A forum for comments on FASD, sharing, life challenges, politics and other things that bother us. By GrampaBrian, FASD Advocate (AKA Brian Philcox)

Posts tagged ‘fasday’

FASworld: The Reason Why

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In January of 1999, while digging out from Toronto’s mind-boggling snowstorm, Bonnie and I realized that on Sept. 9, a lot of 9s would come together. What a way to remind the world of the dangers of alcohol in pregnancy. “What if, on the ninth minute of the ninth hour of the ninth day of the ninth month of 1999, we tell the world that a woman should avoid alcohol during the nine months of pregnancy.”

Because FASD (Fetal Alcohol Spectrum Disorders) is the most common, most expensive, yet most preventable mental disorder in the industrialized world, we knew that this condition needed to be brought to the attention of professionals, parents and opinion leaders. Health Canada acknowledges that FASD affects at least one in a hundred live births in North America. Many knowledgeable clinicians and diagnosticians, like Sterling Clarren, believe the number could be as high as 3-5%! This makes FASD bigger than all the “Diseases of the Week” put together. According to Toronto Public Health, the cost of supporting Canadians with FASD is about $6.2 billion annually.

So, how would we get this message out to the rest of the world? Bonnie phoned our colleague, the brilliantly creative Teresa Kellerman in Tucson, a pioneer advocate, who had the communication smarts to make this idea take off. Thus, Teresa created the ‘how to’ web pages and we created a symbol – the FAS Knot. And the rest is history.

That first FASDay (officially Fetal Alcohol Spectrum Disorders International Awareness Day), thanks to the internet, there were over 80 communities who joined us in their own unique ways. Volunteer groups from towns and cities across Canada, the USA, Australia, New Zealand, South Africa and Europe were among those original supporters.This year, the 16th FASDay was observed in over 42 countries representing every time zone around the world.

Support groups, NGOs and government youth and health agencies are working together to bring the message of hope, joy and love to parent and professional alike. A few years ago, NOFAS-UK under the direction of Susan Fleisher, created a flash mob event called the Pregnant Pause. volunteers gathered at London’s Victoria Station, wearing balloons under their shirts and took on freeze poses for 90m seconds at 0909 on September 9. FASworld has adopted this great concept for five years now at our own Pregnant Pause event in various locations in central Toronto.

Our latest FASDay event was the Pregnant Pause Scramble at Yonge & Dundas Streets with close to 100 men, women and children wearing our blue and white “Pregnancy & Alcohol Don’t Mix” t-shirts with balloons strategically stuffed inside. From 0845 to 0915 we strode through this busy downtown intersection whenever the the all direction scramble light allowed with our “Baby Bump” placards held aloft.

This year’s FASDay coincided with our major collaboration with the Liquor Control Board of Ontario (LCBO) which has adopted the FASworld Baby Bump Campaign by featuring its message in each of their 647 stores across Ontario. We are convinced that this partnership has enabled us to garner coverage by the print and broadcast media for the first time in 15 years. The LCBO went all out to train their staff in every store so that they would understand the purpose behind the Baby Bump Campaign and to reassure their clientele that avoidance of alcohol during pregnancy was an official policy of the world’s largest distributor of beverage alcohol.

The Baby Bump Campaign has proven popular with other organizations as well. MOFAS in Minnesota has licensed the campaign for a saturation program in their state using outdoor, print, mall and broadcast promotion to great effect. We are convinced that this positive and upbeat approach to communicating the importance of avoiding alcohol in pregnancy is adaptable in most languages and has a life for many years to come.

Could this be the end of the beginning? After all, we only wanted to change the world, one baby at a time.

FASworld Canada is the Canadian affiliate of NOFAS (National Organization on Fetal Alcohol Syndrome) based in Washington DC and was this year’s recipient of the NOFAS Leadership Award.

FASD & Society’s Children

When Bonnie and I adopted a three year-old blond tomboy, we never realized what an amazing journey she we lead us on. It was she who led us into the strange world of FASD (Fetal Alcohol Spectrum Disorders) and we know we’re going to be here for the duration. Working with other parents whose children struggle with FASD has given us insights into the anguish, the agony , the pride and the generosity of a cross-section of the most amazing parents you could ever encounter.

Our FASworld Toronto support group meets monthly at The Hospital for Sick Children and there is a never-ending confidential sharing of triumphs, trials and strategies. Our major concern is the inability of the establishment (schools, faith groups, social services and governments) to understand the devastating struggle faced by families trying to keep their children with FASD in school and out of jail. Many policymakers, teachers and police assume that our children have normal brains. They don’t, and here’s why. When a pregnant woman drinks alcohol, the teratogenic effect disrupts the neuropathways of the developing brain of the fetus.

