On Sept. 9 at 9am bells will ring throughout the world as millions observe silence in recognition of National Fetal Alcohol Spectrum Disorder.
This national awareness day was officially observed and recognized on Sept. 9 1999.
Fetal Alcohol Syndrome is the leading cause of mental retardation in Canada and industrialized nations of the world.
It has been said one in 100 children in large cities are affected by the disability.
Prenatal alcohol exposure is 100% preventable. Public understanding of prenatal alcohol exposure is starting, but it is commonly thought FASD happens to the babies of poor, undereducated women. It is not only alcoholic mothers who bear exposed children. In western society the mothers most at risk enjoy higher household incomes, are college educated, and have careers.
One bout of excessive “binge” drinking is damaging. The damage occurs in specific cells that are developing that day. For them the damage is done. There is no undo button.
Consuming as little as one or two drinks during pregnancy carries the potential for the child to be born with fetal alcohol effects.
Individuals with prenatal alcohol exposure often look like everyone else. The facial differences attributed to FASD occur during only two days of gestation so most affected have hidden physical and neurological differences, although at times parents of those children would find it easier if they “looked” disabled. Their actions and reactions to life experiences are often misunderstood. They have problems receiving, processing, storing, and utilizing information due to neurological dysfunction.
They inherit lifelong brain damage. FASD is incurable. Deformities for many with FASD are hidden, making the disability more devastating to those who live with it daily.
Our personal journey began in February 1998, after receiving a phone call that our much anticipated daughter had been born … alive.
Throughout the pregnancy Stacye was exposed daily to crack cocaine and alcohol. As her birth mother was an addict by choice, Stacye was now an addict as a result. The first three months of her life was spent struggling with withdrawal symptoms, irritability, shakes, seizures, no appetite, and little or no sleep. Most often she was inconsolable.
As she grew physically, like most children she lacked the simple connections of a normal child – little or no eye contact, she disliked being held or touched, had severe bouts of head banging, temper tantrums lasting hours, hoarding and consuming huge amounts of food only to vomit regularly from unrecognized “fullness.”
Living with prenatal alcohol exposure is difficult for everyone. The child may be impulsive, have limited cause and effect reasoning, have memory and processing issues, difficulty understanding abstract ideas, have trouble with money, time and math, get easily frustrated, and be volatile.
As children with FASD look like the average person, they appear from a distance to be thriving, growing, well adjusted little people. However, inside their beautiful little bodies a war is raging.
Socially starving and craving attention, every sound, smell, touch is heightened to extremes. Faced with that set of day-to-day behaviours, many people unknowingly label the person as “bad” instead of neurologically injured and physically inefficient. All the therapy in the world is not going to make the brain damage disappear. The electrical storms in Stacye’s brain cause meltdowns, and these rages are often misinterpreted as wilful disobedience or temper tantrums. In reality, the person with FASD has little or no control over the experience once it begins.
The surrounding audience’s best defence is keeping the individual safe and minimizing the destructive forces of the tornado within. After a rage, the child has little or no memory of the behavior.
Transition time for a person with FASD is often very difficult; a change in routine can send them over the edge. In most cases this means her environment must be modified to help her function within safe parameters as she develops coping skills so she is not trapped by her own behaviour.
Individuals with FASD are often five or more years behind in social and emotional development, and they tend to behave like a toddler or young child would.
Though outgoing and socially engaging, children with FASD are often impulsive, intrusive, overly talkative, hyperactive, and starving for attention. Limited social adaptation is a common problem. Poor judgment leads to exploitation, isolation, and establishment of few true friendships; even though they may be surrounded by persons they consider “friends.”
It is not uncommon for a child to call a list of friends for a play time and all of them answer “No.” The child with FASD often has a poor sense of self, remains a concrete learner, falls apart with transitions, is impulsive without restraint, and makes poor choices of friends and activities.
As Stacye has grown older, her friends have fled. Neurological brain damage is difficult for parents to comprehend, let alone young children and youth.
Difficulty with problem solving is one of the reasons persons with FASD lie and steal. They know on some level that this is wrong, however they cannot figure out how to buy, negotiate, or work for it.
FASD is an organic brain disorder. It is not a psychiatric disorder. The central nervous system disorders, growth deficiencies, and anti-social behaviours come as part of the package.
Life for families of children with FASD becomes a complex maze of isolation, misunderstanding, and 24 hour a day care with little or no breaks.
Thankfully, skillful parenting, a stable and structured home environment, early diagnosis, public awareness, and intensive and appropriate intervention can make an enormous difference in the prognosis for the child.
Perhaps in time there will be a loving spouse or life coach to walk along side Stacye and guide her. Perhaps we will discover new ways to make neural connections and provide her better problem-solving skills, an ability to encode information, and a way to enhance her visual and spatial skills.
Stacye and the now millions just like her deserve what everyone deserves – success, self confidence, a sense of belonging, friendships, self satisfaction, and most of all, to be loved.
FASD affects over 40,000 infants each year and those children will have to learn to cope with that disability. That’s more than muscular dystrophy, spina bifida, and Down syndrome combined.
It is high time we came out of denial, educated our communities, advocated for our children, and told the world that alcohol consumption during pregnancy is not safe.
submitted by Leslie Brown
