Fetal Alcohol Spectrum Disorder a heartbreaking disability

Sarnia’s Katie Paquette says she can’t understand why Canada has so few resources and no national strategy to help those who suffer from Fetal Alcohol Spectrum Disorder (FASD).

“There’s so little support available even though it’s one of the most difficult disabilities there is and probably the most prevalent,” says Paquette who grew up in a home where three adopted siblings had FASD.

Her sister Gina, now 31 years old, was diagnosed with FASD as a young child and, although Gina declined an interview, she agreed to allow Paquette to discuss her disability with The Sarnia Journal.

Fetal Alcohol Spectrum Disorder affects at least 4% of the population. That means in Canada more than 1.6 million people live with it.  It’s 2.5 times more common than autism.

Specific facial features like small eyes, a thin upper lip and smooth skin below the nose characterize about 10% with FASD.  The vast majority look normal.  However, their brain function is adversely affected because there’s a decrease in white matter and damage to the corpus callosum that impacts an array of cognitive function.

The result is varying degrees of difficulty with academic achievement, motor skills, language, memory, reasoning, recognizing consequences and an inability to care for themselves.

In Gina’s case, emotional regulation can be a challenge.  FASD makes her impulsive at times. It makes her unfocused and sometimes unable to think about the consequences of her actions.

The heartbreak is that FASD is 100% preventable, said Paquette.  It is caused by a pregnant woman drinking alcohol.  Even alcohol consumption at the time of conception can cause babies to be born with the disorder.

“Gina wants people to know that if you are drinking, have protected sex,” said Paquette who is a mental health counsellor with St. Clair Child & Youth Services.  “We know the impact of alcohol on the fetus. No amount is okay if you are having unprotected sex.

“The problem is that a lot of pregnancies are not planned. Women can be pregnant and not know it, but we know that FASD can occur very early in pregnancy,” she said.

Gina was five years old when the Paquette family adopted her. 

“She was so adorable, very chatty and a really engaging little kid,” said her sister.

“Often those with FASD have strong expressive skills and talk more than they think.”

Gina’s story is a positive one despite FASD, Paquette said.  And that’s because her parents sought early diagnosis at a London clinic and worked with Gina to help her manage.

When adolescence kicked in, Gina’s inability to control her temper and manage her emotions made it very challenging for a number of years, Paquette said.

As an adult with FASD, her impulsiveness makes it difficult to hold down a job for long. 

With a lot of support and accommodations, she finished both high school and a college program to become an early childhood educator.  She excels at job interviews because her verbal skills are very good and she is engaging, said Paquette.

“But Gina is very impulsive and she’ll quit her job suddenly or get into financial trouble because she’ll buy things and not have money to pay the rent.”

That’s resulted in some couch surfing and unpredictable living situations, but Gina has never lived on the street, Paquette said. 

“She’s made is through some really, really challenging times.  She is a very articulate, hilarious person and a real joy to be around.  But it’s not easy.”

Currently, Gina is not working but volunteers regularly at an animal shelter. 

“Her ability to volunteer every day means she is successful.  For Gina, given her challenges, she is doing well,” said Paquette.

FASD is a brain injury and cannot be reversed.  But early diagnosis and getting the right supports in place can help.

Sarnia-Lambton has few supports for families with FASD children,  but in 2018 the provincial government approved funding for one full-time FASD resource worker at Pathways Health Centre for Children.

That worker has about 80 clients and a lengthy wait list, says Pathways’ Karen McClintock. 

The Sarnia-Lambton Fetal Alcohol Spectrum Disorder committee – made up of families and a wide range of agencies that support FASD individuals – is working hard to raise awareness about the danger of drinking during pregnancy and to establish a local FASD diagnostic clinic.

“A clinic for this community is our dream,” said McClintock. “FASD is so underdiagnosed.”

While the resource worker at Pathways is swamped, those who suspect their child is on the Fetal Alcohol spectrum can self-refer to Pathways and receive information and training that can help.

Sarnia-Lambton’s FASD Network committee is hosting a barbecue on Wednesday, Sept. 11 from 4 p.m. – 6 p.m. at the Ex-Servicemen’s Club on Michigan Avenue in Point Edward.  The aim is to raise awareness and provide support.  All are welcome.