Canadian Mennonite
Volume 9, No. 13
June 27, 2005
Fetal alcohol sufferers come in from the cold
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After years of isolation, frustration and despair, a new wind seems to be blowing and a scent of spring is in the air for people living with fetal alcohol spectrum disorder (FASD). The term, unknown to many, is used to describe a group of brain and other physical injuries associated with the use of alcohol during pregnancy.
No longer willing to suffer in silence, young adults and parents impacted by FASD are courageously stepping out and breaking the stigma surrounding this often hidden and misunderstood disability. By publicly sharing their stories, they hope listeners will respond from the heart, ready to shoulder some of the burden of this life-long affliction and together work to create a brighter future.
One young man with a real passion for sharing his story is Russ. Now 28, he spent 10 years in and out of jail, foster care and group homes, as he struggled with a disability that sometimes led him into drug and alcohol abuse. In a recent conversation with Canadian Mennonite (see story below), Russ emphasized that he shares his story because “if we don’t come out of the closet, how are people supposed to know and understand” what it’s like to live with FASD and how to support people like him.
The same is true for many others. Erik, a budding poet, and Brenda, a parent of two young adult fetal alcohol-affected children, shared from their hearts at a lively MCC Manitoba-sponsored benefit concert at Douglas Mennonite Church in Winnipeg on April 30. Kathy, a mother of a troubled daughter, recently felt the need to write an open letter to friends and family, sharing child-raising struggles she experienced that she now believes were fetal alcohol-related (see story below).
A renewed hope
All of them speak of the renewed hope they experienced as a result of relatively new supports offered by the MCC Manitoba FASD program. Help includes individual and family assistance, awareness-raising FASD websites, print and media resources, and a soon-to-be released MCC Canada educational video—Can’t, Not Won’t: A Christian Response to FASD—that highlights how several congregations are responding to FASD individuals and families in their midst.
“In some ways, the FASD program [here] is experiencing a spring season,” writes Jewel Reimer, MCC Manitoba FASD program manager, in their first-ever newsletter. “For the last two years, the FASD program has been in various stages of development, spurred on by the hard work and commitment of many people. This hard work is now being rewarded by signs of new life slowly pushing aside some of the stress and isolation we have so often witnessed in families living with FASD. We have seen new supportive relationships form, new knowledge take shape and grow, and new places of safety created.”
Combined with new office space and enough funding to hire more staff, service delivery is now beginning in earnest.
Enormous challenges continue
Yet, despite many stories of renewed hope and the upbeat tone of the recent benefit concert by “prairie-grass” band House of Doc—that raised more than $5,000 for FASD programs—the challenges people living with FASD continue to face are enormous.
For example, Russ says that learning to live independently is “a constant daily struggle” for him. Without extensive MCC Manitoba FASD program support totalling 72 hours a week, he says he would “crash and burn...hang out with the wrong people and get back into drugs and alcohol. That’s what happened before.… It’s hard to learn how to live a different way.”
The same holds true for Brenda and her family, who depend on the support of “a listening ear, a shoulder to cry on and someone to walk alongside us as our faith in God’s love and goodness is stretched in the midst of what at times feels like an impossibly difficult and hopeless journey.”
Other challenges include getting a medical diagnosis, especially for adults, mainly due to a lack of qualified medical teams and funding resources. Estimates suggest that in Manitoba alone there are approximately 8,700 adults living with FASD—almost the population of Steinbach.
Also, there are concerns about negatively “labelling” those with FASD and scepticism within the medical community. Despite the fact that fetal alcohol disorders have been diagnosed since the early 1970s, some physicians still refuse to acknowledge the connection between behavioural difficulties in children and alcohol consumption, attributing them, instead, to the parents or the child’s environment.
And so a litany of tragic stories continues to stream in as people like Irma Janzen, MCC Canada Mental Health and Disabilities director, are urgently trying to raise awareness. “Right now, I feel that we’re at about the place where we were with schizophrenia 15 years ago,” Janzen says.
What the church needs to know…and do
This means that, with few faith-based supports, many church families experience burnout and even loss of faith as they struggle on their own with a confusing array of secondary fetal alcohol effects. These effects can range from impaired reasoning, judgment and memory difficulties, to volatile mood swings, an inability to link cause and effect, or understand consequences exhibited by their often undiagnosed and “normal-looking” children.
So it’s crucial that the word gets out, Janzen stresses.
Jewel Reimer agrees. “It’s essential for the faith community to be aware of FASD, which is directly present in our churches, since, if the behaviour of FASD-affected children is not seen as a brain injury, the perception will be that children won’t behave, rather than that they can’t,” she says. “In some instances, this has resulted in families with disruptive FASD kids being asked to leave their church. Also, pastors and other well-meaning congregants may recommend parenting courses that are inappropriate.... Parents have been hurt by this approach.”
“We need to stop judging, and start walking with our neighbours,” Reimer adds. “This can happen right within our churches and within our communities, as we address issues of racism, poverty and homelessness, which can lead to FASD. Churches have a huge role to play.”
