“Your mind immediately goes to what these kids have lived with,” she says. “I remember going down the list and thinking ‘God, how could someone even ask that?’ ”
Tracy and her husband agreed they were equipped to adopt a child with a history of mental illness, abuse or drug exposure. But they admitted that they did not feel prepared to take on a child who needed around the clock medical care. Tracy says they also made it clear that a child with Fetal Alcohol Spectrum Disorder “was probably more than what we could handle.”
Then, in the spring of 2010, more than three years since they started looking into adoption, the couple was paired with not one but two children — a four-year-old-boy and his seven-year-old half-sister. When the adoption was finalized, they were told their son’s birth mother had just had another baby boy in need of care as well. By Thanksgiving of 2011, Tracy had a family of five.
Given the circumstances, Tracy and Eric were aware that all three of their children had experienced trauma of some sort. They were told their eldest son probably had ADHD. But none of this explained why both he and his sister continued to struggle in school despite interventions such as modified math and reading programs and occupational therapy. Or why, by 2, their youngest son was missing critical milestones like walking and talking.
Tracy decided to join a number of adoptive-parent support groups to see if other families were having similar experiences. She also started reading more deeply on children who had experienced trauma, books that were filled with highlighter and sticky notes by the time she was through. One disorder came up again and again: FASD.
Tracy tried to push the possibility from her mind. It can’t be that, she thought to herself. Still, when she and Eric heard about an FASD training session in Hamilton, Ont., they scrambled to find childcare and made the five-hour trek.
“We sat in that room listening all day and left that afternoon feeling like we’d been run over by a truck,” says Tracy.
Soon after, the couple pursued diagnoses for all three children. Their daughter didn’t meet the criteria for FASD, but Tracy says both her boys have the facial features indicative of the disorder — small eye openings, a thin upper lip, and no groove between the nose and lips — as well as cognitive and sensory challenges. Her youngest son, now 8, still can’t read and needs to be supervised at all times because of his impulsivity and inability to understand cause and effect; her eldest son, 13, requires special breaks at school to keep him focused.
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Tracy now works from home so she can manage the boys’ packed schedule of appointments, as well as meltdowns that can make getting ready for school a multi-hour process. Although less frequent now, she says meltdowns at school have also led to sometimes daily calls asking her to pick up the boys. In addition, she estimates that last year alone the cost of psychological counselling, medication and special programs for her three children added up to about $25,000.
“This isn’t a case of let’s just figure it out for another year or two,” she adds. There is no cure for FASD. “This is the rest of their lives. Whether either one of my sons could ever live independently is a different question — just from a pure life-skills perspective they will need incredible support around them as adults.”
Tracy and her family cannot be identified. Provincial law prohibits naming anyone involved in a child protection hearing. But the Ontario mother believes it is important to share her story — which she says is troublingly common among adoptive parents. As a board member for one large support group in the province, Tracy says she’s met dozens of families who were either completely unaware that their children had been prenatally exposed to alcohol or were ill prepared to raise a child with FASD.
In Canada, child welfare is a provincial responsibility and there is no national data on FASD among kids in care. But research published in 2014 on Alberta, Manitoba and Ontario found a prevalence rate three to four times higher than estimates for children in the general population. Broader research on child welfare systems across North America suggest the prevalence of FASD could be as high as 17 per cent.
Caroline Newton, a spokesperson for the Ontario Association of Children’s Aid Societies, says agencies cannot comment on specific cases. But she says they share the best information they have with prospective adoptive parents. The problem is that sometimes that information can be limited “for a variety of reasons.”
“With FASD,” says Newton, “the stigma associated with drinking during pregnancy often acts a barrier for women who are disclosing potential underlying risks to a child’s health.”
Both adoptive parents and experts who spoke to Postmedia, however, say the child welfare system can and must do better — both to assess the risk of prenatal alcohol exposure and to prepare families for the results.
Both Mary Hutchings and her partner, Sharron Richards, worked at the Children’s Aid Society of Toronto for more than 30 years. Now retired, they remember well the consequences for both kids and adoptive parents before FASD was understood within the system.
“These kids were breaking down placements,” says Hutchings, who was a front-line worker for decades before becoming CAS Toronto’s associate director of child and youth services. Children would be seen by psychologists, perhaps diagnosed with ADHD or conduct disorder or reactive attachment disorder, she says, “but the medication wasn’t helping, and the interventions weren’t helping.”
Although Richards was the director of CAS Toronto’s community development and prevention program — an effort to help high-risk groups care for their families more safely and keep their kids out of the child welfare system — it wasn’t until the early 2000s that she first heard about FASD while working with a group of adoptive parents.
FASD has been documented since the 1970s. But according to Donna Debolt, an FASD consultant for children’s aid societies and mental health organizations across the country, it wasn’t until the mid-1990s that awareness of the disorder grew among social service agencies — first in the West, then in central Canada. Some regions, she says, still don’t give FASD much attention.
As a result, many children were misdiagnosed. “It was all about trauma and all about attachment,” says Hutchings. “FASD just wasn’t on peoples’ minds.”
