ValeriesList Newsletter
Autism/Asperger's Info-Letter April 21, 2008

in this issue

Juice Plus+®

NFAR (National Foundation For Autism Research) WIne Pairing Event

OAR Releases Asperger DVD for College Professors

Mom Looking for Small Karate Class

Spices on gluten free foods?

Standing too close

Insurance in CA

Home of Guiding Hands

Mom needs Karate Class in Poway or Carmel Valley area

Parent Rights/Due Process

Mitochondrial Dysfunction May Play a Role in Autism Spectrum Disorders Etiology

In Harmony program is on sale!


 

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I never endorse anyone or anything. Opinions expressed in what I send out, may not be shared by me. Everything is for informational purposes only.

People who "advertise" through this newsletter have never been checked out by me. This includes professionals and even people who are interested in babysitting, etc.

Please take the time to throughly check out anyone and everyone that will be working with or caring for your child. We are all sadly aware, through news stories and word of mouth, of people who pray upon special needs children because of their extra vulnerability.

Thank you,
Valerie Dodd-Saraf

www.ValeriesList.com


  • NFAR (National Foundation For Autism Research) WIne Pairing Event







  • In honor of Autism Awareness Month:

    You are cordially invited to a Wine Pairing dinner to benefit Autism on Sunday April 27 th at 5:00 PM in the evening. This dinner is being hosted by Chef Robert and "A Taste of Florence Restaurant" www.atasteofflorence.com and Executive Wine Consultant ,Joy Marie Ciolino, and PRP Wine International. Come enjoy some wonderful cuisine and amazing wines for a good cause!

    A portion of the proceeds of the dinner as well as $24.00 per case acquired will be donated to the National Foundation For Autism Research (NFAR.org). The dinner is $50.00 per person, non- refundable. The wines offered this night will be offered by the case.

    PRP Wine International is an full service wine company. PRP wines are exclusive and we host over three hundred boutique vineyards world in over 23 countries around the world. Our wines are exclusive and good for you. PRP offers in -home and corporate gift service and our charity fundraiser's are another event where we enjoy giving back to the community.

    If you love wine and food and want to help a great cause and enjoy a fine wine dinner, please contact me at Joymarie@prpwine.com or 858-866-0906. Seating is limited so book your reservations soon.

    NFAR
  • OAR Releases Asperger DVD for College Professors
  • oar









    Arlington, VA, April 18-- The Organization for Autism Research (OAR) released Understanding Asperger Syndrome: A Professor's Guide, a 12-minute video for use by college students with Asperger Syndrome as a tool to educate their professors, teaching assistants, and others about the disorder. OAR produced the DVD in cooperation with the Global Regional Asperger Syndrome Project (GRASP) and Pace University in New York thanks to a grant from the Schwallie Family Foundation. The video is available now for viewing and download at no cost on OAR's Web page, www.researchautism.org/resources/AspergerDVDSeri es.asp

    "The idea behind this series," said Peter Gerhardt, Ed.D., OAR's president, "is to have adults with Asperger Syndrome in effect teach what it means to be an adult with the disorder."

    To that end, the video features two people with Asperger Syndrome, Michael John Carley from GRASP and Kiriana Cownesage, a doctoral student at NYU. Dr. Gerhardt also appears providing information on "reasonable accommodations" in the college classroom. In addition to being posted on OAR's Web site, OAR will post it on YouTube.com and produce DVDs to be available upon request via the Web site by early June.

  • Mom Looking for Small Karate Class
  • I have a 8 year little girl. Just wondering if anyone knows of a Karate class that is willing to work w/ a child with Autism. If you've had a good experience with a particular place or instructor, please share the info. We live in the Pacific Beach/Point Loma area.
    Thanks
    -Rosa

  • Spices on gluten free foods?
  • Please post, Valerie, thank you again,
    Hi, my son is going to be starting the GF diet and we are in need of resources that will help with finding "spicy" seasoned foods, for ex: bbq chip flavoring, sour cream and onion seasoning, doritos flavoring, salty seasonings, etc, that can either be added somehow to gluten free foods, or are already on these items he will need to be eating.

    Any help or suggestions/ideasresources, website ideas for adding or finding foods he can eat that are "tasty" and even hot(flaming cheetohs taste)???? Any help would be greatly appreciated, he really enjoys all these tastes and we want to help him through this process as much as possible, it will be challenging enough. Thanks so much in advance,
    Becky @ cranemail@cox.net

  • Standing too close
  • Hi Val,
    Could you please post this question. My 13 y/o HFA son has a tendency to stand too close to people when talking to him. This is now causing him trouble at school. His teacher has asked me for strategies to help him become aware of this problem.

    I am aware of the TEACCH circle of friends technique to help make him aware, however I wonder if there are any other suggestions for strategies that people found success with helping him become aware that he is doing this behavior? Thanks, Faith
    Please respond to ToColt@verizon.net

  • Insurance in CA
  • We are searching for a new insurance plan to cover our expenses for our family member (a 5 year old) with autism. Does anyone have an insurance agent in California (Southern California) that they can recommend?
    Thank you,
    Aunt Audrey

  • Home of Guiding Hands




  • Hi Valerie,
    Your website was mentioned at a planning group I attend as a good place to have a link to our agency website. Home of Guiding Hands has been providing support to consumers with disabilities in San Diego County for more than 40 years. We have residential, respite, community living and life planning programs. The life planning program was what led to the suggestion for a link on your website. We offer a six- session series of workshops to parents to assist them in the process of planning for the life-span of their children with disabilities. The small groups offer support and the opportunity to learn from the experiences of other parents. The workshop format breaks down the overwhelming task of life-planning into more manageable components. Guest speakers present information on housing options and legal issues and take specific questions. Families of all ages have participated and found benefit from the process. Whether they feel more prepared for transition, IPP meetings, or estate planning, the benefits are tangible.

    Our agency website is www.guidinghands.org

    If you have any questions, particularly about life planning, please feel free to contact me. Wendy

    Wendy C. Smith
    Respite and Life Planning Program Coordinator
    Home of Guiding Hands
    1825 Gillespie Way Suite 200
    El Cajon, Ca 92020
    (619) 938-2876
    (619) 938-3050 fax
    wendy@guidinghands.org

  • Mom needs Karate Class in Poway or Carmel Valley area
  • Hi,
    My son is almost seven, and we are interested in finding a small sized karate class, does anyone know of a school in the Poway area or Carmel Valley area??
    Thanks, Kelly

  • Parent Rights/Due Process
  • V, Came across this parent friendly pamphlet for parents explaining the Due Process process with nice time lines and flow charts. L.

    http://www.dredf.org/special_education/duepro cess.pdf

  • Mitochondrial Dysfunction May Play a Role in Autism Spectrum Disorders Etiology
  • I thought you might be interested in this. This quotes higher percentages. Very interesting. Note that the person reporting this SELLS the process to find it, so it will be very important to see peer-reviewed repeatable research. Nevertheless, a claim such as this makes me feel that this is an alley worth walking down a bit further.
    Dr J Feder

    http://www.medscape.com/viewarticle/573004

    Mitochondrial Dysfunction May Play a Role in Autism Spectrum Disorders Etiology

    April 15, 2008 (Chicago, IL) - New research suggests mitochondrial dysfunction may play a role in the etiology of autism spectrum disorders (ASD) in a subset of this patient population.

    Here at the American Academy of Neurology 60th Annual Meeting, a retrospective analysis of 41 children with ASD who were being evaluated for suspected mitochondrial disease showed that 32 (78%) had defects in skeletal muscle oxidative phosphorylation (OXPHOS) enzyme function and 29 of 39 (74%) harbored abnormalities in the OXPHOS proteins.

    "We're very excited by these findings, and, based on these results, we will continue to pursue this [mitochondrial dysfunction] as a potential cause in a segment of the autistic population," principal investigator John Shoffner, MD, owner of Medical Neurogenetics, in Atlanta, Georgia, told Medscape Neurology & Neurosurgery.

    While it is common for patients with mitochondrial disorders to have autistic features, Dr. Shoffner said his team investigated whether the opposite was true, that patients with ASD had indicators of underlying mitochondrial disease.

    Study subjects were children aged 2 to 16 years who had a confirmed diagnosis of ASD and were referred for investigation of possible mitochondrial dysfunction due to the presence of markers for mitochondrial dysfunction, including increased lactate, pyruvate, and/or alanine.

