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Tuesday, July 7, 2015

A sister's love

“Having a sister is like having a best friend you can’t get rid of. You know whatever you do, they’ll still be there.”
– Amy Li

There's no special day set aside for sisters, but there should be. I have two sisters: Lynda, who is a little less than 2 years older than me, and Jen, the baby of our family of five brothers and sisters.

Lynda and I grew up together - she was my first friend, the only one who could truly say she'd known me all my life. We were one year apart in school, sharing a room, a circle of friends and a closetful of clothes (both of us were surprised to find we'd lost half our wearable outfits the year Lynda left for university: "hey, where are the fabulous bell bottoms that go with this peasant top?"). We moved in tandem, marrying a few years apart, becoming first-time moms within a couple of months of each other.

My youngest sister Jen arrived after my two brothers (Duncan & Alec). She was 9 years old when I left home for university, 14 when I got married, and just 15 when Lynda and I made her "Aunt Jen" (for the record, the coolest aunt, much younger and hipper than us). I lived far from home (as far away as England) and my perception of her as "kid sister" stayed intact until tragedy struck my young family and my daughter was treated for leukaemia at the medical centre of the university Jen was attending. Jen (and her guitar) spent many hours helping me entertain Kaylee in her isolation room, marking the turning point where we got to know each other as adults, becoming close friends as well as sisters.

“Sisters annoy, interfere, criticize. Indulge in monumental sulks, in huffs, in snide remarks. Borrow. Break. Monopolize the bathroom. Are always underfoot. But if catastrophe should strike, sisters are there. Defending you against all comers.” 
― Pam Brown

Last August marked another turning point for me and my sisters. Jen, now a mom with two young sons, discovered that her breast cancer (a rare variant with a poor prognosis) had returned. Devastating news. My sister Lynda and I, our children grown, set our day jobs aside and took it in turns to live in as "Aunt in Residence", back-up for Jen on the home front as she went through harsh medical treatments (good point to mention that Jen's husband Bob welcomed us in with open arms - who wouldn't want to live with all his wife's sisters?).

Nine months of highs and lows, laughter and sadness, loudness and quiet, full hearts and heartbreak. Through good times and bad, the three of us sisters together, fighting for Jen's life. If it were a movie, I'm sure we would have gotten the happy ending: the miracle treatment that turned the tide, the improbable twist of fate that would bring Jen back whole and healthy to her interrupted life ...

I'm rediscovering that life doesn't often work that way, that prayers go apparently unanswered, that good people leave their lives in the middle, that things happen out of order and outside of easy understanding. In the middle of May, cancer took Jen from all of us and life will never be the same.

Jen was well-known for her wit and sarcasm, and one of her infamous sayings was "How can I miss you if you won't go away?" ... so now how are we to stop missing her when she can't come back? I'm struggling to find some sense in all of this, to find a way to go forward without her. She was the one who always read my blog, proofed my website, acted as sounding board for educational ideas (did I mention she was a kick-a$$ math teacher?). She would want me to find some meaning.

So here goes, the list of what I do know (much briefer than my "don't know" list): Life is short. Too short for a lot of the nonsense we waste time on. Be yourself, follow your dreams, spend time on the subjects you feel passion for and with the people you care passionately about. Be kind. Don't say and do mean things. Don't hold grudges. Forgive imperfections in yourself and others, repeatedly. Laugh often. Embrace life and don't put things off. Regrets are more likely to be about what is left undone than what is attempted. Remember that we are all mortal and impermanent, and no one knows how much time they will have to do what matters most. And on that last point, your legacy is strongest in the first-person, events not usually written about in history books, ripple effects of words and actions known only to you and a few others. Your family and friends will remember you long after you are replaced in your day job.

If you live long enough, you will have to say good-bye to a lot of people. I do believe there is life after this life, so this is my "good-bye for now" message to my dearly loved sister Jen, wish I could call you up and check if you're okay in your new place.

"It's been a long day without you my friend, and I'll tell you all about it when I see you again. It's been a long way from where we began, and I'll tell you all about it when I see you again, when I see you again" 
~ "See You Again" (song lyrics, Fast & Furious 7)

Thursday, April 30, 2015


"One of the most sincere forms of respect is actually listening to what another has to say" ~ Bryant H. McGill

We're reaching the end of another April, with lots of public discussion about autism. One message that has been coming out loud and clear in recent years is that many people on the autism spectrum are not feeling respected, or "heard" in this discussion ... that has to change.

