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!
Saturday, November 14, 2009
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
Friday, November 13, 2009
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
Friday, November 6, 2009
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.
Tuesday, November 3, 2009
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.
Tuesday, October 20, 2009
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
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
Sunday, October 18, 2009
2nd Annual Autism/Asperger's Conference in New York City - Oct. 3-4, 2009
James Adams, Nancy O'Hara, and Sabeeha RehmanThey 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
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
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