A little background
According to Dr. Gideon Koren, director of the Motherisk Program at the Hospital for Sick Children in Toronto, fetal alcohol spectrum disorder (FASD) affects an estimated one per cent of children born in North America. It is difficult to diagnose and remains under-diagnosed in Canada and elsewhere in the world today.
Since our son was diagnosed with FASD in 1993, we had the good fortune to find support people who, in my opinion, have taken on the work of angels. I will be forever grateful.
But we also discovered that many people, including professionals, know little about FASD and harbour inaccurate stereotypes. We had the misfortune to find many professionals who lacked knowledge and understanding of the unique characteristics of FASD. Like many parents with children with FASD, I often felt alone and helpless while raising our son.
The early years
We adopted our son Michael, now 26, when he was seven days old. He was a difficult child from the get go. He cried incessantly in the early months; startled to sound, light and touch; jerked his body, flailed his arms, seldom experienced calm; wouldn't follow a bedtime routine and slept only a few hours at a time.
Everyone from my hairdresser to all the medical specialists we took him to in his infancy for chronic ear infections, runny eyes, lack of growth, skin picking and more tried to reassure me. Nothing was really wrong. "He'll grow out of it." "He's an active child, just needs to know who's boss." "Enforce bedtime routines, provide a firmer hand and stop being anxious!" "Just relax, mum!" Relax?
My husband Robin and I internalized what people said. We probably were bad, anxious parents.
However, there were moments I allowed myself to think there might be something deeply wrong with Michael. But I didn't entertain the thought for too long. Every adoptive parent's worst fears are about the genetic backbone and first nine months of their child's life, of which they have no knowledge or control over.
What I needed during these early years was twofold
In those early years, I needed, but could not find, medical professionals who had any knowledge of FASD and suspected it might be the root cause of Michael's problems. I also needed medical and social service professionals to respect that I might know more about my child than they did. No one listened when I expressed worry about Michael's development. It was easier to tell me to go home and relax. What a horrible thing to tell a worried mother.
The school years
Within two months of entering the public school system in Grade 1, Michael was expelled for bad behaviour.
Michael's behaviour was bad. He was bullied and made fun of on the playground. He lashed back. He couldn't stay still in the classroom and got up without permission to walk around. He wasn't following multi-step requests from his teacher. He fidgeted, wasn't paying proper attention and resisted moving from one activity to another.
A school psychologist spent a day with him and prepared a report. Michael had a serious "behavioural problem." No mention or suggestion that the behaviour might have an underlying cause.
For years we had tried everything friends, family and professionals told us to. Tough love, soft love, elimination diets (no sugar!), rewards, routines, time outs, 1-2-3-magic; vitamins . . . nothing helped. But everyone knew that the particular recommendation they made was going to be the one that turned everything around. It was heartbreaking every time something failed.
What do we do with him now?
The school psychologist, Michael's teacher and the school principal were three of many professionals we dealt with who, I believed, were over their heads. They didn't have the good sense to say, "There seems to be a problem. I don't know what it is, or the cause, because it's outside of my particular specialization. Let's try to find someone who might know better." I never faulted people for not knowing what to do with Michael. I faulted them for not admitting they didn't know and not trying to refer us to someone who might.
After Michael was expelled from school, we met with a school board committee to decide what would come next. The committee had already decided to place Michael in what was called at that time a "behavioural" class. They also had "learning disability" classes. However, there was an empty space in a behavioural class in our district that needed to be filled, so that's where Michael would be sent.
"Maybe Michael has learning disabilities and should be tested," we said. If we wanted to do that on our own time and our own buck, why not, responded the committee. They had made their decision. Rather than make a placement decision on Michael's needs, they admitted to us that the decision had more to do with their funding formula. Grrrr.
I become an advocate
It was at that moment (surprising it took me so long) that I realized no one would care about Michael as much as Robin and I did. Not surprising, of course, it just meant that this wouldn't be the last battle I would have to fight to get him the help he needed. If we wanted something for him, I would have to fight for it. I often worried about the poor parents who didn't have the skills, language, time, money or knowledge to do so.
I knew I would have to play carefully. Being branded as a crazy, rabid mum (a too-squeaky wheel) would do Michael more harm than good. I would have to be a quiet, patient advocate. But it was hard. Too many people really were not listening, had other agendas or thought they knew something they did not.
I convinced our pediatrician that it was time for a referral to the Child Development Clinic at Sick Kids.
After extensive tests and interviews, Michael was diagnosed with FASD by the clinic's director, the wonderful Dr. Wendy Roberts. He was also diagnosed with attention-deficit/hyperactivity disorder (ADHD) and was prescribed Ritalin, which helped tremendously with many of his behavioural issues.
At the time of the diagnosis, Dr. Roberts said to us: "You won't be surprised when I tell you that the earliest characteristics of FAS during infancy include trembling and irritability. The child may cry a lot, act agitated. As the child gets older, he may ‘flit' from one thing to another; have short attention spans; be prone to temper tantrums and non-compliance; is easily distracted; often hyperfocuses and doesn't respond well to changes, particularly when required to move from one activity to another." The list went on. It described our Michael to a T.
