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