Napanee, Ontario is a small community of (officially) 5500 plus but the dynamics of the social structure and the cadre of foster parents is formidable. Bonnie and I spent a full day reviewing strategies for caregivers with children who struggle with FASD and we were most gratified to find such enthusiastic response from the moms who participated. Anne Roantree had organized the workshop on behalf of the Lennox and Addington Family & Children's Services and we were very pleased to bring new perspectives to the professionals and to the foster parents on the issues of FASD.

Although that session will be the last for a while, I just wanted to remind everyone that we are still keen to give FASD workshops wherever we are invited. However, we do need to have a few months respite after a heavy winter of unfortunate events. We think some gardening and house maintenance will renew the vigour we would like to continue our FASD work later on this year.

Comments and suggestions still welcome on FASDance!

This week Bonnie & I were rewriting our workshop presentation for a group in Napanee, ON which had been originally planned for March 5 of this year. However, just before that Bonnie had an adverse reaction to her meds and had to be hospitalized for seizures. Although she is on the mend (albeit slowly), the nature of the group in Napanee had changed from mostly professionals and afew parents to largely foster parents. So, we revamped the presentation to focus on strategies rather than emphasizing basic background info on FASD. Among the items we will be sharing with the attendees this week is a piece I wrote a few years ago entitled the "Top Ten Ways to Cope with FASD". Then I thought, why not share it with you? So here it is:

The Top Ten Ways to Cope with FASD

1. Keep a journal. Record significant events as they happen and make notes on strategies you might try in the future. This simple paper trail should include the highs as well as the lows on this roller-coaster journey. Don’t edit yourself or worry about spelling or grammar – just let the thoughts flow. This is your private document: use it to express anything that’s on your mind. It may provide useful back-up later when you deal with professionals or the legal system. Believe it or not, this journal may provide a few chuckles in the future. Keep it in a place where your loved one with FASD can’t find it.

2. Share the crazy moments with your partner or a trusted friend. Releasing your frustration will keep you mentally healthy and keep you from bogging down in self-pity.

3. Always look for and express the positive side to even the worst moments that you go through with your cherished one. There is usually an upside to every bleak event, even if it isn’t obvious at the time (a black sense of humour really helps here).

4. Learn to recognize that your unconditional love may never be returned – because your loved one may be incapable of that depth of feeling.

5. Remember that, whatever happens, it’s not your fault. Ignore professionals, family members and “friends” who blame your parenting skills. Concentrate on maintaining a loving relationship with your loved one, providing support and boundaries that will keep both of you, and others, as safe as possible – while recognizing that you have very little control over the end result.

6. Let everyone know that your special person is struggling with a disorder that is not his or her fault. No one blames the deaf or blind for being unable to see or hear. Why should we blame the one who struggles with FASD or the ones who know him or her best?

7. Tell the FASD story to anyone who will listen. It’s the invisible disability that only a few of us understand. Wear a FAS Knot routinely. Carry FASD brochures at all times and hand them out to anyone who can read. Support FASDay events in your community.

8. Offer respite and support to others if, and when you feel strong enough to do so.

9. Lobby your representatives at every level of government. When they understand the huge size and cost of FASD, they will be more likely to put in place funding and policies to prevent FASD and support those with FASD and their families.

10. Start feeling good about yourself because you are doing something that is far more important than any scientist, professional or business leader has ever done – you are the hands-on practitioner, the caregiver, the frontline researcher. You are far more powerful than you realize, especially when we all work together.

You are the one who will ultimately change the world.

For all my FASDfriends… from Brian Philcox brian@fasworld.com

Have you ever read the labels on food packages that tell you how much fat, carbohydrates, sodium and so on are contained in that particular product? Isn't it amazing how much salt (sodium) you can find in things that don't really need to be salted. After my bypass surgery I was told to severely restrict my salt intake and was startled to discover just how much salt was in everything from canned soup to sliced meats to tomato juice.

