Month: August 2012

Gone Fishin’

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After almost 5 months of blogging and sharing stories with you all, I’m going to be figuratively ‘out to lunch’ and take some time off to spend with the family. Please keep the awareness and activism going and I’ll see you all soon. For those who have already started the new school year, good luck. -Ed


School District Tries To Switch IEPs For Girl With Angelmans Syndrome

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Mom Says School District Changes Autistic Daughter’s IEP, Balks At Letting Service Dog Come To School

The mother of a child on the autism spectrum wants you to read this story and ask yourself why did her daughter’s school district make the changes it did.

This is the story of five year old Devyn and her service dog Hannah. Devyn has “Angelmans Syndrome” — a combination of autism and epilepsy.

Hannah rarely leaves Devyn’s side. She can alert Devyn’s mom if Devyn is about to have a seizure and just by licking her face, Hannah can interrupt the seizure and help Devyn to start breathing again. 

The handle on her harness helps Devyn walk around independently.

So Devyn needs Hannah, especially at school. But just weeks before Devyn goes into kindergarten in the Gates Chili School District there are problems. For a while, the district said the dog couldn’t come. Now they say Hannah can come to school and Devyn can get her one-on-one aid. But the district refuses to train the aid on how to handle the dog.

Devyn’s mom can’t understand it and she wants you to know about it.

“It would help me to have the community understand where we’re at right now and maybe get their support to put a little pressure on the school as to why they’re not communicating with me because there’s been a break down somewhere and I can’t really figure out why we are where we are right now,” Heather Pereira, Devyn’s mother said.

Here’s where the breakdown started

In March, Devyn had an individualized education plan, or IEP. It said Devyn would get a one-on -one aid and a service dog. (See picture above)


But in June, the same IEP made no mention of the dog or the fact that three doctors prescribed it for Devyn. (See the picture above)

So how does that happen?

Heather says she got a notice from the district in the spring asking her to sign a form to correct the IEP. If she signed it they wouldn’t have to have a meeting. She had done it before, so she signed it this time.

But, Heather says the the district told her they were only correcting “clerical errors.” There was nothing about the dog. But when she gets the revised IEP in June, all reference to the dog was gone.

The Gates-Chili School District Statement

“The District has never denied a properly documented accommodation for any student, including a service dog. Furthermore, the District has never unilaterally changed an Individual Education Plan (IEP) for any child.”

Meet Alex Olinkiewicz, Shelter Island’s Resident Authority on Asperger’s

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Island Profile: Young Author Explains Life With Asperger’s

Meet Alex Olinkiewicz. If you live on Shelter Island, you probably already know him, at least casually. But until you sit down and talk with him, you may know little of his warmth, charm, intelligence and his self-awareness about coping with Asperger’s syndrome and other peoples’ reactions to it.

The 21-year-old 2009 Shelter Island High School graduate has a subtle shyness about him that he somewhat masks with a self-deprecating sense of humor.

Many of his classmates may have left the Island for college or jobs but you’re likely to find Alex often alone at home, hunched over a computer dealing with graphics, one of the many talents this young author possesses.

He shows off his pictures and personality in his just-published book, “In My Mind — A Journey Through My Life With Asperger’s/Autism,” which he will be discussing at book signing events on and off the Island in the coming weeks.

Alex will be talking about his book and signing copies on Saturday, August 18, from 10 a.m. to noon at the Dering Harbor Inn. The following Saturday, August 25, from 10 a.m. to noon, he’ll do the same at Claudio’s in Greenport; and on September 1, he’ll be at the American Hotel in Sag Harbor from 10 a.m. to noon.

The book was written with the cooperation of Islander Dr. Richard O’Connell, a retired guidance counselor and author, who spent two years recording sessions with Alex, having them transcribed and then working with him to organize his thoughts into the book, for which Alex created the graphics.

Unlike the scholarly tomes that have been written about autism and Asperger’s syndrome, Alex’s story is very personal and it paints a vivid picture of what it’s like to be someone or have a family member who has Asperger’s.

