Lisa Rowbottom is studying counsellors who intentionally modify their strategies to meet the psychological counselling needs of people who have FASD. It isn’t easy finding people to study, but she now has three, and is hoping to find a fourth. I spent an hour or so answering Lisa’s questions last Thursday morning. The benefit of that time went to me as well as to Lisa. She got a research participant, and I, preparing in advance to make good use of that hour, got the incentive to pull together my thoughts. In doing so, I noticed how counselling people with FASD is a process to which I haven’t given much dedicated thought. I’ve simply plunged in when the need arose, and felt my way in, paying heed to my knowledge about the complex set of emotional, cognitive and behavioural barriers I’d be likely to encounter, and the stories of real people that give me cause to hope that the effort is worthwhile.
I’ve lately been observing how, when it comes to growing up with FASD, things happen, but they happen slowly. A person who had never been able to communicate in writing will, in the early 20’s, suddenly start text messaging friends. A person whose grasp of math has never allowed for serious money management will, at the age of 29, take a score sheet and manually calculate the Yahtzee totals.
At conferences I often hear it said that people with FASD, showing remarkable verbal ability, appear to be smarter than they actually are. They talk a good line, but their actions don’t follow their words. The flip side of this is also true. People with FASD, in my experience, use their verbal ability to talk a good line sometimes, and a bad line at others. They ruminate. Their words influence their mental health in a very negative manner, and our words about how they never follow through compound the negativity, for us and for them.
FASD is a disability—a very complex disability—not simple, like blindness or deafness. If you fail to see it as a disability, if you try to break it down into parts and address them one at a time, you’ll get brain fatigue trying to understand it with logic, broken heart protecting yourself in its emotional storms, and a case of frustration so big that only an extended tropical vacation can cure it.
At conferences I have heard it said that insight-based psychotherapies don’t work well with people who have FASD. Frankly, I don’t think we know what works and doesn’t work. That’s one good reason, I’d say, for Lisa to be doing her study. Another good reason is that others, like me, have probably developed some undocumented strategies to use with people who have FASD. Undocumented is the operative concept here—explaining why we find so little useful counselling information in the literature. Alas, we counsellors have something in common with people who have FASD. We’ve been slow to develop.
Showing posts with label FASD. Show all posts
Showing posts with label FASD. Show all posts
Monday, December 19, 2011
Sunday, October 17, 2010
BELIEVING THE EXPERTS
Dan gardner, one of my favourite newspaper columnists, has a new book out: Future Babble: Why Expert Predictions Fail -- and Why We Believe Them Anyway. Newspapers all over the country have been picking up an exerpt from its introduction. You can find one at Often Wrong and Rarely Accurate
Gardner writes: “As for why we believe expert predictions, the answer lies ultimately in our hard-wired aversion to uncertainty. People want to know what's happening now and what will happen in the future, and admitting we don't know can be profoundly disturbing. So we try to eliminate uncertainty however we can. We see patterns where there are none. We treat random results as if they are meaningful. And we treasure stories that replace the complexity and uncertainty of reality with simple narratives about what's happening and what will happen. Sometimes we create these stories ourselves, but, even with the human mind's bountiful capacity for self-delusion, it can be hard to fool ourselves into thinking we know what the future holds for the stock market, the climate, the price of oil, or a thousand other pressing issues. So we look to experts. They must know. They have PhDs, prizes, and offices in major universities. And thanks to the news media's preference for the simple and dramatic, the sort of expert we are likely to hear from is confident and conclusive. They know
what will happen; they are certain of it. We like that because that is how we want to feel. And so we convince ourselves that these wise men and women
can do what wise men and women have never been able to do before. Fundamentally, we believe because we want to believe.”
I read about Gardner’s book and felt the shock of being exposed. He might be one of my favourite columnists, but I hadn’t imagined that he knew me so well. I didn’t think he knew me at all. But what do I know anyway?
Last Thursday I had one of those so-called educational experiences, call it a life lesson in being your own expert and believing what you want to believe. It happened as I made my way to work, around 7:30 AM. I was boarding the LRT, our transit train here in Edmonton.
When you take a train on the LRT you have some choices. There are, in fact, two ends to every station. Depending on what decisions I have made before I take the train, I might enter the station at either the north end, or the south end. If I enter at the north end, the thing I most often do, I will turn right at the bottom of the stairs and catch the train called Century Park. When I enter at the south end, as I did that day, I will turn left at the bottom of the stairs and take the train called Century Park. I can be confusing for anybody, so Edmonton Transit provides clear, loud automated announcements to prepare you for the arrival of your train. These announcements are accurate about 99.9 percent of the time. Nothing could be simpler, really!
