Wednesday, March 30, 2011

FASD Listservs and Supports for Families

My son was diagnosed with Fetal Alcohol Syndrome in 1993, at the age of six. The doctors at the Hospital for Sick Children told us that Michael's brain had been damaged in his birthmother’s womb from the alcohol she drank during her pregnancy with him. 

We adopted our son when he was seven days old. Though he had ongoing health and behavioural problems ever since he was a tiny babe, we had no idea there was something physically wrong  causing the problems. The doctors at the hospital who examined him when he was born pronounced him healthy. Our family doctor, though aware of the many problems we were having, assumed Michael was just a highly energetic child who happened to have a series of health problems.

While it may be hard now to believe that people didn’t know the dangers of drinking while pregnant, that’s the way it was. Like cigarette smoking. People honestly didn’t consider smoking unhealthy until the U.S. Surgeon General spoke out about it in 1964. Doctors smoked. People smoked in restaurants, movie theaters, airplanes. You wouldn’t dream of asking someone in your home to go outside to smoke.

The same thing with alcohol and pregnancy. The general pubic, and even most doctors at the time Michael was born had no idea of the danger alcohol causes as it flows across the placenta into the womb. The first time anything about the syndrome showed up in the medical literature was 1973. For the next twenty years, not much was added to it.

Needless to say, there was little support for the families like us who had children with FAS (now referred to as Fetal Alcohol Spectrum Disorder – FASD) because so few cases were diagnosed, and general awareness of the disorder was minimal. Money and services were directed to supporting families with other issues, particularly Down Syndrome and autism.

The situation for FASD families hadn’t changed much until recently. However, slowly, governments and social service agencies have become more aware that nine children out of 1000 in Canada are born with FASD, the largest cause of mental disabilities in children. Right now, it is estimated that 300,000 Canadians (and their families), suffer from FASD.

I was delighted recently to receive an email from an FASD educator providing a list of “listserves” for people needing support regarding FASD issues. Such a list didn’t exist years ago. We parents were on our own finding help, support and services. But then FASD advocates like Teresa Kellerman, Bonnie Buxton, Brian Philcox and Diane Malbin came along and put FASD on the map. They are amongst the FASD pioneers.

There is still little financial support for struggling families, and much ignorance in the social service world about how to help individuals with FASD and their families. Alas. Yet health and social service professionals, along with the general public are becoming more aware of the dire, lifelong effects of FASD. We can only help that along with awareness will come concrete help.

In the meantime, let me share with you this excellent list of  sites that direct you to FASD support organizations and mailing lists to join for additional information. If you know of anyone who has a child with FASD or works with children or adults with the disorder, please pass it on. And to those of you with an FASD child, I wish you courage.

To any of you interested in learning more about FASD, I direct you to this excellent site.

FASD listservs 
(internet mailing lists and support links)

(for persons working in the field of FASD across Canada
 & internationally - news, articles, reports, events)

(for individuals, parents, professionals who deal with FASD)

Olderfas mail list
(support list for parents & mentors of adults with FASD)

(for FASD Ontario Network of Expertise and Ontario FASD committees & coalitions)

(support for Ontario families with children or adults who have FASD)

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