Canadian Medical Association frustrated by ‘preventable’ tragedyFetal alcohol syndrome is “one of the most frustrating conditions we face,” Canadian Medical Association (CMA) president Albert Schumacher said last year. “It carries a huge economic burden for society and has a major impact on the quality of life of our patients and on the people around them. And it is totally preventable. It’s a tragedy.” The tragedy is played out in Canada more than 3,000 times a year. Babies born with fetal alcohol spectrum disorder (FASD) face a multitude of developmental, behavioural and learning disabilities, and many have syndrome-specific facial abnormalities. It is estimated that each of them will require $1.5 million in additional social and health spending throughout their lifetimes. About 280,000 Canadians are currently living with FASD, which is estimated to affect 9.1 of every 1,000 babies born in the U.S. and Canada. In an effort to reduce the toll, existing CMA policy calls for the federal government to require warning labels on all alcoholic beverages sold in Canada and a ban on advertising of alcoholic beverages on radio and television and in print. The CMA’s policy on FAS states: “The CMA believes that the prudent choice for women who are, or may become, pregnant is to abstain from alcohol, and encourages their partners to support them in this endeavour.” The policy also calls on physicians to play a lead role in educating and counselling women about the dangers alcohol poses for a fetus, and recommends that pregnant women seeking help receive high priority from addiction treatment services. —From CMA release © 2004 |
“We need to recognize that this is permanent brain damage, which will stay with the person for life, and unless communities change, the person can’t change,” Reimer stresses. “They will need support for the rest of their lives. Though there may be a maturation process, it happens later on, perhaps by the time they’re 35 or 40.”
People also need to know that FASD won’t go away. “With wider acceptance of female social drinking, and with misuse of alcohol by women who may have been sexually abused, or who struggle with mental illness themselves, we need to move away from blaming the birth mother and look for ways to address societal ills that lead to this,” Reimer concludes.
Clearly, there are no easy answers or quick fixes for life-long brain damage caused by alcohol consumption during pregnancy. Just the day-to-day slog of learning how to respond “differently” to frequent crisis situations, praying constantly, and practising the art of “listening with a heart of flesh,” trusting in the promise that new life is always ready to break through as long as our ears and eyes of faith are open, and knowing that ultimately “the resurrection means that nothing is hopeless anymore.”
If you want to help that “new life and resurrection” continue to happen, consider serving on an MCC FASD support circle in your province or region, promoting a Sunday school session or workshop on FASD at your church, donating money to MCC, or writing your government representatives about the importance of providing more services for all people living with FASD.
One mother’s story
When we started our family we were told that two of the children we adopted were considered to be “needy.” We understood that to mean needing extra love and attention, needing more help in school. We could handle that. Our kids didn’t need to be high achievers for us to love and accept them. We were strong, resourceful, educated, and had many family, church and community supports to help us. We would cope well even if things were difficult. I’ll try to give you a few glimpses into our lives during the following years.
• Our children brought home things we knew had not been paid for. We learned that their concept of ownership was: If something is left where I can take it, I can claim it as mine.
• After a teacher asked us how our child broke his arm (which was never actually broken), we learned to take nothing at face value, to check stories with all parties involved, and to question the evidence even if it was right before our eyes.
• We assigned various tasks that our child repeatedly failed to complete or even start. We shook our heads and wondered what was going on, or reacted with frustration at the seemingly blatant disobedience.
• Promises were easily given and just as easily broken with no sense of guilt. We slowly learned we would hear whatever our child thought we wanted to hear.
• High telephone bills made us aware of long distance phone calls being made in our absence, so we learned through experience that the only remedy was cutting long distance service on our phone and living with the inconvenience.
• Impulsivity, foul language, lack of ability to reason things out, lack of ability to keep a job, be responsible with money, or take responsibility for actions, are all realities we’ve dealt with and continue to deal with.
I know these are things that have occurred in many households. It’s the fact that these behaviours are so continual and continue into adulthood that has brought the realization that maybe there is a reason behind them. For us, this realization was an eye-opening experience. Our children were not just being willfully defiant and disobedient or rebellious. They really did not catch on to the concept that certain behaviours would result in certain consequences.
We certainly didn’t learn very quickly that consequences meant nothing. It is only now, through the help of people who have experience with FASD, that we are learning to try differently, rather than just trying harder. These behaviours are reality for us and many other families, and they are what make us especially thankful for the MCC Manitoba FASD program.
Not that they can fix our kids, but they are willing to offer support, a listening ear, a shoulder to cry on and someone to walk alongside us as our faith in God’s love and goodness is stretched in the midst of what at times feels like an impossibly difficult and hopeless journey.
Parenting a ‘damaged angel’
After reading Damaged Angels by Bonnie Buxton, a mother who discovers the terrible cost of alcohol in pregnancy and what it did to her adopted daughter, I need to tell my own story.
