Refrigerator Mothers or Aging Fathers?

 

Back in the 1950′s, scientists were certain that autism and schizophrenia were caused by mothers who were emotionally frigid.  Scientists coined the phrase “refrigerator mothers” to describe how the lack of warmth  by mothers affected their children.  There were even movies made about this symptom:  a PBS Point of View, the trailer which is found above.

Scientist now accept that autism is the result of genetics.  A study released by Nature highlights the link between paternal age and autism.

As the New York Times reported in August, as men age, they are more likely to father a child who develops autism or schizophrenia.

The study finds support for the argument that the surging rates of autism are partly caused by the increased average age of fathers.  It has long been known that having a baby when a woman is older increases the rate at which a child is born with Downs’ Syndrome.  Surprisingly, no correlation  has been found between the age a woman gives birth and higher rates of autism and schizophrenia.

Clearly, more research is needed.

A Very Special Place on Long Island Special Needs Radio

Tonight, November 29, 2011, Special Needs Radio is hosting Diane Buglioli, Deputy Executive Director of A Very Special Place. A Very Special Place, Inc. was established in 1974 as a not-for-profit corporation to provide services to people with developmental disabilities. A Very Special Place, Inc. provides a comprehensive network of programs and services for people with developmental disabilities and their families.

 

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 28th, 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. 

“It’s Not as Bad as it Looks”

 

Right, Judge. If it was possible to somehow put the frosting on the cake of this horrifying story about a judge caught on videotape beating his daughter, a life-long sufferer of cerebral palsy, that quote from the perpetrator did it.

 

According to the article, Texas Family Court Judge William Adams was secretly taped by his daughter in 2004, and after subsequent abuse, she finally decided to release the almost ten minute video  of her father and mother cursing and beating her with a belt.

 

Many of our children with special needs use the Internet as their lifeline to the world.  Then-16-year-old Hilary Adams’s crime was illegally downloading a video without paying for it. The resulting punishment, doled out by a judge who frequently saw the horrific results of child abuse in his courtroom is both incomprehensible and enraging.

Contrast the judge’s efforts to minimize the incident with his daughter’s love and generosity. “It is my wish that people stop threatening my father and start offering professional help. That is what he really needs,” she wrote.

 

Watching the video made me ill.  I struggled with whether I should post a link to it.  But abuse needs to be exposed, and the likelihood that special needs children, who often struggle with behavioral issues, will be abused is much higher than for other children.  And so I’ve posted it.

 

Warning: if you have a weak stomach, do not watch this video.


Broadway Roars: Autism Friendly Performance at Lion King

Broadway is becoming autism friendly!  The Theater Development Fund (TDF) has started a new program known as the Autism Theater Initiative  to make theater more accessible to children and adults on the autism spectrum and their families.

 

The Lion King has been chosen as the first ever Broadway autism-friendly play with a special performance and reduced prices for its October 2 matinee.  The show sold out quickly, but we can expect if the results are good, that it will be repeated.  You can sign up for information on future performances here.

 

According to the NY Times, some of the modifications made for this special performance include less strobe lighting and softening of the sound in some places.  Many autistic persons are sensitive to light and sound.

 

The entire theater has been bought out for this performance.  Although many Broadway productions have the ability to modify shows for hearing and sight impaired people, those modifications are made during regular performances.  According to Lisa Carling, T.D.F.’s director of accessibility programs:

 

“We wanted to create an environment that was welcoming to children and their parents so they could come in and not be afraid of judgment from other theatergoers who might not understand why a child is doing repetitive movements, or rocking back and forth, or why a child might need to wear headphones or get up in the middle of a song and take a time out in the lobby.”

 

What a wonderful idea.  Let’s hope that more shows follow, and that The Lion King has much success.

The R Word: Tracy Morgan: Oops!…I Did it Again

In the latest incident of a celebrity using the “R” word, Tracy Morgan, fresh from his apologies over making anti-gay remarks, made “jokes” about “young retarded males” during a recent comedy appearance. It was reminiscent of Jenifer Aniston’s description of herself as “retarded” on the David Letterman show.

The New York Times reported Morgan’s gaffe without condemning it, in a story titled “Comedian, Chastened, Gets Back to Laughs.”

Really, New York Times? Laughs?  The disabled community does not find Tracy Morgan any funnier than the gay community did.

 

 

 

 

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.

Special Education Success at School for Disabled

The Henry Visconti School, a New York State supported special education school that prides itself on treating its students with dignity and respect, was recently praised in the New York Times for allowing severely disabled students to succeed in school through the use of technology and on-site medical care.

According to the school website, the Henry Viscardi School is a teaching community of students, parents, teachers, staff, and volunteers dedicated to empowering students with physical disabilities and health impairments to enable them to be active, independent, self sufficient participants in society.

I’m proud to know this school exists in our neighborhood, and is a fine example of how our tax dollars are spent to help the special needs community.

Chalimony: When Divorce Meets Special Needs

As many parents of special needs kids know, raising a disabled child is much more expensive than raising typical children. I have previously discussed some of the extraordinary costs in my post on Divorce and Special Needs Children. Many states mandate that parents of a disabled child continue supporting these children, even after they are no longer minors. New York does not follow this mandate, allowing the state to support our disabled children instead. However, if the child is living with a divorced parent, then that parent often has to shoulder many of the costs — with no contribution from the other parent. After the child reaches the age of 21 in New York, there is no way to force that other parent to shoulder any of the financial burden.

An Amazing Statistic

Karen Czapanskiy, a Professor at the University of Maryland School of Law, has proposed a solution she calls “Chalimony” . She states “Parents of a child with autism, on average, have lifetime earnings of nearly a million dollars less than other parents.”

That is astounding. But it is understandable. Many of us put our careers on hold to take care of our children, to drive them to doctor and therapy appointments, to ensure they are cared for properly. Even after the children are grown, even if many of them do not need hands-on care anymore, there are years missing from career paths.

Czapanskiy suggests: “[Chalimony] would be available to the parent with whom the disabled or chronically ill child lives most of the time if that caregiver is unable to be employed full-time because of the child’s special needs. The child’s other parent could avoid paying chalimony if he or she were meeting enough of the child’s needs to permit the primary parent to work full-time.”

I would take it a step further. Any parent who has stayed home with a special needs child and missed out on the opportunity to advance a career, also deserves chalimony.

What’s in a Name? Rosa’s Law Passed

Federal statutes will no longer use the term “mental retardation” instead substituting the phrase “intellectual disability.”  President Obama officially signed into law this October a bill that has spent months wending its way through Congress.

Who is Rosa?

Rosa is a now 9-year old Maryland girl with Down’s Syndrome.  Her mother took issue with the school calling her daughter retarded.  “There hasn’t been one ounce of opposition. People had already gotten rid of the term, except in slang,” Rosa’s mother, Nina Marcellino said.

Why is the Language we use Important?

Peter V. Berns, CEO of The ARC (the battle to abolish the term “retarded” has been going on for decades, and in the 1980s families and people with developmental disabilities changed the name of Association for Retarded Citizens to ARC.) “We understand that language plays a crucial role in how people with intellectual disabilities are perceived and treated in society,” Berns said in a statement. “Changing how we talk about people with disabilities is a critical step in promoting and protecting their basic civil and human rights.”

Will New York Ever Become Politically Correct?

As I have said before, New York is one of the few states that have not yet removed the phrase “retardation” from one of the largest organizations of its kind: the Office of Mental Retardation and Developmental Disabilities (OMRDD).

It is time New York joined the Federal government and 44 other states in removing this arcane language.