In my work with a wide range of people, I've seen the difficulties that people suffer due invisible disabilities. One of those challenging conditions is Fetal Alcohol Spectrum Disorder (FASD). Individuals living with this disability often experience heartbreaking realities unless they are able to receive consistent and caring support and access to community and professional resources to assist them in their struggles of daily life.
As mentioned below, once young people reach the age of majority, there is a harsh transition to adulthood, where few services and supports exist to help those with FASD. Accessing resources through Community Living BC is extraordinarily difficult due to their criteria for accepting people.
Adult mental health services are also extremely limited in being able to offer the complex support that those living with FASD require, although the majority of these individuals have co-morbid conditions, such as depression and anxiety disorders.
Sadly, there has been little progress on the part of the BC government in resourcing a comprehensive plan for supporting the transition of young people to adulthood and support for adults with FASD. I wish government's would stop spending funds on writing feel-good reports and actually do something to resource community and professional services. If this support was available, so many people would benefit.
Fetal Alcohol Spectrum Disorder: Building on Strengths
A Provincial Plan for British Columbia 2008 - 2018
The Ministry of Children and Family Development in collaboration with other provincial ministries, and in consultation with families, service providers, and clinical experts has developed a plan that focuses on six important objectives:
- British Columbians are aware of the risk of alcohol and substance use in pregnancy and of FASD as a lifelong disability.
- All women of childbearing age and their partners and support systems have access to early support and follow-up.
- All pregnant women and mothers experiencing substance use problems, and their partners and support systems have access to focused intervention and support.
- Children, youth and adults living with FASD have access to timely diagnosis and assessment.
- Children, youth and adults living with FASD and their families and support networks have access to comprehensive and lifelong intervention and support.
- Service systems are coherent, integrated and coordinated, and benefit from strong research and evaluation.
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Maternal drinking casts lifelong shadow for children growing up with fetal alcohol spectrum disorder
By Keith Rozendal, Vancouver Sun
“All of a sudden she was gone.
“Boom — no reaction. Her arms and legs started shaking. I called the nurse in. Within the next 10 minutes they were doing a spinal tap without any anesthetic, nothing.’
Lydia Neufeld’s 13-year-old foster daughter had slipped away like this seven or eight times before, but this was the first time her doctors had seen it. They had no explanation.
Neufeld’s daughter has fetal alcohol spectrum disorder (FASD). While she grew in the womb, her birth mother drank alcohol. The substance penetrated the placenta and attacked the growing girl, leaving parts of her brain permanently shrunk, scrambled, or simply missing.
That prenatal injury stranded the Richmond teen in a world of noise and confusion. She suffers these spells — paralyzing panic attacks — whenever her brain can’t keep up with stimulation and rapid changes in her environment.
Hundreds of thousands of Canadians live with a wide range of physical and psychological disabilities caused by prenatal alcohol exposure, according to Health Canada estimates. They’re born with irreversible damage to brain and body. The injuries slow their childhood development, hold them back in school, create a chaotic adolescence and leave them unable to lead independent adult lives.
Complex disabilities
Neufeld’s daughter wrote a letter explaining her disability — and why ambulances sometimes rushed her from school — to her classmates.
“Because my biological mom was drinking alcohol during pregnancy with me, my brain was injured and works differently than your brain,” she told them. “I can’t learn as fast as you. Sometimes I need to hear things over and over to remember, but sometimes I still forget. It’s not because I’m trying not to remember. I really just can’t.” Her letter had an impact.
“The teachers were just in tears after listening to that letter,” Neufeld said. “And the kids started to understand what it’s like. It changed her life in school.”
This year, she’s resuming a full-time schedule of classes, after years of partial days.
Her doctors call the panic attacks she suffers a secondary disability because they’re best understood as being rooted in her brain’s inability to meet everyday thinking challenges.
As the teenager explains, “it is very hard to do stuff in school because of all the people and noise. My brain can’t handle so many things happening at the same time. Sometimes I can get very scared and I feel like my heart is going to burst out of my chest.”
More than 90 per cent of adolescents with FASD develop one or more mental health issues, including depression, attention deficit hyperactivity disorder, substance abuse or aggressive behaviours. These secondary disabilities sometimes produce the only visible signs the person struggles with FASD.
