An Interview with Jon Singer: The Special Needs Parent Handbook

Apr 10, 2012 by

Michael F. Shaughnessy –

  1. I understand that you have recently written a book about your daughter who has an extremely rare autism spectrum disorder. Can you first tell us about the book, and then about your daughter who has this “extremely rare autism spectrum disorder “?

The book is not about our daughter – it is about the lessons learned from raising a child with significant special needs.

I wrote The Special Needs Parent Handbook to provide practical advice for any parent of a child with special needs, for caregivers of children with mild learning disorders to those with severe cases of autism, cerebral palsy or other disabilities.

All proceeds from sales of The Special Needs Parent Handbook support our advocacy initiatives to help parents become stronger advocates for their children with special needs. We support organizations that provide advocacy services and have donated copies of a special edition of the book to hundreds of libraries to help expand access to the book to families unable to afford one.

Rebecca has a rare genetic based autism disorder called Phelan-McDermid Syndrome. There are only 700 individuals affected by this condition worldwide. She is participating in a groundbreaking clinical trial that has just begun at Seaver Autism Center at Mount Sinai Hospital in New York City.

Mice, whose cells were genetically altered to simulate an extremely rare disorder, were given a growth hormone – within two weeks their cells returned to normal! What works with mice doesn’t necessarily translate to humans (9 cancers cured in mice have yet to be cured in people) but it’s exciting to know that there is hope for our daughter, for the 700+ other individuals affected by Phelan-McDermid Syndrome.

Learn more about the trial and about Driven, my new book project, at www.DrivenStory.com.

  1. When was she first diagnosed and how difficult was it to procure the diagnosis?

Rebecca was diagnosed when she was one after we decided we wanted to have another child. It was just a matter of having genetic testing.

  1. What obstacles have you and your family faced since Rebecca’s diagnosis fourteen years ago?

We fought to have her included in a local JCC camp program for children with special needs.

We fought to start a new school for children with autism called REED Academy.

We fought to have our town fund appropriate services.

Most recently we fought to get her back into a very exciting clinical trial after she was rejected – read Miracle on 99th Street on DrivenStory.com for all of the dramatic details.

  1. How supportive have the schools been ?

Our town has generally been very supportive in funding the school we helped to establish.

  1. In your mind, has she been receiving a “free appropriate education”?

Yes, because we started a school to make that happen.

  1. Have you ever considered homeschooling your child?

No, never! She needs to get out of the house especially so my wife can have some peace. And the school we helped open is amazing. All one-on-one – unbelievable teaching staff and leaders.

  1. How is she functioning now?

She needs a great deal of help with everything but is constantly making slow and steady progress. In 1997, a very insensitive doctor (Doctor W.) said “if you have any hopes of her having similar intelligence to either of you, it is doubtful, and she may never walk.” Today, with some assistance, Rebecca roller blades, skis, can ride a horse and a bicycle, and sometimes breaks out into a little jog.

  1. I understand that in order to finance your book, you have started a campaign on Kickstarter, an online funding platform for creative projects. How did this come about?

After prevailing with getting Rebecca reinstated in the clinical trial at Mount Sinai, I realized I have been overcoming obstacles against all odds for years – for Rebecca, in business, and in every aspect of my life – even going all the way to the top at Dairy Queen during a long car ride with my son to Disney World to teach him about customer service after a poorly trained manager wouldn’t let him have M&Ms on the side with his Blizzard at Dairy Queen.

  1. Where can readers find more information?

www.DrivenStory.com

What about your wife’s book?

That’s called Driven Crazy.

Thanks.

Jon

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