those who need or want help getting started). Subscribers can set up password-protected access for themselves as well as others who work with the child. Subscription details and pricing, along with sample videos, are on the website. Once registered, you complete an assessment of your child, developed by Rethink Autism’s team of professionals. Based on that assessment, the site presents a recommended curriculum and sequence of teaching modules. There is flexibility to adapt the curriculum to your child’s changing needs -- for example, to add modules for additional skills you want to target or to delete modules of goals you have already met (or, if you use a different assessment tool from the on-line assessment, you can manage your curriculum by matching modules to that assessment). As new video modules are added to the site, they will appear in your curriculum if they match your child’s assessment profile.

Since the program is web-based, there is no limit on how often you can use the videos. Videos are not meant to be shown to the child being taught, but are, rather, a tool to teach the subscriber how to teach the child. The lessons are broken down into easy to understand segments and feature actual children on the spectrum being taught. Each module also provides helpful hints and strategies to help individualize the lesson.

Mr. Pagliaro showed our eager group a several sample videos, including videos of peer imitation, using assistive technology to communicate, how to complete a chore chart, and how to help others. The company already has added over 400 video lessons on a wide range of skills, including everything from pre-academic/academic skills to social interaction, to skills of daily living. New videos will frequently be added, based on feedback from users and the company’s professional advisory board.

Each lesson also includes a printable program plan and an on-line assessment tool and tracking mechanism. The program offers additional user-friendly features to help incorporate professionals or others working with your child and to create a comprehensive program.

Rethink Autism recommends that parents work with an ABA professional if one is available but the site is also a great resource for parents who may not have a trained professional in their area or may have limited access to professional services. Subscribers to the service can choose to add access to a Rethink Autism professional for questions, but this feature is not meant to replace professional guidance from someone who knows your child.

NAA - NY Metro is pleased to announce that Rethink Autism is offering our members and readers a 20% discount for the first month to try the program. Simply enter the discount code RA2009NAA when you subscribe. This offer expires on August 31, 2009.

DIR/Floortime has been one of the most effective interventions for my son

Gil Tippy with Susan Roberts and Sujata Setya

Dr. Gil Tippy, the Clinical Director of the Rebecca School, spoke to our group on June 16^th. He did a fantastic job of explaining DIR/Floortime. He was witty and persuasive. He talked about his journey from ABA to DIR, which was not dissimilar to mine. He showed us videos of interactions with kids who initially appeared pretty unrelated but quickly began interacting with the therapist using the Floortime technique. He discussed his work with Dr. Stanley Greenspan, who is a consultant to the Rebecca School, and the book Dr. Tippy is writing about his research. The most striking thing Dr. Tippy mentioned was that the kids who have been at Rebecca School for 3 years no longer have the diagnostic criteria to be classified as autistic.

For my son, Floortime has been a fantastic intervention. When my son was diagnosed with the catch-all we all know and love, PDD-NOS, it was recommended that he receive 40 hours of ABA. He was not yet 2 and that sounded like a lot of structure for a 19 month-old child to me. We signed him up and he pretty quickly figured out that if he got all his “programs” done, his therapist would play with him. She walked in, he reeled them off as fast as possible. It always felt uncomfortable but I pushed aside my gut instinct because this is what our expert said he needed. At one point, one ABA therapist said my son could read 50 words. As a test, I rewrote them in different ink on different color paper. He couldn’t read any of the words – they were meaningless to him. Another therapist thought it would be a good idea to reward this 2 YO kid with pennies. Well, once he had two pennies, one for each hand, he was satisfied. On top of all that, we were instructed to stop him from doing any stim. Anyone with a stimmy kid knows that this job is a full-time one! Instead of having fun with your kid, you spend all your time as an adversary trying to stop them from doing something that, in all likelihood, they are doing because they need to.

What was the problem with this approach? The things that motivated my son were not being respected and enjoyed. The words the therapist chose were the words she thought he should know – not words that symbolized anything he was interested in or that got him anything he wanted. The pennies, he could care less about them. Plus, because I was always saying stuff like “hands down” and “stop spinning”, he was avoiding me and our relationship was suffering.

