Crystal Piquette is 31 and ripped, her biceps and flat tummy a testament to the rigours of her factory job. Her life seems ordinary – she has a boyfriend and five cats, does handicrafts and dreams of buying a home – but it’s a quantum leap for someone who ran away from home at 17 to live on the street. Back then, whatever she earned as a panhandler, or as one of Toronto’s infamous “squeegee kids” washing windshields, went toward drugs, “wino drinks” and a man far older than she was.
“I was definitely the outcast,” Ms. Piquette recalls. “I didn’t get along with anybody. I still don’t. I don’t have any true friends.”
And yet her troubled background fascinates the woman with her, who has wanted to hear about it for years. “She’s kind of my hero,” Kathy Moreland Layte admits, dabbing her eyes.
And while Ms. Piquette has no friends, she thinks highly of Ms. Layte: “I wish she was my mother.”
The two were brought together by parenthood. They are both mothers of two young children – the same young children. Ms. Layte, 52, has adopted the son and daughter born to Ms. Piquette during her previous life. Alexis was conceived under the viaduct near the Air Canada Centre, and her mother says that during the pregnancy, she and the father “didn’t have a roof over our heads. We had to beg for food.”
She also had no medical care until just before the baby arrived, small and as fragile as a “porcelain doll.” Twelve years later, Alexis has difficulty with her hearing and speech and, unlike most kids her age, still plays with stuffed animals. Utterly without the guile seen so often in prepubescent girls, she seems warm and calm – a description rarely applied to her little brother.
Austin Layte picks up a piece of rope from the front yard of his house and bursts into piercing shrieks. It has pinched his hand.
“He’ll be fine,” says Ms. Layte, running in the house to grab an ice pack. “He just feels things a lot more than other children.”
Just 1 when adopted, Austin soon went from being a spirited toddler to having such poor control of his impulses that, by 18 months, Ms. Layte says, fear of consequences was no deterrence for his “unwanted behaviours.”
At daycare, he pushed kids down the stairs and wouldn’t stop throwing food; in Grade 1, he was caught climbing the curtains and was kicked out of nature camp for hitting a child with a stick. Bike treks with his mother were abandoned because he kept tearing out his sister’s hair. One day, he was nabbed on top of the refrigerator, reaching for scissors hidden in a cupboard so he could give the dog a haircut.
“He would head-butt me without batting an eye,” Ms. Layte recalls. “He hit me so hard in the face that I had a nosebleed.”
Yet he was so prone to anxiety that he needed someone with him wherever he went. His parents enjoyed little respite; babysitters rarely came twice.
For years, the source of his behaviour remained a mystery. How could he be so different from his sister? Why did punishment not work?
Doctors have finally pinpointed the cause: Austin, now 10, has partial fetal alcohol spectrum disorder (FASD). He is one of about 3,500 children born in Canada every year whose exposure to alcohol while in the uterus has caused irreversible brain damage.
The possibility of FASD had occurred to Ms. Layte, a former nurse practitioner who teaches at a nursing college. But a pediatrician discounted the notion, saying that, even if it were true, little could be done. Also, because children develop so differently, experts rarely diagnose FASD under the age of 8, unless they find the condition’s telltale facial features, such as Austin’s narrow eyes and flattened philtrum (the groove above the upper lip).
But now Ms. Layte has learned that sweet Alexis, as different from her brother as she may seem, suffers from the same affliction, and also “will need support all through her life.”
Almost four decades after researchers pinpointed the devastating effects of alcohol on the unborn child, the subject is only now garnering serious attention. Two scholarly publications (Journal on Developmental Disabilities and The First People Child & Family Review) have special issues in the works for 2013, and there is a private member’s bill before Parliament that would create a national strategy on FASD. Experts consider this vital because FASD children have long been misunderstood and badly treated, often landing in foster care or on the street.
“Sixty per cent of adolescents and adults with FASD have trouble with the law,” says John Rafferty, the NDP MP for Thunder Bay-Rainy River, who sponsored the bill. “If you think of prevention, that is an enormous cost.”
Of special concern to aboriginal communities, FASD challenges governments because it involves “virtually every social-service sector,” says pediatrician Charlotte Moore Hepburn, lead of child health-policy initiatives at Toronto’s Hospital for Sick Children. “We have poor services for the children and little sympathy for the women.”
Western provinces have taken the lead, adopting strategies that make caring for FASD children a priority – Alberta, for example, has introduced dedicated clinics and a telephone help line. Elsewhere, however, it can be difficult even to have a suspected case assessed; according to research pioneer Sterling Clarren, the medical system currently can identify “something less than 2,000” cases a year – far fewer than the number being born.
“So we’re getting farther and farther behind,” says Dr. Clarren, scientific director of the Vancouver-based Canada FASD Research Network. “Most systems have not had to come to terms with the fact that they have to deal with kids with fetal alcohol.”
Adoption is one such system. FASD is generally thought to affect, to some degree, about 1 per cent of all newborns, but Toronto journalist Bonnie Buxton says that covers a “significant percentage of adopted children.”
She contends that “most youngsters available for adoption have been removed from dysfunctional, alcoholic families.”
After their adopted daughter was diagnosed, Ms. Buxton and her husband, Brian Philcox, founded FASworld Toronto, a charity that provides a monthly family-support group. Then, in 2002, she wrote an article urging prime minister Jean Chrétien to have his adopted aboriginal son, Michel, tested after the young man was charged with sexual assault (he was later acquitted).
She estimated that 300,000 Canadians struggle with FASD. “Each one will cost the public up to $2-million in his or her lifetime for special education, social services, extra medical care and possible involvement with crime.”
This surprised many of her readers, as it had her. “At the time we adopted, social workers knew very little about FASD,” she says. By 17, her daughter had gone through several social workers and psychologists, and landed on the street, addicted to crack.
