Williams Lake residents Ed and Midori Kozuki are hoping their new book offering a glimpse into life raising a child with autism will create hope for other families facing a similar situation.
Raising Janis, written by Ed and Midori Kozuki, as told to Cariboo author Heidi Redl, shares the story of new parents Ed and Midori’s lived experience parenting their first-born daughter, Janis.
Janis was born on July 12, 1965 and was the first of three children for Ed and Midori. Janis’s sister, Kim, was born in 1968, followed by brother David in 1971.
When Janis was diagnosed with Autism Spectrum Disorder (ASD) in 1968, little was known or understood about the condition. The Kozukis were initially told Janis would need to be institutionalized. As young parents, they were terrified, however, adamantly refused the doctor’s recommendations, opting to do everything in their power to raise Janis on their own.
What lied ahead was a road filled with courage, perseverance, triumph, hope and love, despite encountering setbacks and stumbling blocks along the way, as the Kozukis described it.
“It’s really a story about how the community all banded together to try to make a good outcome,” Ed told the Tribune. “But it’s not just our story. It’s stories about all the other people who had connections with Janis, and we just wanted to share our story with other families to give some hope — that there can be a happy ending.”
Shortly after Janis’s birth, the Kozukis, in speaking with other new parents, started to notice Janis was failing to meet certain “milestones” other parents were sharing with them.
“We were brand new parents. You don’t know everything. But we recognized her development was occurring, but when it came to actually doing something she would sometimes have a difficult time,” Ed said.
For example, Midori said when Janis was young, she refused to hold onto a cup until the age of three.
“Finally, one day she picked up the cup and just drank from it,” Midori said.
Janis also didn’t walk until she was 17 months old and, as Midori explained, surprised everyone one Christmas morning when, while Midori was talking on the phone with a friend, suddenly saw a little, red, velvet dress go scooting past her.
Janis also didn’t speak at all at a young age, however, her intelligence was never in question.
In October of 1969, Janis, Ed and Midori visited Woodlands Institution in Vancouver for a half-day assessment.
Woodlands Institution was opened in New Westminster in 1878 as the Provincial Asylum for the Insane, and was presented as a modern approach to treating ‘lunatics’ and the ‘feeble-minded,’ however, was closed in 1996 as part of a modern move away from institutionalizing those with intellectual disabilities.
After refusing to institutionalize Janis, Midori, with help from the Youth Development Centre in Burnaby, began a language program with Janis three times a day for a year while at home which, after plenty of long days and hours of instruction, began to pay off as Janis eventually learned to speak.
Later, upon hearing about a place called the Laurel House Society — an organization that helped families with children with autism and ran numerous programs and a residency in Vancouver — the Kozukis spent the next 15 months travelling to Vancouver every weekend after Janis was accepted to live and learn with experts at the centre.
When Janis came back to live with her parents in Williams Lake at the age of seven and began attending Cariboo Adventist Academy, Raising Janis shares how the entire community — teachers, caregivers, the Williams Lake Community Living Association, volunteers, friends and family — stepped up to help create a good outcome for all involved.
Janis, now 55 years old, is extremely artistic and has several hobbies including quilting, creating origami, colouring, drawing and other arts and crafts. She enjoys being independent, and also cooking her own meals with a focus on healthy living and eating.
The Kozukis’ determination to carve out their own path throughout also proved to be on the cutting edge of modern treatment options.
“We’re quite happy with how things turned out for Janis,” Ed said. “She’s able to realize life the best she could be and that’s all you can ask for anybody.”
Midori said she knows other families are going through the same struggles they did.
“Everyone has value, and they can achieve their worth to the highest level with patience and understanding and with the help of the community.”
Ed and Midori think Janis, through her interactions with Williams Lake residents over the years, has also opened a lot of eyes.
“There’s more than one way to see the world,” Ed said.
Janis designed the cover of the book — a hand-drawn and coloured quilt — and knows there are plenty of pictures of her and the family inside, Midori said, however has not yet read the book.
The book is available for purchase at The Open Book, or by contacting the Kozukis at 250-392-5791.