The idea of a book started with a YouTube video Alex made when he was 16. The video got a few hundred hits and then, with promotion from YouTube, hundreds turned to thousands of views and finally more than a million.

Most online reactions to the video have been very positive, with only “a few jerks,” Alex said. “I mostly shrug them off,” while others online tend to answer those “jerks,” he said.

When he first tried to record his thoughts by talking into a tape recorder, it didn’t work, Alex said. That’s when he and Dr. O’Connell decided to record conversations as a means of drawing out Alex’s story.

“Realizing that people like me go through a lot of hell because we’re misunderstood, you have to wonder if there were a cure, would I take the antidote,” Alex says in the video. “The answer is no! I do not want to get rid of what makes me who I am. I don’t feel fully disabled. I will admit that I am sometimes disabled.

It’s what makes me different from everybody else. Why should I always want to be like everybody else?”

Still, when he’s angry, he admitted,   “I sometimes blame my disorder.” But generally, he said he thinks life might be “boring” without Asperger’s.

He does wish that society understood some of his needs. Just as people who can’t walk use wheelchairs and those who are blind have Braille, canes and guide dogs, he feels there should be at least something — if only an understanding in the culture of what his condition is all about — that would help him to cope.

Just knowing other people aren’t put off by what might seem peculiar or off-putting about his behavior would be a big help.

In today’s world, everyone sometimes experiences a sense of information overload. For someone with Asperger’s, that feeling is profoundly deepened. The world can seem a chaotic jumble to the Asperger’s patient because he or she is often overwhelmed by stimuli.

One way to cope with it all is to shut down. To the observer, someone with Asperger’s may appear to have flicked a switch that simply turns off the input, Alex said.

Alex sometimes hits his own hand to give himself focus on something other than all the outside stimuli. In particularly difficult situations, he’ll look down and refuse to acknowledge anything around him, he said.

He points to the part Dustin Hoffman played in the film “Rainman” about an autistic man. The actor would tap his head when he felt assaulted by sights and sounds around him.

Exactly how Asperger’s syndrome manifests itself will vary from person to person on the autism spectrum, Alex said. He explained his views using a pie chart: All human beings have various abilities that make up the pie. But a person who isn’t autistic has perhaps 15 percent of his pie devoted to social skills while someone who is autistic may have a only 3 or 4 percent of his pie dedicated to social skills.

“I’m very, very social, which is very unusual for people with Asperger’s,” Alex said. Still, he weighs his social skills at about a 12 compared with someone without Asperger’s who is likely to be a 15.

That social component results in an Asperger’s person sometimes being unable to understand others’ meanings, he said. But it has nothing to do with intelligence, a fact he demonstrates with his own conversation and other abilities.

He remembers when he was about 6 his parents were told he should be tested. After a battery of tests, his parents and doctors never used the words “autistic” or “Asperger’s” with him.

“They told me, ’Your mind works differently than others,’” he said. It was later at school that he heard the word “Asperger’s” applied to him and began to understand how it made his learning difficult.

“They tried their best to help me out,” he said about his teachers. He particularly credits teacher Robin Anderson, who worked with him throughout his schooling. “She became one of my first and closest friends,” he said. She helped him to improve his social skills and assisted with homework, he said. In many ways, Ms. Anderson paved the way for a less isolated experience at school than he would otherwise have had, he said.

Still, “School felt like a prison,” he said. But the last few years without school have been isolating, he added. It’s part of what led to the book because it gave him a goal, something on which he could focus.

