Misunderstood and bullied: Teen with fetal alcohol syndrome asks for compassion
When Marsha Munn adopted a baby boy 14 years ago, she knew her friend, the birth mother, liked to drink and party.
She didn't know about fetal alcohol syndrome.
Today, the Doaktown woman says her son, Blaze, struggles with hyperactivity, memory problems and intense, uncontrolled bouts of anger — all likely caused by a disability that started in his mother's womb.
Munn said she's learned to cope with her son's disability. But she struggles with the bullying and lost friendships Blaze suffers, and with his depression.
"Many times he's come home wanting to kill himself and that's probably one of my hardest things, is to watch him say he wants to kill himself because of the way people react to him in the community or at school," she said.
Munn and her son attended a workshop of the Canada Fetal Alcohol Spectrum Disorder Research Network in Fredericton this week.
The event, which is part of a 16-week certificate program at the University of New Brunswick, provides social workers, parents and volunteers with the latest research and information on the disorder.
For Blaze, it was a chance to share his experience, which he said many people, especially other children, don't understand.
"They don't know how we actually are and how we actually feel," he said. "This is my only chance to say how my life is and to let them know how I feel."
Drinking during pregnancy
Fetal alcohol syndrome is the most severe form of fetal alcohol spectrum disorders, which are caused by drinking alcohol during pregnancy.
Exposure to alcohol during the pregnancy changes and damages the infant's brain, which can lead to lifelong physical, mental and behavioural difficulties, as well as learning disabilities, the research network, known as CanFASD, writes on its website.
Often, these changes are not detected until a child reaches primary or middle school age, when difficulties in school and at home become problems, the website said.
Munn said Blaze was a normal, though somewhat hyper, child until Grade 1, when he started acting "rude, kicking his grade one teacher, swearing at her, just really out of control."
He was diagnosed a year later. Munn said the doctor knew right away when she mentioned that his birth mother drank.
'Anybody can have FASD'
Michelle Stewart, strategic research lead with the CanFASD, said she's still surprised by how little people know about the disability, its causes and effects.
"Sometimes people don't understand it's a lifelong disability, or they don't understand the disability so they think somebody ... just needs to mature or that somebody just needs to try harder," she said.
"There are also misunderstandings about FASD in communities when sometimes people think that its only Indigenous people that have FASD. ... Anybody can have FASD."
Stewart said many of the mothers and children she meets suffer from social isolation, bullying and stigmatization in their community.
Yet some of the women did not even realize they were pregnant when they drank, which also means the disorder is only 100 per cent preventable if you don't drink, she said.
Need for more education
Across Canada, up to one in 20 children could be affected by fetal alcohol syndrome, said Annette Cormier, program manager with the FASD Centre of Excellence in Moncton.
Based on the number of births in the province last year, between 250 to 300 people should be diagnosed a year, she said. But the Moncton centre sees only 400 clients.
"That's quite an alarming number of children that we are missing," she said.
Cormier based her estimates on numbers from the U.S. Centers for Disease Control and Prevention and the comparatively high number of women in the province who report drinking heavily at least once a month.
Statistics Canada said 15.3 per cent of New Brunswick women said they drank heavily — four or more drinks at once at least once a month in 2014. The Canadian average was 13.2 per cent.
The U.S. organization reported on its website that little research is available on how many people have the syndrome.
But the incidence of the syndrome among U.S. and Western European schoolchildren could be as highi as two to five out of 100, based on physical examinations and estimates from experts, it said.
More referrals at Moncton centre
Cormier said the waiting list for an assessment is 2.5 years, but the Moncton centre starts assisting families with resources and education right away.
She added that demands at the centre have been increasing, with an average of 10 new referrals per month.
"As the months go by, our client caseload increases incredibly," she said.
The centre hopes to open a satellite clinic by 2018. That way people won't have to travel across New Brunswick to get a diagnosis, she said.
But she also stressed the need for more education.
While the research is still out on when during the pregnancy alcohol causes the most damage to an infant, mothers need to know about the dangers of drinking while pregnant, she said.
"And we have moms that, you know, the doctors told them that an occasional glass of wine would be OK throughout the pregnancy," she said.
Compassionate
Cormier said there is a bright side to the disorder. The earlier children are diagnosed, the greater their chance of success, she said.
Some of the youths she's known went on the become engineers, writers and psychologists — despite all the struggles they went through early in life, she said.
Blaze said he always wanted to be a firefighter because "they are lifesavers, and I just want to save other people's lives, too."
He said most people with fetal alcohol spectrum disorder love to talk and are, contrary to how they acting out at times, compassionate and caring.
But it's not just his behaviour that causes problems, he said.
If people would take the time to understand his disorder and react calmly instead of raising their voice when he gets mad, "then I think they would understand what I'm going through and be able to cope with me better."
His mother, Marsha, added that a lot of his teachers don't understand him "as good as they could."
But she admitted that she also had to learn a lot of strategies to deal with Blaze.
While she thinks his birth mother was unaware of the effects her drinking would have on him throughout his life, Blaze said he'd be less forgiving if he ever met her.
"I would say, 'Why would you drink when I was a baby, why did you have to do this to me?'" he said.
"I would try to make her understand that it's hard for us and that she didn't need to drink in the first place, and that if we weren't like this, we probably wouldn't get bullied."
