Esther Gomez-Nieto, the President and Founder (and whose grandson Alexander was the impetus for the organization) refuses to take credit for the astounding amount of money that  Alexander’s Angels has raised and contributed to numerous Down Syndrome organizations. But as anyone knows who has run a fundraiser for a nonprofit event, it takes an enormous amount of time and energy. There are so many great causes, and just limited funds and time. Yet, Alexander’s Angels, through Esther and fellow members Janet Dolan and Michael O’Connell, have raised about $300,000 in just the last few years. Most of the money goes towards other advocacy, service and research organizations.

Coming in March, there are three exciting events being planned.  On March 4th, at 3PM, the New York Islanders are hosting Alexander’s Angels.  Purchasing tickets will go towards a great cause and be sure to be a fun filled Sunday afternoon.

On March 19th, all Long Island Friendly’s will donate a percentage of your check to Alexander’s Angels.  Please be sure to mention the organization before you order.  I’m planning on stopping by right after my radio show, Long Island Special Needs Radio, that Monday night.

To coincide with World Down Syndrome Day, and starting right after the United Nations celebration of the day, there will be an art show by artists with Down Syndrome downtown New York City (details on the Alexander’s Angels website).

After 11 years of constant therapy, after a diagnosis of moderate retardation, no one believed that she could write, or think at such a high level at the age of ten.

Through tough love, it took months to get Carly to communicate regularly through the written word, but once she did, she fluently expressed what it was like to engage in ritual behavior such as head-banging and rocking, and how she felt about being trapped inside her autistic brain.

I urge you, if you do nothing else today, to watch this video.

At issue are proposed changes to the definition of autism.  According to the New York Times, many experts expect that the criteria for a diagnosis of autism will be narrower, but it is an open question as to how sharply.

Dr. Volkmar, the director of the Child Study Center at the Yale School of Medicine, believes the definition is going to narrow the diagnosis  so much that it will adversely impact many high-functioning autistic persons.  This in turn, may very well affect the ability of many highly functioning autistic people to get the services needed in schools and other settings.

Differing Viewpoints

According to many news source, including Long Island’s own Newsday, the panel of experts charged with revising the guidelines strongly disagree with Dr. Volkmar’s analysis. Additionally, two other field trials, one at Baystate Medical Center in Springfield, Mass., and one at Stanford University in California, also found that the new definition won’t greatly change the volume of autism diagnoses.

The Washington Post interviewed Geraldine Dawson, chief science officer of Autism Speaks, a national advocacy organization.  While you can read the full interview here, she recommends waiting until the full DSM changes are released, and even then, she advises that we will be unable to see how these changes will affect those seeking diagnosis until it has been in effect for a while.

I believe this is the best approach.  As Dawson states, the DSM needs amending.  There are far too many distinctions among different autism types, with very little difference in treatments.  All will now fall under the umbrella of autism spectrum disorders.

A twitter hashtag (#) is a way to find tweets that have a common subject, in this case, #autism.  Anyone who searches for #autism will find a whole community on Twitter interested in the same subject matter.  You’ll find humor, resources and sharing.

According to this article in the Washington Times, the YouMightBeAnAutismParentIf hashtag became popular several weeks ago, and is still going strong, with tweets both funny and heartfelt.

Check it out!

Above all, have a happy and safe holiday!

K.I.D.S. Plus, Inc. is a 501(c)3 Foundation which was established in 2009.  K.I.D.S. Plus provides therapeutic recreation and developmental sports programs to children with special needs. Physical activity can promote self-esteem, increase general levels of happiness, and can lead to positive social outcomes, all highly beneficial outcomes for individuals with autism and other disabilities. For those with disabilities who are able to participate in team sports, this presents an opportunity to develop social relationships among teammates and learn how to recognize the social cues required for successful performance on the field or court. However, individuals that prefer individual sports such as running or swimming that do not rely as heavily on social cues may still benefit from the positive attributes of physical activity while forming social relationships with coaches or trainers.

Nassau County Executive Edward Mangano is scrambling to figure out what to do before the January 1st takeover.  The MTA has said it would be willing to continue (for a fee) and previous bidders for the privatization are again offering bids.

And for your viewing pleasure:

According to Newsday, the team of 14-28 year olds with varying disabilities, played its only game against another team this season.  One of the team’s coaches, Harvey Pollack,  stated they usually divide into two teams and play each other, as there are no other special needs teams to play against.

The Nassau County Police Activity League is the only PAL in the country to have a Special Needs Unit.

Way to go! Congrats to both the Nassau Knights, and the Kappa Sigma Fraternity.

Consumers of the services of A Very Special Place, Inc., who must be residents ofNew York, reflect the socioeconomic, racial, ethnic and religious diversity found throughout the region.  Consumers range in physical and cognitive abilities from individuals who live and work independently with minimal guidance to those who may require continual care.  Today, more than 1600 people with developmental disabilities utilize the array of programs and services offered at A Very Special Place.

Diane Buglioli will be interviewed on November 28^th, 2011 between 6:30 and 7:00 p.m. on Long Island’s WGBB 1240 AM.  For those out of the local broadcast range, or wanting the best clarity, the program is also simulcast on the internet at www.am1240wgbb.com .

Special Needs Long Island is a weekly radio program dedicated to the special needs community on Long Island.