I was thinking as I entered the station at the south end. Just what I was thinking I cannot quite recall. I might have been writing a letter in my mind, or planning a lecture, or editing the guest list for a birthday party, or mentally preparing tonight’s supper. I know better than to let my mind go at that hour, but I honestly keep forgetting that in the past few years I’ve pretty much lost my ability to think and travel at the same time. It’s a bit like walking and chewing gum. I have to do one or the other. When I got to the bottom of the stairs I turned right and waited for the train. I had only a few seconds to wait. The announcement came on loud and clear. “Next train, Clareview,” it said. The train pulled up in front of me and I got on.
I was not alone. The platform was busy with people getting off and on. I was already comfortably seated when the door closed. When the door closes, a clearly audible announcement comes on. On my route to work, the announcement usually says, “Next Stop, Central Station.” Automation is an imperfect thing. Sometimes announcements on the train are a little off. When this happens, the driver generally picks up the microphone and appologizes for the computer’s failings. That announcement is accurate about 90% of the time.
As the door closed, the automation said, “Next stop, Stadium Station.”
Comfortably seated, I waited for the driver to make the correction. He didn’t make a correction, but that didn’t bother me. I had forgotten about the letter I might have been writing or the supper I might have been planning. Now I thought about the times when the announcements are wrong. I felt so sorry for the people who believe the announcements when they are wrong. I was happy, content, relaxed in my seat. It wasn’t until the train came out of the ground, halfway to Stadium station, that the light began to dawn. I had entered the station at the south end, I had turned the wrong way. I had ignored the name of the train when it arrived. I had disbelieved the announcement that told me we were on our way to Stadium. And now I was not headed for work at all.
Oh well, I sighed. There is a solution. I stood on the platform at Stadium Station, waiting for the train called Century Park. As I waited I wondered what the day would bring. When I got to the office I discovered that Graham Thompson, another of my favourite newspaper columnists, had published an article about FASD Justice Ministers’ Interest In Finding Solutions For FASD Offers Hope Thompson was quoting an expert—me. He was quoting me accurately. No errors were made. And I’m almost certain that what I said was right.
Gardner writes: “As for why we believe expert predictions, the answer lies ultimately in our hard-wired aversion to uncertainty. People want to know what's happening now and what will happen in the future, and admitting we don't know can be profoundly disturbing. So we try to eliminate uncertainty however we can. We see patterns where there are none. We treat random results as if they are meaningful. And we treasure stories that replace the complexity and uncertainty of reality with simple narratives about what's happening and what will happen. Sometimes we create these stories ourselves, but, even with the human mind's bountiful capacity for self-delusion, it can be hard to fool ourselves into thinking we know what the future holds for the stock market, the climate, the price of oil, or a thousand other pressing issues. So we look to experts. They must know. They have PhDs, prizes, and offices in major universities. And thanks to the news media's preference for the simple and dramatic, the sort of expert we are likely to hear from is confident and conclusive. They know
what will happen; they are certain of it. We like that because that is how we want to feel. And so we convince ourselves that these wise men and women
can do what wise men and women have never been able to do before. Fundamentally, we believe because we want to believe.”
I read about Gardner’s book and felt the shock of being exposed. He might be one of my favourite columnists, but I hadn’t imagined that he knew me so well. I didn’t think he knew me at all. But what do I know anyway?
Last Thursday I had one of those so-called educational experiences, call it a life lesson in being your own expert and believing what you want to believe. It happened as I made my way to work, around 7:30 AM. I was boarding the LRT, our transit train here in Edmonton.
When you take a train on the LRT you have some choices. There are, in fact, two ends to every station. Depending on what decisions I have made before I take the train, I might enter the station at either the north end, or the south end. If I enter at the north end, the thing I most often do, I will turn right at the bottom of the stairs and catch the train called Century Park. When I enter at the south end, as I did that day, I will turn left at the bottom of the stairs and take the train called Century Park. I can be confusing for anybody, so Edmonton Transit provides clear, loud automated announcements to prepare you for the arrival of your train. These announcements are accurate about 99.9 percent of the time. Nothing could be simpler, really!
