Thursday, May 28, 2009

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.

Friday, May 15, 2009

Candle Lighting Ceremony for Autism Awareness Month

On April 22, 2009 I had the privilege of coming together with other parents and grandparents for a candle lighting ceremony commemorating Autism Awareness Month. NAA New York Metro Chapter sponsored this event to honor the children affected by autism spectrum disorders. Even though it was a cool and rainy evening, there was a great warmth of spirit at our gathering. We were fortunate enough to have the assistance of Council Member Daniel Garodnick and his staff in securing the steps of City Hall in New York City as the venue for our ceremony -- what a beautiful and awe-inspiring spot!

I, along with several other parents -- John Gilmore, Susan Raitt, Louis Conte, Mary Coyle and Mary Holland -- and Khalid Rehman, a grandparent and Chair of the chapter's Advocacy Committee, spoke from our hearts about our personal struggles and triumphs as well as the issues facing those in the autism community and what we can do to help. Parent and NAA Parent Mentoring Committee Chair and Advocacy Committee member Dara Berger led off the event as master of ceremonies with her personal journey and kept everything moving all evening long. Council Member David Weprin joined us and spoke to the group. Thank you Mr. Weprin for taking the time to share in this special event! To close the event, we lit five candles -- one each to honor children, families, medical, therapeutic and educational service providers, and autism organizations and then a fifth candle, representing Unity. Special thanks to all our candle lighters -- especially Jonathan Gardella, who lit our children’s candle. And most of all, thank you to everyone who showed up to join together to honor our very special children! --Kim Mack Rosenberg

related posts:
Candlelight Speech by Dara Berger
Candlelight Speech by Kim Mack Rosenberg
Candlelight Speech by Susan Raitt
Candlelight Speech by Khalid Rehman

Candlelight Speech by Susan E. Raitt

Candlelight Speech 042209 Final

Candlelight Speech by Kim Mack Rosenberg

Thank you, Dara.

As Dara said, my name is Kim Mack Rosenberg. I would like to welcome all of you here both personally and on behalf of the New York Metro Chapter of the National Autism Association. Our president Sabeeha Rehman would normally be delivering these remarks however she is out of the country. She is with us in spirit and sends her thanks to all of you for coming out to honor our children.

For those of you not familiar with us, our chapter is a non-profit, all-volunteer organization that serves New York and the surrounding counties. We have been in existence about a year and have accomplished much in that time. I just wanted to quickly tell you about some of what we do. Information about our programs and events is on our website at -- and you can link to our blog from there as well.

First and foremost, we are here to serve and support families who are affected by autism. To do so, we strive to bring families information on a wide variety of topics -- some traditional and some more cutting edge.

We hold monthly educational sessions and we have attracted wonderful local as well as national speakers on a variety of topics – everything from homeopathy to special needs financial planning. We also hold monthly Parent Network Exchange Meetings, which are less formal and are more like moderated discussion groups – usually led by a professional on whatever that month’s chosen topic is. These meetings have covered everything from nutrition to tax issues.We have a free parent mentoring program where we strive to connect families in need with a parent who is suited best to helping them.

We will be hosting a family fun day at Muskoot Farms in Westchester on May 30. Information is on our website and this will be a great day with lots of activities planned for children with special needs as well as for their siblings. Like last year, this October we will again co-host a 2 day autism conference with an exciting line up of nationally renowned speakers. I am very proud to be a part of this organization and honored to work closely with the parents, grandparents and professionals who are involved. It is a labor of love for each of us. I do this for my son Henry who, while he still has many struggles ahead, has made great progress. We work hard every day to ensure that Henry is getting the appropriate interventions.

Just this Sunday in the New York Times, there was an article about a family struggling to find an appropriate educational placement for their daughter and struggling with the tremendous cost of the appropriate placement they found. The final sentence of that article struck home with me and I would like to share it with you all -- I am guessing it will resonate with each of you as well. Ruby’s mom said:
“When you have a child like Ruby, you realize how much of a role you have to play in that outcome, how involved you have to be to affect that outcome — especially early on, when the stakes are so very high.”
We are here tonight because we recognize that we must each be our child’s staunchest advocate to ensure that they have the brightest futures possible. We all look for appropriate educational interventions, therapies, social skills groups, activities, medical care, and, for many, biomedical or alternative treatments. We look for teachers, doctors and therapists who recognize the tremendous potential within each of our children.