Poetry Through A Sibling’s Eyes

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Poet and writer Faith Jegede draws on her experiences growing up with two autistic brothers in order to spread awareness and understanding about this increasingly common diagnosis.;TEDLondon

Look In The Mirror

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Have A Heart

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A heart is needed at the Hospital of the University of Pennsylvania.  Yes, donor hearts are always needed and welcomed, however the heart needed is for those on the transplant board who literally make life and death decisions.  The heart needed is for those board members to provide compassion and courage.  The heart is a vital reminder of the relative frailty of the human body; without it, life ends.  A patient may be comatose for decades, but lives as long as the heart survives. 
One out of every 88 children is affected by autism, and this rate is certain to rise in the years to come, due mainly to better screening at earlier ages.  It is safe to hypothesize that the rate was always this high, even in decades past simply because many were misdiagnosed or not diagnosed at all, but are still out in every community.  For those who did receive a diagnosis like Paul Corby and his family, who by all accounts have done an admirable job in raising and transitioning him to adulthood, shouldn’t they have an expectation to receive the same advancements in medical care that neurotypical adults get? 
Many hospitals have their own exclusionary criteria for heart transplant recipients, while many like the University of Maryland Medical Center (UMMC) do not and develop their own, based on guideline set by the International Society For Heart and Lung Transplantation.  It seems, based on a brief overview that the Hospital of the University of Pennsylvania has conveniently lumped Autism Spectrum Disorders with Mental Retardation and Dementia in order to exclude Paul Corby from obtaining a heart transplant. 
Knowing that transplant decisions ultimately hinge upon deciding the question of who is most likely to benefit, why wouldn’t Paul Corby be a fitting candidate? He meets all the inclusion criteria, and has the social network of family and friends in place to adhere to the four areas of psychosocial concern: compliance, comprehension, quality of life and social evaluation. 
Back to my point about the autism rate: it is inevitable that as persons with Autism grow older, they will develop the same medical problems that plague ‘the rest of us’, and will need the same medicines, technologies, and compassion that we all do.  Putting off life-saving decisions that are thinly veiled as ‘sorta, kinda, maybe’ fitting an exclusion criteria will only serve to further isolate Autistics from society, and will not make that inevitable wave from going away.
Have a heart, University of Pennsylvania; do the right thing and save a life.  You owe it to society to get this right.-Ed
Paul Corby, 23, (front, left) with family, was rejected for a heart transplant. His mother, Karen Corby (front right), is protesting.
Paul Corby, 23, (front, left) with family, was rejected for a heart transplant. His mother, Karen Corby (front right), is protesting.

Twenty-three-year-old Paul Corby has a bad heart and a flawed mind.

The question before doctors now is whether his mental problems – he has a form of autism – are severe enough to make him a bad candidate for a heart transplant.

Doctors at the Hospital of the University of Pennsylvania have said they are, according to Paul’s mother, Karen. She disagrees and is using an online petition and the support of a network of autism advocates to make her case. Karen Corby says she was “stunned” by Penn’s decision, then inspired by another family’s successful fight with Children’s Hospital of Philadelphia over a similar decision.

“I guess they thought we would accept it and just wait for the inevitable,” said Corby, of Pottsville. She said she has not been told how long her son, who has a heart condition called left ventricular noncompaction, might live without a transplant.

Paul Corby initially took the decision well, but has since grown so depressed that his mother worries about how he’d react to another rejection.

“At first he was OK with it because he thought, ‘At least I don’t have to go through that surgery,’ ” his mother said, “and then he thought, ‘Why not? Why don’t they like me?’ ”

Paul Corby’s situation is a window into the complex decisions that patients and doctors face when vital organs begin to fail. Organ transplantation is one of the few areas of modern medicine with overt and unavoidable rationing. There simply are not enough donated organs to go around, so doctors must make life-and-death choices. Nationally, 331 people died while waiting for heart transplants last year.

Karen Corby released a letter she received from Penn cardiologist Susan Brozena in June 2011. In it, Brozena said that she recommended against Paul Corby’s getting a transplant “given his psychiatric issues, autism, the complexity of the process, multiple procedures and the unknown and unpredictable effect of steroids on behavior.”