    Significant Numbers of Affected Individuals?
    According to Dr. Shoffner, previous recent research has reported that up to 20% of children with autism have hyperlactacidemia and increased ratios of lactate/pyruvate.

    "When you consider the frequency of autism in the general population, and you take 20% of that as a rough estimate of the proportion of children that may have these biomarkers [of mitochondrial dysfunction], it begins to raise some interesting questions about how to approach diagnosis, mechanism of disease, and patient management in what could turn out to be significant numbers of individuals," said Dr. Shoffner.

    To find a possible explanation for elevated lactate levels, the investigators conducted a more detailed investigation that included analysis of mitochondrial enzyme activity in skeletal muscle biopsies.

    They found defects in a series of selected representative proteins from each of the 5 enzyme complexes, which are responsible for producing and synthesizing energy in the muscles.

    "Not only did we find enzyme defects in these patients, but we also took the investigation a step further and isolated and examined selected proteins involved in oxidative phosphorylation and found many of the proteins were also abnormal," said Dr. Shoffer.

    The researchers found defects in all 5 enzyme complexes, often described as the body's "power plants." Complex 1 abnormalities were the most common, with 41% of patients affected by OXPHOS enzyme and protein chemistry criteria. In addition to enzyme-function abnormalities, the investigators also found evidence of degradation of their proteins.

    The muscle mitochondrial DNA (mtDNA) was sequenced in 40 of the patients. Of these, 75% (30/40) had normal mtDNA. Two subjects had heteroplasmic mtDNA mutations, which are often a marker for pathogenicity. The remainder had changes in the mtDNA that are still under investigation.

    According to Dr. Shoffner, these data indicate that nuclear DNA mutations are the most likely causes of the mitochondrial defects. However, mtDNA mutations do occur.

    "Obviously, autism is not a single condition but a true spectrum of disorders. There are many ways in which the genes can go awry, and our hope is that this study will open the door to a greater understanding of at least 1 subset of this patient population with metabolic and enzymologist changes," he said.

    However, he added, further research in unselected populations of autistic patients is needed to confirm these findings.

    The study is supported by Medical Neurogenetics, which conducted the testing. Dr. Shoffner is an owner of Medical Neurogenetics.

    American Academy of Neurology 60th Annual Meeting: Abstract IN1-1.004. Presented April 13, 2008.

  • In Harmony program is on sale!













  • Now through April 30th, the In Harmony program is on sale!
    Great resource for parents, teachers & therapists Sale price is $40 plus tax (savings of $20)

    Visit www.inharmonylearning.com to hear the songs and learn more Call us at 760-693-0622 to purchase a copy at the sale price!

    In Harmony - Integrated Learning Program includes: 60 page book, enhanced CD, set of 120 flashcards

    The In Harmony program is a dynamic, structured learning approach that combines the specialties of speech and music therapy. It includes a full-color program manual, an enhanced audio CD and color- coded photo flashcards. The CD contains creative and catchy songs recorded by award-winning musicians. Printable chord charts and instrumental music trax, allow this program to be customized for individual needs and preferences.

    In Harmony is based on the research principles of music and speech therapy. It is an integrated approach for acquiring essential skills in the areas of activities of daily living, community living, pragmatics/ social skills, motor imitation and academics. Sample goals and benchmarks can be easily utilized by a variety of educators and professionals.

    Testimonials:
    "I am a Speech-Language Pathologist and I work with children with Autisim Spectrum Disorders. I use the In Harmony program in all my therapy sessions. The great tunes and realistic sequencing cards never fail to interest even the hardest to engage. I recommend it to all my families. It's a great way to incorporate speech and music therapy techniques outside the therapy sessions." --Breena Hayman, M.S., CCC-SLP

    "As parents of a child with autism, we have seen first- hand the power of integrating music and speech therapy through our son's progress during this program. As the founders of the Autism Tree Project we are committed to early intervention and this program supports that initiative, by providing a structured, dynamic intervention that enhances early development and communication. This program has our highest recommendation both personally and professionally." -- Dayna and Todd Hoff

    Julie M. Guy, M.M., MT-BC, NMT
    Board Certified Neurologic Music Therapist
    Vice-President | The Music Therapy Center of California
    M| 7801 Mission Center Court Suite 104 | San Diego, CA | 92104
    W| www.themusictherapycenter.com
    T| 619.299.1411