The affected child will grow up with a mosaic of disabilities: poor memory, impulsivity, inability to predict consequences, inability to learn from experience and, often a lack of an ethical centre.

This individual will usually drop out of school early, start using substances to try to feel normal and have many interactions with the justice system. He or she will have difficulty with abstract subjects, managing money and fulfilling commitments. Some custodial workers and supervisors of prisons have told us that at least 80% of the inmates in their care struggle with some form of FASD. At the rate of $110,000 per inmate per year, that’s a hefty penalty for society to pay for maternal drinking in pregnancy. Add the expense of special education, welfare and other social services, and we see a lifetime cost of at least $2 million per affected individual.

Health Canada estimates that 1% of all newborns are affected but that may be too conservative. That  figure suggests we have over 300,000 Canadians struggling with FASD today. These costs are equivalent to the entire national debt. Our federal government has determined that we should be “tough on crime” by expanding the prison system and have mandatory sentences for certain crimes. That will certainly keep our prisons overflowing with our alcohol affected youth and adults who will come through that experience as dedicated criminals.

We don’t need more prisons or mandatory sentences. We do need our medical schools to teach medical students about FASD. We need diagnostic teams across the country to identify those individuals who need diversion, not prison. A person with FASD is not responsible for the brain trauma suffered before birth. But those individuals deserve our support in ways that will integrate them into the mainstream.

Prevention in the first place is critical and the education of professionals and the general public is essential. After that, we must find better ways to help individuals with FASD to become productive members of society. Because they have difficulty processing information, we have to recognize that their brains are like file cabinets without the benefit of file folders.

Let’s look at alternative residential facilities — not jails — where they can learn   to work at hands-on activities that don’t require abstract studies. Many could succeed in the hospitality industry, music, art, or working with animals. They can thrive if we give them the time and opportunity to develop at their own pace. They are ten second people in a one second world. We know of dormant physical structures in Ontario that could be brought back to life to educate and train them.

This would cost money. But it wouldn’t be wasted money  that breeds criminality in those punitive locations we call prisons. Will we still need jails for villains? Of course we will. But we will reduce crime and build a better society.

What if… ?

 Have you ever started thinking about beginning a creative problem-solving exercise with the phrase, "What if…?" followed by any number of ideas, some serious, some fanciful? It’s quite surprising what can come out of that kind of brain-storming exercise like that. Because you are only floating ideas and not committing time or money to them, you can keep going indefinitely until some or one of those ideas has a germ of possibility. This process works because even off-the-wall crazy ideas can often lead to good ideas. The secret is not being judgmental too early in the process. Let your imagination go as long as you can and only then start discarding the ideas that are absurd or simply too unwieldy to cope with. 

Bonnie & I do this a lot and, from time-to-time, really good ides do come to the surface and, if we are inclined, we follow-up on them. That’s what happened over ten years ago when we were locked into the house because of major winter snowstorms in Toronto and the snow banks in my driveway were already over my head. That was when we said, "What if on the ninth minute of the ninth hour of the ninth day of the ninth month of nineteen ninety-nine, we did something to remind everyone that during the nine months of pregnancy a woman shouldn’t drink alcohol."

Well, we tried that notion out on our FASD buddy, Teresa Kellerman in Tucson, AZ who warmed to the idea immediately. With Teresa’s expertise in developing websites and the mailing list we had developed over the previous two years, we managed to alert everyone we knew then who were involved in the field of FASD. That was February, 1999 — by Sept. 9 that year there were communities in countries around the world doing something to alert the public and the media about the dangers of maternal drinking in pregnancy.

We called it International Fetal Alcohol Syndrome Awareness Day which was soon abbreviated to FAS Day and now that we generally use the term FASD to describe the range of diagnoses caused by drinking while pregnant, we simply say FASDay. That year there were events in church basements, on city hall steps, in schools and many other locations in innumerable communities in at least 11 time zones around the world. It was all done through the volunteer efforts of local FAS groups and coordinated over the internet. We collaborated with Teresa to provide guidelines & ideas of what to say and how to attract the public and the media to the local events and the groups just did it, with flair and enthusiasm. My former employer, Consumers Gas contributed the design and printing of a multipage, 4-colour report with pictures and contributions from many countries. And when it was all over, as we reviewed the extensive media coverage, those FASD volunteers said, "Hey, let’s do it again next year!"