Corby said her son – who is diagnosed with Pervasive Developmental Disorder Not Otherwise Specified – is high functioning and spends his days playing video games and writing the sequel to his pre-teen, self-published novel, Isaac the Runner. He carried his ever-present Princess Peach doll with him to his transplant evaluation. He takes medicine for an unspecified mood disorder, his mother said. He has shouted loudly enough that police have been called “three or four times” to the family’s home.

Citing privacy rules, the Penn health system said it could not comment on Paul Corby’s case. It released a written statement that said the transplant program reviews “all aspects” of a patient’s condition, including his health status and post-transplant prognosis, and other health problems that could affect transplant success along with the interaction of drugs he takes and those he’ll need after the transplant.

“Our criteria for listing an individual for transplant are regularly reviewed in comparison with national standards, but we always encourage patients to seek another opinion.”

After Karen Corby said she was willing to give permission for Penn to discuss her son’s case, health system spokeswoman Susan Phillips said that “the physicians involved believe that any discussion of the specifics of his case would be most unkind to him and therefore will not comment.”

Phillips said Penn’s transplant team has performed at least one other heart transplant in an individual with autism.

Thirty-eight percent of patients evaluated for heart transplants during the last two years there were told no, mostly because of other medical conditions that would affect their survival or quality of life after a transplant, Phillips said.

Karen Corby decided to start a petition on the website after reading in January about 3-year-old Amelia Rivera, who was denied a kidney transplant at Children’s because she was “mentally retarded.” Her family’s petition led to an outpouring of support. The hospital apologized and Rivera’s family now says she has been cleared for transplant.

Corby’s petition drew only about 4,000 signatures until Joslyn Gray, a freelance writer from Drexel Hill who has two children with Asperger’s disorder, also part of the autism spectrum, wrote about Paul on the website last week. The count had climbed to about 10,700 Monday.

Gray sees an issue that can only get bigger as more children with autism get older.

While autism was just one of the reasons listed for denying Paul Corby a transplant, Gray said she was “extremely disturbed that autism in and of itself was listed as an exclusionary factor.”

With help from other parents, Karen Corby has now contacted the Mayo Clinic and two hospitals in Pittsburgh about putting Paul on their lists.

Transplant patients often face a difficult recovery and are on a complex drug regimen for the rest of their lives. The experience of being rescued from death by someone else’s death is challenging emotionally even for people who go into the experience with superior social skills.

Robert Weinrieb, a psychiatrist who specializes in working with transplant patients at the Hospital of the University of Pennsylvania, said patients were rarely turned down for psychosocial reasons. People who are actively addicted to drugs or alcohol are excluded. In cases of serious psychiatric or cognitive problems, doctors want to know that patients have enough support from family members to manage their medications. Doctors don’t want to have to sedate patients to perform minor procedures. To make the best use of organs, patients must be willing participants in rehabilitation.

Weinrieb, who has not met Paul Corby, said the social skills deficiencies common in autism can be a problem if patients need a long hospitalization.

Steroids, which are given in high doses after transplants, greatly magnify emotions. Weinrieb likened it to drinking 20 to 30 cups of coffee. Someone who already has trouble with anger or impulsiveness is “virtually guaranteed” to get worse on the drug, he said.

Daniel L. Coury, professor of pediatrics and psychiatry at Ohio State University and medical director for the Autism Speaks Autism Treatment Network, said it’s hard to predict who will have a hard time with steroids.

People with autism have trouble with verbal and nonverbal communication and with transitions. They often have limited interests, Coury said. Those characteristics can make them challenging patients, but there are ways to help them through difficult medical procedures. He said he had not heard anything about Corby that would disqualify him from a transplant. “To deny him outright doesn’t sound quite appropriate to me,” he said.

Karen Corby said her son is already on 19 medications, most for his heart condition. Although he always has someone with him, he takes the medicines by himself. He struggles with anxiety and has night terrors. He’s a loner. He has not been diagnosed with specific mood disorder, she said, but takes a mood stabilizer. He’s been more depressed and upset since Penn said no.