One of the challenges we face as parents of children on the spectrum is that each child on the spectrum is unique in both their gifts and their challenges. This puts new burdens on us as parents as well as on the professionals who teach and treat our children, but there are many many people out there truly dedicated to helping our children. I

t is our job as parents -- though it is not always an easy one -- to find and fight for those programs and people who are the right fit for each child’s unique needs. Even though our paths may be different, each of us has the best interests of our children at heart and, at bottom, that is the most important thing. If we look hard, I am sure we will see that there is more common ground among us than not and I urge us all -- starting today -- to stand together on that common ground, for the sake of our children.
Thank you.

Candlelight Speech by Dara Berger

Good evening everyone.
The first thing I would like to do is welcome you all to NAA's very first Candle Lighting Ceremony for Autism Awareness Month. My name is Dara Berger and I am your host for this evening's event. Just to tell you a little bit about me, I am a resident of Manhattan, I chair the parent mentoring committee for the National Autism Association NY Metro Chapter which you will hear about from our first speaker. But the most important and meaningful thing you could know about me is that I am the mother of child who has Autism and his name is Dylan.

Our main goal of tonight's event is to raise awareness about the growing problem of Autism. So I would like to share with you a few ways in which Autism effect's my life. For one, I wake up every morning with a broken heart for what my son and family have to go through. He is such a
bright kid, but he cannot speak. No matter how rested I am in the morning, I have to go into my bathroom and give myself a little pep talk to start another day because he needs me to be strong and he needs me to keep fighting for him. Fight for his recovery. Yes, I did say recovery, because we know some children can recover...not all do. But many make great progress everyday.

Autism is such a complicated disorder. I would need at least 20 hours up here to give you a full picture of what my family goes through on a daily basis. Unfortunately many of you hear today do have a clear understanding. For one I cannot bring my son anywhere I want. A simple trip to the grocery store can send me into tears if I happen to witness another parent and child simply having a conversation with one another-something I cannot do with my son. I have gotten pretty good at holding back the tears at least until I get into the hallway of my building. Those are some things you might not have known about Autism.

Luckily for all the very difficult experiences we go through everyday there are some equally beautiful ones. You can easily get swept up into a world with some of the most nurturing and selfless people you will ever meet. I have never met a group of parents more passionate and giving then the parents of children with special needs. It changes your whole being to appreciate the really small things and you put what's really important in perspective. I am not and will never be the same person I was before Autism. Between you and I ...I like this person a lot better anyway...The therapists, doctors, nutritionist and holistic practioners ...they never give up on the hope of recovery and they never give up on our kids. They are and will always be my true heroes.

For along time I was afraid for people to know about my son, unfortunately there is a very big stigma attached to Autism. I am no longer afraid. I stand before you today proud of my battle wounds proud of my families fight for my son Dylan and proud to be a member of this incredibly supportive community of people.

Now I want to let you know that we have a very special program for you tonight. Some parentes will come up hear to share their own experience each of them will be very different, since no child or family is affected in the very same. If there are any council members here that would like to say a few words than we would like to give them a chance to speak to you. And then we will light five candles to honor the different groups of people affected by Autism.

Friday, May 1, 2009

Dr. Doreen Granpeesheh: What is ABA and How Does it Work Side by Side with Biomedical Interventions?

Dr. Doreen Granpeesheh and Katie Wright

We were honored to have Dr. Doreen Granpeesheh speak at our April 2009 NAA NY Metro Chapter monthly Educational Presentation. She is the founder and director of C.A.R.D. (Center for Autism and Related Disorders), the President of ACT Today (Autism Center and Treatment Today) and a Principal member of the Thoughtful House Center for Children and Charity Organization that provides behavioral services in collaboration with medical treatment and research. Dr. Granpeesheh also sits on the board of Defeat Autism Now!

