Sunday, May 17, 2009

AutismOne - Legal and Advocacy Training

I leave bright and early Thursday morning for Chicago with my dear friend Susan. I am so excited to be attending, for at least a few days, the AutismOne Conference. For those unfamiliar with AutismOne, it is a great event, held annually, and is one of the most comprehensive conferences out there.

On Thursday and Friday, we will be in sessions with the newly-established Elizabeth Birt Center for Autism Law and Advocacy. This training should further my knowledge of legal and advocacy issues relevant to ASD and help me to help our community. I serve on the Advocacy Committee of NAA-NY Metro and expanding our knowledge base will help us further our mission. I also recently did a full day continuing legal education seminar on school law, which focused largely on NYS issues, so I am hoping that I can expand on what I learned there. Thanks so much to Mary Holland for helping to make this opportunity happen!

I also am looking forward to the chance to catch up, however briefly, with friends from around the country. Unfortunately, I cannot stay for the whole conference and will head home on Saturday morning.

I will report more upon my return.

Let the Blogging (Re)Commence!

Okay, okay… after being gently hounded by several friends for not blogging in almost two months, I’m back! (Hopefully not in Poltergeist/“They’re baaaack” sort of way!) I have pulled out my calendar to see what I have been up to and I have to admit, I have been a busy girl – my DH would say too busy, but not me. Rather than one boring long post that will put all of you asleep, I wanted to do a quick recap and you can click on my specific posts about:

A quick update on Henry . . . In a nutshell – Henry seems to be doing well. He is incredibly chatty these days, much more outgoing, and school work seems to be more readily clicking (though still a challenge!). On Friday, Henry sang in his school spring concert and he proudly displayed his really cool artwork in the art show that preceded the concert. His class sang a reworked (age appropriate!) version of “Always Look on the Bright Side of Life” from Monty Python’s Spamalot. It was really cute and all the classes performed with such gusto and talent it was a joy to watch all of them.

Henry also gave a great science presentation at school recently. He had the choice of doing a poster or actually demonstrating an experiment and, to my surprise, chose to demonstrate for the entire class. His experiment involved using a lemon, two forks, some zinc plates and wire to activate a small digital clock – pretty cool stuff. He impressed all of us with his knowledge and understanding of the experiment and he was so proud when he successfully demonstrated it!

In the category of “Hey, you never know…” Henry asked to take his NintendoDS to school recently to play while we wait for the lobby doors to open at 8:15am. I held off letting him do this because I feared he would isolate himself from the other kids and just play his game in a corner. Was I wrong!!! The darned thing has turned into a great tool for socializing. Every morning, Henry is surrounded by other children and they are all talking about the games and sharing thoughts and ideas. Who knew??? And Henry has been great about leaving it in his backpack during the day (a condition of being allowed to bring it). A great, and surprising, result (or maybe I am too old to realize that these games actually can be social?)

And me? I continue to work with Dr. Kellman to get my thyroid in order and we seem to be making good progress (Henry seems to be in a really good place with his thyroid right now). Henry and I also continue our sequential homeopathy and Heilkunst work with Rudi Verspoor and we both continue to see benefits from this treatment. Henry seems to be the somewhat more unusual patient who reacts almost immediately to homeopathic remedies, if he reacts at all. In a way, I like this because it shows me that something is going on.

I love being involved at school, and in addition to serving as the co-chair of the Parents Association Communications Committee, I have done a number of projects this spring at school. I worked with Henry's fabulous music teacher, Sarah, to develop and make cute, simple costumes for Henry and his classmates for the spring concert that evoked the “Spamalot” medieval spirit. I also have been working on the school yearbook with Henry's amazing art teacher, Peter, and a dedicated group of other parents. I took on the parent dedication pages – so many of our families supported the yearbook by purchasing dedication pages -- I was amazed and a bit overwhelmed by the response but the extra work was worth it -- I am hoping our final product looks fabulous -- we all put in lots of time and effort and -- more than once -- the great parents with design training on our committee saved me with technical assistance. We are producing the book through Entourage Yearbooks. This is the school's first year using a professional yearbook company and Entourage has been very patient with all of our newbie questions. The one great unanswered question is my husband’s: “What are you doing up at 1 a.m. working on the yearbook???” Sorry honey.

