September has been designated by the Ontario government as Fetal Alcohol Spectrum Disorder (FASD) Awareness month.
The Greater Toronto Area (GTA) Fetal Alcohol Spectrum Disorder (FASD) Self-Care Group,
Would like to to contribute to your greater awareness and understanding of FASD by sharing
with you their article titled “Adopting, Do You Know About FASD?”. The articlereflects both
the member’s lived experiences as adoptive parents of a child, youth or adult affected by FASD
as well as with their suggestions on how adoption services can be improved to better prepare
families for the possibility of adopting a child or youth affected by FASD.
Adopting: Do You Know About Fetal Alcohol Spectrum Disorder (FASD)?
by Dafna Isenberg
Introduction
Fetal Alcohol Spectrum Disorder (FASD) is a brain-based, neuro-developmental disability resulting from prenatal exposure to alcohol. It is not curable. FASD impacts a person’s physical, social, emotional and cognitive functioning. It is the leading cause of developmental disabilities in North America; recent research has found that up to three-five percent of children in Canada are affected by FASD.
Research has shown that the majority (80%) of children with FASD are not raised by their biological parents, and are cared for by other family members or by child welfare agencies. Many will be adopted. In Canada, FASD is significantly more prevalent among children in out-of-home care than it is among children being raised by their families. One 2014 study in Manitoba concluded that at least 10 percent of kids in care were affected by FASD in Ontario, Manitoba and Alberta; the authors cautioned that there were significant limitations to their ability to collect data, and they considered the 10 percent figure an underestimation of the true prevalence of FASD among children in care in the three provinces. They pointed to the fact that parental substance abuse was a factor in between 40 and 80 percent of families involved with child welfare systems, and it stood to reason that “a high proportion of children in care are likely to have been prenatally exposed to alcohol.” The same is true for children who are adopted through child welfare systems.
Parenting children with FASD is uniquely challenging. They tend to require a great deal of extra support to reach their developmental milestones, and their behaviour is often difficult to manage; some children can be physically aggressive. In Ontario, several adoptive parents of children,youth and adults affectedby FASD have formed a peer support group; many of them have been parenting kids with FASD for 20 years or more. They are all strong believers in the importance of adoption for children with FASD. They have a lot of wisdom to share, both with prospective parents and adoption workers. They offer advice about some of the most important lessons they’ve learned in the hopes that it will help other children and families.
1) Transparency is key
Mary Ellen and her husband brought their older son home when he was three months old. The adoption was private; the baby had been in Children’s Aid care shortly after being born, but his birth mother eventually agreed to adoption and worked with the same agency with whom Mary Ellen and her husband were working. As the process moved along, the couple were shown some of the documentation collected by both CAS and the private agency and learned that their son’s birth mother had reported having a few coolers while pregnant, but said that once she discovered she was pregnant, she stopped drinking.
The baby was healthy and met his milestones, but Mary Ellen couldn’t shake the feeling that something might be wrong. She had learned about FASD in the earlier stages of the adoption process and had always been worried about her son’s prenatal exposure to alcohol. His development was normal, yes, but always at the outer edge, “like the fifth percentile,” she says. He was late to sit, to crawl, and to walk. When her son started kindergarten, he started struggling. His teachers would frequently call Mary Ellen about his disruptive behaviour, a pattern that only worsened as he progressed in school. Mary Ellen and her husband tried all the recommended parenting techniques to help their son get on track, but nothing worked.
Four or five years later, the couple adopted their son’s younger half-brother. All the same issues cropped up. He was late to sit, late to crawl, and late to walk. His speech was delayed. When he started school, the teachers started calling. Meanwhile, doctors had raised the possibility that FASD was the underlying problem for her older son. Without confirmation of drinking by his birth mother during pregnancy, he was not eligible for a formal FASD diagnosis.. But Mary Ellen sought out more information about her younger son’s birth history and discovered that there had been significant alcohol exposure before he was born. When he was assessed for FASD, he met the criteria.
In hindsight, Mary Ellen wonders whether the workers involved in her sons’ adoptions —both at the private agency and at CAS—knew more than they had shared, particularly about the birth mother’s social history. Perhaps there was information that might have more clearly raised flags about FASD. It’s not that she thinks anyone was deliberately deceptive, but she does wonder if, in the interest of smoothing out the path to adoption, workers may sometimes avoid engaging in more fulsome conversations about potential problems. Knowing then what she knows now would not have caused Mary Ellen to “undo” the adoptions, she says; after years of infertility heartbreak, her children “saved my life.” But knowing then what she knows now might have saved her family a lot of grief. “We spent the first nine years trying to figure out what the heck was going on,” says Mary Ellen. “Those years were wasted. Whereas, if we had been given a few more facts that steered us in the right direction, our kids could have received potentially helpful treatment at a time when it might have made a difference.”
