Her son's disorder has been part of her world for years. Now this mom's focus is helping others
Tanya Walsh's job at the Vitalité Health Network connects her with families navigating life with FASD
Tanya Walsh is pretty open when she describes Ben, her 13-year-old son.
Ben struggles with impulsivity and has trouble regulating his emotions. He has temper tantrums, and he can be aggressive. He's hyperactive, doesn't sleep very much and has personal space issues.
Tanya has regularly had bruises — and sometimes bloody noses — from Ben hitting, kicking and throwing things.
And then you meet Ben on a good day and none of that makes sense.
He's sweet and eager, smiles a lot, and is keen to share stories — sometimes about his day or random memories from his life, often deferring to his mom with a quick "now you tell the rest, Mom."
Ben knows he has fetal alcohol spectrum disorder, or FASD. He also knows it makes him learn differently, and he know that it causes him to do things that might seem "rude" — as he puts it — to other people.
"Underneath all of that is somebody who's eager to please and wanting love and attention, the same as everybody else," said Walsh.
"Yeah, I agree with you, mom," Ben immediately added.
A disorder with a high impact
FASD is the leading known cause of developmental disability in Canada, according to CanFASD, an interdisciplinary research network that includes the Public Health Agency of Canada and Health Canada.
It's estimated that about four per cent of Canadians, or 1,451,600 people, have FASD. That's more than autism, cerebral palsy, and Down syndrome combined, according to CanFASD.
FASD is caused by alcohol exposure during the mother's pregnancy. It causes brain damage and growth problems.
Symptoms can include an abnormal appearance, short height, low body weight, small head size, behavioural problems, learning difficulties, hyperactivity and problems with hearing and sight, according to the U.S. Centers for Disease Control and Prevention.
About 90 per cent will also experience mental health issues, said Walsh.
None of that was on the radar for Walsh and her husband when Ben arrived in their lives after a long wait to expand their family.
They adopted him after unsuccessful fertility treatments and a failed adoption, and while the Walshes knew Ben's birth mom "wasn't in a great place," they were grateful she was willing to give him to a couple who could provide a loving home.
They soon started noticing issues with Ben's development, and what followed was a series of appointments and diagnoses.
When he was three, they were told he had autism.
"It fit," said Walsh, "but I knew in my mommy gut that it wasn't right."
After four years of exploring options for autism, Ben was referred to an autism specialist who soon determined Ben didn't have autism but rather FASD.
That started the family down a separate — and unfamiliar — path.
Then Walsh's husband lost a two-year battle with cancer.
"I didn't even have time to grieve the loss of my husband because I was too busy navigating the system," said Walsh.
Ben's needs, which had always been great, became too much to bear for a single parent. She describes Ben as "the Energizer bunny on steroids," and a boy he only slept two or three hours a night, which meant she usually slept less than that.
She said she was "a walking zombie."
She was approved for respite care in a therapeutic foster home two or three times a week, but they said Ben's needs were too high and declined to take him.
He was eventually placed in a specialized unit in a group home. Walsh refused to give up her parental rights. She calls it "parenting from a distance."
Bringing experience to the job
While she advocated for help for herself and Ben, she discovered the Vitalité Health Network's N.B. FASD Centre of Excellence, which provides services to families affected by FASD.
According to its website, its mission is to prevent alcohol exposure during pregnancy, accurately diagnose people with FASD, and strengthen community resources by working with individuals, families and care providers.
At the time, Walsh had to travel to the centre's regional co-ordinator in Moncton, since there wasn't one in Saint John.
When Vitalité decided to put a co-ordinator in Saint John, Walsh applied for the job and got it in 2018. There are now two in Saint John.
Walsh said her experience raising a child with FASD gives her a unique perspective and first-hand knowledge of what parents are going through.
Walsh said she asked herself "why me?" a thousand times.
"Why do I have to be a widow at 36? Why do I have to be a special needs parent? And why does it just feel like this black cloud is over me?
"And it's only been recently that I'm able to say that we're on the other side of that pain and that sorrow, and by …supporting other families and seeing the struggles, I now understand that that was maybe our purpose," said Walsh.
"As much as our story sounds pity and despair and messy and sad and all of that, what we like to take away from it is that we're hopeful. And we want to help people be empowered and to know that it's OK to smile again and that there's brighter days ahead and this storm is only going to last temporarily."
'The judgment from people is horrendous'
Walsh said raising a child with FASD is exhausting and hard to figure out, and that she has learned how to "grieve the child we were expecting and love the child we have."
She also wants to help remove the stigma that mothers face.
Because the condition is preventable, there is a lot of stigma, and likely the reason there isn't the same support networks of parents as there are for some other disorders, said Walsh.
"The judgment from people is horrendous. The judgment our bio moms feel is indescribable," she said.
She said 60 per cent of pregnancies are unplanned, "so you don't know what you don't know."
Walsh also worries about children aging out of care. She said there's a "huge lack of services available for teens and young adults."
"It's a great possibility that when Ben turns 16, he will no longer be able to be part of the program he is currently in."
She worries about young people with FASD once they turn 19.
"We have many teenagers who are forced to couch surf, and be homeless because of a lack of services — age 19, faced with homelessness but in the mind of an eight-year-old, wandering our streets with no love, no support.
"Can you imagine what that must feel like?"