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Support Groups for Caregivers of Children with Fetal Alcohol Spectrum Disorder

Summary:
Children born with FASD have central nervous system damage that results in deviant behaviour causing havoc in their personal lives and in society as a whole. Support groups lend emotional support to caregivers, promote awareness, and lobby for government action and funding. On September 9, Fetal Alcohol Awareness Day around the world, a successful press conference was held in Hamilton. A delegation met with the Lieutenant Governor of Ontario, The Honourable David C. Onley. He proposed that his wife, The Honourable Ruth Onley, would become a sponsor to the organization. In spite of how insidious this condition can be, very few provinces in Canada and countries around the world require warning labels on alcoholic beverages.
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Definition and extent of condition

FASD, Fetal Alcohol Spectrum Disorder is an umbrella term used to include a spectrum of physical and mental symptoms and diagnosis associated with prenatal exposure to alcohol. It includes: Fetal Alcohol Syndrome (FAS), partial FAS (pFAS), Alcohol-Related Neurodevelopmental Disorder (ARND), and Alcohol-Related Birth Defects (ARBD). Since alcohol in the mother's bloodstream crosses directly through the placenta into the baby's bloodstream, the baby is "forced to consume alcohol by the mother," and this results in permanent damage to the baby's central nervous system. (See: Drinking Alcohol during Pregnancy and Fetal Alcohol Syndrome, by Dr. Yoichi Niimi, Research Paper, CRN October 17, 2008.) Frequent symptoms include: learning disabilities, juvenile delinquency, unemployment, promiscuity, early pregnancy, mental illness, homelessness, violent behaviours and addiction. These are disruptive problems with which our society must deal. Albert E. Chudley et al reports that U.S. statistics reveals that there are 9.1/1000 live births born with FASD. Figures are available for some Canadian communities that show a wide range of incidence. (See: www.statcan.ca Fetal Alcohol Spectrum/Fetal Alcohol Effects)

Call for help

Joanna wrote an e-mail: "Hello FASD network. I am a mother of six and have attended some Hamilton support groups in the past. Our almost 8 year old daughter was adopted by us as an infant and is diagnosed with ARND. Her cognitive development is about 4 years old but it is her behaviours that are out of control. She has been seen by pediatric psychiatry for 2 years now and we have yet to find a medication to stabilize her. We are connected to behavioural therapy and have an amazing team at her school that recognize her severe disabilities and offer her one to one support and tons of resources. Our problem is her behaviour at home is so impulsive and hurtful both physically and mentally to her three older sisters (age 18, 14 and 12) that they are reaching crisis state. The 14 year old is in counselling for depression and needing medication and the doctor feels it is mostly due to the stress of her sister." Joanna is one of many caregivers calling out for help from a support group. (For a world-wide list of support groups see FASworld - and click on Find a Support Group.)

Scope of support groups

Support groups in Canada have a loose affiliation with each other, but there is no central organization. Two or three individuals can start a new group. (See: FASworld). Some groups are incorporated and have tax-exempt status, which permits offering receipts for income tax purposes. From mission statements, groups seem to have common goals including: supporting caregivers and people with FASD, educating the public about prevention and needs, lobbying for government financial support and legislation concerning prevention and treatment, exploring unaddressed needs and fund-raising for local projects. I attended the Toronto and Hamilton, Ontario support groups to see how these issues are addressed. Attendants were often grandparents who were thrust into caring for the children of their adopted FASD child who is unable to cope with adult responsibility; parents who have adopted children with FASD; a few professionals serving those affected by FASD; and some people afflicted with FASD. There is no fee for attending. Meetings are held in facilities provided without cost at locations accessible by public transportation. There are monthly scheduled meetings. All related discussion is confidential unless permission is given for disclosure. People attending meetings introduce themselves by first name only. Child care may be provided, and sometimes the group shares refreshments or holds a family picnic.

Format of a session

Bonnie Buxton, author of Damaged Angels (Alfred A. Knopf Canada, 2004) and caregiver, defined the chief mission of the Toronto group: "To support families and children with FASD." Lynn Cunningham, Ryerson University Professor of Journalism, was candid. "Support. Talk with people who don't say you are a bad parent. We aren't at fault for the issues. Connect with resources that (attendants) might not be aware of."

One Saturday morning eight of us gathered around a boardroom table in a small conference chamber at St. Michael's Hospital, Toronto. Participant's names have been changed; however, I have been given permission to tell some of their stories. Nearly everyone had attended before and, to a degree, knew each other's problems. The facilitator asked who would like to speak.

