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NORTHWEST TERRITORIES
One NWT family has been very straightforward with its adopted children as they cope with fetal alcohol spectrum disorder.

The mother of that family, whose name will be withheld in this story for privacy reasons, said she and her family have always been communicative about the disorder, its cause and its impact on their lives.

"What we've always told our kids is you have a disability and it's called fetal alcohol spectrum disorder," the mother said. "It was caused when your birth mother drank during pregnancy with you and because of that, you need extra help."

She and her husband began fostering their children when they were babies and preschoolers before adopting them.

She said FASD needs to be treated like any other disorder or mental health issue to reduce stigma and promote public awareness.

"I think because of the cause of FASD, which is drinking during pregnancy, we're very sensitive to not offending the birth mother," she said. "It's like any mental-health issue, as a society, we don't grapple well with it. It's like there is some kind of shame with it. That's not helping anything."

One of the woman's adopted daughters is now 22 years old and has lived in a residential home since March. The woman told News/North she would advise other young adults with FASD to opt for an assisted living situation when it's time to leave home.

"I would recommend going into a group home before living on your own," she said. "It's always good to have other people help you out."

The 22-year-old was hired by a business to take care of laundry duties. She said she enjoys her job and living on her own, but she faces challenges. Remembering details is one of her greatest difficulties.

"I would know something and then the next day I would forget," she said. To combat the problem, the young woman with FASD said she has to mentally repeat what she is trying to remember.

"I think hard about that one thing I'm trying to remember," she said. "Sometimes I will just think that one thing over and over in my head."

Difficulty remembering and impulsive behaviour are two effects of FASD, said Andy Langford, director of community wellness and social services with the territorial Health Department.

"There is a very wide range of signs and symptoms that can occur. Most have to do with developmental difficulties, attention problems, learning disabilities of one sort or another, difficulty remembering things," he said. "A wide range of developmental issues occurs."

Langford said the symptoms of FASD can range from minor to severe, depending on the individual.

"The range of issues for someone suffering from FASD would range from barely noticeable to someone who had very serious difficulties, particularly in a classroom situation," he said. "They would have severe learning difficulties."

For another of the adopted daughters, now 20, her symptoms are mild. While she said she sometimes has trouble communicating, she is training to work in a retail outlet. She said having FASD doesn't prevent her from participating in training, but she believes it is important that people understand what FASD is.

"Other people should know that we have a learning disability," she said.

It is not known how many individuals in the territory have FASD, Langford said.

"Part of the difficulty comes from the fact that many of the signs and symptoms of FASD are similar to a number of other developmental disorders," he said. "The key in the diagnosis is not so much signs and symptoms. Maternal drinking is the thing that has to be confirmed to arrive at a diagnosis."

Unlike other issues, such as sexually transmitted infections, doctors are not required to report suspected cases of FASD.

"Physicians who make the diagnosis do not have to report it to anyone," he said. "We simply have no way of knowing how often the diagnosis is being made."

While exact figures aren't known, an estimated 3,000 people are born with FASD in Canada every year, according to Health Canada. Approximately 300,000 individuals now live with the disorder.

In March 2010, Stanton Territorial Health Authority began training an FASD diagnostics team, said Barb Beaton, child development team co-ordinator.

The team is comprised of a pediatrician, a neuro-psychologist, an occupational therapist and a speech and language pathologist, as well as an audiologist.

In April 2010, the team began holding clinics for children aged seven to 17. Beaton said age seven was chosen because at that age, the team can better assess the child's brain function, particularly when performing psychology assessments.

"The child, the team and the family can get a better idea of how the child's brain is working," she said.

After assessment, the team works with a rehabilitation team in the child's region to help meet the child's needs.

Lori Twissell, the health authority's family liaison worker, said the groups work together to form a team in the child's home community, which can include members of the region rehabilitation team, school staff and family members.

"Sometimes having the adults around the child understand the small adjustments to the environment that would support the child can really make a huge difference," Twissell said.

Twissell said there are 10 clinics per year, which are funded by the territorial Department of Health and Social Services through the federal First Nations Inuit Health department.

"For the most part, we're talking about 10 to 12 children per fiscal year," she said.

Funding is provided until March 2013. At that time the team will apply to continue the clinics.

See next week's News/North for the second part of our series on FASD.

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