Allergies Be Gone - Thanks Geri!

I had to give a quick shout out to nutritionist Geri Brewster, Henry's NAET practitioner. Geri treated Henry for spring allergies, grasses in particular, a little more than a month ago -- right before allergy season hit its stride. I know so many kids (and adults) suffering from horrible spring allergies this year, and in past years Henry was frequently among the sufferers, but Geri's treatment (knock wood) has allowed Henry to avoid spring allergies this year. Henry even told Geri last week that he does not have allergies (and his behavior, sleeping through the night, and lack of horrible allergic shiners bear him out). Yeah Geri -- you ROCK!!!

Flexing our Reflexes

Several months ago, I had the pleasure of doing a few one-on-one consults with Patricia Lemer, the Executive Director of Developmental Delay Resources and the editor and an author of the wonderfully comprehensive book on therapies for ASD, Envisioning A Bright Future: Interventions that Work for Children and Adults with Autism Spectrum Disorders. One of the things Patty suggested we look into was reflex integration to address areas about which she was concerned after reviewing Henry’s many reports and meeting with me. So I began to explore and learn. Reading Patty’s book and googling led me to information about neurodevelopmental delay (NDD). My understanding (albeit quite limited) is that NDD is the continued presence of primitive reflexes that should have integrated during the first year or so of life and/or the failure of postural reflexes to develop. You can read more about NDD here and here. Sally Goddard Blythe, of the Institute For Neuro-Physiological Psychology in the UK (the INPP), which has done some of the most groundbreaking research in this area, has written several excellent books on the subject and I have just ordered her latest, Attention, Balance and Coordination: The A.B.C. of Learning Success.

Anna Buck, who was trained by the INPP, has established a center in Colorado where she provides assessments and NDD remediation along with a listening program (Listening Fitness) and tutoring. She has also written a book called Miracle Children: Behavior and Learning Disabilities Uprooted. When I read this book, I saw so much of Henry in the children she featured in her case studies, that I knew this was something we needed to explore for Henry.

In early March, Henry began to see a new occupational therapist (in addition to the team in place) to assess his reflexes and, if needed, to work on them. Henry’s new OT, Mari, has been working over the past few months to integrate a number of reflexes and we are seeing nice progress. The two primative reflexes that are most apparent and in need of integration for Henry seem to be the Asymmetrical Tonic Neck Reflex (ATNR) and Symmetrical Tonic Neck Reflex (STNR). Among other things, both these reflexes can impact language -- as Mari explained to me, ATNR can affect information synthesis and STNR can affect the organization of speech.

Mari also uses Brain Gym techniques in working with Henry and we have learned several easy to do exercises that help calm and focus and make him more ready for attentive listening and learning. We are working to incorporate more of these into our daily routine. In addition, Brain Gym exercises are great to use in school to help kids get ready to learn during the school day.

Having begun this work with Henry and seeing nice changes, I also am interested in learning more about the integrative work done at centers such as the National Association for Child Development and the Crossroads Institute.

April 22, 2009 Autism Awareness Month Candlelighting Ceremony

I blogged about The April 22, 2009 Autism Awareness Month Candlelighting Ceremony sponsored by NAA-NY Metro in detail here, but wanted to share the information with my Embracing Wellness readers as well. I had the privilege to come together with other parents, grandparents, and advocates to mark Autism Awareness Month with a special candlelighting ceremony on the steps of City Hall in NYC - what an inspiring location (we even got a glimpse of the Mayor). Even though the weather was not cooperative, the rain could not dampen our spirit! Our NAA-NY Metro Advocacy Committee worked hard to pull together an event that honored our children, our families and all those who work to improve our children’s lives. Thanks to all who attended and participated!

NAA - NY Metro Update - LOTS going on

I am so proud of the work we are doing at the National Autism Association – New York Metro Chapter. I am an active member – treasurer, and a member of the parent mentoring and advocacy committees -- and I have the honor of working with an amazing group of dedicated, talented and brilliant people. We have had many informative and sometimes provocative presentations in the past months and have many upcoming events worth checking out. In the next few weeks we are welcoming speakers on vaccine issues (May 20th), Tomatis (May 27th), Relationship Development Intervention (June 3rd), and Floortime (June 16th). Plus we are having an amazing Family Picnic Day in Westchester on May 30! Information about all of these events can be found here.