And so we did and so did they. This year was the 10th anniversary of FASDay and we have been told that there have been FASDay events in 24 time zones (maybe they mean all the time zones where there are people). In many communities, the volunteers took a page out of the NOFAS-UK playbook where Coordinator Susan Fleisher had invented the ‘Pregnant Pause’ event where the participants appeared at a busy railway terminal with signage and balloons under everyone’s shirt or sweater — men & women both — to suggest pregnancy. That event  appeared on You Tube and we in Toronto did our version of the Pregnant Pause ‘freeze’ outside the Royal Ontario Museum at the busy intersection of Avenue Road and Bloor here in Toronto. APTN, the national Aboriginal Peoples’ Television Network covered our event extensively and included interviews with other community FASDay volunteers across the country.

The same day, The Motherisk unit at Sick Children’s Hospital held their annual FASD research conference in Toronto which was also their tenth anniversary. Back in 1999, Dr. Gideon Koren and his chief assistant Susan Santiago had held the first FACE (Fetal Alcohol Canadian Expertise) conference here to coincide with the first FASDay. They have held this important research conference every year since then in different cities in Canada and the US.

This year they invited Bonnie & me to attend at the luncheon during the conference so that the then Ontario Minister of Children & Youth Services could present us with awards reflecting our work over the past ten years. Minister Deb Matthews has since become Ontario’s Minister of Health and we are pleased that she is a strong advocate for FASD issues.

There is more info and a photo available on the Best Start Resource Centre website (http://www.beststart.org/projects/index.html#fasd) – just click on Edition 7, October 2009.

So, have you asked yourself any ‘What if…?’ questions lately.

FASDay

Who could have imagined that the FASDay event could have caught on and evolved for all these years? When Bonnie, Teresa and I first talked about doing something back in 1999 we thought it would be a one-time event. How gratifying it is to receive the messages from around the world telling us about local FASDay activities.

Here’s the message that went out this week from Children’s Aid Society Toronto:

Sept. 9/99
FASDay Event – An Invitation from CAS Toronto

Staff and public are invited to join us on the front steps of 30 Isabella St. on Tuesday September 9, 2008 at 9:00am to take part in a short reflection ceremony recognizing Fetal Alcohol Spectrum Disorder (FASD) Day. FASD is the term used to describe the range of effects that can occur in an individual whose mother drank alcohol during pregnancy. These effects may include physical, mental, behavioural and/or learning disabilities. FASD is preventable. An estimated 1 in 100 Canadians struggle with permanent brain damage caused by prenatal alcohol.

The idea of an international “FAS Day” was hatched in a Toronto snowstorm in the winter of 1999 by Bonnie Buxton, Brian Philcox of FASworld Canada and Teresa Kellerman of Tucson. By Sept. 9, ’99 over 80 communities around the world were participating in the first FASDay which began in Auckland, New Zealand, with a “Minute of Reflection” bell that rang from a church at 9:09 a.m. Then it moved to Adelaide, Australia, and then to South Africa, where at 9:09 a.m., Cape Town volunteers gathered to hear the War Memorial Carillon that rang when Nelson Mandela was released from prison. Volunteers across Europe held events — and then FAS Day crossed the Atlantic to events and bells being rung across Canada and the U.S. The westernmost activity was the community breakfast on the tiny island of Kitkatla, B.C., near the Queen Charlotte Islands, where the village bell rang at 9:09 a.m. followed by prayers in the native tongue by village elders. This “magic minute” has come to be known as, “The FASD Bell Concordance.”

There are currently more countries participating than can be easily counted.

Everyone participating in FASDay is invited to share in the “Minute of Reflection” by ringing a bell, as it goes around the world on the ninth minute of the ninth hour of the ninth day of the ninth month. We want to get out the message that in the nine months of pregnancy, while breastfeeding or planning to conceive, women should not drink alcohol.

The significance of the bell is its simple purity and it reminds us of the innocence of children. As well, bells are historically associated with warnings, alarms, marking important moments, and simply pealing for the joy of connecting with the community. FASDay is all of these things.

So bring with you a bell (small or large), a chime, a cymbal, a rainstick or anything that rings out.

The program will be as follows:

9:00am-9:02am – welcome from Executive Director David Rivard
9:02am-9:04am – remarks from Sharron Richards, Manager Community Development and Chair of the FASD Toronto Network
9:04am-9:08am – remarks from Brian Philcox, Co-founder of FASworld, who created the concept of FASDay with his wife Bonnie Buxton and Teresa Kellerman of Tucson, AZ.
9:08am-9:09am – moment of silence
9:09am-9:10am – FASD Bell Concordance (bell ringing)

For Information:

Rob Thompson
CAS Toronto
416-924-4640 (2086)
rthompson@torontocas.ca

Congratulations to all for your dedication, perseverance and caring.