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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Tuesday, April 24, 2007


Joy Is Not An Outcome

“We grow up believing that what counts most in our lives is that which will occur in the future.” Mihaly Csikszentmihalyi, Author of Flow.

“I never think of the future. It comes soon enough.” Albert Einstein

“Worry never robs tomorrow of its sorrow, it only saps today of its joy.” Leo Buscaglia

“Our future is not predictable. Our future is the result of the choices we made.” Garth Brooks

In the “autism debates,” how much of this is true – that the crux of what we seek lies in a desired outcome? Whatever therapy that is debated to be “right” for autistic children, this is the foundation upon which it has been built – that the outcome should be that the child should function, should be as normal as possible, should live as much of an independent life as possible. It seems that we are so focused on these outcomes, that we’ve forgotten about today. For me, I know that there are hard days. Frustrated days. Even worrisome days – worry is about tomorrow, about an expectation, about a desired outcome. For me, my frustration gets directed outwards on a society that doesn’t seem to understand autism, doesn’t know how to accept Adam fully as he is.

I forcibly took some time away from all of this. I recommend it for everyone – to live your life, go out (find that babysitter if you must), and do something you enjoy. Moving out of autism, you begin to realize what quality of life really means: it’s not living for tomorrow but for today. It’s enjoying your life and your child. It’s about creating your life and your reality. It’s not that you give up educating or on your child. It’s just that you don’t worry so much. How many times are we really putting our children under an impossible magnification? It seems that once your child is diagnosed autistic, the bar is raised higher for our kids than for others. Every tantrum, every bit of anxiety all goes scrutinized as the “fault” of autism. It’s simply ridiculous. No one can live a life like that without snapping.

There are many people coming and going and we’ve been doing a multi-disciplinary “therapy” (I prefer to call it tutoring or education or just one to one assistance) for three and a half years now. For all these years, all we’ve been focused on Adam’s “progression.” Reading all of your blogs, I would say we’re all pretty much focused on that. One assumes that progression must lead to someplace – a fantasy of a child who talks, who goes to school, maybe even university. In the meantime, we if think about the worst-case scenario (that our child will never become anything), our bodies are in constant fight or flight mode, a state of panic for what does not yet exist, and we’ve come to learn that being in “fight” mode all of the time is a contributer to chronic stress – we are putting our bodies in the thing that we are actually thinking about. Perhaps we’ve even attached our sense of self to these particular outcomes, or attached ourselves to a habitual way of thinking and “treating” autism.

Think of an elastic band for a moment. You’ve got that band in your hand and are pushing and pulling it back and forth. What do you notice about the rubber band? It seems malleable and it moves back and forth – we are pushing and pulling the band to get that motion. Then what? If we pull to hard, the band may break, or worse, the band may hit someone else and hurt them. But where does this rubber band go? While it is moving constantly through our push and pull motion, it still ends up going nowhere. So although I’ve used the word struggle many times, and felt like talking, dealing, and confronting autism can be a “struggle,” a constant push-pull action that seems to be going nowhere, I would now like to change that word to STRIVE. What happens when we strive? We begin to move forward with what is.

We have come to believe that a struggle is noble. We believe that if we don’t struggle, then the undertaking is unimportant. I think I’ve had it wrong. Struggle is not what I want. I just want to move forward with what is. I want some flow. I want to spend more time with my son, who has just turned five and whose life is traveling at a speed that I never could have imagined. While we must strike a balance between teaching and living, we must always remember that our children are only children for a very short time. We need to cherish the moments.

In Flourishing, edited by psychologists Corey Keyes and Jonathan Haidt from Emory University and the University of Virginia respectively, Martine E.P. Seligman of the University of Pennsylvania writes in the chapter titled “The Past and Future of Positive Psychology.” I found the following quote very revealing:

“Prevention was a theme of the 1998 meeting in San Fransisco. We asked how we can prevent problems such as depression, substance abuse, and schizophrenia in young people who are genetically vulnerable or who live in worlds that predispose them to these problems. We asked how we can prevent murderous school yard violence by children with access to weapons, with poor parental supervision, and with, perhaps, a mean streak. The answer does not lie in the disease model (Catalano, Berglund, Ryan, Lonczak & Hawkins).

