Entries in autism (7)

Tuesday
Jun242014

The Reluctant Artiste: The Heartbreak of CBPS (Chronic Big Picture Syndrome)

A friend of mine just became a grandmother. (Let me pause there for a minute. Hand to heart. Deep breaths. A friend of MINE is a grandmother. A peer. A childhood friend even. Someone who I remember vividly wearing a cat costume with divine black velvet ears and perky whiskers when it was totally not Hallowe'en, but just a Tuesday and her Grade Four self needed to release her inner kitty. I have a Grade Four Kitty friend with a gorgeous little grand-daughter, and a blissed-out-new-father son, smiling from the photo with his newborn on his chest, like he is old enough to have a new-born and not still playing Lego down in my rec room. Processing. Processing. Nope.) Let's try this again. 

A new person has come into the world and nothing will be the same again. Just because a birth is not an unusual thing,  that one occurs around the globe about four times per second, doesn't mean the first statement is not true. A life is in motion. A story has begun. And I am old enough to know that stories are not safe things. Things happen in stories. Bliss, pain, love, unbearable loneliness, ecstacy--these things come-- in tiny drops or tidal waves-- when a life is put in motion. But they come. And you can anticipate, or prepare or practice your dog paddle til you're blue in the mouth. But when it does come like a five story fist of water slamming everything known and safe to matchsticks, and throwing it out to a rubble tumble sea, you've got nothing, but to spread your arms and ride it to wherever your story's going. 

(This is not something you write in a "Congratulations on your new Grandchild!"card. I mean, clinically depressed, Gauloises-smoking nihilists would manage something with a nice bunny on it, and a gift card for Toys R Us.)

But I have gotten to the point where I don't see just the day, the moment--I am always looking to where the moment is going push the story next. I am always looking at what it cost to get to the moment. I have developed Chronic Big Picture Syndrome. 

Which has made this week a little challenging. Quite apart from Hello Grandma Kitty's news, my son is about to leave his elementary school, and go to high school. Now before you go, "Ah, she's going to wax all soppy about her youngest growing up, and leaving the nest, blah dee blah blah...let me be perfectly clear. As a CBPS sufferer, my problem is NOT fear of empty. I long for empty. I visualize it, late in the night, when the stories that are my children finally, for a few sweet seconds, rest, and I can go from flailing to gently bobbing atop their very full cross currents. 

I am just trying to keep it together as my CBPS threatens to overwhelm me. When my fellah stood up on the stage to take his "diploma" (and when did the end of Grade Eight become something that required pomp and circumstance? When did leaving Pre-school for that matter? How many times can we listen to "Good Riddance" by Green Day before we figure out that it's not a nice song, and that "I hope you had the time of your life" is a Fuck You that should not be lisped by four year olds wearing teeny tiny cocktail dresses and My First Fake Lashes?) anyway, when he took his diploma--all I could see was the story--the stories--of how he got there. And the stories he was being pushed towards, by Green Day and time. 

Those who have followed my writing around my younger son will know that he is on the autism spectrum, and getting him through grade school has involved lots of story. A lot of it good. I am thinking about his communication therapist who came to kindergarten with him every day, for months, after spending half a year in a model classroom, trying to acclimatize him to a classroom. And who just sat, and supported him, until he looked at her and said "You can wait in the hall." I am thinking about the teacher who threw her arms around me after she heard we'd won, and the school board had guarenteed an education assistant. I am thinking about the three teachers who sat like cats with canaries wriggling in their mouths, waiting to surprise me with testing that showed that my boy had gained three years of lost development--in one. The little girl who got between him and a bully--arm outstretched, looking firmly up at the aggressor. The big, gentle, unflappable male teacher who walked past my son, now a former student, and said ,"Hello wonderful boy." I am thinking of so many good, strong caring people who fought so hard to keep my son's story headed somewhere safe. 

That's a good thought, right? Except I can't stop there. I have CBPS so I have to also think about the other stuff in the story to date...the wondering how often I could arrive at work with bruises and swollen eyes without human resources stepping in. The year he talked about suicide every day for three months. The daily picture of him alone,  hunkered down on the playground, trying to avoid the older boys who harried him. The way that picture stayed on the back of my eyelids all day, so that every blink brought it again. The day he ran. And no one knew where. 

(Four blocks. Across a busy city street. One of his daycare workers, walking to work, found him in a November bare baseball diamond. He was "looking for food and shelter.")

