Tuesday, March 22, 2011

Wretches & Jabberers

This April, a feature documentary on autism will open in theatres around the country. The film, titled WRETCHES & JABBERERS follows two men with autism, Tracy Thresher and Larry Bissonnette, who embark on a global quest to change attitudes about disability and intelligence. The two travel around the world to Sri Lanka, Japan and Finland to challenge public attitudes about autism and send a hopeful message to reconsider competency.

"A poignant narrative of personal struggle that rings with intelligence, humor, hope and courage, WRETCHES & JABBERERS is about the life-sustaining power of relationships - the personal connections that people make through communication."

This film looks both enlightening and provoking and we can't wait to see it! Directed by Gerardine Wurzburg Academy Award® winner Academy Award® winner (Educating Peter) and Academy Award® nominee (Autism is a World).

WRETCHES & JABBERERS will open on April 1st in 40 cities across America. Here are some theatres in our area that will be holding screenings of the movie:

  • April 2 - 12 noon - AMC Loews Georgetown 14 Washington, DC3111 K Street N.W. Washington, DC 20007

  • April 23 - 12 noon - AMC Columbia 14 - Columbia, MD10300 Little Patuxent Parkway Columbia, MD 21044

  • April 23 - 12 noon - AMC Loews Rio Cinemas 18 - Gaithersburg, MD9811 Washingtonian Blvd. Gaithersburg, MD 20878

To locate an AMC Theatre & Order Tickets: www.amctheatres.com/wretchesandjabberers

If you are in the New York area, TimesTalks Will present Director Gerardine Wurzburg, Larry Bissonnette, Tracy Thresher and Lee Grossman, Autism Society president and C.E.O. to commemorate National Autism Awareness Month on March 30. Tickets are available here.

Monday, March 7, 2011

Pearls of Wisdom from 20 years of kids and care...

Autism is very complex disorder... Is it common in XXY, or XYY or XXX? We actually do not know yet. We do know that boys and girls with these disorders have speech delay as do children with ASD. Speech delays often but not always brings social communication delays. It seems that all children with ASD have some form of social communication deficit but it is not well understood. In fact, there is literature suggesting that they desire and enjoy social interactions but they do not know how to engage and often get overwhelmed during social interaction.

Children with X and Y chromosomal variations occupy a wide spectrum of the speech and language issues and sometimes BUT NOT always have social deficits. In our population of more than 600 children with these disorders, we have soup to nuts in social skills. We have boys and girls who are class leaders, extroverts and very popular in school. We also have boys and girls who have autistic traits who are shy, socially awkward and overwhelmed. All the children may have the same neurogenetic disorder yet they are very different in developmental progression. These social development differences need further investigation before we assume anything.

Children do what works for them, but since they are little and see the world in one dimension, often it is not in their best interest. So babies who cannot crawl often butt scoot, from their perspective it gets them moving. Yet developmentally it avoids crawling which is very, very important for weight bearing and upper body development.

Expose them to as much as you can early ---- it bolsters their confidence. Keep it light. Stress the positive and believe that they can do it. They will follow your lead. And remember to have fun!

More Great iPad Apps:

Create a Car: Create a Car is a click and drag activity for elementary age students. It features an intuitive interface developed specifically for young children. Select one of six vehicle body styles and then select from over 50 different parts to place on the vehicle body.

Reading Magic: From BOB Books, reading magic starts your child reading with this phonics-based interactive game. Your favorite Bob Books characters and full-color animations encourage kids along the path of learning to read.

Wednesday, March 2, 2011

Early Intervention and Why It's Needed

We have had a busy several weeks with patients and I thought that I might devote some time to talking about some common themes that reoccur.

Our babies with X and Y chromosomal variations, those under 3 years of age, are often if not consistently turned down for early intervention services. Typical statements are "he is not REALLY delayed" or "he is so much better than our other children... This is nothing to worry about." "She is so sweet and really happy... it is ok that gross motor is little behind. I am sure that it will get better."

These statements all miss the obvious fact that each and every early delay is not isolated when your child has an X and Y Chromosomal Disorders. It may also not be true of other neurogenetic disorders but that is another story entirely.

If your children with X and Y Chromosomal disorders have delays when under three years of age----it is the early signs of learning dysfunction and it is not merely a delay. It is the first sign of language based learning disorders with graphomotor dysfunction and motor planning dysfunction. In infancy, I have written about the Infantile Presentation of Developmental Dyspraxia. It is the baby trying to motor plan and move but struggling with the execution of it all. (Samango-Sprouse C, Rogol A. XXY: The hidden disability and a prototype for an infantile presentation of developmental dyspraxia (IDD). Infants and Young Children 2002;15(1):11-18.)

When IDEA was first created under the premise to FLAG at risk children and to provide services to
those who were handicapped. Prior to the late 1970's children with special needs were not guaranteed an education. The children with X and Y chromosomal Variations then should always qualify for services as infants since 100% of these children have language based learning deficits which encompass reading and writing problems based on the present research literature.

It is always better to obtain and receive services for your infants. They can be given direct services under the high risk category if nothing else but you will have to fight for them...

First order of business with your little ones... PHYSICAL THERAPY since more than 80% have decreased muscle tone and motor planning deficits. The motor system lays the infrastructure for all learning. Moving is critical to learning and is food for the Brain!

Waiting until the delays are apparent is too late and time has been lost. The presence of an additional X or Y is reason enough to demand EI services and obtain them. These services should be direct and not consultative.
Let us know your experience with obtaining services for your children.

CHANGING IT UP... adding to my blog two new facets.

Great reading: Brain Rules by John Medina, it is fun and interesting and the take home message is that the brain is a great organ and we have barely touched the surface in our understanding of it.

Great iPad apps:
Cookie Doodle- Cookie Doodle is a fun and creative application that lets kids mix, bake and decorate their own cookies without the mess! Kids tap the screen to mix ingredients, use their hands to roll the dough out on the screen and then get to pick from an endless array of icing, sprinkles and candies to place on your cookie. It is a very hands on game that brings out the chef in everyone.