Shirley McKay’s teenage son can play poker but he can’t read.
Her other son has read Moby Dick and all the Harry Potter books.
But ask him what they’re about and he won’t be able to tell you until he’s seen the movie.
Both of McKay’s sons have fetal alcohol spectrum disorder.
Her one son will never read. The other will never fully understand what he’s reading.
Their brains are permanently damaged.
“It’s like a filing cabinet with no files. The files are all lost. That’s what FASD is – a brain full of holes,” said McKay.
McKay has four adopted boys with FASD.
All of them struggle to keep up with other students in their grade.
Something as simple as one of her boys not sitting in “his” spot at the breakfast table can throw off his whole day at school.
Teachers will come to McKay and say, “Your child wasn’t doing very well in school today. He wasn’t listening. Or he yelled at me,” she said.
Routine and structure are critical in the McKay household. McKay will send her kids to school late if they didn’t have time to eat breakfast. Or she’ll keep her kids at home if they’re too tired.
‘‘They’re tired people,” she said. “It takes their brains maybe five times more energy to do what we wouldn’t think twice about.”
The brain of someone with FASD is physically different from a healthy brain.
It’s often smaller and smoother than other brains. The nerve fibres that carry information about language, memory, impulse control and reasoning can be missing or damaged. In extreme cases, there are actually holes in the brain.
School can be a huge challenge for children with FASD.
They have a hard time focusing, get easily frustrated and need specialized supports in the classroom.
“All the kids when they talk, it’s distracting. It comes in like this so you can’t hear the teacher,” said 25-year-old Jessica Fulmer, motioning with her hands towards her face.
She dropped out of school in Grade 10 and didn’t know she had FASD until she was diagnosed at 19.
Now she lectures to school-age children about the disorder.
Like McKay’s children, her scholastic abilities varied wildly.
“I was able to type by the age of five,” said Fulmer. But it took her years to learn how to print.
When and how much a mother drinks during pregnancy determines the abilities of that child later on.
But there are similarities that are shared by many children with FASD.
They need lots of repetition, they often have co-occurring attention deficit hyperactivity disorder and they have trouble understanding abstract concepts, making subjects like English and math challenging.
That’s why having an educational assistant for a child with FASD is vital, said McKay.
But getting one can be a struggle.
“I’ve had to fight to get support for my kids from primary school into high school and it was a challenge right up to the day school started,” said McKay.
One of her sons has extreme anxiety and paranoia in addition to FASD.
He constantly misinterprets social cues and is easily provoked by something as simple as someone smiling at him.
“There has to be an external person out there to say, ‘Don’t hit that person, she’s not laughing at you. This is just the way she looks.’ You have to explain to him why people look that way or say those things,” said McKay.
When her son started high school, he almost did so without an educational assistant. The school was resistant to giving McKay’s son the aid who had supported him throughout elementary school, even though his psychiatrist and doctor both recommended it.
Her son looks like any other teenage boy. You might never guess that he has FASD by looking at him.
And this can sometimes work against him.
“If a child looks like he’s special needs, he gets more attention. But there’s a lot of invisible fetal alcohol people who may not have the facial features but they’re just as disabled,” said McKay.
She knows of one mother in her son’s class who has had to go out and hire an educational assistant for her son because the school wasn’t providing him with one.
And sometimes the school will pull the EA away if the child appears to be doing well, said McKay.
As soon as that happens, the child starts acting out in class. Now she keeps her sons home on the days that their assistant isn’t available.
It took Tagish resident Liz Baker two months to get an aid for her foster son with FASD and severe hyperactivity.
“Every year I go through the same thing advocating for him,” she said.
Her 10-year-old foster son has a hard time with math but excels at building things with his hands.
“You’ve got to get the right EA,” said Baker.
The child won’t adjust to the support person. It’s the support person that has to adjust to the needs of the child.
It can be a learning curve for teachers and administrators.
“When I started teaching, we didn’t even have a word for FAS,” said John Wright.
He’s the principal at Elijah Smith Elementary School and has been a teacher and administrator in northern B.C. and Yukon schools for more than 40 years.
“I began to realize that if this child sitting here in front of me is having difficulty with a certain concept, I have to figure out different ways to teach that boy or girl. I can’t keep hammering at them the same way I was before.”
An important piece of the puzzle is getting a proper diagnosis of the child so that teachers know what the child’s strengths are, he said.
However, certain things can stand in the way of a child being diagnosed with FASD.
Race is one of them.
First Nation students are often singled out as having FASD. When other children act out in class, it’s ADHD.
Wright has seen it happen before.
Also, biological mothers need to be willing to admit to drinking while pregnant. Not always an easy task.
That’s why the school has an outreach councillor that works with parents of children who may have FASD to encourage diagnosis and find supports for children both in school and outside.
Providing resources for children with FASD is a priority, said Glenda Eberlein, the Education Department’s special programs manager.
“Teachers in Yukon receive a great deal of training, some of it specifically for students who have FASD and a lot of it for children who have many exceptionalities and challenges,” she said.
As far as she’s concerned, there are an adequate number of EAs in the school system for children with FASD.
McKay isn’t so sure.
She likes to get together with other parents of children with FASD. They compare notes on what supports they each receive.
The Department of Education isn’t consistent on how it doles out support, she said.
So she teaches other parents how to advocate for their children at school.
“These kids with FASD have an equal right to an education,” said McKay.
“It’s like saying to a person with a wheelchair, sorry but you have to take your classes on the second floor but we’re not putting in an elevator or a ramp. So you have to climb those stairs yourself.
“And that’s what our kids are doing – they’re climbing those stairs and they’re dropping out or they’re failing.”
This is the fourth in a six-part series on fetal alcohol spectrum disorder in the Yukon. The writer received assi stance from the Canadian Institutes of Health Research for this series.
* FASD is an umbrella term that refers to a spectrum of disabilities caused by prenatal drinking. In the Western world, it’s more common than Down syndrome and cerebral palsy, affecting at least one in 100 people.
* 80 per cent of children with FASD have hyperactivity
* Children with FASD have a hard time understanding abstract concepts, have poor memory and language skills and get easily frustrated.
* Intelligence scores for children born with FASD can vary widely from extremely low IQs of 20 to higher IQs of 114.
* Early diagnosis can help identify a children’s strengths and where supports will be needed in the classroom.
(Statistics from the Journal of the American Academy of Child and Adolescent Psychiatry)