Holding in the Storm

https://www.youtube.com/watch?v=Y7RKiabgFCc It was a glorious autumn day – crisp and bright. Blue skies brushed with flame-coloured leaves and thick pine boughs. My friends and I drove to the small town west of us for their weekly Sunday afternoon visit with their son. Ken lived in a beautiful townhouse, nicely decorated and replete with a swimming pool. He shared the house with another autistic man and their live-in caregiver, a male nurse.

This was the first time I met Ken and the only adult with autism that I knew at the time. Intellectually, I knew what to expect – a slender man in his 30s with dark brown hair and eyes and a nice moustache, quiet and non-verbal. Emotionally, I was surprised – at his personality and slightly quirky sense of humour, which escaped in bits throughout our afternoon together.

We drove to a nearby park with walking trails that meandered alongside a small river and wove through trees and bush. Ken’s parents were active and it seemed their son inherited their love of the outdoors. We three walked and talked and Ken trailed behind at a slower pace. We would pause now and then, to look at ducks in the water, birds twittering in a tree, or a vibrantly-coloured tree.

Pleasantly tired, we piled into the car and drove to Harvey’s for a treat – French fries and hot chocolate. Ken’s parents talked to him using his communication board (1). He answered some questions ‘yes’ and ‘no’ but he spelled out longer answers. What was most intriguing was that he did this while gazing left and right, down at this food, up at the lights – seemingly everywhere except down at the board. Yet he spelled accurately and answered questions and offered an opinion or two.

We drove him back home and, while parents and son were leave-taking and firming up arrangements for the following weekend, I excused myself to use the bathroom. Wow! It was gorgeous! Rich wood fixtures and trim, dark green wall-paper with burgundy and dusty pink cabbage roses and modern toilet and sink. In fact, the whole house was beautifully appointed and nicely decorated. (I learned later that it had been deeded to Community Living by the former owners, for use by people with special needs.)

Twelve Years Later…

Many things have happened in the lives of my friends, their son and their daughter. Changes for the better but which were difficult, particularly for Ken, who does not cope well with changes to his routine. The biggest change was to his diet. Research, regular visits with naturopaths and osteopaths, uncovered the startling truth that Ken’s diet was hurting him. Trial and error with different foods, then later a move to the country that provided access to fresh organic foods, led to a diet that not only healed many of Ken’s ailments but dramatically improved his moods and autistic behaviours. No sugar (except in fruit), no wheat and very little starch (rice, quinoa), lots of fresh veggies and protein (eggs, tuna, salmon).

In 2004, Ken joined with other autistic adults to form a group called “Bridges Over Barriers”. They meet regularly so the men can talk, share their experiences – challenges and frustrations as well as joyful celebrations. The meetings are held in the country on a beautiful acreage where the men can walk and enjoy nature.

Every member of the group communicates through Supported Typing (2) and nowadays, they use specially-fitted computers, some with audible expression. This is a rich time of connecting in friendship with people who truly understand and empathize, and who are able to encourage each other in living out the challenges of their daily reality.

In 2010, a documentary film was made by Christine Zorn, about the Bridges Over Barriers men, their meetings and a little bit about their lives.  In 2013, another film was made – this time, a dramatization of what life is like for an autistic adult.

“Holding in the Storm” dramatizes and helps us to understand the challenges and the joys of people who fit into this spectrum disorder. But, it also highlights the challenges we all face – at one time or another, in one way or another – in communicating. Being understood and accepted just as we are.

Please enjoy this film titled “Holding in the Storm” and encourage others to watch and share as well.

Notes: (1) Communication Board – a cardboard replica of the QWERTY keyboard with special buttons (Yes, No, Please, Thank You, etc). (2) Supported Typing was formerly known as Facilitated Communication. A specially trained individually physically supports the forearm and wrist of the communicator, allowing him/her to type out words and sentences. Modern computers can verbalize the words.

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About verawrites

Progress not perfection - that's my goal. Live and learn - that's my motto. I like to share bits of wisdom and glimmers of insight gleaned on my life journey of 50+ years. My hope is to encourage, perhaps inspire, fellow journeyers. Each of us has something to share. Let's be generous, gracious and compassionate with one another. I am blessed to be a blessing... so are you!
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2 Responses to Holding in the Storm

  1. bethbyrnes says:

    This was quite poignant, Vera, both the film and your post. As a former special ed teacher, I found myself tearing up. We still have a long way to go in understanding autism, but at least we are no longer ostracising people with this tragic syndrome. I couldn’t help but think about the fact that Matthew’s poem could be the thoughts of animals too, as they are sentenced to a lifetime of muteness even though they are sentient and far smarter than we think. I think all of us should be eating Ken’s diet. Other than fish, that is the way I eat. Thank you for this lovely reading and listening.

    • verawrites says:

      Thanks Beth. I have a friend who is a support worker for challenged kids in elementary school (gr 8 this year). She is helping a girl with fetal alcohol syndrome. She is able to speak but can’t truly communicate, filled with frustration at her limitations. It comes out as anger and rebelliousness but at the heart of it is a hurting misunderstood child. So very sad…

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