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Local network helps families affected by Fetal Alcohol Spectrum Disorder

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People afflicted with Fetal Alcohol Spectrum Disorder, and those who care for them, have enough to handle without also having to deal with the misguided notions that many have about the condition and the stigma that results.

That's one of the reasons that members of the Rural FASD Support Network will be heading to Toronto later this month to make a presentation to members of the provincial legislature at Queen's Park. It is hoped that the more people, particularly those in positions of influence, who better understand what Fetal Alcohol Spectrum Disorder (FASD) is, the more support will be made available to families dealing with the condition.

The Rural FASD Support Network provides advice, counsel and encouragement to more than 100 families and nearly 450 individuals from throughout Lanark, Leeds and Grenville, including some in the Prescott area. The group's membership includes not only those afflicted with FASD, both children and adults, but also those that care for them.

Many people have probably heard the term Fetal Alcohol Syndrome and have a vague idea that it afflicts those whose mother drank during pregnancy, but there's much more to it. The name of the condition was changed to Fetal Alcohol Spectrum Disorder to better reflect the fact that the affliction varies broadly in both character and severity, and the idea that FASD is due to wanton, irresponsible drinking during pregnancy is simply wrong.

"There's not a parent out there who deliberately chooses to do this to their child," says Rob More, co-founder, with his wife, Shelley, and four others, of the Rural FASD Support Network.

FASD results from the consumption of alcohol during pregnancy, and it is estimated that 85 percent of cases result from unintended pregnancies, which means a woman is entirely unaware she is pregnant during the period when alcohol consumption is most damaging. The remaining 15 percent of cases involve addiction and serious emotional problems, which make it difficult or impossible for the woman to abstain from alcohol.

The symptoms of the condition vary substantially but can affect the entire body and all aspects of function. Chiefly, though, FASD creates difficulties with learning and communication, disordered muscle function, sensory dysfunctions, particularly hearing loss, and emotional instability.

"There is an understanding now that there are a whole lot of different levels to this," says More, which is why the name of the disorder was changed from 'syndrome' to 'spectrum.'

Making sure that people at least understand what FASD is and appreciate the far-reaching consequences of the condition is a big part of what the Rural FASD Support Network hopes to accomplish with its upcoming trip to Queen's Park. That's also why the group recently invited MPP Steve Clark to one of its monthly support meetings. Clark readily agreed, but on the day of the meeting, he was unexpectedly called back to Toronto on government business and could not attend.

That wasn't the end of it, though. Clark's executive assistant attended the meeting in his stead and when he told his boss what the Rural FASD Support Network was all about, Clark offered to meet with representatives from the group at his office in Queen's Park.

"At the end of the meeting, Steve just said 'What can I do?'" More remembers.

The MPP was convinced that his colleagues had to be made aware of all that he'd just learned. He suggested that Network representatives make a presentation to members of the legislature and had them book a room at Queen's Park. Clark suggested it be booked for a Monday, when he knew there would be no committee meetings that would excuse his fellow MPPs from attending, and it was also booked for February, right after the legislature resumes sitting, so he could be sure all members would be back in Toronto.

Already, a significant number of the province's 122 MPPs, from all four parties, have committed to attending the presentation, and More is particularly heartened that the interest in learning more about FASD and what can be done to support those Ontarians dealing with it, has cut across party lines.

"The conversations are coming from all four parties in the province," he says. "We really don't want this to be a partisan issue. It's a societal issue."

The prevalence of Fetal Alcohol Spectrum Disorder in Canada is pegged at about four percent of the population, a rate substantially higher than Autism Spectrum Disorder, which has a prevalence rate of about 1.5 percent, and which has, with good reason, garnered significant attention in recent years.

The public sees the consequences of FASD pretty much every day - out on the street or in the news, but they do not realize it. It is estimated that about 25 percent of Canada's prison population is impaired by the effects of FASD, and an even greater proportion - about 33 percent - of the homeless are likewise afflicted.

More notes, too, that some estimates suggest many children in foster care may fall somewhere on the FASD spectrum. Unfortunately, FASD often makes it difficult for those afflicted to function in the same way others would and to interact with the world in a healthy way, which often leads to conflict, and sometimes to contact with the police. Quite often, such contact leads to a jail cell or, at best, a trip to the emergency room, but More is heartened by a new approach recently adopted by two local police forces that might just serve as a model for others to follow.

The Smiths Falls Police and the Perth detachment of the Ontario Provincial Police have partnered with the local mental health authority in the region to implement a program that will make police contact with those experiencing a mental health crisis, including those with FASD, more productive and less traumatic for everyone involved.

"This is a great model," says More. "It's a model we really want to promote."