I was thinking as I entered the station at the south end. Just what I was thinking I cannot quite recall. I might have been writing a letter in my mind, or planning a lecture, or editing the guest list for a birthday party, or mentally preparing tonight’s supper. I know better than to let my mind go at that hour, but I honestly keep forgetting that in the past few years I’ve pretty much lost my ability to think and travel at the same time. It’s a bit like walking and chewing gum. I have to do one or the other. When I got to the bottom of the stairs I turned right and waited for the train. I had only a few seconds to wait. The announcement came on loud and clear. “Next train, Clareview,” it said. The train pulled up in front of me and I got on.
I was not alone. The platform was busy with people getting off and on. I was already comfortably seated when the door closed. When the door closes, a clearly audible announcement comes on. On my route to work, the announcement usually says, “Next Stop, Central Station.” Automation is an imperfect thing. Sometimes announcements on the train are a little off. When this happens, the driver generally picks up the microphone and appologizes for the computer’s failings. That announcement is accurate about 90% of the time.
As the door closed, the automation said, “Next stop, Stadium Station.”
Comfortably seated, I waited for the driver to make the correction. He didn’t make a correction, but that didn’t bother me. I had forgotten about the letter I might have been writing or the supper I might have been planning. Now I thought about the times when the announcements are wrong. I felt so sorry for the people who believe the announcements when they are wrong. I was happy, content, relaxed in my seat. It wasn’t until the train came out of the ground, halfway to Stadium station, that the light began to dawn. I had entered the station at the south end, I had turned the wrong way. I had ignored the name of the train when it arrived. I had disbelieved the announcement that told me we were on our way to Stadium. And now I was not headed for work at all.
Oh well, I sighed. There is a solution. I stood on the platform at Stadium Station, waiting for the train called Century Park. As I waited I wondered what the day would bring. When I got to the office I discovered that Graham Thompson, another of my favourite newspaper columnists, had published an article about FASD Justice Ministers’ Interest In Finding Solutions For FASD Offers Hope Thompson was quoting an expert—me. He was quoting me accurately. No errors were made. And I’m almost certain that what I said was right.
Friday, October 01, 2010
ON SEEING AND READING
This morning, in the waiting room at the Cancer Institute I suddenly remembered the first time Lawrence and I went out for dinner. We were unlikely dinner dates thrown together by fate, mother and son hungry at suppertime. He was a teen-ager with a driver’s license. I was an ineligible driver with car keys. Everyone else in the family was—somewhere else. It was back in the days when I used to cook for him. Not surprisingly, it was I who suggested going out.
“Where would we go?” he asked. Scepticism hung heavy on the air.
“Wherever you like,” I said brightly.
“MacDonald’s,” he said.
“Anywhere except MacDonald’s,” I said. I had, after all, been thinking of going out for an actual dinner. Surely he didn’t want MacDonald’s! We could walk there.
“Oh Mother!” He gave one of those sighs that conveys everything without saying anything. “It has to be somewhere where we can order,” he said.
And now I understood what he was thinking. Considering our particular blend of disabilities, we were an impractical match for a dinner menu—a mother who would be able to read if she could only see, and a son who could see but not read. He was imagining the two of us staring blankly at a menu, neither with a clue as to what was on it. He was wondering what we’d say to the waitress, what kind of food we might get if he simply pointed at random to some item, hoping it was a burger.
Given the amount of creativity it might have taken to overcome this difficulty, I did think it probably would have been easier to stay home. But once you’ve imagined yourself out for dinner, it’s hard to let that go. So we went to Boston Pizza and managed well enough, or so we must have, because I don’t recall any memorable trauma.
These days we never go out for dinner, though we occasionally go somewhere together. Today our destination was the Cancer Institute, a stupefying jumble of scurrying professionals, snaking hallways, directional signs and forms requiring due diligence. Going out to dinner at any restaurant would have been a better choice. But this was not a menu with choices. Cancer institutes carry a lot of weight. If they tell you to go there on October 1, you go there on October 1, even if you have to go with your less-than-completely-helpful mother.
There are really two problems that arise when you cannot read. The first is that you cannot read, a condition that makes it difficult to know where to go, what to do, and what you might be giving written permission for in a busy hospital. The second problem lies in the explanation of it to others. For a blind person it’s easy enough. You show your cane and let them take it from there. If that doesn’t get you what you need, you swallow hard and say, “I’m blind. I’ll need you to read this.” Negligent as it may sometimes be, our culture, in general, is kind to the blind. But if you are not blind, and you are holding a set of car keys, and maybe you are even guiding a blind person, well, the situation isn’t quite so straightforward. Outside the professional realm, a variety of words are used to describe young men who function without the benefit of reading. They’re not fitting for a HOPE LADY Blog. I won’t mention them here. But even when nobody mentions them, they echo in the heads of those who are presented with English forms that might as well be in German or Italian for all the sense they make.
