When Amanda Mollins Koene doesn't understand a a setting, her dad is there for support.
Mollins Koene has fetal alcohol spectrum disorder (FASD) and refers to her dad as her external brain.
For her, FASD makes it difficult to make decisions. Social settings are also hard.
"So I have an external brain, which is I go to my dad and he helps me out with that. But FASD has made it so that I’m always different from somebody else and it’s made school hard because, it’s like the saying if you judge a fish and a monkey on their way to climb a tree, then the fish lives its whole life thinking it’s stupid. That sort of thing. It’s really impacted my life by making simple tasks a lot harder and it’s just made me a lot more obstacles that I have to overcome,” she said.
Some of the obstacles, she said, are not understanding sarcasm, and being sensitive to high volumes of noise and light. She's overwhelmed when there are a lot of things happening at once.
She's learned how to deal with the obstacles.
Headphones help for the sound, and if she doesn't know if someone is joking or being sarcastic, she'll ask.
“Again, my dad is my external brain so if I don’t understand a setting or I if I don’t understand something, I can always go to him because he’s always there to support me. And so is my mom, my mom’s there to support me and they’re both my external brains,” said Mollins Koene.
At school, she said in the past two years there has been more help.
“And the school is adapting to the way I learn because I’m very visual and hands on, so I need to feel stuff and see stuff to understand it,” she said.
Sophie Dumoulin works at the Children's Treatment Centre, which she said partners with other organizations to raise awareness about FASD or train staff.
She said they are hoping to reach out to more individuals like Mollins Koene to let them know what kind of resources are available.
“It’s a very taboo kind of subject, it’s not easy to talk about drinking during pregnancy. It’s something that we want people to be a little bit more about talking about,” Dumoulin said.
This Saturday, Sept. 7 a walk is helping get the conversation started.
It's being held at Gillies Lake Conservation Area from 11 a.m. to 2 p.m. for FASD Awareness Day. People are asked to wear red to promote the visibility of people living with FASD.
The walk is hosted by the FASD Awareness Cochrane-Timmins (FACT) Coalition and Porcupine Health Unit. There will be a free barbecue and refreshments, walk around the lake, guest speakers, and kids' activities.
- With files from Rogers Media
