‘I want to be the spokesperson for FASD in Labrador’
© Bonnie Learning photo
Susie Schule (left) and her mother, Regula, want to spread the message that it is not okay to drink when pregnant.
For anyone who doesn’t know Susie Schule, it is hard not to enjoy her company.
The almost-42-year old woman is friendly, outgoing, active, and enjoys time spent with family and friends.
But her life could have had a much different outcome.
Susie — originally from Nain — was born prematurely to a mother who drank while pregnant. As a result, Susie displays many physical and cognitive impairments due to the Fetal Alcohol Spectrum Disorder (FASD) that she has lived with since birth.
But that didn’t stop her adoptive mom, Regula Schule, from falling in love with Susie the minute she met her.
“I was a teacher in North West River,” explained Regula, who had come to Labrador from Switzerland in 1968, working first in Makkovik before heading to central Labrador in 1972.
“She was not yet five years old, and the (staff) at the Infants Home said was too little to learn,” recalled Regula.
“Well, I was a special education teacher, so I said I would take her for a half hour after the other children had gone home to work with her.”
Regula soon realized Susie’s IQ — which was a big deal back in the 1970’s when it came to schooling and how successful one would be at it — was much less for the five year old then it should be.
“I remember she could say about 11 words at that point, which was what you would expect from a much smaller child,” said Regula.
“But she liked school and she stole my heart.”
Susie also remembers those early days.
“I remember my mom zipping up my coat, and I looked at her and said, ‘You pretty,’” recalled Susie, with a big smile.
Regula said it wasn’t too long after meeting Susie that she decided she would foster the little girl who stole her heart.
“Susie’s best friend had recently been taken into foster care, and I thought to myself, ‘What that (foster mom) could do, I could, too.’”
After two years with Susie, Regula formerly adopted her and the pair have been together ever since, settling in Happy Valley-Goose Bay in 1980.
‘Don’t hurt the baby’
Regula said it wasn’t until the following year after Susie was born that an actual diagnosis was made for her condition.
“FASD was only found out about in 1972,” said Regula. “Back in those days, expectant mothers did not know they were programming their children for failure in life, due to drinking while pregnant.”
But through the years, Susie persevered and in 1993, when living in Nova Scotia at the time with her mother, she graduated high school.
“I was very happy,” said Regula.
Susie has also learned to live with her limitations and just wants people to know that it is not okay for expectant mothers to drink alcohol of any kind, in any amount, at any point in their pregnancy.
She said she wants to be the ‘spokesperson’ for FASD in Labrador.
“(Mothers) should not drink,” she said.
“The baby might not be normal. Don’t hurt the baby, they will be like me.”
Susie said she wants to “tell the world” about FASD.
“Sometimes people point and laugh at me because I walk funny and they make fun of me and that makes me sad,” she said.
“But then I tell them, ‘This is how I was born.’”
Despite her rough start in life, Susie’s big smile and friendly demenour shines through.
“I want to go to school more. I like being on computer, listening to music and riding my bike.”
FASD Day & Conference
September 9th is International FASD Awareness Day.
It is held on this date to mark the ninth day of the ninth month, to remember that when planning to conceive — and during the nine months of pregnancy — woman should abstain from alcohol.
Dave Martin is the co-chair, along with Melody Morton-Ninomiya, of an upcoming conference on FASD called “FASD Throughout the Lifespan: From prevention to lifelong support.”
It will be taking place in St. John’s from Sept. 5-7 at the Sheraton Hotel and is a partnership between the fasdNL Network, FACE Research Association and Memorial University.
It is the first national FASD conference to be held in the province.
“FASD has been widely and inaccurately portrayed as an ‘Aboriginal issue’,” said Martin. “However, it is an issue that can impact any community where alcohol is consumed.”
Martin commended health and government organizations in Labrador for their proactive approach to FASD.
“There are currently four FASD coordinators throughout Labrador, whereas on the island portion of the province, there has been only one in the central region, through the assistance of a JCP grant.”
Martin explained the conference started out in the planning stages as a provincial conference, but after reaching out to FACE Research Roundtable, which is based out of Toronto, it went national, with 150 delegates registered (as of Aug. 27) from across the country and the United States.
Martin said there is a good number of professionals from Labrador attending the event from all regions, but also encourages anyone in the general public to attend if possible.
For more information on the conference, the sessions, and how to register, visit www.fasdnl.ca or call toll free 1-855-579-9073.