My epiphany came when I went to a SonRise training session. The first thing they said was join your child in their stims. I got home from that week, sat down next to my son and started spinning cars with him. He gave me the biggest smile I had seen in probably a year and within seconds was telling me how to spin the car, which car to spin and just like that we were interacting. The other important principle was to harness the things your child enjoys and build on them. My son quickly began to be happier and more related. It was very exciting.

When Rebecca School opened, we were thrilled. At last a school that used the same kind of principles we were applying at home with such success! DIR/Floortime is very similar to SonRise – respect your child and what they love, make the interaction the reward, the relationship is paramount. My son has attended the school for 3 years and continues to make huge strides socially and emotionally and academically. He loves to go to school. He is so much happier and so much more connected to family, friends, teachers and therapists. My son and I are no longer adversaries; we are on the same team now.

The bottom line is that ABA can teach a child rote skills but can’t really teach natural emotional and social behavior. You want your child to be motivated to relate to others because they want to, not because they are following a rule. In life, if a person can’t have social relationships, they will have extreme difficulty having a job or a lover, no matter how good they are at quantum physics.

A Picnic At Muscoot Farm

Mother Nature and the Staff of Muscoot did a spectacular job for the families of The NewYork/Westchester Chapter of NAA during a recent trip to the 1850's farm in Katonah,NY. Coordinated by Farm Manager Sue Moga, farmers and a host of teen volunteers helped to make the day very special for the 83 children and parents who came from the Greater New York area.

The guests initated their visit with self guided tours of this gentleman's country home turned magnificent county park. One of the highlights of the day included a rare opportunity for hands-on encounters with the spring newborns. Many children were able to touch days-old chicks,lambs, pygmy goats and calfs while their animal mothers looked on. In the same barn, a few children even watered "Pineapple" and milked "Jersey Girl," two very friendly cows.

Crafting followed at the picnic tables under the shade trees next to the white country house. The teen volunteers helped each child decorate paper lambs and chicks by using actual sheep wool and chicken feathers from the farm animals.

The children next put their artistic talents to work creating drawings of the sites of the day.One young artist, Henry, drew a vivid red and blue Tom cat from "Tom and Jerry," no doubt inspired by one of the many working mousers living on the farm.

Soon some families shared their picnic lunches while a few kids played frise in the cool grass with a couple of the four yellow and black Lab therapy animals.

Farmer Jonathan drove a tracker which pulled a flatbed hayride of 37 adults, children and two therapy dogs to the beautiful lush green back acres of the farm. While on the ride, the group passed a fenced-in field with two new fauls and their mothers. One dark brown faul, with a white mark down the front of its head, lay taking a nap in the tall grass with the bright afternoon sun warming its body.

"The day was I was just breathtaking," commented Chapter President Sabeeha Rehman with her husband Khalid."This is something our families need and we can't wait to visit next year."

Nancy Gardella

Erica Rahavy on Relationship Development Intervention

In early June, parents and therapists gathered for another Parent Network Exchange Meeting to learn about RDI (Relationship Development Intervention). Erica Rahavy led the group in explaining how this therapy was developed especially for children on the spectrum. The founder of the approach took the best pieces of many different modalities in child psychology to create RDI. From what we understood it is a way of dealing with your child that builds onmany of the skills that happen to be core deficits in children on the spectrum such as emotional reciprocity. It is similar in some ways to Floortime in that you really try to engage your child. For example, you can take an activity like folding the laundry and make it a bonding and emotional experience for you and your child. Erica recommended that you first find a professional guide to work with you and your family. They will tailor a program specifically for your family and individual child.

One parent who has used this therapy, Susan Raitt, shared her experience and delivered other general information about RDI in a very parent friendly way. She also recommended some good books for those parents that are interested to find out a little more. I think most of us walked away at least intrigued by what this therapy has to offer. I know personally that it peeked my interest,since it is so parent based. My husband and I are always looking for ways to connect better with our son. Most of the other therapy he receives is addressed at his individual needs rather than interaction with those around him. I will definitely be one of the parents reading up some more on it and possibly trying it out.

