New York State wants to save money for its taxpayers. A laudable desire, but not at the expense of its most vulnerable citizens.
In an Op-Ed for the New York Daily News, Dr. Mitchell Shear and Marcia Shear write about their daughter Samantha, a student at JRC. Her progress from a “bloodied and bruised 80-pound girl once forced to wear arm splints, a neck brace, and helmet” to a happy, smiling, and sunny young woman, is credited by the Shears to the success of Sammy’s program at JRC.
But now the state’s Office for People With Developmental Disabilities has decided people like Samantha Shear who are served at out-of-state facilities must be returned to New York. They claim this will save the state money, but this decision doesn’t take into consideration the needs of the severely disabled person herself.
Read more about the Shears’ struggle to keep Samantha at JRC in the environment that serves her well.
The summer of 1981 was extremely sultry. It was so oppressive, outside activities for the students were cancelled much of the time.
The small school building was located in Providence, RI. It housed five or so classrooms with only six students assigned to each one. There were just four group homes in nearby Massachusetts at the time and one that was recently acquired but had not yet opened.
When first admitted to JRC, this little girl had many self-injurious behaviors, including continually slapping her head and pulling her hair out.
That summer there was a waiting list of students who needed the services that only our small school could and would provide, as we accepted children and young adults who had been rejected from as many as five to ten schools due to the severity of their behavior. Parents anxiously waited for an opening, so that their children could be educated without medication. Many had to wait until that fifth house was ready.
One young couple had a little 10-year-old girl who would pull her hair continuously, even pulling it out completely, and slap and bang her head. They arranged to visit and and drove from New York to Providence. Right away they knew that this was the school for their small daughter.
Today that little girl is a lovely young woman who is able to enjoy life, including outings with staff members.
However, in their case, the little girl could not be admitted until their state Department of Education approved the placement. During that long, hot wait, the little girl’s parents would call to inquire about the progress in the state approval. They could only keep her safe by putting her in the family pool as much as possible, they said.
July and August came and went. Finally, they received the approval! Their daughter was admitted September 1, 1981.
Today, this little girl has grown into a lovely young lady who has significantly reduced her self-injurious behaviors through consistent behavioral programming. JRC is still her home, where she enjoys her days with friends and favorite staff members.
I saw this survey on the Autism Speaks website and started wondering: what do those who have been diagnosed with Asperger’s Disorder think about the DSM-V’s new label of Social Communication Disorder? Their disorder no longer exists by the name they have come to know.
Many of the individuals that I have known diagnosed with Asperger’s Disorder found it very helpful to have the label to explain their difficulties in life. These individuals had previously experienced years of being misdiagnosed with labels such as Bipolar Disorder, Generalized Anxiety Disorder, Post Traumatic Stress Disorder, Intermittent Explosive Disorder, Attention Deficit Hyperactivity Disorder, and various Learning Disabilities. They have been given medications for these disorders only to find the medications did nothing but give them a host of side effects.
Once they were given a label that seemed to fit, they felt a sense of relief, and perhaps have even been calling themselves “Aspie” which has a sort of cute connotation to it. There have been some very fun postings online about diagnosing famous inventors, artists, musicians, and scientists as “Aspies,” and it may help people diagnosed with Asperger’s feel they can be capable of anything they put their mind to.
My bet is that they have become a bit attached to the label, but it would be interesting to do a study to see what they actually think. Anyone up for it? Leave a comment here!
April is Autism Awareness Month, and Major League Baseball is partnering with Autism Speaks in order to raise awareness and support. Part of the proceeds from ticket sales will go toward Autism Speaks’ efforts to increase awareness, fund innovative autism research and family services, and advocate for the needs of individuals with autism and their families.
Many of the MLB Autism Awareness games will provide special opportunities and a safe, friendly environment for families and individuals affected by autism, allowing them to experience a game like never before.
Boy giving the “play ball!” command at a Red Sox game. Image courtesy of AutismSpeaks.orgWorking with Autism Speaks or other autism awareness organizations, many clubs will recognize local families during pregame ceremonies. Additionally, in select ballparks, members of the autism community can enjoy the game from designated “Quiet Zones” with a sensory-friendly environment, as well as participate in various traditional baseball activities, including throwing out the first pitch, singing the national anthem, announcing “Play Ball!”, singing “Take Me Out to the Ballgame”, and performing “God Bless America.”
This year, Autism Speaks created a Guide to the Game, a visual story to help prepare children and adults with autism for a day at the ballpark by walking them through the full experience in detail ahead of time. The special accommodations enable many families affected by autism to attend their first MLB game.
