A few days ago I posted the video of the story of Carly, an amazing teenage girl with non-verbal autism. It must have looked a bit out-of-the-blue on the Singlestream! But I have a story to share.
There is no expertise behind me. I have no understanding beyond what you yourself have access to on the internet and in the book stores. What I write on the subject is not based on any interaction I have had with an autistic person. It is simply a tug that has taken hold of my heart, a human story that stirs me, and a dialogue I feel led to become a part of.
I once sat through a presentation by a pediatrician. He was very passionately entreating the audience, and those representing health insurance companies in particular, to learn about autism, to seek out the facts and get to understand the illness, and to find a way to help the parents of autistic children to care for their children. It was acknowledged that care for autism is not covered by many health insurance companies even now and even where it is covered the parent is faced with disqualifying features. For example, speech therapy is limited to speech lost in some health insurance plans, occupational therapy may be covered up to six visits a year, and care for anything to do with autism falls into the mental health category which may or may not be covered by others at all. He encouraged a deeper look at what we as a community could do for those with autism – there isn’t enough money to pick up where insurance leaves off, there is not a lot of focus on autism by charity works and public education because it isn’t a life threatening disease in the same was as say cystic fibrosis, and there is very little understanding around the full spectrum of autism.
It stayed with me, this lecture. It has been at least two years, and I still see the man’s passion, the frustration with some of the questions (oh my goodness I myself got frustrated when one woman said she didn’t believe autism exists and that parents just need to learn to love and discipline their children!). I remember being struck by the invitation he made to consider a different life – what if I were me, completely and precisely me inside, and yet was completely unable to communicate to my family? What if I were unable to hold my bowels or point to where it hurts when I’m injured? What if I was fully aware of all of this, stunningly intelligent (as I sometimes think I already am) and held back by a body that would not obey my commands? Then he invited us to understand the parents. What if you have no way of reaching your child, have no resources to pay for full-time care, and receive no assistance from the government, the health insurance company, the medical providers and other social institutions? Marriages have ended and livelihoods lost to care for autistic children. But this is your child. And you love them completely. You will do whatever it takes for them. But do you?
And then a few weeks back I stumbled upon the Golden Hat, a black and white picture book created by Kate Winslet and Margaret D. Ericsdottir, mother of Keli, a non-verbal autistic boy.
Kate and Margaret tell the story of how the Golden Hat came about by publishing Keli’s poetry, words that cling to you. His most haunting is the poem about the Golden Hat. You read the story of their determination and the mission of the Golden Hat Foundation that sprung up around this poem in the emails between the two women. Margaret writes of her son, of his first words, of her challenges and her love. And Kate does as I did in that lecture, puts herself in Margaret’s shoes and finds herself not very different but for the grace of God.
The story then follows the travels of the Golden Hat from one famous person to another with a letter. Kate described her purpose to each recipient saying:
“To produce a book of photographs of well-known people all wearing the same hat. My favorite beaten-up trilby, to be precise. They would all be self-portraits taken on my basic digital camera, which I will send along with the hat. It will be passed (very carefully) around the world and worn (I hope) by many. I’ll get it to you, and collect it when you’re done.”
The photos were to be accompanied by quotes of each person considering the following scenario:
“It’s hard to imagine being deprived of the means to communicate. Imagine a wall between you and those you love, imagine being trapped inside yourself, never able to express your desires, needs, feelings. Then imagine the loss to those around you. Those who love you but assume that you can’t hear them, don’t understand them, can’t relate to them… what would your words be?”
The Hat also travelled from one non-verbal autistic person to another. Their photographs are published with their first words.
I was so touched by Dov Shestack’s first words at 9 years old when he was first given a letter board. When asked “What have you been doing all these years” he replied “Listening.” Josh Andrus first said “Try to fully understand my condition, because I get so lonely.” Keli, the little poet, first said at age 10 “I am real.”
These pages, populated by beautiful people, made me weep.
I entreat my readers, do what you can where you can to learn, know more, love and contribute to the lives of those among us who need that much more and have that much less available to them. But for the grace of God it could be me or you.
Please visit the Golden Hat Foundation by clicking on the link below and have a look at the beauty of this story and perhaps find your place on the Golden Wall.