Lauded by autism leaders and practitioners as “relatable, insightful, joyful and inspiring,” What’s Not Allowed? A Family Journey with Autism tells the tale of Erik from womb to emerging adult. Written with compassion, humor and keen observation, we are taken inside the shoes of autism and invited to link arms with the Hedley family as they nurture Erik from boy to man.
I am always hesitant to read books written by a parent dealing (or coping) with their child’s battle with a medical or mental health issue. While some are very well-written, others are exhaustive journal-type reading. Fortunately, Teresa Hedley is a very good writer, and she intuitively knows how to engage readers in a subject. Let’s take a closer look at Ms. Hedley’s book.
Erik is the second child in the Hedley household, a couple of years behind their first child, Scott. It is at about two years of age that little Erik points at a sign and utters the question that gives this book its title.
APPROACHING YEAR TWO, OUR LITTLE blond boy starts to develop quirky interests.
We are strolling along at the park behind our house one after. noon, and I hear it before I register it: a coherent question coming from Erik, not Scott. A little stilted voice pipes up and asks, “What’s not allowed?”
I whirl around, astonished, and observe Erik pointing to a sign on a nearby post. It is a series of circles with red slashes through them. No littering; no loitering; no skateboarding. Up to this point, we have heard variations in “dats” plus a few murky words. But this! This is an entire question, straight out of nowhere! And I understand what he is saying. He is pointing at this sign; he is animated, and he is asking what it means.
I feel a release, the sort of reaction that takes you by surprise because you don’t realize the brakes have been on for a very long time. I have been waiting for this—for what, exactly? For the birdie to try his wings—willing it to fly? Today it has. And I want everyone to know. Erik is unfurling! My almost-two-year-old is observing his world, taking it in and trying to make sense of it.
So begins Teresa’s journey with Erik and his eventual diagnosis as “autistic” which she considers a label, and a word she didn’t want her Erik saddled with throughout his life.
There are also selfish thoughts. I have no choice but to be front line. Part of me wants to be a second-line troop and return to teaching and simply observe Erik, once removed, made better by others. But I cannot. Frank has the primary career; I need to be there for Erik. I am Erik’s mother, and as such, I wear his other shoe. I am walking Erik’s walk, and I am his first responder, his lifelong teacher. I am Erik’s translator and spokesperson. I am his anchor, and ironically, he is also mine. By default, we seem to be inseparable, puppet and puppeteer.
My friend Sarah will later suggest that, big picture, I, too, am a puppet: I work Erik’s controls but ultimately, autism controls me. Autism is two way. Buddha’s hands speak the truth.
I suppose what I really want is a choice, not a foist. But this is part of the motherhood package, and I have heard that we are given exactly what we can handle. In taking on this diagnosis, I am becoming more of who I am. I heed the call to step up and step in.
It is simply astonishing as to the limits Ms. Hedley is willing to go to to get Erik educated, even to the point of battling with educators that didn’t want to help Erik in any way. She really “steps up and steps in”!
What’s Not Allowed is yet another inspiring book from Wintertickle Press which continues to publish books dealing with acts of kindness in the early days of the Covid pandemic, and PTSD and addictions in the first responder’s profession, just to name a recent few that have been reviewed here at TMR. If you or a loved one is dealing with the “autistic” label, then you or they will glean many moments of inspiration and practical advice from Ms. Hedley’s and Erik’s experiences through the years. Five stars!
About the author: Teresa Hedley is a mother of three young adult children, one of whom Erik, has autism. She is also an educator, a curriculum designer and an author. As a teacher-trainer, Teresa taught English in Canada, Japan, Greece, Spain and Germany Later, as an armed forces family, the Hedleys lived coast to coast in Canada. Aiming to build resilience in families living with autism, Teresa and Erik co-wrote a twenty-article series for Autism Matters magazine, “I Have Autism and I Need Your Help.” Additionally, Teresa worked directly with families and school boards in Ottawa as an autism consultant and advocate. In collaboration with the Family Education Centre, she co-designed an interactive online parenting program, Pathways to Potential: Parenting Children and Youth with Autism. What’s Not Allowed? A Family Journey with Autism will be followed by the What’s Not Allowed? Companion Toolkit filled with practical strategies, insight and inspiration for the autism journey. Teresa and her family live and play on Vancouver Island.
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