His heart problems make him breathless when he climbs stairs. He has to sleep practically sitting up. His father died of a stroke at 27 – Corby doesn’t know if he had the same heart problem – and she fears for Paul.

He spends a lot of time working on his second book. The first was about a group of kids on a quest. It’s not great literature, but it reveals an active mind. In the third chapter, the hero Isaac tells his mother he’s embarking on a quest. “Do you mind if I go out for adventure?” he asks. “Rick’s candy has been stolen from an evil ogre robot Chris Jerky.”

During a visit last week, Paul answered questions with short, simple sentences, mostly averting his eyes. He is a pudgy young man with freckles and an auburn beard. There was no hint of emotion in his face even when he described strong feelings.

He said he worries about going out sometimes. “I feel like I might get nervous, and I might act out in public.” Asked how he acts out, he said, “I push people. I break things.” His mother said medication helps with that.

Autism, he said, has made him creative. He still feels “desperate” for a transplant. He’s tired of being tired all the time and he’s not scared of the surgery or a long stay in the hospital.

“I don’t care how long I’m in there,” Paul Corby said. “I just want my life to be saved. That’s all.”

A “Powerful Day” For Autistic Students

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If You’re Willing To Work For It, Anything Is Possible

This is a blog post by Scott Evan Davis, a composer/lyricist based in NYC. Besides writing for the theatre and cabaret community, he also spends his time teaching musical theatre to children.

Six months ago, I had the privilege and honor of being hired by Arts Connection, (a company that hires teaching artists to work within schools to create the arts) for a very unique task. The students at Spectrum School, at PS 94M, (a program for children with autism), had spent the past few years working on Broadway Junior Shows created by Musical Theatre International (MTI). The Spectrum School, however, had something different in mind for this year.

The students expressed a desire to write and perform their own musical this year. Their teacher, Tessa Derfner, and principal, Ronnie Shuster, followed through in the most outstanding way. They contacted Arts Connection, and together figured out a way to make this daunting task happen. Freddie Gershon, founder of MTI, provided the funding, and I was hired to help guide the students musically and lyrically, and to create an original musical to be performed by the end of the school year.

From day 1, one thing was clear: The students wanted the world to know what dealing with autism was like on a daily basis. They wanted the musical to take place in a school, on an ordinary day, under extraordinary circumstances. They wanted to explore the idea that one day, after being beaten down by bullies, they each received a superpower which they could use to save the school from bullies. What they really wanted to do was teach the bullies the RIGHT way to behave. Not with revenge but with understanding. This was the heart of the story. We decided to call the musical “Powerful Day”.

This needed to be THEIR musical, and for that, THEY had to come up with the ideas and words that would be made into songs. Watching them come to life while they were singing never ceased to amaze me. There were students who were extremely shy who I watched become completely present while singing a song. There were also jobs behind the scenes that were just as essential to the process. We wrote about seven songs, completed the script, filmed videos, and rehearsed like professionals. Their energy and dedication was unyielding.

By the end of the process, we all knew that we had something special. Freddie Gershon and his wife Myrna, along with some representatives from MTI, came to watch one of the final rehearsals. Much to our surprise and awe, they brought Broadway composer and musical theatre icon Stephen Sondheim along to watch as well! Each of the 5 performances was better than the last. The students were asked for the first time ever to sing at the graduation ceremony that month. The school, teachers and I were awarded the MTI COURAGE IN THEATRE AWARDS for 2012, and afterwards we were all treated to a Broadway show.

I truly believe it was some of the most personal, and connected music that I will ever have the good fortune to write. The message was, “If you want something, and are willing to work for it, ANYTHING is possible, no matter who you are, or what challenges you have”. To be able to give each of them a voice, and to truly listen to them, was something very special for me. The love, support and encouragement from their teachers was just as important to the process as the dreams the students had to create their own piece of theatre. Thank you PS 94M for your courage and dedication. This experience for me was the essence of what theatre should be.

To learn more about Scott, visit