Most of the people talking about autism are well-intentioned - we want to help people or a particular person on the spectrum to be successful, to have an easier life, to have a good future. The intentions are not the problem, but where we go from there can be (we all know what the road to H-E-double hockey sticks is paved with). Too many times, we (as therapists, educators and parents) charge ahead with ideas and programs and interventions that WE think are best, that WE think should happen, that WE think others should comply with. We don't ask, we tell.

Social mis-step in the high school hallway - drawn by Adam

The picture above was drawn by Adam in high school. It was part of untangling a larger social problem he was having in the school hallways as he would take the shortest route from point A to point B, accidentally walking between people who were having conversations. The interesting part of this picture (to me) is the facial expressions - Adam aware that he had once again violated some unwritten unspoken social rule, causing other people to be upset with him, but no idea exactly what had gone wrong or how he could fix it (a common experience for people on the autism spectrum - neurotypical humans are ridiculously intolerant of social mis-steps).

A few questions for you: Why is Adam wrong? He has no bad intent, he's just trying to get to his next class. Why is the chattering social majority in the right? Shouldn't they actually be getting to class too?

True solutions to the mis-match between widely held social customs and one individual's unusual approach come through communication. Not communication as in telling the individual how wrong they are to do things the way they do, but communication that starts with listening to the individual to find out what things looked like from their perspective, what their thought process and intent was, what was okay, what was upsetting. Followed by discussion to fill in useful information that may not have been received by the individual. And only after that whole process of information exchange, and clarification of the situation, figuring out a solution that takes into account all sides, all perspectives, with the person on the autism spectrum as an active and powerful participant.

Communication is power, but only if other people listen to and respect that communication. We need to start listening better:

click the link below if the video doesn't automatically play:

Sunday, March 15, 2015

With a little help from our friends

"It is during the worst times of your life that you will get to see the true colors of the people who say they care for you" ~ Ritu Ghatourey

A few years back, I wrote a blog post called Comfort in a cold world featuring some beautiful red socks that a friend had given me in the midst of a very difficult time in my family. Well, the difficult times have returned, and when I saw this friend a few days ago, she gave me another pair of cheerful red socks (this time with monkeys!) to once again let me know that I'm not alone:

As I was sitting and looking at the monkeys, I was reminded of a story that Adam drew in 2012 - a story about friendship in times of need. So here it is, straight from the mind of Adam, who understands how difficult the world can be, and also knows the importance of a friend's helping hand when life sends you into free fall:

drawn by Adam, 2012

drawn by Adam, 2012

drawn by Adam, 2012

drawn by Adam, 2012

drawn by Adam, 2012

We need our friends and family, our human connections, because life is hard and full of perils. When we are surrounded by people who care about us, no matter what each day brings, we can get by with a little help from our friends. 

Thanks to Adam for illustrating this truth in such a vivid and memorable way (with monkeys!) ... Sheila B

"My friends and family are my support system. They tell me what I need to hear, not what I want to hear and they are there for me in the good and bad times. Without them I have no idea where I would be and I know that their love for me is what's keeping my head above the water." ~ Kelly Clarkson

Friday, February 13, 2015

Autism and Unspoken Love

"What's in a name? That which we call a rose by any other name would smell as sweet" ~ William Shakespeare, Romeo and Juliet

Can love be understood and experienced if a person can't even say the word? 

There is a common misconception that individuals on the autism spectrum are emotionless, and that misunderstanding is magnified when an individual is also non-verbal (for more on the this topic, read this blog post from our archives: Drawing Out Emotion in Autism - May 2013) My experience (working with many ASD people over the years) has been that while emotions in autism may not be easily named or conventionally expressed, they are certainly strongly felt.

So, on the topic of understanding love, I would like to share a visual story that Adam drew years ago when he was in elementary school and mostly non-verbal. At that time, he was often overwhelmed by the larger world, and to most people he looked like he had two states: sort of okay and distressed. Those of us who were privileged to know him better would also see laughter and excitement (usually connected to the action cartoons that he loved to watch time and again), but he didn't physically convey more subtle emotional states.

One day, I gave Adam a "story starter" picture of a man with a fishing pole, hoping to get some sort of "action and reaction" coherent storyline. The first four frames of the story are definitely action-packed:

Man and fish: part 1 ... drawn by Adam, 2001

But frames 5-8 of the story were an interesting surprise:

Man and fish: part 2 ... drawn by Adam, 2001

... self-satisfied man (thumbs up!) leaves the fishing spot carrying the "catch of the day" and brings it home with a smile to his wife, she in turn cooks up his fish offering and then the two of them sit down to a lovely seafood dinner. A warm picture of love shared between a man and his wife.

