FASD diagnostic clinic helps parents, teachers of affected children

A program aimed at helping parents and teachers better understand the needs of children with Fetal Alcohol Spectrum Disorder (FASD) is seeing positive results in the classroom and at home, according to a specialized diagnostic clinic in the Northwest Territories.

"If we can help the people around the children recognize the children are behaving in a way that supports their brain function, that allows families, communities and schools to be more supportive and understanding," says Lori Twissell of the N.W.T. FASD Family and Community Support Program.

She's part of a team that has assessed and diagnosed close to 60 children from across the territory since 2010. Each child diagnosed leaves the program with a tailored plan and support network in their community.

FASD is an umbrella term used to describe a range of lifelong physical, mental and developmental disabilities that occur when a baby is exposed to alcohol in the womb. People with the disorder can show impulsive behaviour, and struggle with memory and learning. Health Canada estimates more than 3,000 babies a year are born with FASD. About 300,000 people are currently living with it in Canada.

Hidden disability

"The most challenging thing about kids who have been prenatally exposed to alcohol is [it's] a hidden disability. The behaviour is all people see," says Tammy Roberts of the Foster Family Coalition of the Northwest Territories, who has cared for children diagnosed with FASD by the clinic.

"[You're] praying and praying the diagnosis will come back as they are allergic to milk [and] all you need to do is stop giving them milk and their entire life will be perfect. When you do get the diagnosis, it's heart-wrenching."

But Roberts says the assessment report that comes with a diagnosis from the clinic is invaluable.

"Me going into the school and saying my child needs this and this for support — I don't have a lot of clout," she says.

"When it shows up in the test that maybe this child has some challenges with memory, [the team] will come up with some strategy for memory and those will come to the school. They have the evidence to back it up."

Diagnostic team

The Health Canada-funded clinic is run by Stanton Territorial Hospital and the diagnostic team consists of a speech language pathologist, occupational therapist, audiologist, neuropsychologist from Edmonton, pediatrician and a family support worker.

The program receives on average about two referrals a month, but only has the capacity to work with about 10 children each year. Children suspected of having FASD need confirmation of prenatal exposure to enter the program because other factors could result in similar behaviours and conditions. Tests include hearing, motor skills, language development, cognitive and behavioural assessments, among others.

Twissell says the team then makes suggestions for how parents and teachers can help support the child, such as including movement breaks into the child's day or turning a routine into a series of pictures to help remind the child what needs to be done.

"It can be very small adjustments to a child's environment or routine," she says.

"The adults around that child understanding the importance of those adjustments can make a significant difference."

Small adjustments

Merril Dean, co-ordinator of student services for Yellowknife Catholic Schools, says the individual assessments are valuable because they provide "real information on what children can and can't do and therefore we have a better understanding as teachers and more patience."

She says small adjustments don't have to cost a lot of money.

"Providing a fidget for a child who needs to move, providing alternative seating, changing the environment because the children need to focus are not high cost items," she says.

But Dean says it can be tough to meet the recommendations when there's not additional funding allocated along with a diagnosis. Schools in the Northwest Territories receive inclusive schooling funding based on total enrolment — equalling just over $26 million in 2014-2015.

"Unfortunately we do have children, whether they are children with FASD or other conditions, who could benefit from some additional support in the classroom and don't necessarily get it because the funding supports are taken up by children who have significant needs," she says.

Twissell says she considers the program successful as more parents, including birth mothers, reach out to the clinic.

"Sometimes parents and families are cautious when they arrive for the assessments," she says.

"It can be a difficult decision to access a diagnosis, given the relationship to prenatal alcohol exposure, but when families are leaving, the kids are happy and the parents are grateful for the information."