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Too few Canadians know the impact fetal alcohol spectrum disorder (FASD) can have, says Sarnia’s Katie Paquette.
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She’s a member of the Lambton FASD Network Committee formed in 2014 to increase awareness and prevention and build capacity in the community to serve individuals and families impacted by the disorder.
Paquette also grew up with parents who fostered and adopted children with FASD, including her sister, Gina, who is now 32.
“She is funny, amazing, loving, compassionate, and she struggled so, so much as a teenager with massive temper tantrums and massive behavior” challenges because of FASD, Paquette said. “She’s an amazing person with brain damage and it caused big problems for her.”
FASD is a diagnostic term for a range of effects that can occur in individuals prenatally exposed to alcohol leading to brain injury and a life-long condition. Its effects that may include physical, mental, learning and behavioral challenges, Paquette said.
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September is Fetal Alcohol Spectrum Disorder Awareness Month and the Lambton committee is inviting the community to a barbecue at the Point Edward Ex-Servicemen’s Association on Michigan Avenue Sept. 11, 4 pm to 6 pm
Prenatal alcohol exposure is considered the most common cause of developmental disability in the western world, yet “not a lot of people are aware of FASD,” Paquette said.
A “conservative estimate” is that four per cent of Canadians have FASD, making it more prevalent than autism, cerebral palsy and Down syndrome combined, she said.
One of the results of the current lack of awareness is “the message isn’t out there that if you plan to have a baby, you need to not be drinking,” Paquette said.
At the same time, the risk exists for those not planning to have a baby but who drink and have unprotected sex, she said.
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FASD is a spectrum, ‘and people are impacted in so many different ways,” Paquette said.
“One of the biggest impacts of FASD” is on “the ability to attach consequences to behavior in advance,” she said.
“It’s severe impulsivity and it’s almost like a car driving without brakes.”
“It takes a ton of work in order for people with FASD to pause before they act, and lots and lots of repetition and training.”
There are facial features associated with FASD but only about 10 per cent of individuals impacted have them, Paquette said.
One of the Lambton committee’s goals is to see a diagnostic hub for FASD established in Sarnia.
Getting a diagnosis is currently complicated and a local diagnostic clinic could ease the process for families, Paquette said.
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“Kids with FASD need more supervision,” she said. “They need more hands-on support.”
Unfortunately, a diagnosis currently “doesn’t open up a huge amount of support, as far as funding or resources,” Paquette said.
“So, there’s some serious work to be done” to advocate for that support, she said.
“It is very difficult parenting people with FASD and there needs to be respite and services” but “they aren’t offered, always,” Paquette said.
This year’s FASD awareness theme is “everyone plays a part,” she said.
“Every single person in our community can make a change to support a society that is both supportive of people with FASD and supportive of healthy pregnancies.”
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