Introducing BUSHLETTE!

She’s bold, she’s beautiful, she’s a singlestreamer, and she’s NOT writing a book and taking a blog vacation.  She is Bushlette!

I’d like to introduce to the Singlestream it’s first guest author.  Ever.  Her name is Bushlette and she is my literary baby sister.  We have written together, performed together, and laughed together a lot and the Singlestream is blessed to have her while Bushlings takes a vacation.

Look out for her first post and give her a warm welcome!

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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.

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.

I hope God was ready…

…cuz his hands are now full, with a gal made to grasp the horns of the bull.

A woman of spirit, ahead of her time, she cut her curls short 60 years before mine.

To Christ she came laughing, handed over her debt, said “He took the cussin, gamblin, drinkin, but never the cigarette.”

To Aunt Natalie… God’s own spitfire.

The cloth from which my own spirit was cut – gone to be with her Father but on earth never forgotten.

 

 

 

 

Flashback IV: Little Favors

Oh boy, was I ever in trouble.  Before the haircuts there was (perhaps) something to be grateful for.  There is a mix of feelings that I probably couldn’t have faced without bitterness a mere six months ago when I read this.  But now I read it and feel as though I am reading the diary of a younger sister.  My feelings are rich and colorful for her – pride in her eloquence, sorrow for her innocence that would inevitably be lost, and protectiveness for her heart.  How adult she sounds, thinking of her 15 year-old self!  How readily she embraced hope!  How amazing was her confidence!  How naked was her writing!  This is the woman I was when I could use my hair as a scarf around my neck and it hung to just above the top of my jeans.

This is the flashback that pains me most.

I didn’t realize how much I worry until this moment. This single instant. I didn’t realize how much time and how much of me I have wasted on inward chewing until this second. It’s been a gradual process, this realization, but I HAVE ARRIVED!

These past few months I have been taking stock of my time. How much time do I have left in this job? How best can I enjoy the time with you before the distance starts? How much time will it take for the architect to draw plans? How much time will be left with my teenager after she turns 18? How little time I have in the evening to de-stress… how little time in the morning to be ready… how little time I have to spend with the people who matter most…

My baby cousin called today on the first Sunday I have had to myself in what feels like years. I had opened one eye, walked the dogs and come back to bed until her afternoon call. “May I stay with you tonight and you take me to school tomorrow?”

She is one of the loved ones much neglected in my time-budget to date. So, with no other plans but to catch more snooze hours, I said yes. She’s a darling, a giclee of my 15 year-old self, an eerie but delightful echo of my voice.

My awareness of my time-failings has grown every day thanks to you. You made me conscious of my worry, my intense focus on future problems and my failure to appreciate today. It’s a form of ungratefulness, you taught me. It is also a form of doubt. We worked several years ago to be here where we are now so how dare we scorn our previous efforts and not enjoy what we have been blessed with and worked hard for? Why waste it with singleminded focus on a future moment that we might not even stop to enjoy as we fail to stop and enjoy here and now?

And so I tried, channeling some of that intensity to the now, focusing on getting today right. At first it was difficult, seemingly meaningless, but you were patient and persistent. And little by little I saw pieces of me that I had sliced off to better focus. They came back to life, sprouting like new leaves on a fall Poinciana.
I remembered the joy of exercise: one evening after you and I fought and parted in anger I hit the road and remembered. I sweat and I turned red, I beat furiously at the pavement, each step opening my heaving lungs again and reminding me.
I remembered the joys of sport: focus on something completely unrelated to the future. So I drove to the other side of town to watch you play football every Saturday of the season in boiling sun and driving rain. Mrs. No. 16 remembered herself and screamed first at your quarterback and then beside you in the games to follow for the day. You reintroduced my competitive spirit to myself sitting against my knees on playoff weekend and cussin’ the ref’s terrible calls.

I remembered the freedom of a Friday night out without fear for my safety.

I was reminded about the exhilaration of a good fight over a table of dominos (obnoxious as you could be).

You introduced me to hitherto scorned and now highly developed taste for Irish cider.

You gave me someone to cook for after years of single and functional 5 minute meals, shaking off the rust and remembering the joy I used to find in creating something scrumptious and new.

And then you had to go away and leave me in my day to day. It had to be done. But part of the devastation of parting at the airport, apart from my love for you, was the fear that the parts coming alive would go right back to sleep. My joy was leaving, or so I thought.

This is my first full weekend on my own and I have realized in this one instant that that isn’t it at all. My cousin turned on my computer and went in search of music. Digging in folders I haven’t seen in months. She put on an old favourite I haven’t seen in even longer, a KT Tunstall song – Little Favours – and colour just BURST into my brain! It was like the skittles rainbow!

“I slip softly through.. your slim fingers… feel the traces… our embraces… feeling that lingers”

And there I was feeling like ME again – the Pieces matching up to make a whole puzzle – with hairbrush in hand and head bobbing in a half-crazed beat with the rhythm guitar sliding around on the kitchen floor like the pro Michael Jackson WISHES he was.

So take me faaar away…”

A vision of the me before the worries and the day I first bought the CD…

“…and hold me cloooose to your heart…”

a discovery of who I was again, a person full of colour and life and love and verve and ‘ganas’

…do me just this little favour…

A woman who loves her music and loves to dance, loves red wine and silver, loves to paint, to dream, to fight, to work, to sweat.

…for I do… yes I do… LOVE YOU

Loves LIFE.

To see the other Flashbacks in this series, visit the links below: