Play Ball! Special Needs Kids on Long Island

A brand new baseball little league has been form on Long Island, welcoming disabled children.  The Little League of the Islips’ Challengers team is comprised of two teams, the Hurricanes and the Cyclones.

As CBS News commented, “the Field of Dreams belongs to everyone.”

The Challengers are the brainchild of Kelly Pipitone and Frank Fritz.  Kelly’s son Jake plays on the team.

There are some special rules too– According to Newsday, each player will be accompanied by a volunteer who will stay by his or her side during the game.  One other special rule?  Everyone wins.

And truly, with dedicated parents and coaches, everyone on Long Island does win.

Early Screening Tool Could Detect Autism by Age 1

A new approach to screening for some autism spectrum disorders may be able to detect autism by the age of 1, a great advance. Earlier detection and treatment can lead to better outcomes, as parents and teachers of children with autism know.

The Journal of Pediatrics has prepared a checklist to be used at baby’s one year checkup. The checklist can be found here.

According to the PBS Newshour, this test can be quickly filled out in the waiting room of the pediatrician’s office and is reliable more than half the time.

Light it Up Blue Kicks Off World Awareness Autism Day

I was in Home Depot this morning, shopping for light bulbs, when I noticed a rack of blue light bulbs with a prominent sign “Light it Up Blue—Autism Speaks.”

 

In an effort to raise awareness of autism, Autism Speaks is seeking to “shine a light on autism by raising awareness of autism in communities across the United States and Canada.

 

Even the Empire State Building is turning its lights blue for this event!

 

For more about this event, check out www.lightitupblue.org and participate!

Apple’s iPad Proving to be a Boon to Special Needs Families

Children with speech and communication problems are benefiting from apps designed for the iPad.

“Before she got an iPad at age two, Caleigh Gray couldn’t respond to yes-or-no questions. Now Caleigh, who has been diagnosed with cerebral palsy, uses a $190 software application that speaks the words associated with pictures she touches on the “tablet” device.”

According to the Wall Street Journal, Apple’s $599 device threatens to make obsolete specialized speech machines that can cost as much as $15,000: http://online.wsj.com/article

New Long Island Special Needs Radio Show

Monday Evenings at 6:30PM EST

Special Needs Long Island is a weekly radio program dedicated to the special needs community on Long Island.  It is a forum where the latest information involving special needs will be provided.  Featured guests are from special needs organizations, professionals practicing in the field, families and individuals with special needs. The program is hosted by Jeff Silverman, Director of Special Needs Planning for the Center for Wealth Preservation in Syosset, New York. He can be reached by e-mail at SpecialNeedsLI@gmail.com or at (516) 682-3363

Tonight’s Special Guest is Me!

Join “Special Needs Long Island,” the radio program focused on the Special Needs Community, as we interview special needs planning attorney Ellen Victor, Esq., this Monday, October 11 at 6:30 p.m!

Questions can be called into Ellen during the show at (631)888-8811.

Ellen is uniquely qualified to answer your questions, as a special needs attorney (http://www.victorlawfirm.com/), blogger (http://longislandspecialneedslawyer.com/), and mother of a special needs child.

Here’s your chance to ask your special needs question of an attorney who focuses on this area of the law — for free.

Questions like:

• Why do I need a special needs trust?

• How do I choose a trustee for my special needs trust?

•Do I still need an SNT if my child isn’t on public benefits?

So be sure to tune in at 6:30 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 simulcast on the internet at www.am1240wgbb.com

Temple Grandin–A Beautiful Mind

I may be mixing my movies about brilliantly challenged people, but “A Beautiful Mind” is a perfect description for Temple Grandin. If you watched the Emmy Awards Sunday you could not help noticing Temple Grandin, decked out in her cowboy finest.  If you wondered about all the well-deserved accolades, here is Entertainment Weekly’s review about the HBO biopic of Grandin’s life. Those of us in the autism community have long known and admired Grandin, a renowned advocate for both autism spectrum disorders and animal rights, especially cattle.

When I first learned of my daughter’s diagnosis of Asperger’s Syndrome, and began researching this disorder, I was lucky enough to find Grandin’s autobiography.  Soon I was able to breathe again, as I learned just how much someone with this disorder could accomplish.  Grandin earned her doctorate, became a university professor and single-handedly changed the way cattle are brought to the market.

This inspirational winner has been the subject of other films besides the HBO Emmy-award winning documentary.  “The Woman Who Thinks Like a Cow” can be found in its entirety on YouTube. It is worth watching to hear Grandin’s insights into autism from the first person point of view.  Grandin describes how much of what she does is as a result of anxiety and the desire to avoid problems.  This is a concise, clear explanation of why some of our loved ones act the way they do– the intense anxiety they live with daily; the inability to make a decision which might be wrong.  Grandin also discusses what it is like to live with sensory integration issues–how frustrating it is to concentrate with itchy clothing, an annoying sound, the wrong lighting.  It is inspirational to understand everything she has managed to overcome due to her autism and accommodate to achieve all her accomplishments.