FASD is forever
Adoption agencies also need to be transparent with families about what living with FASD actually means. Lori, who has an 18-year-old son with FASD, says adoption and child welfare agencies need to level with parents about the enduring challenges they are up against. They need to convey to adoptive parents that FASD is a lifelong condition. “Be honest with the parents, don’t try to sugar coat,” she says. “This is not going to get better. It might get a little easier, but it isn’t going away.”
While every child with FASD has their own specific needs, there is some common ground. They are often described as functioning at about half their chronological age in terms of executive functioning. Abstract concepts can be hard for them to grasp. They tend to experience everything in the moment, and lose the context of things that happened in the past or are planned for the future. Carol and Steve, whose 19-year-old adopted son has FASD, describe him as a “three-day kid.” “He has yesterday, today and tomorrow,” says Carol. “And his entire life happened ‘yesterday,’ even if it’s something that was seven years ago.” At the same time, he has trouble remembering an incident or argument that took place hours before or appreciating why his mom might still be upset about it. In his mind, “you’re mad at him and he didn’t do anything.”
Kids with FASD need a great deal of support in adolescence and young adulthood with such milestones as graduating from high school, entering the workforce and navigating romantic relationships. Carol and Steve spent many years closely monitoring their son’s use of the Internet and when he started dating, they chaperoned any in-person contact. “When everything’s going well, that’s not when you stop,” Carol says. “That’s when you maintain, because that’s why they’re doing well, because they’re being supervised and supported.”
Adopting a child with FASD often brings unanticipated sacrifices. Maureen was a single mother and working full-time as a school principal when she adopted her daughter, then 18 months old. Maureen learned about her daughter’s FASD six months after bringing her home and started seeing problems with her daughter’s speech early in her development. At age eight, Maureen’s daughter was really struggling at school and needing a lot of extra support, so Maureen decided to retire. She’d been employed for 35 years but had to supplement her pension with part-time work in order to pay for the services her daughter needed. Maureen discovered that, after her daughter turned 18, certain services were no longer available. The disability tax credit, for example, disappeared. Though she was eventually able to re-enrol her daughter for this credit, Maureen says she had to go “through a song and dance.” Whereas, she says, “it should be automatic.”
Most people who are born with FASD are not able to live independently as adults. They often live with their parents long into adulthood and need active help managing their money, their health, their emotions and even their daily routines. “Are you willing to be a parent to the equivalent of a 14-year-old when you’re 75?” says Lori. “Because that’s what’s going to happen, they’re never going to leave you.” Helen, who is 66, has a 23-year-old adopted daughter with FASD. “She just can’t be away from me,” says Helen. “She can’t travel. She can’t go places. She can’t sleep over. We are always working on strategies to help with her separation anxiety and to see small steps to her taking more independence, but know she will always need support.”
Of course, most children with FASD will outlive their adoptive parents, and parents have to think about who will help care for their children after they die. Helen adopted two girls with FASD after having already raised two older biological daughters. Each of her older daughters has agreed to be the trustee for one of their younger sisters. Other parents set up micro-boards, which are small groups of people who come together to support people who have FASD after their parents are unable to care for them or have died.
Beyond the practical arrangements parents have to make for their children’s future, there can be an emotional toll to thinking about what’s ahead. Mary Ellen experiences “ongoing and unrelenting grief for that dreamed-and wished-for child and dreamed-and wished-for family, and future grief and loss around what may or may not be for both of my children and their futures,” she says. “It’s beyond my lifespan or capability to help them.”
Sometimes FASD is bigger than you
Parenting a child with FASD requires a lot of resilience. Parents often meet massive resistance to limits they set, and children frequently say hurtful things out of frustration. Pam, who adopted two girls with FASD, says it’s important for parents to know their own strengths and needs. “Can you tolerate humiliation in public? Because that’s what our children will do. Can you tolerate the constant verbal beating that you’re a horrible person? Because that’s what our kids do.”
Pam’s husband, Sean, says it’s important for parents to let go of certain kinds of expectations, both of their children and themselves. For example, kids with FASD sometimes struggle with things they appear to have already mastered; one of his daughters would tackle math problems with ease one day, and then forget how to do them the next. It’s a feature of FASD that can leave parents feeling both disappointed and defeated, but the best thing they can do is accept it. “Every day is a new day,” he says. “It’s okay if you have to repeat things. Don’t fight. Just introduce it again, it’s fine.”
