An inaugural Red Shoes Rock — a Walk For FASD — was held Friday, Sept. 9, in Cranbrook, to shed light and raise awareness of the disability, still so little understood.
Fetal alcohol spectrum disorders (FASDs) are a group of conditions that can occur in a person who was exposed to alcohol before birth. These effects can include physical problems and problems with behavior and learning. Often, a person with an FASD has a mix of these problems. FASD is the most common neuro-developmental condition in the world, yet it is widely undiagnosed, underfunded and misunderstood.
However, with support and determination, and understanding, those with the disability can overcome challenges to accomplish great things.
The event was organized by Dawn Mueller, an FASD keyworker with Axis Family Resources in Cranbrook.
“There are still so many misunderstandings about about the disability — even with people who educated [about it], they don’t have enough awareness, because it’s such an invisible disability,” Mueller said.
“As you saw with our speakers today — they very capable, intelligent, achieving individuals; yet they have so many struggles they have to go through to get there.
“The more people we have speaking up and shining a light on it the less stigmatization there will be.”
In Cranbrook on Friday morning, Sept. 9, participants in the Red Shoes Walk gathered at Western Financial Place and walked through downtown for a breakfast gathering at Rotary Park.
Guest speakers were on hand to share powerful and illuminating stories about their lives with an FASD diagnosis, not least having to struggle against the stigma of FASD.
Makayli Wilkinson, 20, shared her story, including her mother’s troubled life, her brother’s suicide (he also had FASD), and her experiences of “people using [the fact she had] FASD against me.”
“I was exposed to drugs pre-natally. There were so many doubts about me, and I wasn’t even born yet.”
Makayli was adopted at birth, and later diagnosed with FASD, ADHD and anxiety. She spoke of her struggles growing up. But she shared how she overcame challenges, with the help of her adoptive mother, when she decided “to stop hiding who I am.”
After the devastation of her brother’s death, her mother helped get her into counselling, which “flipped my life around. I learned to be grateful, and to be aware.”
Makayli graduated from High School at 17, and went to college for Equine Science.
“I now think with my head and my heart, and feel ready to face the world.”
Sebastian Gylander, 18, was diagnosed at age six with FASD. Both his parents died at an early age, and he was raised by his grandparents. Growing up, he faced bullying, physical violence like getting hit, and exclusion because of his affliction and the way it affected his appearance and behaviour. But with support, he also overcame these challenges. Sports became an anchor for him, especially skiing. He learned to drive, which gave him greater independence.
“Just because I have FASD, that doesn’t stop me from achieving my goals,” he said.
Dona Gylander spoke of the challenges, and rewards, of raising a child with FASD. She and her husband educated themselves and advocated for Sebastian and others with the disability, especially in the school system. Donna helped bring in a Professional Development Day for teachers, focusing on FASD. With the help of a key support worker, she worked with teachers to help them “understand her son’s brain, and other’s like him.
“Raising our son has enlightened and enriched my world in ways I didn’t think capable,” she said. “Every step of fighting to get his needs met has been worth it.”
Dona’s message to advocates was don’t take no for an answer. “Fight to get your child’s needs me,” she said. “It works.”
Mueller said afterwards the event went even better than she expected, and she hopes would be a second annual Red Shoes Rock next year.
“We had a great turn-out, and a lot of people spreading the awareness. That is exactly what I was hoping for for the walk — that the community would be able to get together and we could shine a light on this hidden disability.”
A free hot breakfast was provided by ANKORS and information tables from Community Connections, ANKORS, Ktunaxa Kinbasket, CMHA and East Kootenay Child Care resource.
As well, all participants were asked to write down their “superpower,” and with these, an “Empowerment Tree” was created that is currently on display at the Cranbrook Public Library.
Parental advisors in Canada and the U.S. started an FASD awareness day some years ago, choosing the ninth day of the ninth month to mark going alcohol free for the nine months of pregnancy. Since then it has become a global event.