Actually, compared to this and other the stories I’ve read about, we’ve had it so good. So many children are more drastically affected and so many parents do not have a relationship with God, who is so familiar with all our struggles and gives us powerful and mighty ways to deal with all of the confusion that fetal alcohol-affected kids and their parents have to go through.
The whole time I have been a mother to Theresa (all names are pseudonyms—ed.), I did not take into account that she may have some neurological damage due to the fact that her mother (a Caucasian Mennonite) drank and partied during her pregnancy. Part of the reason I did not see it was because during her babyhood Theresa was a bright, happy and seemingly normal little girl.
However, by the time she entered junior high, she was unable to function. She isolated herself from socializing with friends; she quit having birthday parties and didn’t go to family gatherings, nor was she able to attend church. She dropped out of school before finishing Grade 8.
As a mom, I was devastated and felt like I had been through a “how bad of a mom are you” assessment by her teachers, counsellors and doctors. At this point, I believe I also had some kind of breakdown, as I let go of all the dreams I had for this beautiful, seemingly well-put-together daughter, and sort of gave up.
I am now reading all I can, and hoping and praying that we’ll find some answers as to how Theresa is supposed to live her life from here on in. I have just been introduced to MCC’s website through one of the pastors from our church, and they have supports in place to help all ages of people dealing with this type of disorder.
For some of you who have struggled with difficult children, look into the possibility of a birth mom who drank during pregnancy—not to blame her, but for the sake of looking after the child whose life is deeply affected.
My life with FASD: Russ’s story
To give readers a better understanding of the personal impact of fetal alcohol spectrum disorder (FASD), Leona Dueck Penner, Canadian Mennonite’s national correspondent, interviewed Russ, a soft-spoken, non-judgmental young man who was born with the disorder as the result of his birth mother drinking during her pregnancy.
Canadian Mennonite: Could you tell me something about what life with FASD has been like for you, beginning with your childhood?
Russ: I was adopted at eight months into a Christian family and raised in a white family…. My parents knew that I had FASD from a young age when a doctor diagnosed me. It helped them to know how to work with me. That was good because they raised me differently. They recognized I needed more supervision.
CM: Can you remember what it was like for you, as a child, having FASD?
Russ: Not really. Later it became a big factor…when I moved to the city at age 12. I started to venture out on my own, and began stealing and getting into trouble. Also, the transition into junior high was difficult. I had to get used to a different system. I was in a Christian school. But the teachers and students didn’t understand me at all! Entering high school in the public school system was a big shock. I made it through Grade 10 and things went downhill after that.
CM: What was the hardest thing about school?
Russ: Not going to classes…. And I started getting into drugs and alcohol.
CM: How long did that last?
Russ: Up until now!
CM: What about your family relationships during that time?
Russ: I moved out at 18…. All the kids in my adoptive family were adopted and we were from different backgrounds. I never see my siblings now. My adoptive parents I see sometimes.
CM: What about your birth family?
Russ: They live in Ontario. But I want to reconnect.
CM: How about your birth mother? Have you met her?
Russ: Yes, in 1999. That was a rough time. I had set my expectations too high and there was no one to help me sort this out.
CM: How do you feel about your birth mother drinking and FASD affecting your life?
Russ: I forgave her…though my adoptive mother thinks I still have some resentment about this. That’s not good. FASD is forever…. I have to live with that and the supports I receive are a great help.
CM: What about friends?
Russ: They’ve slipped away, except for the support staff and the healing circle [related to MCC Manitoba FASD Program].
CM: What about church involvements? Were you accepted and welcomed there?
Russ: Yes, I was accepted and welcomed, but I didn’t understand what it was all about. Now I hate it with a passion!
CM: What about your experiences in group homes and in prison? How did that affect you?
Russ: I was in prison off and on for the past 10 years. It just made things worse.
CM: What are the things that helped to turn you around?
Russ: I moved into El Dad [MCC halfway house] in 1998 and achieved some of my dreams there. I started working full-time. That felt good.
The One Who’s ThereI never thought I’d find a friend |
CM: What are things like for you now?
Russ: It’s hard. A constant daily struggle…due to my continuing impulsivity, money management problems, lack of life skills and learning to live independently.
CM: What is your hope for the future?
Russ: That people would gain understanding of this disability. That if you have FASD or you’re living with someone who has it…we do things differently!
CM: Is it almost like coming from a different kind of culture?
Russ: Yeah.
CM: What would you like people to know about FASD?
Russ: I want to help them try to understand the importance of doing things on your own. Not being pushed about taking an action [in church, for example] when you don’t feel ready for it yet. I get easily distracted into going left somewhere when I intended to go straight ahead. So I get into trouble.
CM: Do you think attitudes towards FASD are getting better in society?
Russ: I think things are getting better, which gives me hope…but not faith.
CM: What do you mean by that? That faith comes after things continue to improve?
Russ nods in agreement.
CM: Thanks for sharing your story with me. It takes courage. I really appreciate it. It will help the readers of our magazine to understand FASD better.
Russ: How are people supposed to know if nobody comes out of the closet. That’s why I’m doing it—sharing my story so people will understand.