And it’s critical to try not to take things personally. “Even when your kids are reacting to something you’ve done or not done, it’s actually not you,” says Carol. “That was a hard one for me to understand. You’re beaten down, you’re exhausted, and he’s still coming at you. You just want to make it stop and you’re trying to control your own reaction so that you make it stop in a good way.”
In some rare cases, kids living FASD can be very violent. This was the case with Lori’s son, who was adopted as a baby. As he got older, the family home became unsafe. “We had everything under lock and key. We had to count the knives. It came to a point where I never slept, because I always had that constant fear,” she says. Lori and her husband had to make the difficult decision to place their son in care when he was 12. Today, he lives in a home where he is the only resident and has two staff on shift at all times. He speaks to Lori several times a day, and comes home for visits—but not overnight. “We’re a family that can’t live together,” says Lori. “But we’re still family.”
Parents of FASD kids need each other
Parenting kids FASD can be lonely. “You become an island in the middle of the Atlantic,” says Lori. “People don’t want to deal with what you’re dealing with.” Even when close family and friends try to be supportive, they can’t truly understand the day-to-day challenges of caring for someone with FASD. “Peers are the only ones who understand,” Sean says. “You can’t really explain what we go through to someone unless they’re going through it. Me saying that my daughter’s run away and was about to walk in front of a train and now she’s in a hospital and the other one is on a window ledge—other people think that’s not true. But that’s exactly what happens in our life.”
All the parents interviewed for this story describe the peer support group they participate in as a lifeline. Lori says most of her friends are other parents of kids with FASD. Many parents also found other people along the way who became invested in their kids’ progress. “Pam and I became friends with our daughter’s worker at school,” Sean says. “I would phone the worker when we arrived at the school, and she would meet us at the door and make sure our daughter got to class on time.”
Of course, he and his wife played a big role in establishing the relationship with their daughter’s worker. Similarly, Carol says she has taken the approach of trying to befriend everyone in her son’s life. “Instead of telling them what to do, I work with them,” she says. For example, when her son was going to camp, Carol would go in with him every morning and talk to his staff about how his day was going so far. When she picked him up, she would go in again to find out how he’d been since she’d last seen him, and whether the staff needed anything from her. Carol also remains close friends with one of her son’s resource teachers from grade school. “Anyone who showed an interest—those are the people who stayed around,” Carol says.
FASD is not the end of the world
With enough of the right kinds of support, people born with FASD can lead happy and fulfilled lives. All the parents interviewed for this story described significant successes their children have achieved. One of Helen’s daughters has settled down in government-supported housing; the other lives at home and helps babysit Helen’s grandchildren. Maureen’s daughter has gone to college, plays volleyball and is now working with an employment counsellor to figure out her career goals—she is interested in acting and has a talent for photography. Sean’s and Pam’s older daughter completed a college program in early childhood education and has her driver’s license; their younger daughter recently graduated from high school with honours. Carol’s and Steve’s son was asked to work at his former day camp as a mentor for younger kids with FASD. “They said he was just amazing,” Carol says. “He was able to relate to the kids far better than the adults were, to advocate on their behalf if they needed a break or were having a hard time. The counsellors loved him and the kids adored him.”
Mary Ellen’s boys are both doing well overall. “There are some areas of struggle but we kind of know where they are,” she says. She and her husband have shifted the way they support their sons according to what tends to work best with kids who have FASD: avoiding confrontation and conflict, making routines fun and offering distractions when frustration sets in. She can’t help but wish they’d been using this approach all along. Still, she says, “we’ve had a lot of victories in our home.”
Advocates Mary Hutchings and Sharron Richards run a peer support group for adoptive parents of kids and adults livingwith FASD ( in which Mary Ellen and all the parents quoted in this article participate). They say adoption legislation, policies, funding and services—whether child welfare or private—must become “FASD informed.” Given the high prevalence rate of FASD among children and youth available for adoption, FASD should be “ruled in” as a possibility until it can be “ruled out.” Child welfare and private adoption staff must be better trained to collect birth histories in ways that encourage biological mothers, fathers and their family members to feel safe in confirming use of alcohol during pregnancy. In a commitment to transparency, this information must then be shared with adoptive parents as it can lead to an early diagnosis and appropriate intervention plan, both of which are critical to helping adoptive parents better understand, accommodate and manage the disability. Provincial government policies and funding must change to allow adoptive families to access the long-term, post-adoption funding support required to ensure family stability, permanency and more positive outcomes. It is in the best interest of the child and the families who love and cherish them.