Dara Berger

Valerie Dejean on Tomatis

Valerie DeJean with Katherine Black, Tracy Merslich and Meera Sankar

On Wednesday, May 27, 2009, Valerie Dejean, who practiced occupational therapy for many years and now is a Tomatis consultant and the founder of the Spectrum Center, spoke to our group about attention, behavior and communication.

Dr. Tomatis was a French Ear, Nose and Throat (ENT) specialist, who pioneered the listening therapy named after him. Valerie Dejean was trained by Dr. Tomatis himself and her centers have provided Tomatis listening therapy to over 4000 children, with much success. The presentation titled “Attention, Behavior and Communication” was more about the impact of listening on the behavior and not as much on the nuts and bolts of the “Tomatis Therapy”.

Valerie started by defining “developmental” as something that happens during the early years of life and “pervasive” as something that affects the whole body, physically and mentally. Children develop their ability to communicate by listening, watching and then imitating the adults and other children around them. However, children with autism often are impeded by language processing difficulties that leads to problems with communication, social interaction, imaginative play, and behavior.

Valerie described our brains as more “programmed” than “hardwired” -- so that, beyond some basic functions, we learn skills through imitation. If a child lacks or has limited imitative capacity, learning is impacted. Children with autism frequently are dyspraxic, in other words, they have deficits in motor planning, which can affect many areas of function, including listening, imitation, and ,hence, language development. She went on to explain that language is merely symbols that help us communicate. Symbols are then related to ideas and thoughts. She gave an example of the word “ball”. We know that the symbols (letters) B-A-L-L means that it is something that is round, can roll on the ground and can bounce. Though a child with autism may be able to spell the word “ball” he or she may not be able to connect that word with the concept of what the ball can do and hence may not understand that if it is thrown on the ground, it will roll towards another child.

In addition, if our sensory system is faulty we cannot properly take in information from our environment. According to Valerie, Tomatis helps develop the ability to use our awareness to control our actions and to more appropriately and effectively use information from our environment. She also described the way in which Tomatis can reawaken neural networks and get them working -- to re-educate the auditory system to develop the ability to focus our attention and thus develop “event perception” -- an ability to, among other things, effectively understand and organize information from our environment.

Hearing is different from listening, Valerie said. We hear lots of things simultaneously when we are on the street or when many people are talking. However we listen ( purposefully) to one or a few voices in order to analyze and understand what we are hearing. We have the ability to ignore the background sounds. Some of the children with autism disorders have difficulty with this process. Tomatis programs, she said improves the listening abilities of these children and in doing so, improves their ability to interact and communicate.

Khalid Rehman, MD
Kim Mack Rosenberg

April Renee and Dr. Andrew Moulden “Educate Before You Vaccinate” Presentation

April Renee, Dr. Andrew Moulden and Lisa Rudley

April Renee and Dr. Andrew Moulden delivered a very important, powerful message to our community in their presentation to the NAA-NY Metro Chapter on Wednesday, May 20, 2009. April stated that vaccination injury is real and is happening to many children and adults. April stated that she lost her beautiful daughter Casi to vaccine injury 10 years ago, and that Casi died from bacterial meningitis that was brought on by vaccine-induced immune dysfunction. April shared with us her knowledge and research on vaccines and informed us of our rights when comes to vaccinating. Her mission is to educate the public on vaccines. April’s website is www.vacinfo.org

Dr. Moulden, a Canadian doctor who views vaccine injury and micro-vascular strokes as being the same affliction. He states that the reduction in blood flow to the vessels is seen following a vaccination. He presented numerous pictures of children and adults with strokes through facial paralysis. Dr. Moulden compared the actual disease-induced strokes to the vaccine-induced strokes. We were all left in awe by his depiction of vaccine-injuries. He is working on a protocol to assist in re-establishing the blood flow back to the vessels that caused the stroke. Dr. Moulden is currently an expert-witness for vaccine-injured plaintiffs in the United States Vaccine Court. His website is www.brainguardmd.com

--Lisa Rudley

Judy Chinitz Helminthic Therapy: Worms, Autoimmune Disease & Autism

Last week a group of parents, therapists and other professionals gathered to talk about Helminthic Therapy, otherwise known as parasite (worm) therapy. It was apparent to me that even the most stone cold die hard mother warrior types could get a little squeamish with this topic. The idea of intentionally putting a worm into your child can seem a little off beat if not nuts but with the possible end result of helping your child out of the depths of autism we were all present with bells on to listen up carefully.