In her information-packed presentation, Dr. Granpeesheh did a great job of demonstrating that the DSM IV criteria for diagnosis of autism and related illnesses leaves out important factors common in many children on the autism spectrum. For example, the criteria ignores sensory sensitivities and challenging behaviors as well as the many medical conditions found in children on the spectrum. Recognizing and including these issues in the diagnosis would provide a more accurate description of our children with autism and provide better guidance on how to treat these children. Because she recognizes the importance of looking at all these factors, she understands that a children's body needs to be in the right place – biomedically and from a sensory perspective – to most fully benefit from educational and therapeutic interventions, like ABA.

She discussed the foundation of ABA -- that every behavior has a function and when you change the antecedent and/or consequence the behavior changes -- and the importance of understanding the basis of a child’s behavior in order to effectively remediate or relieve that behavior. She explained that a good ABA program uses ABA techniques to increase language, socialization, play skills, and academics, among a host of other skills. She stressed that not only is it important to have a good program in place but also to have the significant hours in that program for a child to progress – a child needs both a high quality program and a lot of time in the program to succeed.

She specifically discussed "Theory of Mind" and how the C.A.R.D. Curriculum addresses this area of concern. She also discussed how the C.A.R.D. curriculum can help even more mildly affected children or children on the road to recovery who still have deficits in executive function, an area in which many children continue to struggle even after major “autism symptoms” seem to have been resolved.

Dr. Granpeesheh’s take-home message of the night was that children with autism do recover and there are steps that parents should explore – medical, therapeutic, and educational -- to help make this happen. Dr. Granpeesheh’s website is a great resource for parents. Please visit for more information.

Candlelight Speech by Khalid Rehman

Khalid Rehman
Chair, Advocacy Committee, NAA NY Metro Chapter
A practicing physician and a grandfather of boy with Autism

Thank you for joining us this evening at the first candle lighting ceremony to celebrate the Autism Awareness Month at the steps of the city hall. As you all know, April is designated as the Autism Awareness month all over the world and April 2nd as the International Autism Awareness Day.

I also want to thank the advocacy committee members, particularly Dara Berger, Kim Mack Rosenberg and Lisa Rudley for making this event possible.

I also want to extend appreciation and gratitude to my Councilman Daniel Garodnick and his office staff for helping us organizes the First Annual Autism Awareness event at the City hall.

Autism is an epidemic and the number of children affected by it is ever increasing. Some years ago, the CDC estimated that 1:150 individuals or about 2.3 million individuals are affected by Autism. We are sure that the number has now increased since that estimate is at least 5 years old.

Autism is a major health care problem that has serious social, health related, financial and emotional impact it has on the lives of millions of such families. Yet not many people know about this.

Let me use HIV-AIDS as an example. Almost everyone has heard about HIV AIDS. Almost every day some prominent elected official, current and past United States Presidents, Senators, actors and celebrities tell us about HIV AIDS and its deadly impact on our society. The CDC estimated that there were 468,000 individuals with HIV AIDS in the USA in 2007.

We all know that HIV AIDs is a serious public health issue. On Monday 20th April 2009, The New York Times devoted its Editorial space to HIV AIDS and called it “A Real Problem”.

Now let me ask you! How many elected officials and celebrities that you know are talking about Autism? How many people are raising the concerns about an epidemic that affects 2.3 million people? That is 5 times as many as HIV AIDS.? Not many. That is why we are having this event. We need to increase the awareness about this epidemic that is threatening one in every 150 children and 1 in every 90 young boys in the world.

We are loosing a whole generation of children to the Autism disorders. That is 2.3 million children and counting. That is the REAL problem and we need to increase the awareness about that.

The society at large, our elected officials and the educators must recognize that this is a real epidemic and must act together to combat it. We must increase funding for research. We must provide resources for early education and therapies and provide adequate health insurance to care for those affected.

We must clean up the environment. We must remove the toxic substances from our soil, air, food, drugs and vaccines. We must eliminate discrimination towards the disabled. We must eliminate abuse in the residential facilities.

Until a cure is found, we must protect our affected children from harm, offer them the best individualized education and behavioral therapies in order to optimize their best potential. The Advocacy Committee in particular and the New York Metro Chapter of the National Autism Association in general are dedicated and committed to be the voice of these children and speak on their behalf till they are able to speak for themselves.