A person with FASD can easily find himself backed into a corner, overwhelmed by a world that he can't handle, experiences he can't understand, and sensations felt so profoundly that they can not be processed properly. This can lead to fear, anger and emotional disturbances that sometimes lead to conflict.

"A mental health crisis is almost always due to a sensory overload of some type or an anxiety issue," says More.

Police in Smiths Falls and Perth are now equipped to recognize such people and better understand what's happening and how to deal with it. They also immediately call in a mental health nurse, who can not only help calm the subject but also begin evaluation and intake procedures so that if necessary, more formal mental health treatment can be provided.

It's this sort of practical and meaningful solution to the problems that those with FASD and their caregivers face every day that Network representatives hope they will eventually achieve through their advocacy efforts, including their presentation to the province's lawmakers at Queen's Park.

"When we meet with them, we want to start talking about solutions," says More. "We'd like to be able to move to another level in the conversation."

The presentation will consist largely of personal accounts by those dealing with FASD, both those afflicted and their caregivers. Upon hearing a few of these stories in his office, Clark thought this would be the most powerful testament to the need for more and better resources in the province.

"Steve has really given us some great advice," says More.

The second part of the presentation will be a panel discussion led by Lorena Crosbie, executive director of Children's Mental Health of Leeds and Grenville.

It is hoped that out of this presentation will come a willingness on the part of legislators from all parties to come up with a plan to increase awareness of FASD throughout the province and to make more and better resources available to families in need.

"If they could establish an overarching strategy that all of us locally could work with, that would be a game-changer," says More.

Given its size and the importance of its message, the Rural FASD Network has managed to make a great many inroads towards raising awareness of the condition and getting people with the power to make a difference talking about what more can be done, and the group is most grateful to the support it has received from the local community that has made it all possible.

The organization recently completed the lengthy approval process required to receive its non-profit charitable status, which it managed with much assistance from Children's Mental Health of Leeds and Grenville. The trip to Toronto has also been funded in large part by the Kids Brain Health Network and by the Smiths Falls Knights of Columbus, which donated a large sum of money to cover the group's expenses.

"We were completely blown away," says More, who says the group is blessed to have so many kind and generous supporters in the community.

More also singles out the Calvary Bible Church in Smiths Falls for its generosity. The church offered not only to host the Network's monthly support meetings free of charge, but they also paid for the group's insurance coverage and provided the recording equipment that enables the Network to live stream its meetings and guest speakers through Facebook, so that people from across North America can watch and take part.

"They took care of all the costs associated with the meetings," says More.

The support group meetings make it possible for the Network to provide welcome and much-needed support directly to those families who struggle every day with the effects of FASD and who simply can not do without the reassurance, encouragement and understanding that they receive from fellow members. The founders of the Rural FASD Support Network put a lot of thought into just how these meetings would proceed before finally adopting a peer-directed approach similar to that employed by Alcoholics Anonymous and also by the Canadian military in their treatment of those with PTSD, an approach that owes a great deal to the kind of communal support system that has been the hallmark of indigenous societies for centuries.

Those who attend tell their own stories and describe their own experiences and they pass on the wisdom they have gained from what they've gone through. The meetings give those involved not only a voice but a forum to let out what they may have long held inside and an opportunity not just for emotional succor but also to figure out practical solutions to everyday problems.

"Ninety percent of the time, when a question is raised, somebody has an answer," says More.

There is a great deal of optimism in the FASD community about the directions in which research into the condition is heading and the steps being taken towards a better understanding of the pathophysiology underlying the condition and what can be done to better treat it and make the lives of those dealing with it better.

It is expected that as awareness of FASD grows and more people better appreciate the effect it has on a great many people, there will be even greater interest taken by the medical community and research dollars will flow even more freely. Those with FASD need not, however, wait for a breakthrough to greatly improve their condition. Much can be done now, says More, to make life a great deal better for those afflicted by FASD.

"Positive outcomes are very possible for these people," he says. "This can get better."

More points to the much improved resources that have been made available in recent years for people with Autism Spectrum Disorder, made possible by a greater appreciation among the general public of the significance and prevalence of the condition, and More is enthusiastic about another such revolution in thinking and service delivery taking place.

"The exact same thing is possible with FASD," he says.

Anybody interested in learning more about the Rural FASD Support Network or about its monthly support group is invited to contact the organization at ruralfasd@gmail.com or join the group on Facebook at Rural FASD Support Network. More also suggests anybody looking for more information check out the websites canfasd.ca and fasdon.ca.

The support group meets on the third Saturday of each month, beginning at 10:30 a.m. at Calvary Bible Church, which is located at 8 Beech Street in Smiths Falls.

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