Grandin explains that she believes the mind of an autistic person and an animal are very similar.  She states that the anxiety and panic attacks of an autistic person is comparable to that of an animal that is always alert for threats.

But Grandin says that she would never, given a choice, give up her autism.  In this TED interview The  World Needs All Kinds of Minds” , she discusses her belief that major technological advances coming out of Silicon Valley would not have been possible without autistic minds, that the world needs autistic minds to advance.  People with autism, she states, pay attention to details the rest of us miss; that problems with sensory integration also cause autistics to look at the world from a sensory point of view. The autistic mind is a specialist mind.

Temple Grandin, the child without a voice,  has become the voice of reason for autism.

Improving I.Q. for Autistic Toddlers

An exciting new study has shown that an intensive behavioral intervention raises the I.Q. level of toddlers diagnosed with autism spectrum disorder (ASD).  This study, reported by Pediatrics, the official journal of the American Academy of Pediatrics, compared 48 children diagnosed with ASD by placing the children in one of two controlled groups.

Early Start Denver Model (EDSM)–for Young Children with Autism

According to Pediatrics, the study assigned the children into one of two groups:

  1. ESDM intervention, which is based on developmental and applied behavioral analytic principles and delivered by trained therapists and parents for 2 years; or
  2. referral to community providers for intervention commonly available in the community.

The results showed much greater gains for the intensive EDSM intervention as opposed to the community intervention.

An Interview with the Studies’ Author

The NYTimes Health section blogged about this study recently.  Tara Parker-Pope interviewed one of the developers of this new intervention, Sally J. Rogers, a professor of psychiatry and behavioral sciences at the University of California, Davis.  Dr. Rogers describes the new intervention as playful and interactive as opposed to adult instructional and further discusses how this new method might work with an autistic child.  The full interview can be found here.

The Book

Early Start Denver Model for Young Children with Autism: Promoting Language, Learning, and Engagement became available at the end of December.  Additionally, many of the resources can be found online at  The Early Developmental Studies Lab. I can only hope that the reality lives up to the promise.


Are Schools Prepared for an Increase in Autism-Related Special Needs?

The reported rate of autism spectrum disorders (ASD) has significantly increased and is now expected to affect 1% of children ages 3 to 17, or approximately 1 in every 100 children, according to two recent major studies.  Both the Centers for Disease Control and Prevention (CDC) and a study published in the journal Pediatrics indicate that the reported rate has increased from previously reported levels of 1 in 150 persons.  Even more alarming, boys are four (4) times more likely to have ASD than girls of the same age, which means that the likelihood of having a boy with ASD is around 1 in 60, a staggering number.  The second government study conducted by the Health Resources and Services Administration used data from the 2007 National Survey of Children’s Health.

Some researchers urge caution when interpreting the new numbers, suggesting that the reported increase is due to increasing awareness of the symptoms, as opposed to an actual increase in diagnoses.  Additionally, according to the children’s parents, many of the reported cases are mild forms of the disorder. Controversial author David Kirby questions this theory at the Huffington Post.  He asks if the actual rate of autism in children has not increased, how is it possible that as adults we have not noticed that 1 in every 60 adult males we come across has some form of ASD?  Kirby adds anecdotal evidence from long-term teachers and special education administrators who cite their long years of experience in refuting the notion that reported increases in autism related disorders are merely a function of greater awareness.

As many parents and professionals know, autism and related disorders such as Asperger’s and pervasive development disorder can be a frustratingly difficult diagnosis to make as it can only be made based on behavior instead of by more objective means such as a blood testing.  These behaviors include difficulties with social interaction and communication and are often accompanied by repetitive behavior.

However, whether the increase is due to better reporting or an actual upsurge, better informed parents and doctors mean more parents demanding educational and other services.  As this population ages, there is no doubt that both the government and private sectors must be prepared for an escalation in demand for supportive housing, employment, social and financial support.

According to CNN and the Associated Press, Dr. Tom Insel, director of the National Institute of Health, stated that the federal government is increasing resources to address autism and related disorders, adding millions of dollars for autism research, screening and treatment and adds that President Barack Obama has made autism research a priority.

It is more important than ever to plan for the future of our disabled children.  We should not depend solely on government support to financially support our disabled children, whether diagnosed with an autism spectrum disorder or any other type of disability.  Just as our federal and state governments need to prepare financially for the influx of disabled children into the school and health care systems, parents need to make estate planning a priority to ensure the financial well-being of the disabled population as soon as possible.