At CAS Toronto that has started to change. Brenda Packard, a child protection supervisor there, says staff are trained to ask birth mothers tough questions about substance use during pregnancy. Even firm denials are followed up on several times. “And if we can’t get good straight answers,” she says, “we go around the mom: Did other people see her drinking — if she was at a shelter, we will ask there, we will talk to grandma.”
Packard admits, however, that staff can be wary of documenting potential prenatal exposure unless alcohol consumption can be clearly verified. Although she says strong suspicions should certainly be shared with adoptive parents, the first step for case workers is to support birth mothers in caring for their own children safely. If a birth parent can’t do that, CAS Toronto will then make every effort to place a child with another family member. Foster care, and any future adoption, happens only when other options fail.
But Debolt suggests a different approach to addressing drinking during pregnancy — regardless of whether a child remains with a birth mother or is placed with an alternate caregiver.
“Everybody needs to think, ‘Has this child been prenatally exposed?’ If the answer is no, and there’s zero evidence then that’s fine. But the minute you believe that there’s risk or evidence of it, then we should have mandatory fields around what will we do about that,” she says.
“You don’t wait until you’re 400 pounds to decide you’re at risk for diabetes, and we do that with FASD all the time.”
Too often, she says, negative outcomes for individuals with FASD — whether addiction, homelessness or incarceration — are blamed on the disorder. But that’s the “unsupported trajectory,” she says. “You look and the child has had 14 home placements and 22 school placements.”
Knowledge of prenatal exposure to alcohol is only a warning flag, however. Not all children go on to develop the disorder. Others may not show any symptoms until they miss age-appropriate milestones.
“If we’re talking about an older child and we already know how (prenatal alcohol exposure) is affecting them, either socially, academically or behaviourally, obviously that whole picture is shared with the adoptive parent,” says Janet McShane, resource support worker at CAS Toronto. “But I know sometimes when we’re looking at babies we have no idea how it might affect them, and I think not quite as much thorough information might be shared.”
This helps explain why even adoptive parents who are told their children have been exposed to alcohol in utero may not feel prepared for the challenges they face.
But Debolt has simple advice to improve outcomes: training, training and more training.
Adoption education is generally a requirement for prospective parents across Canada. Caroline Newton, of the Ontario Association for Children’s Aid Societies, says the province’s PRIDE program (Parent Resources for Information Development and Education) directly addresses “children who develop complex needs, including FASD.”
But Debolt says FASD is a small part of most courses across the country, and training may happen only once — often months, sometimes years, before a child is actually placed with a family.
“We check the box and say we’ve done that,” she says. “Nobody has got it once. A system that says we’ve done training once and it’s done, that’s a broken system.”
Agencies do offer ongoing supports to adoptive families after children are placed. But Debolt says what’s needed is much more focused. She advocates annual training programs on how the brain of a child with FASD works, so that parents can understand their kids’ limitations better and adjust their own behaviour accordingly.
Beyond education, adoptive mothers and fathers may need psychological support.
“I can’t even tell you the number of times I’ve gone through just huge grief and loss,” says one Edmonton mother, who adopted her son when he was a toddler. “Figuring out that no matter how many things I did or how much support I had in place, my son was not going to graduate from high school — that was huge.”
Respite programs can help parents manage the emotional and physical toll of caring for children — including adult children — with FASD. But as Debolt points out, some parents don’t know how to ask for the help they need. Respite options also tend to be crisis-oriented.
A 2013 pilot project in Alberta shows how powerful enhanced support can be. The program included 12 hours of FASD training for case workers and caregivers, as well as 48 hours of respite care every month for parents and others living with children diagnosed with or suspected of having FASD. The result was almost three times fewer placement changes — a critical improvement in stability.
Kerri Fogarty, a case worker in Stony Plain, Alta., says the system also clearly needs to change so that the wider circle of care around children with FASD is operating with the best information for the best possible outcomes. She’d like to see mandatory core training, as well as refreshers three times a year, but not just for front-line workers.
“I want my manager to go to training, I want my supervisors to be going to training,” she says. “We all need to have the same understanding and we need to change our own thinking, and we can only do that with training because without it we become stagnant.”
Experts like Fogarty and Debolt argue that such training and supports would equip caregivers with critical tools to help children with FASD throughout their lives.
Many of Tracy’s day-to-day challenges would be familiar to any parent.
In the weeks leading up to her youngest son’s year-end concert, for example, he had been anxious about performing. “How much longer until the Christmas show, Mom?” he asked her, again and again.
But such rites of passage are uniquely loaded for children with FASD. Loud music, bright lights and complex choreography are not easy when you have sensory and memory challenges. Stress can also spiral.
“At the end of the day he’s a little boy who wants all the same things that every little kid wants,” Tracy says. “It’s just the getting there is so much harder because of how his brain works.”
Reflecting on her experience nearly a decade since adopting her three children, she takes a few moments to find the right words.
“It has challenged every single conception of who I thought I’d be as a parent and it’s the hardest thing I’ve ever done — and I wouldn’t change it for the world.”
https://nationalpost.com/feature/a-broken-system-adoptive-families-say-child-welfare-agencies-are-failing-on-fasd
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