Alerted by a TV report to what might be causing the problem, Ms. Buxton fought to find help and went on to write Damaged Angels, an acclaimed account of her struggle to rescue a young women now thriving in a solid relationship and with two children. Still, almost a decade later, Ms. Buxton says, people eager to adopt rarely consider the damage alcohol may have done to children in need of a home. “They can be so darn cute and cuddly, they can be absolutely adorable.”
Ms. Layte also was ill prepared for how her life turned out after March, 2003, when she and her husband received an irresistible offer. A young mother about to lose her children to foster care had chosen adoption instead, so she could pick the parents and arrange to stay in contact. In the Laytes, she saw people who were “stable, with good jobs” and could give Alexis and Austin “what I didn’t have, which is everything they have now.”
“I wanted to see them being raised,” Ms. Piquette says – but not the way she had been brought up. She was just 18 months old when her mother dropped her off with neighbours in farming country near Shelburne, Ont., saying she had to go to the bank. Instead, she vanished, and Ms. Piquette still knows little about her, except she was never happy, “drank like a fish” and had also been abandoned by her mother.
Which is not unusual, Edmonton pediatrician and FASD consultant Gail Andrew says, echoing Bonnie Buxton. “A high percentage of [these] birth mothers were children in care themselves,” she explains, with “no significant person in their life there when they needed one.”
In June, 2003, the youngsters met their new parents for the first time: “Austin was given to my husband and Alexis was given to me,” Ms Layte remembers. “They both put their arms out. I thought, ‘Oh, my God, they’re beautiful.’ It was hard to believe they were ours.”
Ms. Layte says she knew the children had been exposed to marijuana, cigarettes and possibly cocaine in the womb, so “there was a risk they would have learning disabilities and maybe learning delays.” On the other hand, both were full-term babies, and “that was a good thing.” but it was years before she learned that alcohol was a factor as well, and only then when Ms. Piquette made a passing comment about how well Austin was doing, considering she drank while pregnant. Suddenly Ms. Layte realized the boy’s problems could be more serious than she had thought.
Ms. Piquette readily admits that, when she was living on the street, “drinking was around me at all times. I wouldn’t fall asleep and wake up – I’d pass out and come to,” but insists: “I cut back when I was pregnant.”
Drinking while pregnant has long been controversial, and only recently has Ottawa adopted guidelines saying total abstinence is the safest bet.
Alcohol remains the only consumer product known to cause harm if misused that is not required to carry a warning label. Last spring, Molson Coors added a logo to its beer packaging – a pregnant woman with a diagonal line across her – but is that enough to get the message across?
Laura Spero recalls she, too, drank “quite a bit,” largely on weekends, when she became pregnant at 20. “Nothing was ever said about it. I wouldn’t have people around me that smoked – but I didn’t know about alcohol.”
Now 48, she still goes to bars on weekends – as an FASD awareness and prevention educator in London, Ont. She hopes to keep young women from making the same mistake but finds that, even though almost three decades have passed, little has changed: Many still consider smoking their biggest threat.
At first, Austin’s good looks and personal charm made him popular at school, a daring boy with espresso-coloured eyes and a shock of brown hair. When his behaviour became an issue, it was attributed to attention-deficit and hyperactivity disorder, but Ms. Layte was skeptical – and the ADHD medication did no good. His behaviour became even harder to control.
“Kathy was disadvantaged because for many years, she didn’t know what she was dealing with,” says friend Elspeth Ross, an educator who lives in Rockland, near Ottawa, and raised two boys with FASD now in their 30s.
“We had the advantage of being told that alcohol was a factor. Because our children are aboriginal, people thought about alcohol more.” However, “if you have a blond child,” she adds, “lots of people may not consider it.”
According to Ms. Ross, parents with a child with difficult learning and behaviour problems often go from one professional to the next without being put on the right track. Not only are they “often reluctant to even consider the possibility of FASD … because it is scary for them,” she says, “professionals feel the same way and don’t even mention it.”
Once she knew about Ms. Piquette’s past drinking – and even though her marriage was dissolving (not, she says, because of the children) – Ms. Layte got serious. “I had to become this intimidating, shrew-like creature in order to get him what he needed.”
Diagnosis is the crucial step to specialists such as Vancouver’s Dr. Clarren and Manitoba’s top FASD researcher, Winnipeg geneticist Ab Chudley, who says: “If no kids are diagnosed, there are no services developed. If you pay attention to identifying and counting these kids, governments and schools pay attention.”
Others, however, complain that assessments can be inconsistent – and are no guarantee of treatment. “You think, once you have the diagnosis, you will have the people who will help you,” Ms. Layte says. “Then you realize you have to fight for everything.”
She has discovered that the school system is not equipped to handle Austin, and even a special class run by Family and Children Services for students with severe emotional and behavioural issues wasn’t a good fit.
As government agencies have searched for a solution, she has scrambled to find child care so she can continue to work, more of a challenge now that Alexis has been diagnosed as well.
At 52, she describes her life as “a roller coaster. You think that things will settle down, but they don’t.” And now her children’s other mother suspects that she also may be wrestling with the demons of fetal alcohol.
Ms. Piquette studied the rules of the road to take her driver’s test, but she says “it won’t stay in my head.” Did her own mother’s drinking habit have anything to do with her troubled childhood? Adopted by the farm family she was left with, she too grew up no stranger to trouble. At 6, she set fire to wool in her parents’ room; at 16, weighing 200 pounds, she was kicked out of Grade 11 after skipping more than 100 classes.
Now, she thinks that perhaps she too should be tested for FASD. But of one thing she is certain: “I want people to know: Don’t do what I did.”