No matter where one lives in this great land of ours, the end of August is almost always accompanied by a palpable change in the air. Whether in the cities, or the towns, or the countless hamlets that dot our landscape, this time of year is inevitably accompanied by a general increase in the overall rumble and hum of everyday life that can only mean one thing.
That annual mass migration known as “back to school” is underway.
For many families, this is a time of excitement and anticipation. There is a reassurance of a return to routines and a sense of optimism about what the year will bring. However, for the families of one particular group of children (a group that estimates suggest number in the thousands here in Nova Scotia), September also comes with a strong sense of unease.
That is because they have a child who is living with Fetal Alcohol Spectrum Disorder, a condition that reduces a child’s capacity to follow rules or understand consequences. For those families, the upcoming school year can be a time of great uncertainty, filled with nervous anxiety of that first phone call home.
Fetal Alcohol Spectrum Disorder (FASD) occurs when a child is exposed to alcohol while in the womb. It is one of the leading neurodevelopmental disabilities in Canada affecting 4% of the population, more than autism, cerebral palsy and Down syndrome combined. It comes with a host of issues, which can include reduced impulse control, inability to regulate emotions, and a lack of understanding of the connection between action and consequence.
Although schools do their best to support all students, FASD children are often misdiagnosed, if they receive a diagnosis at all, so supports may be ineffective. Once these children leave school those support systems often completely disappear. Without these systems, adults living with FASD experience high rates of incarceration, addiction and most tragically, suicide. In fact, studies have shown that the standard life expectancy of an adult living with FASD is only 34 years of age.
It is no wonder, then, that parents who are aware their child is living with FASD may have a slightly different perspective on this time of year.
I write “parents who are aware” intentionally. A great many people who are living with the reality of FASD do not know the condition exists, let alone that it is present in their home. They may have a child who is acting out in school or struggling with emotional regulation and have no idea of the cause.
This is part of the insidiousness of the condition. Obviously, the vast majority of families understand the risk of consuming alcohol once they become aware of a pregnancy. The sad reality, however, is that many pregnancies are unplanned, and many go undetected for weeks after conception. Since there is no amount of alcohol consumption that is considered safe for a fetus, even casual drinking in the weeks before a pregnancy is discovered can have long term effects.
A further complication to this issue lies within diagnosis. There are very few diagnostic options for FASD children available here in our province. Experts in the field are few, waitlists are long, and information on supports very hard to find.
All this leads to a tragic set of circumstances. Lack of understanding, scarce diagnostic options, and few resources limit the number of positive outcomes for these kids.
Starting this September, one group of local advocates is going to try and change all of that.
On September 8th and 9th (to coincide with International FASD awareness day) a grassroots organization calling itself Fetal Alcohol Nova Scotia (FANS) is hosting the “Connect. Correct. Reflect” conference in Truro. The event is an opportunity for individuals and organizations to “hear the voices of experience and of experts” on the topic of FASD, and to raise awareness of the condition.
Conference co-organizer and FANS founder Allan Mountford hopes the event will “get the ball rolling” on a more public conversation about FASD. “We want to eventually convince government to develop a provincial strategy around FASD,” Mountford says “which should include improved diagnostic capabilities and support for families.”
The conference will feature a mix of speakers including Mountford, who was part of a similar movement in Ontario before recently moving to Nova Scotia. He will be joined by Dr. Robert McInerney, an FASD expert out of Halifax, and Francis Perry, an adult living with FASD.
Outside of organizing the conference, FANS has been busy in other areas as well. From the Big Fiddle in Cape Breton to the Cape Forchu lighthouse in Yarmouth, from the Welcome to Nova Scotia sign at the New Brunswick border to the lighthouse at Peggy’s Cove, many landmarks, including the Bluenose II, (albeit virtually) will be lit red on September 9th to draw awareness to FASD. (The colour red has come to be associated with FASD since 2013 due to a campaign known as “Red Shoes Rock”.)
In the name of full disclosure, I have been lending a hand to FANS, but that has primarily been in a supporting role. The heavy lifting has been done by Mountford and by two mothers of children living with FASD. If I may be allowed a moment of personal privilege, the passion that these individuals have brought to the table has been nothing if not awe inspiring. They are legitimately moving mountains to draw attention to the prevalence of FASD, and, perhaps more importantly, the lack of supports available.
That is probably the one thing that has stood out for me since I started writing about FASD. The more advocates I talk to, the more parents I interview, the more I come to understand the herculean effort that is required to enact change in this area. In many cases, getting governments to take meaningful action on FASD has taken decades of advocacy.
We know that with appropriate diagnosis and support, the outcomes for people living with FASD and their families can be exponentially improved. The children sitting in our classrooms can thrive, and their future can look much, much brighter than a life expectancy of 34 years.
Without those pieces in place, however, the outlook will not change. FASD kids will continue to struggle with learning. FASD adults will continue to struggle with life. FASD families will continue to suffer with loss.
Changing that reality in our province should be a much higher priority than is currently the case.
Originally published in edited form in The Chronicle Herald, September 5th, 2023
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