Cleo (left), age 6, Colette, age 4 (right)
I was serenely independent and content before we met,
Surely, I could always be that way again, and yet...
In the musical comedy, "My Fair Lady" (based on George Bernard Shaw's play, "Pygmalion") professor Henry Higgins attempts to turn Cockney flower seller Eliza Doolittle into a lady -- and in the process, he, too is transformed. Similarly, my husband Brian and I had no idea of the impact that our adopted daughters (not biologically related to each other) were going to make in our lives.
When Cleo (now 25) and Colette (23) were little, I thought of them as my "rogue sunflowers," those bright and sturdy seedlings that pop up under the bird feeder in spring. Would they be tall or short - would they have huge blossoms or small? One thing for sure - their impish personalities made them totally captivating.
Cleo was two years, eight months when we brought her home - a chubby blonde cherub with huge, sparkling blue eyes, who had been in foster care since the age of three months. Her two favorite expressions were, "I do it myself," and "I wanna fwing (swing)" and over the next year, I thought my arms were going to fall off from pushing her on every swing she spied.
Three years later, we adopted three-year-old Colette -- a chunky tomboy with a mop of curly blonde hair, a snub nose, wickedly irresistible grin, and golden-brown hazel eyes. Her idea of playing with a Barbie doll was to remove Barbie's head and use the body in the bathtub to troll for whales. We spent a lot of time in emergency wards getting Colette patched up from various risk-taking accidents.
Life was fun though crazy until the girls started school, and our bright, inquisitive daughters were unable to learn to read. We watched each of them slip behind her classmates - and watched heartbroken as their self-esteem crumbled. Cleo, always funny and outgoing, became a shy, terrified introvert. Colette's approach was to join a group of tough little boys.
Getting extra help for our daughters was an endless series of hurdles. First, they needed to be assessed for learning disabilities - involving a minimum wait of a year to see the school board's psycho-educational consultant. Then we waited for the report to be written up. Next, the wait for the "IPRC" - (who knows what the letters mean?) - often known in other parts of the world as an "IEP" (Individual Education Plan). After we'd managed to get the IPRC, then we were placed on a waiting list for special education help.
Cleo managed to be placed in a special education classroom, half-days, in September of third grade. No significant help was available for Colette until fifth grade. Phonics were forbidden as the school system was teaching "whole language." We were always discouraged by the teachers from trying to teach our children the phonic codes. The Ontario curriculum insisted that children be taught to read by memorizing "whole words" - even though psychoeducational tests indicated that both girls had poor short-term memories. Each eventually taught herself to read - Cleo, the summer before second grade; Colette, in sixth grade, on vacation in Jamaica, with no TV but a whole lot of her sister's mystery books to unravel.
When our daughers hit their teens, other problems emerged. At 16, Cleo became desperately unhappy, unable to cope or concentrate on school, and didn't know why. She was in love with a gentle and supportive boyfriend, had made new friends, and everything should have been fine. Aware of her birth parents' bouts with mental illness, I immediately took her to an adolescent psychiatric clinic, where she was diagnosed with severe depression. It was three years before the doctors could get the right dose of antidepressants to combat chronic depression, made worse in winter (Seasonal Affective Disorder). By eighteen, she had also been diagnosed with Attention Deficit Hyperactivity Disorder.
Colette's learning problems resulted in severe acting-out behaviour that took us on a journey to countless psychiatrists and social workers, through the court system, and she eventually spent two years in a residential treatment centre for emotionally disturbed adolescents. When she was nearly 18, I saw a TV item about Fetal Alcohol Effects (FAE) now known as Alcohol-Related Neurodevelopmental Disorder (ARND) and made the link between Colette's learning difficulties, behaviour problems and addictiveness with her birth mother's drinking in pregnancy. We learned that there is virtually no help available for adolescents and adults with ARND in Ontario - with one-third of Canada's population. Researchers believe that about 300,000 Canadians live with Fetal Alcohol Spectrum Disorder (FASD) -- the umbrella term which includes ARND, Fetal Alcohol Syndrome (FAS), partial FAS (pFAS) and other alcohol-related birth defects.
Most Canadians with FASD are undiagnosed. Much research indicates they are at high risk of the "Secondary Disabilities" such as school drop-out, addiction, poverty, unemployment and involvement in crime. Secondary Disabilities occur when people with FASD are not diagnosed, and they are not given adequate support from family, schools and community.
When we brought home our little rogue sunflowers, we had no idea of the life-threatening problems that both girls would face, and how we would have to fight on their behalf. We also had no idea of the way that our society treats children with invisible disabilities - and their parents.
Both of our daughters deserved better - from the health, education, and social services systems. Cleo continues to struggle with her learning disabilities, ADHD and SAD - but she managed to complete high school with lots of special education assistance. Knowing her family background of mental health problems enabled us to obtain a diagnosis within weeks of her first attack of depression, and this may have saved her life.
If we had known from the beginning that Colette was at risk of having ARND, we might have prevented or reduced some of her learning and behaviour problems. Instead, teachers repeatedly told Colette to work harder and concentrate. Therapists told us to improve our parenting skills, although we worked hard at building solid, nurturing relationships with both daughters. Colette now 23, lives on government disability support, and has two preschool children. We are grateful that she did not drink in pregnancy and is working hard at being a good mother. Unlike many young women with undiagnosed fetal alcohol disorders, she is not living on the street, abusing alcohol or street drugs, or involved with crime.
As the song says, Brian and I were "serenely independent and content" before our daughters entered our lives. We believed that unconditional love and a middle-class upbringing were all that a child needs to survive. Now, when we see homeless people or read newspaper stories about adolescents or adults who have committed stupid or terrible crimes, we are not inclined to judge. We know that most of these individuals are struggling with invisible disabilities made worse by dysfunctional families and an uncaring society.
Along with the tears and terror, our daughters have brought us joy, laughter, and love -- and gratitude. We're grateful for having been part of their lives, grateful that we have had the ability to fight for them, grateful for the opportunity to meet hundreds of incredible people we would never have encountered otherwise. Over the past twenty years, our perky little daughters have grown into beautiful young women. We look on with pride mixed with sadness, as each struggles daily, valiantly, with invisible disabilities. Their determination makes us continue to fight, not just for them, but for all children and adults with learning difficulties and mental health problems.
In nurturing our fragile-but-sturdy sunflowers, quite
possibly Brian and I have grown the most of all.
|Toronto journalist Bonnie Buxton recently
completed a book, "Damaged Angels" about Fetal Alcohol Spectrum Disorder.
She and her husband Brian Philcox are co-founders of International FAS
Awareness Day, observed on September 9; directors of FASworld Toronto, a
support and information organization; and co-founders of FASworld Canada,
the national organization for parents, professionals, and individuals
living with Fetal Alcohol Spectrum Disorder (FASD). Bonnie can be reached
at firstname.lastname@example.org FASworld Canada is at