Teresa Hedley’s book, What’s Not Allowed? A Family Journey with Autism did not start out as a memoir; in fact, it did not even start out as a solo effort.
“This book didn’t end the way it started,” she said. “It started in Ottawa back in 2016, when a therapist invited eight of us to write a book.”
The book was to be a collaboration of eight mothers with children on the spectrum, discussing the trials and tribulations of having a family member on the spectrum, and explaining what works, for them.
“We worked on this for months and months, and it became apparent that it would be really hard for eight people to fit everything they wanted into one book, so …it evolved from a group project to a singular thing.”
Teresa’s son, Erik, was diagnosed as being on the autism spectrum 16 years ago, when he was six years old. The family lived in Comox at the time. Being a military family, they were posted out east, and eventually ended up in Ottawa, where Teresa regularly consulted with parents of families living with autism. That is where the collaborative book idea began.
The Hedleys moved back to Comox last year, finding that the bigger cities were not conducive to Erik’s comfort level. At that point, Teresa started working in earnest on her book.
“I hooked up with a publicist who said ‘yes, I see this as a memoir and I’d like to publish it,” explained Teresa. “So that’s how it evolved.”
Teresa said that while the book is a memoir, it’s full of information she says is useful to any families dealing with life on the spectrum.
“There are a huge amount of topics – all of those things that bombard you,” she said. “When I got the diagnosis, everything that went through my head – I was blindsided, but I shouldn’t have been. I write to all the little things that led up to it [diagnosis], all the little red flags that were there that I either didn’t see, or tried to deny. It’s a very emotional journey, when you find out your child isn’t exactly as you thought they were.”
She said the book addresses life in the military for a family member with autism.
“That’s really hard. There’s so much moving around in the military and for individuals with autism, change is hard. Transitions are hard. But that is the Armed Forces life, so we had to deal with it.”
The book addresses siblings and autism (Erik has a brother and a sister), speech, making connections.
“There are stories of laughter, stories with tears, hitting the wall and getting up again – it’s a very human story, which is why it had to be a memoir, and not a ‘how-to’ kind of book,” said Teresa. “I think people really need to see themselves in these stories, and they do – that’s what they are telling me. I hear ‘oh, that happened to us’ and ‘this is what we did.’”
Teresa said she and the family have always considered themselves to be very fortunate to have been living in Comox at the time of Erik’s diagnosis.
“It was a fortuitous time for us, because we were here. The Child Development Centre (now the Comox Valley Child Development Association) was fabulous – that was our oasis,” she said. I wrote about it for a magazine when I was in Ottawa, talking about this child development centre, because it really stood out. It was that good.”
Teresa’s book, which features a foreword by the renowned occupational therapist and public speaker, Kim Barthel, is available at Coles in Courtenay, the Blue Heron in Comox, Laughing Oyster in Courtenay, and online at amazon.com and chapters.indigo.ca
“Kim has been our mentor the whole journey,” Teresa said. “She is in the book in several places and she is one of the best things that has ever happened to us,” said Teresa. “I remember the first time Erik met her, she made him feel so good. He wasn’t even speaking that much back then, but after they met for the very first time, he said ‘Kim is a believer.’ He knew.”
Teresa said the purpose of the book was not to write a book, but more so to deliver a message.
“I think this book really helped me sharpen my intent,” she said. “I don’t do it for a book; I do it for a message. It’s kind of like handing out a catcher’s mitt. If we all know more, we will all be better. When we know better, we do better, and I think we can.”