What we have learned over 50 years is that the disease model does not move us closer to prevention of these serious problems. Indeed the major strides in prevention have resulted from a perspective focused on systematically building competency, not correcting weakness. Positive psychologists have discovered that human strengths act as buffers against mental illness (Keyes & Lopez, 2002.) Much of the task of prevention in the 21st century will be to continue this fruitful line of work and create a science of human strength, the mission of which will be to understand how to foster these virtues in young people. (Bornstein, Davidson, Keyes & Moore, in press).

By learning optimism, not out of naivete, “we do not repair damage, but instead teach skills.” Optimism also moves us forward. It is creative and empowering and keeps us in a productive mode.

It’s been an interesting week just thinking about where we are. I’ve had to think about how long we’ve been on this path and about the quality of our lives together and what I want that to feel like. I want more time with my little guy before he grows up. I want to teach him myself some days because I have the patience and love for him that no one else will ever have, and I do find those precious connections we share that enable him to learn. I do become frustrated some days. But it’s not because of Adam, it’s because I haven’t listened or don’t have the time to listen. It does take time. We have been so happy together this week, and he really wants to learn from me, his parent. Being with therapists all the time is no way to live. In the beginning, we were told we HAD to do therapy for 40 hours a week – we all pretty much hear that one. Our children are not happy exclusively with therapists. Our children need us.

There may never be a eureka moment in autism science. We may never know everything there is to know. As Isaac Asimov said “The most exciting phrase to hear in science, the one that heralds new discoveries, is not the ‘Eureka!’ (I found it!), but ‘hmm, that’s funny.’” In other words, we may learn not what we seek, but rather something entirely unexpected. So there is no sense in waiting for something that may never occur. It only makes sense to continue with what we have right in front of us, and what that asks of us.

“Imagination is more important than knowledge. Knowledge is limited. Imagination encircles the world.

We should take care not to make the intellect our god; it has, of course, powerful muscles, but no personality.

We cannot solve problems by using the same kind of thinking we used when we created them.” --- Albert Einstein

Joy is not what Adam will become. My joy comes from living with him, from possibilities that I don’t invest in too heavily. Joy comes from being with Adam, and what he reveals to me every day.


Blogger mcewen said...

Wow! Your puppy morphed! Sounds like a plan to me, therapy wise, d.o.g. therapy for parents
= door open - go
h.o.u.n.d. therapy for everyone =
hope overwhelms our ner do'wells
......give me a break, it's early here yet.

9:08 AM  
Blogger DES said...

I've read your blog for a few months now...*sorry...lurking*...but find that you have such a way of saying what only manages to get muddled in my thought process. :) Every day is a new chance for joy....just have to look! Love the pics! TY for sharing your joy so openly.

9:12 AM  
Blogger Melissa said...

What a wonderfully worded post. I often tell myself to embrace the now - its really easy to get caught up in thoughts of the future, especially being so new to this 'world' of autism. Reading this post brought a smile to my face, much needed today. Thank you.

11:27 AM  
Blogger LAA and Family said...

Great to hear from you again on your blog.

I try to look at all the "therapy" we do with our son as a way of discovering the best way to teach him. My job, with all 4 of my children, is to teach them, and the only difference with Samuel is that I need extra help, and different ways to reach him. I must admit, however, that at times I get caught up in him reaching particular goals.

Stepping back and taking a break from the routine is a good thing!

12:27 PM  
Blogger r.b. said...

My son said today he was considering becoming a psychiatrist/psychologist and helping kids like himself. Funny, I always thought he'd go to tech school and work on cars...

WHY this relates to your post is, for three years we had the best psychiatrist in the world. He always told Ben he was the "hardest worker he knew!" He always built us up! We always left feeling better than when we came in.

The interesting thing was, he was like Ben in that he suffered from severe ADHD himself. True empathy is something the profession sorely lacks.

I couldn't have been prouder of Ben.

Just think if someone who had found a successful way to live with schizophrenia treated schizophrenics.

5:00 PM  
Anonymous Anonymous said...

A touching blog from a mother who truly loves her son.


2:59 PM  
Blogger violet_yoshi said...

What cute pictures!

4:36 AM  

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