“The more complex behaviours — acting out, tantrums, blaming, lying, stealing, all those things — are because they’re having their disability,” said Cheryl Penner, a counsellor for families with FASD at the Touchstone Family Association in Richmond. “When your little person is taking a tantrum on the floor, it’s not just that they want to be bad — they’re acting out a frustration and anger they don’t know how to cope with.”
Unfortunately, the secondary disabilities look a lot like misbehaviour. People’s misunderstanding lead them to see only kids behaving badly — telling lies, stealing, breaking rules, and not listening to their parent’s discipline. The children get in trouble at school. Out in public, their parents see a lot of disapproving looks.
“They’re being labelled as naughty children, when in fact they are disabled children,” said neuropsychologist Val McGinn. “People often look at these children and think, ‘Gosh, they’re dreadful parents.’ In fact, it’s a parent trying to do their best trying to manage a disabled child.”
Circle of support
When Audrey Salahub learned her adopted son had FASD, she began to surround her family with a supportive community. She educated herself and her Fraser Valley neighbours about the disorder.
“I thought, if my son were to ever survive in this world, he would need to be able to be in communities that knew about FASD,” she said.
One night, that vision of a protective circle of caring and understanding people crystallized in her mind.
“I saw this baby nestled in the petals of a lotus. I thought, ‘Oh my gosh, that’s my son’,” she said.
“The petals of the lotus circled him and cushioned him, protecting him so that he could enjoy his life. I came to understand that this was about the circle of support that we need to provide for our families and our child. Each petal represents training and education and diagnosis and all of those things we need. Also acceptance, understanding, compassion and patience.”
The image became the logo of the Asante Centre, a clinic providing diagnosis and social services for people with FASD, which Salahub co-founded and where she now serves as executive director.
The people and relationships in the life of a person with FASD have a big influence on their success. Because the brain damage never resolves itself, people with FASD rely upon a supportive community their whole adult lives. Rather than independent living, they live lives of interdependence. So do their parents.
Neufeld has come to rely upon Penner, one of 69 provincial FASD key workers hired by the Ministry of Children and Family Development to assist parents in raising children with FASD. At one point, eight foster or adopted children with special needs lived in Neufeld’s Richmond house. Her daughter, now 15 years old, lives with an 18-year-old brother and a 10-year-old sister who also have an FASD.
The FASD key worker and parental support program started in 2005. More than 50 social service agencies across the province have contracted with the ministry to put key workers on staff. Families can request the free help even before their child receives a diagnosis. In a 2009 evaluation report, parents gushed with praise for the program. Neufeld is one of many who developed a tight bond with a key worker.
“If we didn’t have Cheryl Penner in the middle of our family, I don’t know what we would have done,” she said.
A personal touch
Penner proved essential in helping Neufeld’s daughter avoid new panic attacks. Together, the women created an innovative way to help the teen talk about what triggered her attacks.
“She wasn’t able to verbalize what she was worried about,” said Neufeld. “So I bought a bunch of small little toys that would represent doctors, the ambulance, animals and trees — any type of small toy she could play with in the sand and make a picture. Then I would ask her what was happening and she would be able to verbalize what she was feeling at the moment. She’d tell it like a story.”
The solution emerged from the detailed understanding of the girl’s specific disabilities and strengths, which was developed by Penner, a core goal of the FASD key worker approach.
Neufeld’s daughter loves reading and is highly verbal. The sand play used these strengths to help her talk about her fears.
Building on that storytelling gift, Penner then encouraged Neufeld’s daughter to begin penning the letter she eventually read to her classmates.
The letter supported another goal of the FASD key worker approach — to create a network of caring adults and peers that can provide ongoing support for the child when they are outside the family.
Key workers support the Ministry of Education’s provincial outreach program, helping public school teachers understand and accommodate their students with FASD. In other formal and informal presentations, key workers reach out to provide FASD education to all the important adults in a child’s life.
“It is our job to try to make links,” said Sharon Lund, supervisor of the B.C. Children’s Foundation key worker program.
“Then I have to hope that those links have gone to another person to support that. We’re not really going to be staying in their life for a long time. We need the individual, the parents, the caregivers, the foster parents. Whatever their community is, we need them educated the same ways because they are the ongoing support.”