Judy Chinitz best known for her book: "We Band of Mothers" led the charge on this most curious subject.She brought along Dr. Marc Dellerba who holds a PHD in Molecular Science. They spent the better part of two hours explaining how this newly recognized therapy can be very helpful for autoimmune disorders. It is based on the Hygiene Theory, that we no longer come into contact with enough germs tomake our immune system get strong and work properly.

Mark and Judy focused on two different types of parasites: TSO and Hookworm, the latter of which Dr. Dellabra's company Autoimmune Therapies provides for purchase.

Judy started the presentation by explaining to us how her fascination with these worms started many years before they were actually available for purchase to the general public. She had heard about Helminthic therapy really helping people with IBS and Crohns and she thought this could really help her son. At the time, Judy's son Alex was really sick with gastrointestinal illness. So the mom on a mission called up the University of Iowa that was doing a study and asked for her son to become a part of it. They said no since he was a child and also considered too sick. Well years later Judy got her wish which was to get her worms. She explained that it was well worth the wait, they really helped her son tremendously. Alex made huge leaps cognitively, which only fueled Judy's excitement about this therapy. She began to tell her clients in her practice as a nutritionist all about it.

Right now she actually gives her son TSO and Hookworm, both of which were described in great detail to us.

What we learned is that TSO was available first. It is the Pig whipworm. The way it's administered is that the ova come in a glass jar with saline. This parasite is microscopic so it is not visible to the naked eye and thesolution has no taste. As a mom who just started this therapy only weeks ago, I have to say it is up there with one of the easiest things to administer that I have tried. And you only give it once every two weeks. The dosage is something you need help with by a doctor or nutritionist even though you do not need a prescription to purchase it over the internet-yes purchasing worms over the internet! I know your probably thinking what next right? I have to admit I did feel a little bit like a crazy person when I did it and when I first gave it to my little guy. However on day 3 when I saw a significant cognitive improvements it was difficult to feel that I was doing anything but really trying to help my son.

Here are my personal pros and cons, please keep in mind as I write this I have only been doing this for 4-5 weeks at this point. Pros: big leap in cognitive improvement, much better listening with less self directed behavior, more expressive language, less gas, stools formed with normal color. Cons: a little expensive, my son gets pretty emotional for a couple days after dosage.

The reason Judy went to the Hookworm was to bring down the monthly expense. The cost is less and they last longer, but they are administered differently. Marc explained that they are applied to the skin on the arm under a bandage. They enter through the skin and make there way to your small intestine where they can reside for years. They do not replicate inside the body, so there is no need to worry about infestation and it is difficult for anyone to catch it from that person who has the hookworm.

The good news is that if at any point your child seems uncomfortable or you would like to stop for some reason you can simply take medication and get rid of them rather quickly which I know gave me a feeling of confidence.

What pushed me over personally into giving this therapy a try is that I understood that these worms effect the immune system in such a way that they turn off the autoimmune switch which results in the body producing less inflammation. In essence it is supposed to normalize the immune system to work properly.

I also need to point out that many parents who get a positive outcome need to continue the therapy to sustain the positive results, some longer than others. There was one mom present in the audience who did the therapy for five months and after achieving desired results stopped and months later her son had sustained the positive results. So like all the other therapies it is different for each child.

Now Judy and Mark did explain for reasons we don't currently understand is that the effect on adults is much quicker sending many into complete remission. In children the effect has not been that miraculous. However, many children leap ahead, some even talking for the first time in their life. Not all children have this positive outcome just like with the other biomedical and holistic therapies they don't effect all children in the same way.

This presentation like many excited me by the mere fact that parents and professional never stop looking, never stop trying and never stop sharing information with one another in hopes of helping all the children.