So I find those food labels very helpful when I shop. Now, has it ever occurred to our regulators that beverage alcohol could also be identified by its component parts. After all, we do know that alcohol is a neurotoxin that can seriously inhibit the cognitive functioning of full-grown adults. In other words, if you ingest enough of your favourite tipple you'll get drunk. And those of us who are concerned about such things know that the presence of alcohol in a pregnant woman's body can severely damage the brain development in a fetus.

Yet too many people appear to be oblivious of that fact. And some of the most ignorant happen to be professionals who should know better. So what can we do to increase the level of awareness among all populations in our society? My sense is that every beverage alcohol package should carry relevant information about the contents and have a warning that women planning a pregnancy or during pregnancy should not drink.

However, there seems to be a strong lobby by the beverage alcohol industry that has successfully opposed this sensible precaution ever since the idea of labeling has been proposed. How is it that we can label everything we eat that comes in a package for the edification of all, yet beer, wine and spirits have no useful information about their contents or the possible outcomes of their misuse?

Do the powers that be care more about hypertension and allergies than what maternal drinking in pregnancy can do to the brain cells of the fetus? That is certainly the impression I get. And yes, I've heard all those claims that red wine is really good for you (in moderation of course), but haven't we accumulated enough convincing research data to know that maternal drinking in pregnancy can have a truly devastating effect on the brain development of the fetus. No sensible person would give alcohol to a baby, so why would we not warn of the danger of giving alcohol to the fetus.

I've heard the claims by people in the alcohol industry and by medical professionals that warning labels are not effective. But I have not seen the research that would support those claims. In fact, I have not seen truly effective warning labels in any jurisdiction for alcoholic products. Warning labels in themselves are not the complete answer to the scourge of FASD. But they can be an effective component in the overall effort to convince everyone that drinking in pregnancy is a dumb idea.

Communication professionals know that you cannot change people's attitudes about any particular issue by focusing on one medium only. In our modern society we are assaulted by a surfeit of new information on a daily basis. Some of it is helpful in our lives and much is irrelevant. However, labeling in the context of a larger, overarching communication program about the risks of drinking in pregnancy could provide a solid anchor for this critical message.

So, would labeling by itself solve the FASD problem? No. Would those who are compulsive or addicted drinkers be deterred by labels? No. Would every purchaser of alcoholic products even notice warnings on packages? No -- certainly not if those warnings are as badly presented as we find on US packaging.

However, should our federal government have the courage to require effective warning labels on alcoholic products we would have an official position on this important issue and we could build better communication programs throughout our society -- starting in the schools. We have just seen the federal government ban BPA in products because they feel it is better to be safe than sorry. We don't need to ban alcohol but we have the right to know what kinds of problems could arise from improper use. Our children will thank us.

Have you ever wondered why some people are so terrified of labelling alcohol packages? The former President of the Canada Safety Council (CSC), Emile Therien, has ridden this hobby-horse before and I’m still wondering why. I have just read a rather specious argument against labelling on the globeandmail.com website. The CSC is concerned with safe driving techniques and sport helmets for children and issues media releases and newsletters with good advice about these issues. Does he now feel that he is an authority on health matters and mass communication efforts? Or, is he in the thrall of the beverage alcohol industry which has fought labelling of their products ever since this issues was raised?

Whatever his motivation, his arguments do not stand up to scrutiny. For example, no advocate of labelling booze packages has ever suggested that this step would be a “quick fix” or would, by itself, resolve the problems of immoderate drinking or totally prevent Fetal Alcohol Spectrum Disorders (FASD). As well, any research on labelling is meaningless if there have never been any effective label designs – certainly none exist in Canada.

Does Therien think that we should remove the warning labels from cigarettes because some people still remain addicted? Should we remove the warning labels from caustic cleansers and various poisonous liquids that are common to most households? Should we eliminate the information panels on food products in our stores because of our society’s high illiteracy rate? Oh no, let’s pretend that alcohol is some kind of health drink rather than a neurotoxin that can damage the developing brain cells of the growing fetus in the womb.

Perhaps the CSC and the beverage alcohol industry is unaware that FASD is the most common, most expensive, yet most preventable of all mental disorders in the industrialized world. But I doubt it. Currently, the cost of special education, welfare, social services, mental health counselling and the justice system can largely be related to those who struggle with FASD and roughly matches our national debt.

