Guest Blog: Leading neurological issue in children remains widely ignored in Atlantic Canada

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One of our stakeholders in Nova Scotia wrote an opinion piece about the lack of services and supports for FASD in his province and across the East Coast. Read on to learn more! 

So here’s a riddle.

I am a neurological disorder that affects more children than Autism Spectrum Disorder, Cerebral Palsy and Down Syndrome combined. My impact on the brain can present as a wide variety of symptoms including delays in cognition, behavioural outbursts and inability to regulate emotion. I am seldom diagnosed, often leaving children with no answer to the question “Why am I different from all the other kids”? I hide in the shadows and can impact almost anyone. I have no cure, and if I occur in a family from Atlantic Canada, there is almost nowhere they can turn to for help.

What am I?

If, by now, you have not guessed the answer, don’t worry, you are not alone. Although conservative estimates place occurrence at approximately 4% of all births, although many other jurisdictions outside of Atlantic Canada have programs and supports in place for affected families, and although these supports greatly improve outcomes for impacted children; outcomes that include high rates of incarceration and suicide, it seems almost no one on the East Coast wants to talk about Fetal Alcohol Spectrum Disorder, or FASD.

FASD is easily one of the most common neurological conditions impacting children in our schools. In Nova Scotia, for example, with an average school population of approximately 300 kids, each building is attempting to teach a dozen students with FASD. Few, if any of these students are diagnosed, and thus few, if any, of the supports being put in place are appropriate for the condition. There is a major gap between what these kids need to succeed, and what they are being offered.

There are several factors contributing to this disconnect. The lack of dedicated diagnostic clinics plays a major factor, as does an absence of training for both educators and health care providers on FASD. However, it is the stigma attached to the condition that seems the biggest culprit.

As far as we know (to date, at least) FASD only occurs when a woman consumes alcohol while pregnant. That statement brings forward for many a clear notion of “What kind of a mother…” we are talking about here, and results in a somewhat shameful collective turning of our backs.

The problem with leaping to these particularly cruel (and often erroneous) conclusions is that they are predicated on a series of mis-informed assumptions. The mother must have known they were pregnant. The mother must have known the risks. The mother must have had a choice. The mother must have been poor. The mother must have…

We seem to be more than happy to list a series of blame statement “must haves” for mothers of FASD children. For whatever reason, we seem reluctant to add “must have support” to that list.

One group, however, is hoping to change that.

The Canada FASD Research Network (CanFASD) was established in 2005, and since that time has been offering services and programs for families affected by FASD right across the country. Operating as a not-for-profit, the organization has helped thousands of Canadians over the years live with the condition, offering support for families, training for teachers and information to both law enforcement agencies and health care providers.

They have also spent considerable time and energy lobbying provincial governments to join their network; efforts that here in Atlantic Canada have been, for the most part, unsuccessful.

It is in an attempt to rectify that service gap that the organization is sponsoring the Together for FASD conference in Moncton on June 9th. According to CanFASD director Audrey McFarlane, the event will hopefully generate some interest in starting the conversation about FASD in the region, and showcase the success of similar efforts in New Brunswick, the only Atlantic Province where a dedicated clinic exists to deal with FASD. There, the New Brunswick FASD Center for Excellence currently offers what McFarlane refers to as “gold standard” services to over 800 families, and to approximately 100 new families each year.

Although there are some limited services offered through the IWK in Halifax, McFarlane finds the lack of support outside of New Brunswick somewhat confusing. As a public school teacher, I must echo that sentiment. With a current enrollment of about 200,000, schools in Nova Scotia, PEI and Newfoundland and Labrador have approximately 8000 kids with FASD within their walls, the vast majority of whom are undiagnosed and unsupported.

Sending a policy maker or two off to Moncton on June 9th might not necessarily be the worst way for these governments to spend a relatively few taxpayer dollars. At the very least, it will help policy makers understand the overwhelming challenges these kids face and realize how far our schools are lagging behind the rest of the country in dealing with this disability.

Written by Grant Frost, Nova Scotia 

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