I wished I hadn’t gone with him. I wished somebody else was there in my place, somebody who could be a better help. I am a loving mother. Guided by the instinct of a protective hen, I would happily have sent him to the washroom while I whispered a request to the receptionist. “Please help my son read this form. It’s not his fault that he can’t read it.”
But he did not need the washroom, and he did not need me to explain it. I sat in the waiting room, waiting. He boldly told the lady she would have to read the form for him. He didn’t give her a reason, and she didn’t ask for one. You’d think that reading forms was the thing she was expecting to do.
Given the way things turned out, so much better than I expected, you surely can’t blame me for wondering if we should go out for lunch.
“Where would we go?” he asked. Scepticism hung heavy on the air.
“Wherever you like,” I said brightly.
“MacDonald’s,” he said.
“Anywhere except MacDonald’s,” I said. I had, after all, been thinking of going out for an actual dinner. Surely he didn’t want MacDonald’s! We could walk there.
“Oh Mother!” He gave one of those sighs that conveys everything without saying anything. “It has to be somewhere where we can order,” he said.
And now I understood what he was thinking. Considering our particular blend of disabilities, we were an impractical match for a dinner menu—a mother who would be able to read if she could only see, and a son who could see but not read. He was imagining the two of us staring blankly at a menu, neither with a clue as to what was on it. He was wondering what we’d say to the waitress, what kind of food we might get if he simply pointed at random to some item, hoping it was a burger.
Given the amount of creativity it might have taken to overcome this difficulty, I did think it probably would have been easier to stay home. But once you’ve imagined yourself out for dinner, it’s hard to let that go. So we went to Boston Pizza and managed well enough, or so we must have, because I don’t recall any memorable trauma.
These days we never go out for dinner, though we occasionally go somewhere together. Today our destination was the Cancer Institute, a stupefying jumble of scurrying professionals, snaking hallways, directional signs and forms requiring due diligence. Going out to dinner at any restaurant would have been a better choice. But this was not a menu with choices. Cancer institutes carry a lot of weight. If they tell you to go there on October 1, you go there on October 1, even if you have to go with your less-than-completely-helpful mother.
There are really two problems that arise when you cannot read. The first is that you cannot read, a condition that makes it difficult to know where to go, what to do, and what you might be giving written permission for in a busy hospital. The second problem lies in the explanation of it to others. For a blind person it’s easy enough. You show your cane and let them take it from there. If that doesn’t get you what you need, you swallow hard and say, “I’m blind. I’ll need you to read this.” Negligent as it may sometimes be, our culture, in general, is kind to the blind. But if you are not blind, and you are holding a set of car keys, and maybe you are even guiding a blind person, well, the situation isn’t quite so straightforward. Outside the professional realm, a variety of words are used to describe young men who function without the benefit of reading. They’re not fitting for a HOPE LADY Blog. I won’t mention them here. But even when nobody mentions them, they echo in the heads of those who are presented with English forms that might as well be in German or Italian for all the sense they make.
I wished I hadn’t gone with him. I wished somebody else was there in my place, somebody who could be a better help. I am a loving mother. Guided by the instinct of a protective hen, I would happily have sent him to the washroom while I whispered a request to the receptionist. “Please help my son read this form. It’s not his fault that he can’t read it.”
But he did not need the washroom, and he did not need me to explain it. I sat in the waiting room, waiting. He boldly told the lady she would have to read the form for him. He didn’t give her a reason, and she didn’t ask for one. You’d think that reading forms was the thing she was expecting to do.
Given the way things turned out, so much better than I expected, you surely can’t blame me for wondering if we should go out for lunch.
Wednesday, July 07, 2010
BOUNDARIES AND THE WHOLE PERSON APPROACH
It’s summer and there’s some time to reflect on how things have been going. I’ve been looking at this blog and thinking about how mixed up my life gets, the personal and the professional. Others talk about boundaries, but my life seems to be more of a unified whole.
From a personal perspective, this blog has been about the wedding. We talk about the wedding every day. It fills our thoughts.