Martha volunteered. Martha and her husband had attended previously. They'd laughed and shrugged when they said that early in their marriage they had decided not to have children but, Martha added, "Look what came about!" They'd felt obliged to take in a twenty-three-year-old niece, I'll call her Joy, accompanied by her nine-month-old baby. The baby's father wasn't in the picture. Joy's father had fled, and Joy's mother was an irresponsible addict. No one had recognized Joy's symptoms of FASD before she moved in. Fortunately the baby did not have FASD. During the early session, Martha and her husband were looking for job opportunities for Joy. Someone knew of an agency that accessed job skills, recommended suitable jobs and helped the applicant find a job. Martha came alone to this session. She leaned on the table, eager, her face showing serious concern. They had worries. The niece showed few parenting skills?wouldn't respond when the baby cried and couldn't access what the baby needed, and as a consequence, Martha was on call around the clock. In addition to helping Joy learn parenting skills, Martha wanted Joy to make new friends. Joy had been attending a parenting class in an area of the city where drug dealers, users and alcoholics hung out. Martha was afraid that Joy would pal around with girls who would lure her into using. Joy was enrolled in a leadership training class taught by Toronto Parks and Recreation, but she didn't seem to be making friends.

Someone at the meeting knew about "Breaking the Cycle," a program directed by Margaret Leslie and supported by several hospitals and women's groups. The program teaches new moms cooking and nurturing skills. If Martha attended that program she might make friends with young moms like herself and also learn parenting skills. Martha's next worry was that Joy would get pregnant again. A boyfriend, who was an addict and had been in and out of jail, was gaining her favour. How could they be sure Joy took her contraceptives? A group member mentioned other contraceptive measures that Joy's doctor could prescribe. Martha voiced another concern. "Joy's mother comes around unexpectedly, but she's a bad influence." What would happen if she tried to get custody of the baby?

"I should be going back to work, but how can I?" Martha sighed. "My family give no support. I asked my sister to come and look after the baby for an hour?just an hour, so I can get away." Martha rubbed her hands together. The sister had turned down her request. "What was she doing when I called? Doing her yoga exercise, changing her hairstyle." Martha shook her head. "I could.....When he cries in the night, I look at the clock. It's 4:00 a.m. I get him and cuddle him in my bed." Martha smiled. "He wiggles his legs and I think: What are you doing here? You shouldn't even exist. How did I get you? But I love you so much. I can't lose you."

Tissues were passed around.

Karen spoke up. "You can tell my story." Karen and her husband are raising grandchildren, the son, age nine and daughter, age seven, of their adopted daughter who has FASD and has never ceased to be problematic. And worse yet, the nine-year-old has FASD as well. Their daughter drank before she knew she was pregnant. "How can we go through this again? We're burned out. I've been sick and...Tell this one. My grandson takes things that don't belong to him?takes them to school and gives them to his friends or sells them. If my cell phone is missing, I look under his bed...Usually he can only ride his bike with his granddad, but he asked to ride around the block, and I said, `yes.' `Where's your bike?' I asked when he came back. `Maybe in the back yard,' he said, but it wasn't there, wasn't anywhere around the block or in the park. We'll never get an answer. Did someone offer him a townie (two-dollar coin) for it? Did he give it away? Was it stolen? We'll never know. Bike is gone! My husband scolded me because he thought I'd left the water-hose running, but it was my grandson who did it. He and his pals were filling rubber gloves with water and throwing them at cars driving by on the street. Earlier he was kicking his soccer ball at cars." She shook her head. "We'd bought our house for the time we'd have an empty nest, but.....The money we get from the government for Child Tax Benefit isn't much. It covers membership in activities and some clothes. (Canada has a Child Tax Benefit, a non- taxable amount paid monthly to eligible Canadian mothers or other caregivers to help with the cost of raising children under 18 years of age.) If we were foster parents we'd earn a salary, but we're not foster parents, we're family." (Instead of putting children without families into orphanages, the government pays a salary to foster parents to care for these children. If a family member takes on this responsibility, they aren't paid a salary.) Karen threw out her hands in frustration. "All of us are burned out."

