Keli Thorsteinsson ~ THE GOLDEN HAT

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.

END.

~For all the children of the world like Keli, Singlestreaming now features a link to The Golden Hat Foundation on the sidebar.  Please click on this box when you have a chance and learn more about the Golden Hat Foundation.

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The Golden Hat

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.

What to Expect – Unconventional Review

It was a dog’s day at work that had me praying Psalms 35 and dreaming murder.  To calm down the inner battleship I took the afternoon off and went to the movies – only because Happy Hour hadn’t started yet.  Wasn’t my first choice.  But obviously someone out there had a plan.  My student cousin joined me and we bought tickets for What To Expect When You’re Expecting.

Dear Reader, I add all of this personal background to this unconventional movie review to attempt to explain my uncharacteristic behaviour and protect my badass rep.  Just for the record, Bushlings doesn’t cry.  Not in the movies.  Especially not in a comedy.  Not in public.  And as far as about 99.9% of the people in my life will tell you, NOT AT ALL.

The movie began with such hope – the story of five women who found themselves expecting.  Each of them was a different lady – a young (but absolutely DELIGHTFUL) bimbo married to an old legend, their (“their”) daughter-in-law expert in breast-feeding without ever having done it, a witty young woman working in the dog-eat-(hot)dog world of Food Trucks, a beautiful photographer unable to have children of her own, and a celebrity fitness trainer knocked up by her dance partner on a celebrity dance show.  It was HILARIOUS!  There were fits of laughter to be found in the beginning, the middle, the end, every minute.  From the way in which they found out they were pregnant, to the craziness of their pregnancies, to the delivery room, to Ethiopia this movie was fully engaging.

I am not going to be a spoiler but I will touch on four moments that were planted in my memory forever.

  1. The Dudes.  This movie was not just about women and not just for women.  It was for and about humanity.  The Dudes, headed by Chris Rock, operate in accordance with an unbreakable code that is so absolutely, authentically, terrifyingly and irritatingly masculine it made me cringe, laugh and embrace them all at the same time.  I can see my brothers in these Dudes, my friends, and my Man in Iraq.  If there is ever a man who fears fatherhood (all of ’em), they should watch this movie.  Women, sit them on the couch.  Tie them down if you have to.  Put the thing in front of them.  It shows regular and authentic dudes doing fatherhood in their regular authentic dude way.  All manhood and all powerful and all scary.
  2. The Miscarriage.  It hit me right in the chest.  I’ve never had one but have had the same fears.  Her cruelty, her blame, her crushing disappointment came at me as words that could have come from my own mouth and tears (I admit) that could have welled up in my own eyes.
  3. The Meltdown.  Yes, I laughed with everyone else.  It was hilarious!  At the same time I imagined WOW, that’s probably what pregnancy would do to me.  Big as a house, fighting my own body, farting and peeing and effing and blinding.  Perhaps crying?  Maybe not.  I wanted to reach into the screen and hug her whale of a mummy-tummy and tell her I was rooting for her.
  4. The Adoption.  Here I need to pause before I write.  …………  OK.  I’m ready.  Her ENTIRE story gripped me.  Her insecurity at not being able to do what every woman is built to do and give her husband a child, her fear of not being good enough and undeserving, her love at first sight for the ugly (yup – I said it) little kid in the photograph who turned out to be absolutely gorgeous in person – it consumed me.  Will this be my story?  Will it be my pain and my battle?  Is that the happy ending I will find?  Women who have never been pregnant sometimes (often) wonder.  It may be turn out there was never anything wrong with our ability to have kids, just that we’ve been smart with our protection, but seeing the worst case scenario play out so beautifully really gave me a sense of peace.  Bushlings would never admit that she wept through the ceremony.  She would adamantly deny there being any possibility that she could cry rivers down two of her cheeks in the theater, in PUBLIC.  She wouldn’t tell you that she could weep while writing about it.  Never would you get her to admit to feeling rips at her heart while remembering the beautiful, alone, unparented, forgotten, unloved, unnamed, unrecognized Ethiopian child desperately in need of the motherhood of a woman whose eggs wouldn’t perform even after she had decimated her 401k on IVF treatments.  It would never do to react like that.

As soon as this thing opens up in a theater near you, drag everyone you know and go see that movie.

What to Expect was not what I expected.  It wasn’t a story for women or for men or for children or for adults.  It wasn’t geared to any population in particular.  It was a story about all of us – the one thing we have in common throughout all of humanity.  We each were born to a woman, carried for up to nine months.  Each of us is a combination of either having children, wanting them, and/or fearing them.  This is about every one of us who has been a child.

This is our story.