At work, however, it’s been about running hope and strengths groups for different populations, people with chronic pain, parents of children who reported sexual abuse, parents with fetal alcohol spectrum disorder—FASD. Sometimes at work the boundaries are clear, and sometimes they are not so clear. The FASD work is an example of the not-so-clear. And yet I cannot help but believe that it has a place in the professional world. Interestingly, it has been the easiest work to publish. You can find it in the AASCF Research Journal Volume 2 Spring 2010
That piece builds on a personal piece written earlier for publication by the FASD Support Network of Saskatchewan in Living with FASD Spring 2010
From a personal perspective, this blog has been about the wedding. We talk about the wedding every day. It fills our thoughts.
At work, however, it’s been about running hope and strengths groups for different populations, people with chronic pain, parents of children who reported sexual abuse, parents with fetal alcohol spectrum disorder—FASD. Sometimes at work the boundaries are clear, and sometimes they are not so clear. The FASD work is an example of the not-so-clear. And yet I cannot help but believe that it has a place in the professional world. Interestingly, it has been the easiest work to publish. You can find it in the AASCF Research Journal Volume 2 Spring 2010
That piece builds on a personal piece written earlier for publication by the FASD Support Network of Saskatchewan in Living with FASD Spring 2010
Monday, February 01, 2010
POSITIVE PERSPECTIVES ON FASD
Science reporter Anne Mcilroy had an article in the Toronto Globe and Mail last Saturday, January 31 2010: “”How playing Dance Dance Revolution could repair children's damaged brains
Researchers hope repetitive tasks can reverse effects of alcohol.”” The moment I read it, I began to feel hope. It was a thrill tosee that so many researchers are working together.
“”The six-year-old boy plays the game Operation, skillfully wielding a pair of tweezers in a school gym that doubles as a research lab. His brain has been
damaged by the alcohol his mother drank when he was in the womb, but he's adept at extracting tiny plastic bones.
"When it gets too easy we will have him switch to his left hand," says Chris Bertram, a scientist at the University of the Fraser Valley in Abbotsford,
B.C., who is investigating whether children with a fetal alcohol spectrum disorder, or FASD, can rewire their brains by improving their strongest motor
skills. Advances in understanding neuroplasticity, or how experience can change the brain, have led to therapies that have helped people who have suffered
strokes or traumatic brain injuries learn to speak again or move paralyzed limbs. Now, a growing number of scientists hope the revolution can help children
whose brains were damaged by alcohol before they were born.
They are testing different approaches - including computer games and other specialized training - in hopes of helping kids with FASD strengthen connections
in their brains and boost their cognitive skills.
Dr. Bertram and his colleagues have assessed all eight kids with FASD who are hard at play at various stations in the gymnasium. All are good at something,
perhaps the fine motor skills needed to pluck a rib out of a cartoonish chest or the co-ordination needed for the interactive videogame Dance Dance Revolution.
But they have a wide variety of cognitive and emotional problems that include trouble paying attention, remembering what they have learned, anticipating
the consequences of their actions and controlling their impulses. Hyperactivity is common; they can be challenging to manage at home and at school. Dr.
Bertram's hypothesis is that the eight-week program will do more than just improve their rope climbing and free-throw shooting.
The idea is that improving one area of brain function, in this case motor skills, will also boost their ability to pay attention and to regulate their impulses.
He is still analyzing the data from the 35 kids who have been through the program, but the preliminary results have been encouraging, he says.
"We call it transfer of learning, or transfer of performance," Dr. Bertram says.
Alcohol damages many parts of the developing brain, says Christian Beaulieu, a brain imaging expert at the University of Alberta. It can affect areas and
structures critical for memory, learning and abstract thinking. He and his colleagues have shown it also damages white matter, the connections that allow
parts of the brain to communicate and work together.
But recent experiments with laboratory animals offer hope. At the University of Victoria, Brian Christie has been able to reverse the brain damage caused
by fetal alcohol exposure in rats by getting them to exercise.””
Mcilroy’s article comes just when I need it. Here at the Hope Foundation we are working on FASD from an adult emotional perspective. With funding from the Edmonton Fetal Alcohol Network, staff from four agencies including our own are collaborating to offer a hope group to parents who have FASD. As adults with children of their own, they struggle to be good parents while continuing to cope with the cognitive, motor and emotional difficulties they had as children. Parenting is made all the more difficult for them because the behavior of their own parents was and still is impacted by substance abuse.