Esther had been the last to arrive. She'd pulled her chair back from the table, like she wasn't sure she belonged. At a previous session she'd told us that she was learning to be a good mother. Shaking her head, she clenched and unclenched her fists like she wondered whether to proceed with telling her problem. "I haven't had a drink in over two years," she said, "I knew I shouldn't (drink), but I did it anyway." She looked around nervously to see if any of us were judging her harshly. "My six-year-old and my eighteen-year-old have it (FASD). The older one is with her dad and stepmother. She (stepmother) doesn't understand. Her dad drinks. He knows why my kid is... and I told him to teach her (his wife), but...well, she gives most of her attention to the two kids she has with him. My kid gets left out. She (the daughter) doesn't want to see me either. She told the court she wanted to live with her dad. I'd like to take her, but you know..." Esther's lips moved like they were forming words that were difficult to say. "The little one is all I can handle." The woman sitting next to her tapped Esther's hand gripping the arm of the chair. "I'm not so good myself," Esther said. Several mothers chimed in to tell her how well she was doing and what a great feat she'd accomplished to stop drinking. She seemed somewhat reassured and then shook her head like she was recalling an unpleasant incident. "I don't know what got into her (the six-year-old). She went into a tantrum last weekend when we were trying to have Thanksgiving dinner." Esther seemed to be asking for guidance on how to manage such an outburst. The other mothers pointed out that a disruption of the family routine, such as an unusual family gathering, usually prompted deviant behaviour from their FASD kids and offered suggestions. Many reassured her and everyone congratulated her for having stopped drinking and for having the courage to tell her story.

There was a hush in the room. A sense of camaraderie. Empathy. We had each just relived the feelings of hurt, despair, frustration and being worn-out, which we knew so well. The group had bonded, and from this sharing, a sense of hope was manifested. Martha said she felt "love" in the room. At the next meeting the stories will continue. The understanding will be renewed. The sense of belonging with others who know and care will revive hope. These support groups began in 1999 and will be needed until FASD is eradicated.


Caregivers prepare placards for Fetal Alcohol Awareness Day

Other objectives

Communication ? The Web site FASworld allows for communication about research, policies, and activities and offers guidelines for founding a group.

Promote awareness ? Since 1999, the ninth hour of the ninth day of the ninth month has been set aside as Fatal Alcohol Awareness Day. (The number nine was selected because nine months is the human gestation period.) On September 9, 2008, the Hamilton Task Force, headed by Nancy Hall, FASD Community Development Facilitator, held an extensive press conference to announce successful campaigns and provide opportunity for press representatives to interview caregivers and people with FASD. Kites in the shape of butterflies rose high in the sky over T.B. McQuesten Park, the site of the conference. (The butterfly is a FASD symbol. Just as the flutter of butterfly wings can precipitate a change in the weather continents away, the unborn's exposure to even a small amount of alcohol can result in his having FASD and precipitate widespread havoc.) At one Hamilton support meeting, placards were made bearing the words, "No amount of alcohol is safe." These were carried around the conference site. Members of the support group wore blue T-shirts painted with the warning beside the profile of a pregnant woman. FASD beaded bracelets were distributed free. Water had been donated by Nestle' Waters.

Hall took the microphone to announce that the Task Force was working hard to establish a diagnostic and treatment clinic in the Hamilton area. The key-note speaker was Paul Miller, Member of the Ontario Parliament, who announced that he was asking the Ontario government to form a FASD Action Plan to address "the devastating effects of FASD, highlighting prevention, diagnosis, and family support. The plan further proposes a $15 million provincial fund to promote community awareness and parent education." Two mothers described what daily life was like living with FASD children?the angry outburst, violent acts, the child's lack of judgment, being labelled as bad parents and the frustrations of seeking help.

Hall's media contacts netted results. Representatives of newspapers, and TV and radio stations turned out. The reporters interviewed parents, professionals working with FASD victims and pregnant teens. The Awareness Program was covered by three newspapers, one radio station and two TV stations, and another reporter expressed interest in doing a feature story about FASD.

Secure backing ? Four members of the Toronto support group met with Lieutenant Governor David C. Onley, the Queen's representative in Ontario, and his wife, The Honourable Ruth Onley, at his mahogany panelled suite in the Ontario Legislature building. Seated in his wheelchair, he greeted the delegation with poise. The group thanked him for the work he has done to secure services for the people with obvious physical disabilities. They asked for his support for victims of FASD who have no visible disabilities. The Lieutenant Governor listened attentively and later waved aside the aid who signalled time to terminate the session. He offered to give any help possible, and he and his wife agreed that she would be a sponsor to the organization. Members of the delegation were urged to get word out, to write government representatives and campaign for better services.

Addressing the need for warning labels ? The U.S. and about twenty other countries in the world require warnings on alcoholic beverages, but in Canada, only Newfoundland and the North West Territories require warnings. A bill requiring warnings was defeated last year in the Federal House of Commons.

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