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Kathy Layte and adopted son Austin, 10: ‘He would head-butt me without batting an eye,’ she recalls. ‘He hit me so hard in the face that I had a nose bleed.’ (Kevin Van Paassen/The Globe and Mail)
Kathy Layte and adopted son Austin, 10: ‘He would head-butt me without batting an eye,’ she recalls. ‘He hit me so hard in the face that I had a nose bleed.’ (Kevin Van Paassen/The Globe and Mail)

Educating Austin: supporting kids with fetal alcohol syndrome Add to ...

School can be a problem for children like Austin Layte. He was in Grade 3 last year, but spent most of May and June, not in class but in the principal’s office – visits that mystified a boy who always seem to have a storm brewing inside.

His mother, Kathy Moreland Layte, had worked with the school to come up with a solution for his difficult behaviour. She says everyone tried to work around his emotional triggers, and the result was an individual education plan that was mostly behavioural. For example, rather than having a locker or cubbyhole – he could lash out, if someone bumped into him – he was allowed to keep his things in a separate room.

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For the first 10 days, things went well, but then the academic challenges began. He would become overwhelmed and could not keep up, despite testing high in mathematics. He threw furniture. The board scrambled to help – hiring a child worker to be with him for two hours each morning – as Ms. Layte struggled to find out what was really wrong with him.

“The school itself was very supportive,” she says. “They just didn’t know what else to do; they didn’t have the resources.”

Austin was placed on a modified timetable, coming home most days at 11 in the morning. Ms. Layte struggled to find someone to watch him, but at times was called to fetch him even earlier.

In the fall of 2011, he underwent four days of diagnostic testing that finally produced a label for his condition: partial fetal alcohol spectrum disorder.

“Part of me was relieved in finally knowing; another part of me continues to be horrified,” Ms. Layte says. “It’s almost like being grief-stricken for everybody – for them, for him, for me because I knew then that my life was never going to be the same. Life was not going to be what I expected it to be.”

She had to tell Austin how his life would be different. “I’ve been clear with him. I told him, ‘Everybody’s brain works like a highway. Some of yours is blocked and you have to work around the blocks.’ ”

Now with the diagnosis hurdle done, she needed to get him specialized schooling, which left her two choices: a school run by Child and Family Services, in which she would have to relinquish her parental rights, or put him in residential care, where he would be separated from his family every night.

“Both options means he wouldn’t be living here,” she said.

By late that September, a solution seemed found when the region’s mental health service had a special program called Kidslink, which he attended during and after school up until last July. He coped well there and was voted the most improved academic student. Things looked up.

Unfortunately, that program was not geared toward children who have permanent FASD issues, so Austin was chosen to attend a different class run by Family and Children’s Services.

Despite early planning to discuss his needs, trouble soon came and he was sent home for aggressive behaviour, staying there for four weeks with no support.

By early November, he was back in the classroom, after further adjustments were made to his safety plan, such as observing when things were about to escalate – kicking the leg of his desk, sighing, pacing, wanting to get a drink of water – then intervening with physical redirection such as hand holding.

“I still can’t relax. It’s a roller coaster,” Ms. Layte says. “You want to believe things will settle down, but they don’t. Your child is the one who suffers. These kids can’t be fixed – they need to be supported to be successful.”

CASE NOTES

Drinking while pregnant

Federal guidelines now state: “If you are pregnant, planning to become pregnant, or about to breastfeed, the safest choice is to drink no alcohol at all.”

And yet research conducted by Gideon Koren, director of the Motherisk program at the Hospital for Sick Children in Toronto, suggests more expectant women are drinking than anyone suspects. The accepted figure is 1 per cent, but he and colleagues in Charlottetown found that 3 per cent of 800 babies born in Prince Edward Island in 2010 had been exposed to substantial amounts of alcohol in the womb.

Forty per cent of babies exposed heavily to alcohol in utero will suffer from FASD, which can include damage to cognitive behavioural and executive functions, with substantial effects on their development, health and quality of life.

“Clearly, alcohol affects areas of executive function, of emotions,” Dr. Koren says. “Alcohol goes into different cells, that’s why you get sedated so quickly but there is still a lot of research going on; it’s really still in its infancy.”

What alcohol does to the brain

“It can damage every part of the brain or brain function,” says Sterling Clarren, scientific director of the Canada FASD Research Network, based in Vancouver.

Though the negative effects of drinking can be traced as far back as Aristotle, it was not until 1973 that the physical impact of alcohol on a fetus – the facial features of those born to alcoholic mothers – were given a name: fetal alcohol syndrome.

These features, noted by pediatrician David Smith, a researcher in dysmorphology at University of Washington’s medical school in Seattle, where Dr. Clarren worked as part of a team, included the flattened philtrum – that vertical groove between the nose and middle part of the upper lip plus a thin upper lip – in addition to small eye slit openings, medically referred to as palpebral fissure. Growth deficiency and brain damage are other key features.

How FAS differs from FASD

Diagnoses under the FAS umbrella also include fetal alcohol spectrum disorder (FASD), partial fetal alcohol syndrome (pFAS), alcohol-related neuro-developmental disorder (ARND) and alcohol-related birth defects (ARBD).

In 15 per cent of cases, damage is visible on a magnetic-resonance imaging machine. The holes in the brain look bigger and the white matter shallower, making the diagnosis relatively quick. For the remaining cases, the damage is microscopic and tests are required to determine its extent. For most, FASD is an invisible illness.

To compound matters, an FASD diagnosis is not considered reliable until at least the age of 6 – some say 8 – thwarting attempts to mitigate its effects early on. For years before that, these children may seem defiant, unruly and efforts to discipline them may do more harm than good because their brains simply don’t work the same way.

Those physical effects are seen only in children exposed to alcohol typically from day 19 to 21 of gestation. But damage caused by drinking while pregnant can occur at any time in pregnancy.

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