Kate shares how she became emotionally invested in the
family:
Through working on the
film, I entered a new world of families with children who have autism, where
the challenges they face daily are profound and overwhelming. The look on Keli’s
face when he typed his first words to me touched me as a mother, and as a human
being. I witnessed Margret discover her son after years of silence. As a mother
of two very verbal, expressive, affectionate children, it wasn’t enough to
provide this narration alone and to simply walk away.
Taking inspiration from Keli’s new ability to communicate
and a poem he wrote about a magical Golden Hat. The hat that Keli described
could help a boy without a voice to talk. Kate decided to send around one of
her old hats and ask celebrities to take their self-portrait. She asked that those who took a photograph
while wearing the hat would think about those individuals with nonverbal autism
and then express something important to them.
Margret begins her story with the following:
Imagine waking up in
your bed, just as you are now, with all your mental capacity and intelligence.
In your mind, you know that everything is the way it is supposed to be…except
one thing. Your senses are all mixed up. You cannot see and hear at the same
time. You only get a fragmented view of your environment. You have little sense
of where your body is. You cannot speak. You have no voice.
Margret had been told that her son, Keli, only had the
capacity of a 2-year old. This obviously tempered the way she treated him. It
was incredible to read about how everything she thought she knew about her son
was actually incorrect, like when she learned his favorite authors were Twain
and Tolkien and not Teletubbies. I can hardly imagine how she must have felt
when she realized so many new things about her son. Particularly heartbreaking
was her description of some medical issues her son went through. A child
without speech is exceedingly difficult to diagnose!
The more I read, the more I wanted to learn about her son’s
story. In fact, I added her documentary to my Netflix queue. I can’t wait to
watch it! I am interested to see how Keli progressed from nonverbal to
communicating through the RPM (rapid prompting method) via HALO in Austin,
Texas. I actually know a local family who utilized RPM and HALO and I can’t wait
to learn more about it and about Keli’s journey into communication.
I love how Margret ends her chapter:
Now imagine going to
bed. Everything is as it is supposed to be, except one thing. Your senses are
all mixed up. You sense your surroundings in a fragmented way. But you are
assured. You know that you are among people who care for you. People who are willing
to fight for you and do their best to lend you a voice. You close your eyes,
knowing that when you wake up the next morning, you have the means to
communicate your desires, wants, and feelings.
Now that’s something
to be grateful for.
For me, The Golden
Hat: Talking Back to Autism was well worth the read even if I hadn’t seen
the pictures and quotes from the various celebrities. I was enthralled by the
stories from Margret and Kate, and it was really interesting to read the
various emails that went back and forth between them as the book idea and The Golden Hat Foundation came into existence. I love the genuine spirit between
these women and know they have forged a friendship to be cherished.
I especially love that all of the proceeds from the book
will benefit The Golden Hat Foundation,
which seeks to build innovative living campuses for people with autism.
The celebrity photos and quotes are just icing on the cake.
The sheer number of famous people who participated in Kate’s book project is
pleasantly surprising. The book gives the feel of a more substantial coffee
table book, with full color photography (albeit candid self-portraits taken with
a point and shoot camera). Some celebrities really took the project’s intent to
heart as they provided their quote. Others? Not so much. But, the result is an
eclectic mix of perspective that is fun to read through.
Some of the most touching quotes are from individuals on the
autism spectrum who are nonverbal. At the age of 14, Keli communicated, “I am real.”
In response to the question, “What have you been doing all these years?”, 19-year old Dov said, “Listening.”
The Golden Hat:
Talking Back to Autism is a book that I consider a conversation starter. If
we have not been personally touched by a nonverbal child with autism, this book
will serve as a great place to begin thinking and talking about it. And, it’s
obviously fun to see some of your favorite celebs in personal moments (not
airbrushed and perfectly coiffed).
Bravo to Kate Winslet for getting involved and trying to
make a difference in the autism community, and kudos to Margret and Keli for
serving as inspiration to other nonverbal autism families out there.
Disclaimer: Simon & Schuster, publisher of The Golden Hat, provided me with a copy
of the book at no charge in exchange for my opinion and review.
Now, here’s where it gets exciting…
Since the copy I received will be donated to my nonprofit's lending library, Simon & Schuster agreed to send me another book to give away to one of
my readers! Isn't that great?
You have an opportunity to win a copy of The Golden Hat! To enter, please follow the instructions below.
a Rafflecopter giveaway
