By VAL OLIVAS, Four Points News
Native Icelanders Thor Gudbrandsson, his wife Margret Ericsdottir and their three sons moved to the states permanently four years ago and have called Steiner Ranch home for a year.
Margret and Thor’s youngest son, Keli Thorsteinsson, was born with autism, and was initially misdiagnosed as mentally retarded due to the lack of information about autism in Iceland.
At ten years of age, Keli, who had been non-verbal since he was born, began communicating with others by pointing to a letterboard to form his words. His first words to his parents were, “I am real.”
“It was like a knife to the heart,” Margret said. “I was so happy to be communicating with him for the first time, but was miserable because I felt like a failure as a mother having spoken about him instead of to him all of these years. I’ve guessed wrong for him often during his life. His favorite food isn’t McDonald’s as I believed, it’s sushi — Cho Sushi, in fact! His favorite color isn’t blue, it’s red. He wants to attend [the University of California,] Berkeley!” This ability to communicate unveiled a highly intelligent and capable boy inside despite his physical obstacles.
Margret set out to create a small-scaled documentary to raise awareness and educate Icelanders about autism. Academy Award-winning actress Kate Winslet was introduced to the film by Dorrit Mousaieff, First Lady of Iceland. Winslet narrated the film which had, by then, grown into a larger project. A former finance executive, Margret fundraised $1.5 million herself for the film.
Together, Winslet and Margret decided to create a foundation with the purpose of creating awareness of the intellectual capabilities for people with autism.
As told by the foundation: One night, Keli wrote a poem on his letterboard about a magical golden hat (see below). Without knowledge of Keli’s inspiring poem, Winslet, on the very same night, thought of an idea that involved a hat as well.
To raise money, she would pass her favorite hat and an old camera around to 100 A-list celebrities including Leonardo DiCaprio, Oprah Winfrey, and Justin Timberlake. All were asked to take a self-portrait wearing the hat and provide a quote sharing what they would say if they had never spoken before, but were finally given the chance, states the foundation. The result was a book titled “The Golden Hat, Talking Back to Autism.”
In the book, Winslet said, “I entered a new world of families with children who have autism, where the challenges they face daily are profound and overwhelming. I simply couldn’t conceive of how devastating it would be not to be able to hear my children’s voices. Not to be able to communicate with them, to hear them learn, grow, and express themselves verbally.”
Also in the book are pieces of Keli’s poetry, expressions of more people with autism sharing their inspiring first words, and Kate’s intimate emails with Margret as they journeyed together to form the Golden Hat Foundation.
The foundation’s mission is changing the way people with autism are perceived by shining a light on their abilities and emphasizing their potential. With proper education and career training, these individuals can be contributing citizens and a value to society, GHF states.
One GHF goal includes building living campuses, establishing a supportive and respectful environment where those with autism receive help with communication, academics, career training, and recreational opportunities — tailored to their individual needs.
Some may live on campus, others may visit daily as they would a school. Some may work on campus, others in a movie theater or downtown.
The GHF doesn’t fund research for causes.
“We want to focus on those already born with autism, especially with the growing prevalence of the condition. While money for autism is coming in, it’s not keeping pace with the growth rate of (autism diagnoses),” Margret notes.
Thor and Margret speak highly of Leander ISD’s awareness and accommodation for Keli’s needs and many more students like him.
“We met with Vandegrift High School administrators and the head of the Special Education Program. After that meeting, there was never a shadow of a doubt that we would have to move here. Other parents have also paved the way before us with similar situations. Our son was exceptionally well-received by both staff and students. And because he’s able to communicate, he’s experiencing a fully mainstreamed educational status at VHS,” Thor said.
“Before we die, we need to pave the way for Keli. Who takes care of him when we’re gone? These kids have something to contribute. They should all be given a chance for meaningful life and supported as much as possible.”
Winslet and Keli’s family hope to build the first autism-focused living campus in the Greater Austin area.
“The Golden Hat”
by Keli Thorsteinsson (written at the age of 12)
This boy had a golden hat.
The hat was magical. It could talk.
The boy did not have any voice. He had autism.
His hat was always with him.
His hat was lost one day.
Now he had no way of telling them his stories.
His mom and dad became sad.
They taught him spelling on a letterboard.
It was hard.