Based on the research to date, the prognosis for someone with FAS was grim. However, Dr. Roberts thought that a loving family, good support services, ADHD medication, time and patience could help Michael beat the odds.
Looking for services at home, special school and elsewhere.
Few, if any, social service, medical or government professionals during the 1990s knew anything about FASD. More often than not, what they thought they knew was wrong. Things have improved somewhat since that time, but FASD remains under the radar, unlike Asperger's syndrome or Down syndrome. I still hear horror stories from other parents.
When searching for support services, I would begin phone conversations by explaining that I was looking for help for our son who had FASD. The two stereotypes I ran into most were "So he's violent, right?" and "I presume he doesn't know right from wrong or have a conscience."
These responses were so ubiquitous I stopped telling people that Michael had FASD.
I described his symptoms and the reasons we were looking for services. "He has learning disabilities and trouble with hygiene, and his social skills are lacking. He doesn't easily understand cause and effect. Our home life is disintegrating. Our daughter isn't getting the attention she needs because our son takes up so much of our time and energy." Doors began to open.
My lowest moment
The worst scenario I faced was trying to get provincial government funding to bring a support person into our home a few days a week. A program was specifically designed for what we needed, but it required that the individual needing support have an IQ under 70. We didn't know Michael's IQ, but assumed it was above 70. However, Michael's needs for the program's supports, due to his actual level of functioning, fit all the program's other criteria perfectly (he needed help with activities of daily living – hygiene, behaviour, social interaction). Nevertheless, we were turned down based on IQ.
I made an appeal to a board of six people (I actually stood there, crying my way through it, since we were in a period of crisis). We were again rejected. We so desperately needed help at home but had financial difficulty providing for it. The rejection was maddening.
Now, nearly 20 years later, I have learned that based on advocacy from families like mine, the IQ requirement has just been removed as a criterion for this funding. Never made sense in the first place.
Can he, or won't he?
With the diagnosis, we were able to get Michael into a "learning disability" class. With the help of his ADHD meds and the determination and devotion of his special education teacher, Michael learned how to read and write, and could sit still long enough to listen to the national anthem and pay attention to his teachers.
When a new provincial government came into power, Michael's special education classes were cut. We had to find a new school, and though it tried to cater to children with special needs, Michael dropped out of school before completing Grade 9. We were devastated.
One of the problems we were constantly faced with, at home and at school, was the question "Can he or won't he?" Many people with FASD appear more capable than they are. Their disabilities are not obvious, and each person is affected differently, depending on what part of the brain was compromised during the first nine months, and to what extent.
Michael continually resisted doing what he was "supposed" to do. Neither we, nor his teachers, understood that Michael's behaviours were consistent with what we now know about FASD. He wasn't willfully choosing to be the way he was.
When Michael's grades were slipping, teachers would say, "Michael, you just need to try harder." "You're lazy, Michael. You can do better." In some ways, Michael could do better. But not without specifically addressing his cognitive challenges. Major characteristics of FASD include lack of motivation; inconsistent performance; difficulty storing and retrieving information; ability to repeat instructions, but inability to put them into action; difficulty with abstractions, such as math and time concepts; slow auditory pace; and developmental lags.
A neurobehavioural approach to intervention
Diane Malbin, a pioneer in the field of FASD education talks about "trying different, not harder." She describes a "shift in focus is from the child to the child-in-the-environment, from trying harder using increasingly controlling and coercive measures, to trying differently, and paradoxically achieving reductions in secondary behaviors through environmental accommodations" (www.fascets.org/conceptualfoundation.html).
Time has passed, understanding has improved
I sometimes think how much easier it would have been for us, Michael's family, if he were diagnosed today rather than 20 years ago. Along with more knowledge about FASD has come an increased understanding of how to work with and support children with FASD. Because of the neurological differences associated with the disorder, we now know that standard techniques of intervention used by parents and professionals for dealing with children's behaviours are ineffective.
It is my hope ...
It is my hope that medical, health and social service workers take advantage of the significant quantity of new research and approaches for therapeutic, behavioural and educational interventions that have been developed in the last decade.
We need to get people with FASD diagnosed. We need doctors, nurses, educators, social workers, social welfare bureaucrats, police, judges, lawyers and the general public to know more about FASD. And we need parents to know they are not alone in their struggle to raise their children. That there is help out there. That there are people who care and understand.
Addendum: Michael today is a lovely young man, kind of heart. He lives in a group home during the week and with us on weekends. He has found a special gift in the woodcarvings he makes, several of which have won awards. To date, he has not been able to hold a job or manage well in the world. Michael is now attending LEARN, a CAMH facility in Toronto's west end, where he is studying to get his high school equivalency (GED). He has wonderful, caring teachers. He loves going to school.
Many of the anecdotes above can be found in greater detail in my new book, Not Exactly as Planned: A Memoir of Adoption, Secrets and Abiding Love, available from demeterpress.org. My website is lindarosenbaum.com.