Adult lives derailed
Unfortunately, many young adults with FASD face a dramatic drop-off in social supports when they turn 19. No longer considered minors, their access to the provincial key worker program and many other children’s social services end.
At the same time, most adult-oriented programs for the mentally handicapped remain closed to them.
Although FASD hinders their ability to handle the demands of daily living, their IQs scores tend to be near-normal, or fall just above the cutoffs that qualify them for supports from Community Living British Columbia for adults with developmental disabilities.
In response to their plight, CLBC created the Personalized Supports Initiative in 2010. Access to the program hinges on assessments of an individual’s ability to care for themselves, rather than intelligence tests.
The program also requires an FASD or autism diagnosis. If an adult meets these tailored qualifications, a case worker can help them find housing and work and can assist in running a household and many other needs.
Providing for young adults with FASD is an issue that sparks a lot of passion among families and FASD social service providers because the stakes are high.
“We’ve seen many youth just fall off the rails completely at that time,” said the Asante Centre’s Salahub. “They’ve lost that whole child welfare system and they have nothing. If there isn’t that kind of support system to help them manage some of the day-to-day things, they get in trouble with the law or they become victims of extreme abuse.”
‘Hell for two years’
Lydia Neufeld has seen her 18-year-old adoptive son with FASD falter just as this adult cutoff looms.
Struggling with academics and discipline, Neufeld’s son began skipping classes in Grade 10.
He stopped taking the medication controlling his attention problems and got in trouble with the law. His disability interfered with his ability to see the costs he paid for his misbehaviour, so he would get caught and punished repeatedly.
“We’ve had hell for two years,” Neufeld said.
Her son recently returned home from a five-month jail term and four months of in-patient drug and alcohol rehab. With one year left to access childhood services, he’s enrolled in a construction trades training program.
With modest levels of supervision — somebody to check in on him daily — Neufeld’s son might be able to work and live on his own. However, that duty will fall to his family and friends in less than a year.
Even with a confirmed FASD diagnosis, CLBC’s criteria for the personalized supports initiative require a very low score on a psychologist’s assessment of an applicant’s ability to take care of themselves. Many who could benefit from a support worker — like Neufeld’s son — are too high-functioning to qualify. Fewer than 150 adults with FASD have benefited from the $10-million program in the two and a half years since it debuted, according to CLBC.
Neufeld’s solution is to surround her son with caring people who provide positive influences as long as they stay in his life.
She called his classmates at the private school he had been ditching. Fifteen of his old friends and teachers agreed to watch out for him. They invite him out for basketball in the school gym and other activities. While he’s with them, they help him navigate daily appointments and abide by his curfew and the other conditions of his probation.
She sees this as the last hope to steer her son clear of a life on the streets, cycling in and out of jail. Despite the extraordinary challenges, Neufeld and her husband want their children to know they’ll never waver in their care and concern. “We say, ‘Always and forever, we will love you no matter what, but we don’t like the choices that you are making. We still love you in spite of those,’” Neufeld said. “They really crave that, to know they have a place go when they need it. We’re the only ones in the world that will be there for them. We never give up hope.”
“Boom — no reaction. Her arms and legs started shaking. I called the nurse in. Within the next 10 minutes they were doing a spinal tap without any anesthetic, nothing.’
Lydia Neufeld’s 13-year-old foster daughter had slipped away like this seven or eight times before, but this was the first time her doctors had seen it. They had no explanation.
Neufeld’s daughter has fetal alcohol spectrum disorder (FASD). While she grew in the womb, her birth mother drank alcohol. The substance penetrated the placenta and attacked the growing girl, leaving parts of her brain permanently shrunk, scrambled, or simply missing.
That prenatal injury stranded the Richmond teen in a world of noise and confusion. She suffers these spells — paralyzing panic attacks — whenever her brain can’t keep up with stimulation and rapid changes in her environment.
Hundreds of thousands of Canadians live with a wide range of physical and psychological disabilities caused by prenatal alcohol exposure, according to Health Canada estimates. They’re born with irreversible damage to brain and body. The injuries slow their childhood development, hold them back in school, create a chaotic adolescence and leave them unable to lead independent adult lives.
Complex disabilities
Neufeld’s daughter wrote a letter explaining her disability — and why ambulances sometimes rushed her from school — to her classmates.
