Monday, March 5, 2012

"Unlocking Intelligence" One Voice at a Time

Over the last few years, I've read many stories of hope, love and dedication.   Stories about parents who have persevered and children defying the odds.  But last month, I was invited to a luncheon at the Ladies Home Journal office and heard an especially inspiring story.  A story about a mother, her nonverbal autistic son and a celebrity.

The luncheon was like a who's who of Special Needs writers.  And to be sitting at the same table with writers that have helped me through this journey, was truly an honor.  We were all invited to celebrate the March issue of Ladies Home Journal featuring Kate Winslet. In the article, Kate discusses her new book The Golden Hat: Talking Back To Autism  All proceeds from the book will go to The Golden Hat Foundation.

Me & Jean of

Kate Winslet wasn't at the luncheon, but Margret Ericsdotter was.  Margret's husband, Fridrik Thor Fridriksson, filmed the documentary "A Mother's Courage: Talking Back to Autism.(trailer below - I dare you not to cry) The documentary features their non verbal autistic son, Keli, as well as "scientists in the field of autism and autism therapies and the parents of autistic children who share [Margret's] passion: to break down the wall between the children and the surrounding world."  Kate Winslet narrates the film. 

And it was Keli, who inspired Kate to start the The Golden Hat Foundation and write the book.

How Kate and Margret came to meet?  It's the kind of thing that happens in a movie; the kind of meeting that will change the lives of millions. And hearing Margret tell that story - I knew that their relationship went beyond Kate writing a check or lending her name; a beautiful friendship had developed.  The Golden Hat: Talking Back To Autism goes into detail of their meeting.  

My favorite part was when Margret talked about one of her first phone conversations with Kate.  Kate asked to speak to Keli.  Margret, caught off guard by the request, gently reminded Kate that Keli was nonverbal.  However, Kate remembered and she said, "I'll talk, he can listen."  (Hearing this, made me reach for my napkin to dry my eyes.)  

I won't say anything more about the book, I'd hate to spoil it.      

But I will tell you this.  The book is filled with celebrity self-portraits and quotes.  Kate asked her friends to put on her old Trilby hat, imagine them to think of all the individuals living with nonverbal autism and asked they share something that was important to them.  The quotes range from hilarious to poignant.

My favorite quote isn't necessarily from a celebrity.  It's from Don Shestack, a young nonverbal autistic man.  Don is nineteen and started communicating at nine years old.  When his mother  asked what he had "been doing all these years?" Don simply answered, "Listening."

That is what I imagine The Boy doing.  Even when he's not looking me in the eye.  Even when he doesn't answer.  Even when he can't answer.  Even when he's stuck in a stim.  I imagine him listening, absorbing the information and processing it in his own way, at his own pace.  (One day, I expect all those answers to come pouring out.)

We all know that saying - "Children should be seen and not heard.So often, children/adults who are non verbal are considered "low functioning." Too often are they grossly underestimated and ignored.  The Golden Hat Foundation believes that non verbal autistics can be valuable members of society, if provided with the proper tools and support system. 

Once Keli started communicating at 10 years old, Margret realized that was intelligent and creative.  The name of the Foundation is based on a poem Keli wrote.   Keli's unique voice had been unlocked it the moment he picked up a  letter board.  And now, Margret and Kate are working to unlock others. 

We got to see a clip of the Margret and Kate interacting with some of the young men (including Keli) and women.  They communicated through a letter board, spelling out their words - pointing from letter to letter.  It was amazing to watch.  Even though they were nonverbal, even without much eye contact they were quick, witty and charming.       

What I respect most about The Golden Hat Foundation is that it doesn't support autism research.  It doesn't matter what causes or cures autism.  They care about improving the quality of life for nonverbal Autistic individuals.  Providing a secure living/work environment.   Creating a community where will people will always listen even if you cannot say a word.

Monday, April 2, 2012 is World Autism Awareness Day - Margret and Keli will make an appearance at the United Nations.  Margret will discuss the book and after she and Keli will be signing (Keli has difficulty writing but he will be stamping his name.) For event details click HERE.

The book will be released on March 27th but can be pre ordered by clicking  HERE. 

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AutismWonderland - written by Lisa Quinones-Fontanez - is a personal blog chronicling a NYC family's journey with autism, while also sharing local resources for children/families with special needs.