Month: August 2012
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
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.”
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.
- How Autism Affects Siblings (everydayhealth.com)
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 change.org 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 Babble.com 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.”
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 www.scottevandavis.com.