We are also beginning to plan for our fall conference that we are sponsoring with Autism Conferences of America. The Conference will take place on October 3-4, 2009 and promises to have an exciting lineup of speakers on many topics relevant to ASD. Save the Date!!!

Since I last blogged here, we have had the following great presentations:

  • On March 25, 2009, Louise Levy, a prominent audiologist, presented on Hearing and Auditory Processing. She explained the difference between hearing and auditory processing (and the interplay between the two), she discussed how processing issues can impact children and gave parents many take home tips to help improve processing.
  • On April 1, 2009, Dr. Mark Freilich, a well-known NYC developmental pediatrician, NAA-NY Metro’s own Tia Marie Smith, and Beth Kastner discussed with parents finding the right therapeutic program for your child, including exploration of both the Floortime and ABA approaches, among other things.
  • On April 28, 2009, Dr. Doreen Granpeesheh , who is, among other things, the founder and director of C.A.R.D. (Center for Autism and Related Disorders), and a Principal member of the Thoughtful House Center for Children, presented on the ways in which ABA and biomedical interventions can work together. She also discussed the need to go beyond the traditional diagnostic criteria for ASDs and to recognize the sensory issues, behaviors and many medical conditions common to many children on the spectrum, which will provide better treatment guidance.
  • Most recently, on May 14, 2009, Judy Chinitz, a nutritionist and parent of a child with autism, and Marc Dellerba, PhD, a researcher, presented on Helminthic Therapy. This is an innovative treatment that has helped many patients with gastrointestinal issues, autoimmune diseases, and other chronic inflammatory conditions. Judy has used this therapy with good results for her son. They explained the history of helminthes (certain types of worms) in our environment and how the western world’s emphasis on hygiene may have resulted in unintended immune responses that the reintroduction of certain helminthes might help modulate. We even learned that a researcher at the National Institutes of Health has suggested that the link between western hygiene practices and autism should be explored further. Parents in the audience who have tried helminthic therapy also shared their personal experiences.

Neurofeedback: "It's Making My Brain Smarter"

Henry began neurofeedback a few months ago and we definitely think it is having a positive impact in many ways. Henry does a particular type of neurofeedback called LENS. LENS requires less active participation from the person receiving treatment and, in my opinion, that helps make it well-suited to children like Henry who might not be so cooperative during “traditional” neurofeedback, which requires the patient to participate in computer-based activities (if Henry liked the activities he would do well, but if he did not like them, he would likely not willingly participate). Treatment is individualized through a brain mapping procedure, which allows the treatment provider to create a plan of treatment to address a patient’s specific brainwave patterns.

You can learn more about LENS here and in the wonderful book, The Healing Power of Neurofeedback: The Revolutionary LENS Technique for Restoring Optimal Brain Function, by Stephen Larsen, PhD, who runs The Stone Mountain Counseling Center in New Paltz, NY. Dr. Larsen’s book explains LENS and gives many case studies, which I love – case studies always help my understanding of a treatment. I also had the pleasure recently of meeting and chatting briefly with Dr. Larsen at the Women’s Health Expo in Kingston, NY. He is a really fascinating man with so much knowledge to share – I look forward to learning more from him and hope our paths cross again.

Henry goes to neurofeedback once or twice a week and we work with a great provider trained by Dr. Larsen. Henry actually LOVES going to neurofeedback and keeps telling EVERYONE that it is helping make his brain smarter! I tell him that he is smart and this just helps his brain to work more easily. He obviously is really proud of what he does through neurofeedback. We are targeting issues such as eye contact, attention, auditory processing, reading, and ability to sit still. We are seeing nice improvements session to session overall and will continue to tweak things as we go to target all the areas on which we are working. After his first treatment Henry said that his brain felt "weird" but later that day said that his brain felt better than before. With the first few treatments (and one time since), Henry also had a night of sleeplessness but that is really the only side effect we have seen, and it is has not occurred regularly at all. I will continue to update our thoughts on this therapy, but it seems to be a keeper!