Having a support group is crucial, say two women who are raising children with Fetal Alcohol Spectrum Disorder (FASD) in the Williams Lake area.
These two women — Anna and Gisele — who do not want to be identified by their real names to protect their adopted children, are part of a support group facilitated by the Cariboo Chilcotin Child Development Centre. This support group meets regularly.
Anna and Gisele also belong to a Facebook group called Speaking FASD.
“You cannot be isolated,” Gisele said. “You have to have a support group because no one else would or could understand what you are going through.”
“Because FASD never goes away,” she added, “it is the caregivers who have to adapt and change.”
Both women said their home and social lives have been altered completely. Children have that effect. Part of the adaptation has meant maintaining structured lives for their children and using simple language when talking with them. You see FASD children understand words but not concepts.
Anna said, “They could read an entire article in the classroom but when the teacher asks them a question they get angry and storm out of the room because they don’t really comprehend what they have read.”
“They are also very skilled at covering up the fact that often they do not understand things. You could ask them if they understand, they will say they do, but they don’t really,” Gisele said.
A few days before the interview, Gisele’s husband told their son new children had moved into their neighbourhood. He told their son he would have to show the new children the ropes when it comes to catching the school bus.
“Right away you could see the wheels turning in his mind,” Gisele said. “He was trying to figure out where the ropes on the bus were.
As parents of FASD children they have to keep a sense of humour to survive, but there are some heartbreaks as well.
Gisele admitted her adult daughter has never been invited to a birthday party.
Her sister, who was equally affected by FASD, was invited to one once, but she ate 12 hotdogs and was never invited again.
One time Gisele was called into the school because her daughter was eating all the fruit from a bowl on the teacher’s desk. The school suggested her daughter was not getting enough to eat at home and was starving.
“I told them she does not know when to stop eating and asked them to put the bowl away,” she advised.
Shel Myers works with FASD families through the CDC and said, “Those are prime examples of what happens because the parts of their brain that interpret signals are broken. They won’t know if they are hungry or full,” Myers said.
Anna said her daughter is the “queen of rules,” yet would think nothing of breaking them herself. She would tattle on someone else for budging in line, but would not think it was a bad thing for her to do.
“There are many physical things that can impact an FASD person also,” Gisele said. For instance, 50 per cent of FASD children have heart murmurs. Their teeth come in later and they can be quite small in stature. Anna also said her daughter enjoys chaos.
“She cannot just be still, something always has to be going on,” she said. “As a teenager she never slept, now in her 20s she sleeps a lot.”
“Stages of development are never normal either. A 12-year-old is like a six-year-old and a six-year-old is like a three-year-old,” Gisele explained. “It’s hard with activities. Our 16 year old likes Disney movies. She doesn’t understand the subtleties in mature movies or that they aren’t real.”
One of her daughters went from being a star at a Sunday school where she could pray and sing wonderfully, to lasting one week in high school before she was expelled because of her behavior. “At the Sunday school she emulated the teacher, while at the high school she had no one to emulate,” Gisele said. Raising FASD children for decades has been a big commitment, but it is rewarding, they both said.
“They are amazing and I love them,” Gisele said of her FASD adopted children. “They all have strong things about them. They can be the best artists or musicians. It’s about finding out what they are good at and not worrying about the rest.
Our job as parents is to support the children and advocate for them in every situation,” she concluded.
Gisele later met a woman who was not diagnosed with FASD until she was an adult. When she asked if the diagnosis made a difference the women told her “It explains why I just muddle through my life.”
If Anna ever gets to a point where she feels like she wants to give up, she says she just has to put herself in her daughter’s shoes. “I stop and realize that I cannot imagine living in this world in her brain,” she said.
People need to know that FASD is completely preventable. Do not drink or do drugs while you are pregnant.