Tuesday, June 2, 2015

Seeing 'as if for the first time'

By Janice Bennink

Lately I started wondering how my parenting may have added to the challenges of my son’s anxiety disorder, which goes hand-in-hand with a primary diagnosis of Asperger’s syndrome.

He is a 21-year-old adult, first diagnosed with autism at age seven. Back then, I spent my days consumed with learning about all things autistic—attending workshops and meetings, poring through books and staring at my computer for hours on end—seeking out anything that would secure his happy future life. The information implied that we could “fix” or shape things to come, perhaps turning him into a superstar with autism like Temple Grandin or Glenn Gould.

Parents of newly-diagnosed children with autism are submerged under an avalanche of advice and information about ABA and IBI, social skills and social stories, sensory diets and gluten-free diets… Stop me now, please!

No wonder I woke each morning in a mild panic, feeling there was work to be done. I brought that sense of mission to my son while overseeing each and every step of getting ready for school for 15 years. After drop-off, I imagined challenges he faced that I could not witness firsthand. Always wondering if I would get “the call” from the school. Then back to the job of plugging “Asperger’s” into another Google search.

For all of my son’s gains through baby steps and giant strides towards adulthood, I still flash back to moments when I broke some cardinal rule of good parenting, and feel that surge of regret over something I can never undo.

I don't like looking back—too many 
should haves. Looking forward is something I try to avoid, however unsuccessfully, with its scary list of things I should be doing. Being in the here and now seems to be the least punishing of choices.

These days, I let information through selectively by email. Browsing an e-newsletter, I noticed a research study call for participants in a mindfulness therapy group at York University for youth with autism spectrum disorder and their parents. Perfect timing, since my son's anxiety has stalled his plans for post-secondary education.

I am a newcomer to mindfulness—my notion was some kind of Zen-like practice that would grant us moments of peace in a busy day. During the intake, I was told that we will both be trained in techniques that might help us handle stress. This sounded promising. If we were both calmer, it just might rub off on one another.

Our group included eight parents, an encouraging young psychologist/facilitator and a graduate student. We were part of a research project called
MYmind in the department of psychology.

Creaking down to cushions on the floor, I closed my eyes.

“In this moment...” a voice began.

Deceptively simple meditations started with the sound of a bell, and we were asked to simply bring our attention to this breath, or this sensation, this smell, this sound. Guided gently by our facilitator’s instructions, we attempted to observe instead of overthink, and focus only on ourselves—right here, right now.

For me, this is not as easy as it sounds. It was like trying to drink from one hole in a lawn sprinkler.

We were handed a single raisin and asked to mindfully observe each step as we hold, smell, taste, chew and swallow. It is a numbingly slow exercise during which I wondered how learning to eat this way might help me lose a few pounds. It also demonstrated how some behaviours are so routine that they are done without thought, on auto-pilot.

Am I parenting the same way I am eating? Going through the motions because I've done it for so long?

During sessions, we practised allowing thoughts to drift in and out, like clouds. We tried to listen without judgment to each other and discussed scenarios that generate parental stress. Members of our parent group, with splendidly diverse personalities, acknowledged and shared auto-piloted responses to their children teetering on the brink of adulthood. We all understood.

Our facilitator listened with gentle suggestions to observe and accept rather than react. This seemed profoundly frustrating at first, for one who has been taught to take advantage of “teachable moments” as they occur. With my son I am always listening, noticing those moments, and giving him timely cues so he can learn to “generalize appropriate social behaviours,” words that come alarmingly easily to me.

No wonder he is anxious, I thought. He has been living an ever-present social skills workshop led by his mother.

If mindfulness is learning how to deepen our attention and awareness of ourselves, it brings with it an awareness of the effect that we have on those around us. We were told that mindful observation of our children means the practice of seeing them as if for the first time. Perhaps seeing what a visiting alien might see, then reacting without judgment.

Gradually, I am trying to turn back the clock to a time when I knew nothing of ASD, DSM, SLP and other now habitual acronyms. I am re-learning how to listen, observe and not always try to “fix.” Not because I don't want to, but because it's just not always helpful for either of us.

We were also told that mindfulness means being compassionate to yourself. One of my handouts is a letter-sized page with very large type reading: Don't Should Yourself. It is hanging in plain view in my workspace.

In this moment… my son and I are both doing just fine.


"Mindful parenting is the ongoing process of intentionally bringing moment-to-moment, non-judgemental awareness as best one can to the unfolding of one's own lived experience, including parenting. Cultivating mindfulness in parenting starts with self-awareness." 

~ Jon Kabat-Zinn, Founder, Stress Reduction Clinic at the University of Massachusetts Medical School

Mymind research project at York University
Research Institute of Child Development and Education, University of Amsterdam


I love this piece. A LOT. (Louise, where do you find these fabulous writers??). Brava Janice.

I forwarded this to my friends who work in the autism assessment clinic so they can better understand the family experience. It is SO important for us to share these stories.

'Don't Should Yourself' - perfect. Also, 'You are Enough'....

So inspirational to hear this parent's words. I'm a social worker who also does mindfulness work with parents, and can't celebrate stories like this enough. How powerful mindfulness is for parents of kids with disabilities - and bravo to parents courageous to hit that pause button and "turn inward" and spend time with themselves, so deeply deserved! And with fantastic benefits for everyone. Loved this article. Sue Hutton mindfulnessway@gmail.com

I am one of those parents that accompanied Janice on our journey in MyMind at York University. It was an experience that we will ALL not soon forget! Like our children, Janice is painfully honest about parenting and how we take burdens upon ourselves. It is natural for parents of children with disabilities to take on so many roles to teach and protect them, that we somehow loose the unconditional, loving parent in the background. The parent that shares THEIR joys on THEIR terms and is joyful in that experience. Janice has put those thoughts and feelings eloquently into text. It takes a brave person to admit the ugly truth, but she is one of the few that admits to the reality of the challenges of living with and raising a child with special needs. Thank You, Janice, for being brave, sharing and admitting you are human. You are an incredible individual and Mom. .b