“Because my biological mom was drinking alcohol during pregnancy with me, my brain was injured and works differently than your brain,” she told them. “I can’t learn as fast as you. Sometimes I need to hear things over and over to remember, but sometimes I still forget. It’s not because I’m trying not to remember. I really just can’t.” Her letter had an impact.
“The teachers were just in tears after listening to that letter,” Neufeld said. “And the kids started to understand what it’s like. It changed her life in school.”
This year, she’s resuming a full-time schedule of classes, after years of partial days.
Her doctors call the panic attacks she suffers a secondary disability because they’re best understood as being rooted in her brain’s inability to meet everyday thinking challenges.
As the teenager explains, “it is very hard to do stuff in school because of all the people and noise. My brain can’t handle so many things happening at the same time. Sometimes I can get very scared and I feel like my heart is going to burst out of my chest.”
More than 90 per cent of adolescents with FASD develop one or more mental health issues, including depression, attention deficit hyperactivity disorder, substance abuse or aggressive behaviours. These secondary disabilities sometimes produce the only visible signs the person struggles with FASD.
“The more complex behaviours — acting out, tantrums, blaming, lying, stealing, all those things — are because they’re having their disability,” said Cheryl Penner, a counsellor for families with FASD at the Touchstone Family Association in Richmond. “When your little person is taking a tantrum on the floor, it’s not just that they want to be bad — they’re acting out a frustration and anger they don’t know how to cope with.”
Unfortunately, the secondary disabilities look a lot like misbehaviour. People’s misunderstanding lead them to see only kids behaving badly — telling lies, stealing, breaking rules, and not listening to their parent’s discipline. The children get in trouble at school. Out in public, their parents see a lot of disapproving looks.
“They’re being labelled as naughty children, when in fact they are disabled children,” said neuropsychologist Val McGinn. “People often look at these children and think, ‘Gosh, they’re dreadful parents.’ In fact, it’s a parent trying to do their best trying to manage a disabled child.”
Circle of support
When Audrey Salahub learned her adopted son had FASD, she began to surround her family with a supportive community. She educated herself and her Fraser Valley neighbours about the disorder.
“I thought, if my son were to ever survive in this world, he would need to be able to be in communities that knew about FASD,” she said.
One night, that vision of a protective circle of caring and understanding people crystallized in her mind.
“I saw this baby nestled in the petals of a lotus. I thought, ‘Oh my gosh, that’s my son’,” she said.
“The petals of the lotus circled him and cushioned him, protecting him so that he could enjoy his life. I came to understand that this was about the circle of support that we need to provide for our families and our child. Each petal represents training and education and diagnosis and all of those things we need. Also acceptance, understanding, compassion and patience.”
The image became the logo of the Asante Centre, a clinic providing diagnosis and social services for people with FASD, which Salahub co-founded and where she now serves as executive director.
The people and relationships in the life of a person with FASD have a big influence on their success. Because the brain damage never resolves itself, people with FASD rely upon a supportive community their whole adult lives. Rather than independent living, they live lives of interdependence. So do their parents.
Neufeld has come to rely upon Penner, one of 69 provincial FASD key workers hired by the Ministry of Children and Family Development to assist parents in raising children with FASD. At one point, eight foster or adopted children with special needs lived in Neufeld’s Richmond house. Her daughter, now 15 years old, lives with an 18-year-old brother and a 10-year-old sister who also have an FASD.
The FASD key worker and parental support program started in 2005. More than 50 social service agencies across the province have contracted with the ministry to put key workers on staff. Families can request the free help even before their child receives a diagnosis. In a 2009 evaluation report, parents gushed with praise for the program. Neufeld is one of many who developed a tight bond with a key worker.
“If we didn’t have Cheryl Penner in the middle of our family, I don’t know what we would have done,” she said.
A personal touch
Penner proved essential in helping Neufeld’s daughter avoid new panic attacks. Together, the women created an innovative way to help the teen talk about what triggered her attacks.
“She wasn’t able to verbalize what she was worried about,” said Neufeld. “So I bought a bunch of small little toys that would represent doctors, the ambulance, animals and trees — any type of small toy she could play with in the sand and make a picture. Then I would ask her what was happening and she would be able to verbalize what she was feeling at the moment. She’d tell it like a story.”
