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)

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)

Bob's your uncle, Bob's your dad

A father is someone who carries pictures in his wallet where his money used to be ~ author unknown

I grew up in a big family and many of my childhood memories look like this ...

... lots of kids and four brave parents, two of them dads named Bob - one my own dad, and one my Uncle Bob.

Because of  "the Bobs", I know a lot about what a dad should be: a dad is warm and kind, he spends time with you, he invests his money in his family (refer to opening quote), he tells you when you're going off track, he helps you get back on track, he leads by example, he does silly things, he laughs with his children when they point out those silly things, he loves his life and his wife and his children without reservation or boundary or time limit.

We (my brothers and sisters, cousins and I) have been fortunate to have had the wit and wisdom of "the Bobs" to support and guide us over many decades now - through good times and bad, they have always had our backs, and we have depended on them time and again to help us find our way.

This past week, my Uncle Bob passed away quite suddenly, leaving a hole in the family the size of his large and generous heart. But he didn't leave things undone. Every day, with words and actions, he let his family know how much he loved them. It's this final lesson from my Uncle Bob that I'm holding in my heart - to live my life fully and love my family extravagantly, to leave no room for regrets.

 

 

So on Father's Day, take time to show your dad you love him.

Leave no room for regrets.

Happy Father's Day 2013!

It's Father's Day today, and I'd like to share some pictures that express the love of two sons for their dads:

First, from Adam. As you will know if you have been following this blog, Adam is a young adult with autism who has limited verbal language. He expresses his more complex and detailed thoughts through his drawing. The following pictures were drawn in 2001, after he took a trip to Disney + with his dad. You'll see that in Adam's world, "Dad = Fun":




Adam and Dad head off on the airplane to begin their adventure

They can't wait to get to Disney

They also go to Epcott and MGM

Of course, no trip is complete without a stop at McDonalds

It's clear that Adam connects his dad with good times

Second, from Kevin. He is also a young adult with autism who has limited verbal language and uses drawing to communicate. His favourite drawing subjects are Mr. Bean, Teddy and his dad, mom and brother. Here are a couple of pictures of Dad from recent months:

Music is one of Kevin's favourite things, so he puts that together with Dad (one of his favourite guys)

Here's Dad keeping himself fit

... and here's Dad admiring Kevin's artistic talent (he is one of Kev's biggest fans)

When you're the dad of a non-verbal person, they may not be able to tell in conventional ways how much you mean to them ... but if you expand your view, you may be able to see the subtle and unique ways they are trying to say "Dad, you're the best - I see all the things you do for me and I love you for it".

 

Happy Father's Day to all the dads out there!!!

What's it all about?

Life is short. I know that ... and sometimes life is too short and people leave before we're ready to say good-bye to them, before they've done all the things that they hoped to do.

A friend died this week. Too young ... my age, in fact pretty much exactly my age (we used to joke that we were "litter mates", born in the same month, same year). I met him almost 25 years ago when we both worked at a school educating teens and young adults with autism. A good man with a wicked grin and a kind heart.

His loss leaves a big hole in the local autism community, and a far bigger hole in the hearts of the friends and family who loved him.

And today I'm once again thinking about how short life is ...

... my daughter died of cancer when I was 29 and she was almost 3. I couldn't make sense of it, couldn't see how to go on past that point. All of the things that had seemed so important - employment, income, professional standing - were blown to dust in this new shockingly clearer view of life and death. My only regrets were the times that I had let my fears and worries stop me from fully living, loving and laughing in the moments I had with her.

My work with individuals on the autism spectrum came after this point. When I deal with an ASD individual and their family, my primary goal is always to maximize the enjoyment of the present moment - it doesn't matter that things are not perfect, they rarely are, and really (as I frequently tell my students) perfect is a bit boring. There's always something that's going right, something that's funny and endearing and quirky. It's not naive or silly to focus on the positive, it's essential to helping people blossom and reach their potential. And you just don't know how long you have.

And so with this in mind, and in honour of my friend Roc, here's a cartoon drawn by Adam a few years ago featuring a baby and a skeleton (I think Roc would appreciate the humour):

Live your life fully with an open heart, laugh until you snort tea out your nose, let tears fall when they want to and leave your legacy written in people who count themselves better for having known you.