What would it be like to live with a brain that made it impossible for you to be able to reach your full potential? What would it be like to know that the only reason you have this disability is because your mother drank alcohol while you were in her womb? And who are those mothers?
On Tuesday, Nov. 8, the Sunshine Coast FASD/CDBC Community Roundtable (FASDCR) - a committee of professionals, parents and, in many cases, foster parents, formed to provide support and advocacy for young people living with fetal alcohol spectrum disorder (FASD) - brought together community leaders to address these questions.
And while presentations led by Kerry Mahlman, principal of Aboriginal programs and services, provided much needed information to the invitees she termed "champions," it was a five-minute film starring four local young people struggling with FASD that nailed the challenges of this disability for the audience.
The video, produced by Karen Foley, a FASD key worker and soon to be adoptive mother of two of her clients, told the story of FASD in the youths' own words.
In one of the most touching moments of the film, Michael Oswald tells us, "We don't want to be coddled, we just want to be like you."
In another clip we hear his young friend Michael Horth say, "The way I act is not a reflection of my true self. People have to be a little patient with me. Please be more patient with me and everyone else with FASD. It will make my life journey easier."
Mahlman, School District No. 46 principal of Aboriginal programs and services, delivered the hard facts on this 100 per cent preventable brain disorder.
While FASD impacts each person differently, many symptoms are shared. These can include attention deficits, sometime compounded by hyperactivity, memory deficits, difficulty with abstract concepts such as math, time or money, poor problem-solving skills and difficulty learning from consequences. Not surprisingly, poor judgment, immature behaviour and poor impulse control are also signs of this profound disability.
What's important for the rest of society to realize is that these characteristics are not behaviour problems, but are the result of permanent, unchanging damage to the brain and are not controllable by the person afflicted. FASD is an equal opportunity disability. It knows no social, economic or racial bounds -any woman who drinks when pregnant regardless of her age, intelligence or background can give birth to a child with FASD.
Another FASD key worker, Jen Davey, who works out of Sunshine Coast Community Services Society, elaborated on the dangers of drinking for women of childbearing age. She said that many FASD births result from unplanned pregnancies - effective birth control is imperative. By 18 to 21 days into a pregnancy, the damage may already be done. That's only three days after a missed period.
Binge drinking can be particularly harmful to the growing fetus. For while the mother may sober up between drinking bouts, her unborn child lacks the ability to do so.
Davey emphasized there is no safe level of drinking for an expectant mother -abstention is the only answer to prevent FASD.
While some affected by FASD may manifest physical attributes of the disorder, most do not. This makes it difficult for the rest of society to be understanding.
The seemingly "normal" young person acting in an unexpected way can bring the wrath of society down on his or her head, reactions that contribute to the high rate of mental illness, homelessness and addiction seen in persons with FASD.
Adults living with FASD have trouble living independently, experience difficulty staying in school, struggle with relationships and find keeping jobs challenging.
Professional help for adults with FASD is minimal unless the individual has proof of this devastating diagnosis. The test, available only at The Asante Centre for Fetal Alcohol Syndrome in Maple Ridge, is free to children with referrals but not to adults. Anyone over the age of 19 has to pay the $5,000 for the test themselves, a worrisome catch-22 for anyone needing the diagnosis of FASD to access medical/government services.
Although he was unable to attend the meeting, local MLA Nicholas Simons, NDP critic for Community Living, is well aware of the challenges facing FASD adults. In his former career, Simons was a social worker and experienced the ravages of FASD first hand. In an interview with Coast Reporter, Simons said many with FASD end up "thrown around in the criminal justice system" as a result of their disabilities. He said he's glad that people are talking about FASD and the havoc it wreaks on its innocent victims. These people, he said, need the support of society not its judgment.
"We want to live in a safe, nurturing community where everyone is valued, and we can't do that unless we take care of the most vulnerable among us," Simons related.
If you or your organization would like more information about FASD, contact Jen Davey at 604-740-1833.