The solution emerged from the detailed understanding of the girl’s specific disabilities and strengths, which was developed by Penner, a core goal of the FASD key worker approach.
Neufeld’s daughter loves reading and is highly verbal. The sand play used these strengths to help her talk about her fears.
Building on that storytelling gift, Penner then encouraged Neufeld’s daughter to begin penning the letter she eventually read to her classmates.
The letter supported another goal of the FASD key worker approach — to create a network of caring adults and peers that can provide ongoing support for the child when they are outside the family.
Key workers support the Ministry of Education’s provincial outreach program, helping public school teachers understand and accommodate their students with FASD. In other formal and informal presentations, key workers reach out to provide FASD education to all the important adults in a child’s life.
“It is our job to try to make links,” said Sharon Lund, supervisor of the B.C. Children’s Foundation key worker program.
“Then I have to hope that those links have gone to another person to support that. We’re not really going to be staying in their life for a long time. We need the individual, the parents, the caregivers, the foster parents. Whatever their community is, we need them educated the same ways because they are the ongoing support.”
Adult lives derailed
Unfortunately, many young adults with FASD face a dramatic drop-off in social supports when they turn 19. No longer considered minors, their access to the provincial key worker program and many other children’s social services end.
At the same time, most adult-oriented programs for the mentally handicapped remain closed to them.
Although FASD hinders their ability to handle the demands of daily living, their IQs scores tend to be near-normal, or fall just above the cutoffs that qualify them for supports from Community Living British Columbia for adults with developmental disabilities.
In response to their plight, CLBC created the Personalized Supports Initiative in 2010. Access to the program hinges on assessments of an individual’s ability to care for themselves, rather than intelligence tests.
The program also requires an FASD or autism diagnosis. If an adult meets these tailored qualifications, a case worker can help them find housing and work and can assist in running a household and many other needs.
Providing for young adults with FASD is an issue that sparks a lot of passion among families and FASD social service providers because the stakes are high.
“We’ve seen many youth just fall off the rails completely at that time,” said the Asante Centre’s Salahub. “They’ve lost that whole child welfare system and they have nothing. If there isn’t that kind of support system to help them manage some of the day-to-day things, they get in trouble with the law or they become victims of extreme abuse.”
‘Hell for two years’
Lydia Neufeld has seen her 18-year-old adoptive son with FASD falter just as this adult cutoff looms.
Struggling with academics and discipline, Neufeld’s son began skipping classes in Grade 10.
He stopped taking the medication controlling his attention problems and got in trouble with the law. His disability interfered with his ability to see the costs he paid for his misbehaviour, so he would get caught and punished repeatedly.
“We’ve had hell for two years,” Neufeld said.
Her son recently returned home from a five-month jail term and four months of in-patient drug and alcohol rehab. With one year left to access childhood services, he’s enrolled in a construction trades training program.
With modest levels of supervision — somebody to check in on him daily — Neufeld’s son might be able to work and live on his own. However, that duty will fall to his family and friends in less than a year.
Even with a confirmed FASD diagnosis, CLBC’s criteria for the personalized supports initiative require a very low score on a psychologist’s assessment of an applicant’s ability to take care of themselves. Many who could benefit from a support worker — like Neufeld’s son — are too high-functioning to qualify. Fewer than 150 adults with FASD have benefited from the $10-million program in the two and a half years since it debuted, according to CLBC.
Neufeld’s solution is to surround her son with caring people who provide positive influences as long as they stay in his life.
She called his classmates at the private school he had been ditching. Fifteen of his old friends and teachers agreed to watch out for him. They invite him out for basketball in the school gym and other activities. While he’s with them, they help him navigate daily appointments and abide by his curfew and the other conditions of his probation.
She sees this as the last hope to steer her son clear of a life on the streets, cycling in and out of jail. Despite the extraordinary challenges, Neufeld and her husband want their children to know they’ll never waver in their care and concern. “We say, ‘Always and forever, we will love you no matter what, but we don’t like the choices that you are making. We still love you in spite of those,’” Neufeld said. “They really crave that, to know they have a place go when they need it. We’re the only ones in the world that will be there for them. We never give up hope.”
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