Before Isaiah Boylan emerged from his mother’s womb he was damaged for life. His mother drank a lot and didn’t think or know what the alcohol might do to the developing brain of the baby she was carrying.
Maybe she didn’t immediately realize she was pregnant — fifty per cent of Canadian pregnancies are unplanned — and had already inflicted brain damage on her unborn son during the critical first trimester.
Researchers know that a pregnant woman who drinks heavily can impose a life sentence of disability on her child. But they are also discovering that a woman who enjoys a few glasses of wine a week can do the same. It’s often more about timing than quantity.
Health Canada estimates that about nine in 1,000 Canadian babies are born alcohol affected. But it’s often an invisible brain injury, difficult to diagnose and masked by articulate speech and regular appearance.
“I wish, at times, I could draw a wheelchair on my forehead so people would understand I have a disability,” says Isaiah.
Isaiah’s 12-year-old sister Ireland, a math whiz diagnosed last year with Fetal Alcohol Spectrum Disorder (FASD), is similarly literal.
FASD is the umbrella term for a range of symptoms of which Fetal Alcohol Syndrome is the most serious. Symptoms vary, but kids diagnosed with FASD are typically hyperactive and obsessive about getting their needs and wants met. They can have learning disorders or suffer from depression or obsessive-compulsive disorder. They have difficulty paying attention and making friends and are often plagued by distracting sensory issues. Isaiah, for example, deliberately wears all clothing next to his skin inside out because he can’t abide the feel of seams.
Like many FASD-affected people, Isaiah’s damaged “executive functions” means he has poor memory and an inability to understand the repercussions of his actions. He has no filters to stop him saying hurtful or insulting things.
FASD is a tough, widely misunderstood and all-consuming taskmaster for both the children who live with it and the parents who raise them.
Brenda and Chris Boylan fostered – and would later adopt — Isaiah when he was four months old and Ireland when she was barely two days. They didn’t know Isaiah was alcohol affected and he wasn’t diagnosed until he was eight.
At daycare, Isaiah was hyperactive and impulsive and unable to function in a relatively unstructured environment. He remains the only child ever asked to leave that daycare.
It got no better in kindergarten, but it wasn’t until Brenda spotted a notice in the newspaper about a local FASD support group that the reality began to emerge. “We are all ignorant of these children and their deficits,” she says. “It’s taken me 17 years of reading up on it to finally understand my son.”
Mothers plagued by guilt and shame
Research into FASD is incomplete partly because it’s usually done with adopted children without the benefit of access to biological mothers, says Queen’s University professor James Reynolds, who has worked with Isaiah Boylan and his family.
And birth mothers who raise their alcohol-affected children are usually overwhelmed with guilt, shame and denial, he says. Many probably accept more stigma-free diagnoses, such as autism or attention deficit disorder. “We suspect that there are kids being raised in biological families whose FASD is not being reported because of stigma.”
“We have made some significant progress in the past decade but nothing about FASD is simple,” says Reynolds. He is part of a national, multi-discipline research group studying FASD, focusing on early detection of pre-natal alcohol exposure and interventions to improve the quality of life. His research network, NeuroDevNet, holds its annual Brain Development Conference in Ottawa from Sept. 19-21, preceded Thursday by a one-day FASD specific event.
The bottom line is no drinking at all
The human nervous system begins developing soon after conception, and fetuses are especially susceptible to the effects of alcohol in the first trimester of pregnancy. The timing and quantity of the mother’s drinking can have a range of impacts on her baby, says Kim Hellemans, professor in Carleton University’s neurosciences department.
“It will always have an impact, but you can’t predict because it depends on individual differences –nutrition, stress levels, exercise and other unknowns.”
Common conditions among alcohol-affected children are anxiety and “conduct disorder,” which can lead to drug use and trouble with the law.
“That’s why the bottom line is zero. Pregnant women shouldn’t be drinking alcohol at all.”
More eduction needed
Many advocates say the Liquor Control Board of Ontario (LCBO) could be doing more sustained education of women – especially young women, who are the most likely to have unplanned pregnancies and are also the marketing target for myriad of “girlie” drinks.
The LCBO says it supports Best Start and numerous other initiatives aimed at pregnant women, but because of its role as a “government enterprise” is unable to independently make donations – or fund research.
In the 2014-15 fiscal year, the LCBO handed the Ontario government an after-tax profit of $1.805 billion. LCBO has no control over how that money is spent.
Brenda Boylan says women should be targeted in a more sustained and innovative way.
”There isn’t enough information out there for women to understand that alcohol can cause damage to their unborn child,” she says. “The only way to get rid of stigma is to have people admit it,’ she adds. “It’s the child we want to help, not to judge the mother. So my message to mothers is this: ‘if you suspect there’s a problem, think back. Did you drink? If you did, get the child a diagnosis.’ ”
Difficult to diagnose
There are two fundamental myths surrounding FASD: That it is exclusively a problem for aboriginal populations and that everyone affected has specific features, such as a smooth ridge between the nose and upper lip. There is some truth in both: FASD is a problem for aboriginal populations, exacerbated by a lack of services, and the condition does show, however subtly, in about 20 per cent of faces.
But for most it is invisible and difficult to diagnose. And a lack of knowledge among medical professionals about FASD remains a significant obstacle, said Elspeth Ross, facilitator of the FASD Group of Ottawa and a parent of two adopted fetal alcohol children now in their 30s.
There is no simple medical marker, like a blood test, that reveals FASD, and other disorders such as ADHD have some of the same symptoms. Neuro-psychologists diagnose FASD using hours of testing to rate cognitive abilities. The earlier it’s diagnosed the better chance intervention can help.
Medications sometimes given children with ADHD, such as Ritalin, don’t tend to help kids with FASD, but school programs run by teachers with knowledge of the disability do.
“We have to look at this with hope,’ says Ross. “People with FASD can do well with tailored programs and some understanding.”
What the future holds for Isaiah
Like all parents of children with FASD, the Boylans worry about what the future holds for their children when they become adults. “The way Isaiah can explain things will knock your socks off,” she says, “but some things haven’t changed since he was four years old. You still have to tell him what to do.
“These kids don’t learn behaviours. You have to get in their face and even then they will do the same thing over and over again. They are also dealing with teachers who don’t understand them – and they’re getting frustrated too.”
Isaiah, who is unusually frank and willing to publicly discuss his disability, is fully aware of his drawbacks. “I even get pissed at myself sometimes. I don’t have that sense of cause and effect. I know if I put my hand on a hot stove it will hurt, but if I say something that can have repercussions I don‘t think about that. I don’t think ahead that far.
“I can’t imagine things. Some people can envision stuff. I can’t. I don’t have the mental capacity to drive a motorized vehicle. I would get distracted quite easily.”
Isaiah loves fishing – he changes lures every five minutes – and is keen on welding, which he would like to take up as a career.
And for all life has thrown at him, the teenager is philosophical. “In some respects I’m very adult but in other respects I’m like a child.
“But I don’t blame my (birth) mother for what I have,” he adds. “It’s all circumstance.”
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