Once again, Adam's drawn communication had revealed thoughts, feelings and social understanding that were not at all evident in his interactions with the world. He showed us that he understood the emotions of love and caring for other people and knew how people expressed those emotions in their actions and interactions. Not being able to say it in words or facial expressions or physical actions did not mean that he was unable to feel the emotions or intellectually understand the social dynamic. Even though we set the bar high and believed in Adam's ability, we had underestimated the complexity of thinking he already had - a valuable lesson for all of us, and one that has been repeated and reinforced many times over the years since he drew this story.

More and more non-verbal autistic individuals are finding alternate ways of communicating (through typing, through art, through music). What these individuals show at a surface level is often not at all what's happening underneath. Presume competence, develop alternate communication channels, listen carefully and respect the autism perspective.

"All people with autism must be offered some way to communicate because we have minds, and thoughts, and feelings ... Life is beautiful the autistic way." Henry, 14-yr-old with non-verbal autism who communicates by pointing to a letter board (from his Roses are Red for Autism blog)

Wednesday, January 21, 2015

Everybody could use a sidekick!

Today's post is inspired by my dear buddy Will (my youngest nephew). Will and I have been spending a lot of time together recently, and I have been thoroughly enjoying the chance to look at the world through his eyes.

Will in the Clone Trooper costume he commissioned me to create for Halloween

Will is an original - a strong-minded imaginative child who sees the world in a distinctly different way. His mom (my sister) often rightly refers to him as "Won't".  Depending on the circumstances, you might see him as a fabulously different thinker who turns the ordinary world on its ear, or alternatively, as a child who stubbornly refuses to comply with your (to him arbitrary) demands.

May I just qualify the rest of this post by stating for the record that I love this boy - when he's "good", when he's "bad" - love him. He reminds me a lot of myself as a child. Thinking thoughts that don't match the majority, coming up against the pressure to comply, to be "usual". Interesting to be bright and eccentric, but not always comfortable.

I am Will's "sidekick". I play the roles he writes for me in his imagination dramas. I don't argue about the parameters, I follow his lead. A gift from me to him that I hope he will someday regift to his own undoubtedly strong-willed out-of-the-ordinary future children.

I wear the costumes he chooses for me from the "Tickle Trunk", his costume bits treasure trove, (if you're unfamiliar with the term "Tickle Trunk", please look up Mr. Dressup, a Canadian childhood icon). I embrace the powers he bequeaths to me. I act out the effects of his magical attacks (including the memorable "tornado of doom" which ended with me breaking my sister's cabinet door with my head ... but I digress, that's a story for another time). I happily follow him through the neighbourhood wearing items like a too small purple hockey helmet and fighting invisible foes in the bushes (trusting that the neighbours understand).

Together we adventure through the world of Will's mind - I learn about him and he discovers that I am his true friend. A gift for both of us.

Will as Robber Baron (not pictured: me as "robber sidekick" dressed all in black in a costume chosen by Will)

So what's the connection to autism? Individuals on the autism spectrum are developing outside (often way outside) the "usual". There is a tendency to view this unusual developmental path as somehow deficient, rather than just "different". When I do therapy with young children (no matter the diagnosis), I want to know what the world looks like through their eyes. What do they love? what are they thinking about? what do they dream? what do they want?

There is no better way to find out the answers to these questions than becoming a "sidekick". Put your own worries and demands to the side, even for an hour, and follow children into their world. Pay attention to what catches their attention. Follow their will and their wishes, as much as you can figure them out. Are they fascinated by the patterns of sunlight painted on the carpet? Take a close look, you may find it beautiful too. Do they want to wear a cowboy hat and run up and down the stairs? You can do that with them. You are more likely to hear meaningful communication when children are pursuing their own interests and passions, and you are right beside them sharing the experience.

Also interesting that the more children are convinced that you are truly interested in their world, the more likely they will trust you enough to take your hand and bravely take steps out into your world.

Historically, too much autism "therapy" has been focused on getting children (and teens and adults) to "comply". I don't much care for compliance. I would rather hear what a person is really thinking, even if it's diametrically opposed to what I originally thought would be more convenient. Then we can have a conversation, understand each other and move on from there.

me at one of our Typical Teen group meetings (2008)

Dignity is over-rated and full-on passionately embracing the fun in life is under-rated. Set your conventional views of age and self-respect on the shelf, get down on the floor and follow your kids. You won't regret it.