I agree that labelling is no quick fix. Labelling must be part of an overall education and intervention program that starts in our schools (including the medical faculties in our universities) with children prior to them becoming sexually active. Our country needs a concerted, overall strategy to inform everyone of the devastating effects of maternal drinking in pregnancy. FASworld and the thousands of families who deal with these issues on a daily basis are ready to welcome collaborative efforts from CSC and the any other responsible organization that will help us curtail this social scourge. I challenge the CSC to tell us about “the proven measures and personal interventions that are actually making a difference” and how labelling will divert resources of any kind.

This is not a minor issue. If you have ever wondered why there are so many homeless, school dropouts, high recidivism rates in our prisons, a clogged justice system, multi-generational alcoholism in some of our communities, just look into the cause: it’s more than likely FASD. Communication efforts must not start and stop with labels. We need effective information messages at all locations where alcohol is sold, in all broadcast commercials and print advertising for alcohol products and in mandatory parenting education programs. FASD is bigger than SARS, bigger than HIV/AIDS, bigger than any disease of the week. Let’s stop poisoning our unborn.

Starring the renowned Teresa Kellerman, FASworld coordinated a full day FASD workshop for parents here in Toronto in September of this year. Teresa created a unique program that was informative and splendidly interactive. She modified the lyrics to a number of Beatles' songs and had everyone sing along with her at intervals in the program. The response, according to our follow-up survey of attendees was very positive with an over 60% response rate. We are happy to share the survey results with anyone who is interested -- just let me know at brian@fasworld.com.

The conference was supported by CAS Toronto, The Children's Mental Health Fund of the Ministry of Children & Youth Services, FASworld Toronto, St. Michael's Hospital and our special friend, Richard Ilomaki. A special gift came to us for all of the attendees, courtesy of the Monteith Correctional Centre (near Timmins, ON) in the form of their own invention: FAS Knot pretzels. They were sweet and delicious and a tribute to the volunteer bakers who contributed their own time and efforts to create yet another version of the FAS Knot to help getting the FASD message across.

These are my remarks at the conclusion of the day:

"I'm so lucky -- my daughter Colette who helps us with our FASD work, my wife Bonnie who is my inspiration and booster, our beloved Teresa who has enriched all our lives so well...

"When you fall -- as all of us must do from time-to-time, remember to fall forward. For every mishap, every failure is an opportunity to learn and to grow. Our challenges are great but we can meet them as we continue to evolve as caring beings who can continue to discover some of the important reasons why we are who we are. And who we are is never a constant. As we meet each of life's difficulties we can build new skills, new techniques that will help us to help our loved ones even more. I honour the greatness in you. Namaste.

When you get immersed into FASD issues you certainly learn a lot of new words. Many parents of difficult, acting out children are either confused or frustrated or both when confronted by professionals who identify their children with terms describing behaviours but not recognizing root causes.

When you have more than one identifier of a child's behaviour (e.g. attention deficit disorder, attention deficit hyperactive disorder, radical attachment disorder, seasonal affective disorder, oppositional defiant disorder, and so on), that does not necessarily mean that a fetal alcohol spectrum disorder is excluded. These comorbidities, as they are called, only recognize that there is more than one behavioural anomaly occurring coincidentally and there should be no assumption that these diagnoses are the definitive answer to the reasons behind your child's behaviour.

A diagnosis of any one of these comorbidities, occurring alone or simultaneously with any others, should be a signal to investigate further into the reasons behind the behaviours that are delaying the healthy mental development of your child.

Let's acknowledge that fetal alcohol can cause virtually any kind of physical or mental damage to the developing fetus, up to and including death. Share your knowledge of the dangers of alcohol in pregnancy with every person you know. Every child deserves the best start possible in life and no alcohol during pregnancy and planning for pregnancy must be the rule. We are told by doctors that 50% of pregnancies are unplanned, so if a woman is sexually active and not using contraception, she is planning a pregnancy. As Dr. Christine Loock has said many times, "FASD is the most common, most expensive, yet most preventable of all mental disorders in the industrialized world."