I’d like to start today’s column off with a little bit of trivia.
First question: What condition affects one out of every twenty five people in Nova Scotia?
Second question: Which developmental disability has a higher incidence rate in our province than autism, Down syndrome and cerebral palsy combined?
Question number three: Although impacting at least 4% of births, which developmental disability goes largely untreated and hugely misdiagnosed?
If answered Fetal Alcohol Spectrum Disorder (FASD) to all three of these, you are correct. However, if you did not know the answers, don’t fret too much. Despite its prevalence, FASD remains one of the least known, least understood, and least talked about disabilities in our province.
This is undoubtedly due to the stigma attached to the condition. FASD is a neurodevelopmental and whole body disability that happens when a child is exposed to alcohol in the womb. Thus, society is generally highly critical of mothers of children with FASD, passing judgement on them for having consumed alcohol while carrying a child.
What is missing from this condemnation is a recognition of how many pregnancies are unplanned, and how many go weeks, if not for months, before being detected. A great many couples have gone out and about their everyday lives, enjoying a few glasses of wine with dinner or few beers around a campfire, completely oblivious to that fact that their family is about to expand.
Not only does our society openly accept alcohol use as part of our general make up, alcohol producers themselves have gone out of their way to target women as consumers. Women today, particularly women of child bearing years, face more pressure than ever to drink.
When one combines rates of unexpected pregnancies with late detection methods and high pressure, targeted sales tactics, it is little wonder that of the approximately 8100 children born in Nova Scotia last year, 325 of them were likely born with FASD.
Sadly, when it come to FASD, Nova Scotia, as a province, is woefully bereft of resources. Unlike neighbouring New Brunswick which boasts a world class facility, we have limited diagnostic capability for the condition, even fewer educational resources for those who work with these children, and little in the way of support for these families.
There is, however, at least one place folks can turn to, thanks to a group of dedicated volunteers.
Fetal Alcohol Nova Scotia (FANS) was founded in 2023 by a group of like minded individuals whose lives had been impacted by FASD. Inspired by personal experiences and by working within the FASD community, the group has set out with the goal of both supporting Nova Scotians living with the condition and raising awareness about FASD within the broader population.
Having partnered with multiple national and international agencies, the group has gathered an impressive array of resources on its website (www.fasdns.ca) including information on everything from diagnosis, to prevention, to how to live with the condition. The group has also created a one-of-a-kind virtual support group for families impacted by FASD, and also offers in-person family days to help foster a sense of community.
Another key initiative of the group has been the arranging of a series of conferences around the province that focus on FASD issues. These one day events offer presentations from a variety of experts, including health care professionals, educators, and individuals living with the condition. The group’s next event, “Connect. Correct. Next Steps” will take place in Halifax on November 8th. Speakers will include Audrey MacFarlane, the executive director of the Canada Fetal Alcohol Spectrum Disorder Network (CanFASD), and Annette Cormier, from the New Brunswick FASD Center of Excellence.
I first began writing about FASD back in 2022, and since that time, have watched with significant interest (and no small modicum of admiration) as the volunteers of FANS have worked tirelessly towards their goal of improving the lives of those living with the condition. And although they have made tremendous strides in these efforts, it strikes me that this group should not be the only one working towards addressing FASD.
Let’s put it this way. If you know twenty-five people, you probably know someone living with FASD. If you coach twenty five kids, you probably have someone on your team living with FASD. If you teach in a class of twenty five students, you probably have at least one student in that room who is living with FASD.
Now ask yourself how much you know about the condition.
Government and industry both make huge profits off the sale of alcohol and its associated taxation. It’s well beyond time they took some responsibility for the collateral damage these profits cause.
The establishment of a provincial task force to examine the issue seems more than appropriate for a condition that impacts 325 children each year.
I’m sure the folks at FANS would be more than happy to partner with anyone willing to get that particular ball rolling.
Originally published in the Chronicle Herald, October 30, 2024
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