And that's not all of it. I don't just see the story to date. I see the story to come. As the other kids in his grade received prizes for excellence in academics, or sports, or community involvement, and my boy sat and watched them move away and on, I saw next chapters headed our way...high school (and god, that's hard enough for the more standardly issued, what will it be for an Ichabod Crane tall, pock-faced autistic guy with all the wants and desires of any teenage boy and ZERO game?), adulthood--when every single bloody support for people on the spectrum basically evaporates, and I'm an old mum, how long can I work, keep a house, keep him safe? How will we even negotiate that--when all he wants is a home, a wife, a job, children (dear god, children---he is very clear on that point). This "turning point" this "fork stuck in the road" puts him a year closer to the rest of his life's story...and that my friends, opens us up on a big picture that anyone in the ASD community will tell you is complicated at best. 

So, forgive me if I seem to be holding my breath a lot. Forgive me if my eyes are awash in water and salt. I feel the Big Picture coming, right now, and it makes me want to write inappropriate things in baby cards....and have the wrong look on my face in proud-parent-of-the-grad photos. 

A new person comes into the world. A new story begins. And there is NOTHING than can stop that story's flow. So I spread out one arm, to try to keep myself afloat. And I wrap the other around him. And we take a big breath and get ready to ride, wherever the story is going. 

 

 

 

Thursday
Feb022012

"Ducks on the Moon: A Parent Meets Autism" the documentary airs Monday, Feb 20 at 12 noon on CBC Radio One across Canada

"Ducks on the Moon: A Parent Meets Autism" the radio documentary, which combines elements from my performance of the play, Ducks on the Moon, with interviews with other parents, and experts in the field of autism and parenting, will air as a holiday special, Monday Feb 20 at 12 noon on CBC Radio One across Canada. 

The book Ducks on the Moon which has the full play, extended interviews from the documentary and photos from the production, is available at Hagios Press or here at Amazon.ca, Chapters.Indigo.ca, or McNallyRobinsons.ca

Friday
May062011

Ducks fly to the Happy Nun and the Cathedral Arts Festival

 

 

 

Ducks on the Moon" written and performed by Kelley Jo Burke

 

 

in a shared performance with Carrie Catherine

Friday, May 13 -- 7:30 pm

at the Happy Nun in Forget, Sask

 

on my own

Thursday, May 26 · 8:30pm - 9:30pm

at the Cathedral Arts Festival

Unitarian Centre

Corner of Angus Street and College Avenue, Regina

 

My "stand-up documentary" about the early years with my autistic child. Basis of my recent CBC Radio's IDEAS documentary, and released as a book this year by Hagios Press, this "99% true" play is part comedy routine, part performance piece, and ultimately entirely the story of a parent coming to love and accept the kid she has.

 

 

 

Buy the book on-line at Amazon, Chapters or McNally's!

Wednesday
Apr132011

KJB reading in Prince Albert

Kelley Jo Burke Reads from Her Book, Ducks on the Moon: A Parent Meets Autism

Ducks on the Moon: A Parent Meets Autism
by Kelley Jo Burke

Saturday, April 16, 2:30
John M. Cuelenaere Public Library - 125 12 Street East

Ducks on the Moon tells the story of Kelley Jo Burke’s “evolving” relationship with her autistic son; there are also interviews with parents of children on the autistic spectrum and leading experts in the field.

The book is a source of inspiration and support for parents and teachers with an autistic child in their lives and also engages general readers.

Kelley Jo Burke is an award-winning playwright, poet, and broadcaster. Her plays have been produced and published in Canada and around the world. She is the host and producer of CBC Saskatchewan’s Sound Xchange. She will be reading from her book at the library on April 16.

Everyone is welcome to attend. Books will be for sale.

A Saskatchewan Writers Guild Reading

Friday
Sep242010

DUCKS ON THE MOON on sale online and in bookstores

To order Kelley Jo's new book, about autism and parenting, 

 

   1)  Order online from:

   McNallyRobinson.com  

   Chapters-Indigo.ca ,  Amazon.ca  

 

   2)   Have it ordered in at your favorite bookstore: 

          Ducks on the Moon, by Kelley Jo Burke
          ISBN 978-1-926710-07-5 

 

   
   3) Contact the author at kelley.jo@sasktel.net 

   She will sell you a signed copy.  PayPal gladly acccepted.