You have to be very focussed to offer a hope group to people who have so many pressing issues. In a two-hour session they offer you dozens of opportunities to veer away from hope. How easy it is to hear their problems, their sadness, their self-stated inadequacies. These, after all, are the reasons they came to a group, the issues they are accustomed to presenting when professional helpers are in the room.
Mcilroy’s article goes on to highlight the positive. “”Dr. Bertram says that many of the current therapies or interventions being used with children with FASD focus on their deficits - for example, anger management
therapy for a child who is acting out in school or extra time devoted to reading or math for a child struggling in those subjects.
"Traditional intervention programs have these kids doing things their brains are not adept at doing, and their success rates are not great. We flipped things
around and said, 'Why don't we build intervention programs based on things they are good at.' "
He and his colleagues build an individual program for each child based on three areas of strength, making it increasingly challenging over the eight weeks.
The kids also get to pick a fourth activity they like. The researchers carefully monitor their progress when they come twice a week after school for two
hours. He is also monitoring levels of cortisol, a stress hormone, to see if it drops after the eight weeks.
There is growing scientific evidence that children with FASD have a heightened response to stress that can make it difficult for them to cope with situations
at home or in the classroom.
At the University of British Columbia, Joanne Weinberg is investigating this phenomenon in laboratory animals and, in particular, how areas of the brain
that are important in the stress response system overlap to a large extent with areas of the brain involved in depression, addictions and other mental-health
problems, also common among people with FASD.
One day, the work could lead to new drugs that target the stress response system.””
In our group we are examining personal strengths, digging through the sadness to find the things people love, the things they are good at. I like to think there will be positive programs to go along with the stress-reducing drugs.
Researchers hope repetitive tasks can reverse effects of alcohol.”” The moment I read it, I began to feel hope. It was a thrill tosee that so many researchers are working together.
“”The six-year-old boy plays the game Operation, skillfully wielding a pair of tweezers in a school gym that doubles as a research lab. His brain has been
damaged by the alcohol his mother drank when he was in the womb, but he's adept at extracting tiny plastic bones.
"When it gets too easy we will have him switch to his left hand," says Chris Bertram, a scientist at the University of the Fraser Valley in Abbotsford,
B.C., who is investigating whether children with a fetal alcohol spectrum disorder, or FASD, can rewire their brains by improving their strongest motor
skills. Advances in understanding neuroplasticity, or how experience can change the brain, have led to therapies that have helped people who have suffered
strokes or traumatic brain injuries learn to speak again or move paralyzed limbs. Now, a growing number of scientists hope the revolution can help children
whose brains were damaged by alcohol before they were born.
They are testing different approaches - including computer games and other specialized training - in hopes of helping kids with FASD strengthen connections
in their brains and boost their cognitive skills.
Dr. Bertram and his colleagues have assessed all eight kids with FASD who are hard at play at various stations in the gymnasium. All are good at something,
perhaps the fine motor skills needed to pluck a rib out of a cartoonish chest or the co-ordination needed for the interactive videogame Dance Dance Revolution.
But they have a wide variety of cognitive and emotional problems that include trouble paying attention, remembering what they have learned, anticipating
the consequences of their actions and controlling their impulses. Hyperactivity is common; they can be challenging to manage at home and at school. Dr.
Bertram's hypothesis is that the eight-week program will do more than just improve their rope climbing and free-throw shooting.
The idea is that improving one area of brain function, in this case motor skills, will also boost their ability to pay attention and to regulate their impulses.
He is still analyzing the data from the 35 kids who have been through the program, but the preliminary results have been encouraging, he says.
"We call it transfer of learning, or transfer of performance," Dr. Bertram says.
Alcohol damages many parts of the developing brain, says Christian Beaulieu, a brain imaging expert at the University of Alberta. It can affect areas and
structures critical for memory, learning and abstract thinking. He and his colleagues have shown it also damages white matter, the connections that allow
parts of the brain to communicate and work together.
But recent experiments with laboratory animals offer hope. At the University of Victoria, Brian Christie has been able to reverse the brain damage caused
by fetal alcohol exposure in rats by getting them to exercise.””
Mcilroy’s article comes just when I need it. Here at the Hope Foundation we are working on FASD from an adult emotional perspective. With funding from the Edmonton Fetal Alcohol Network, staff from four agencies including our own are collaborating to offer a hope group to parents who have FASD. As adults with children of their own, they struggle to be good parents while continuing to cope with the cognitive, motor and emotional difficulties they had as children. Parenting is made all the more difficult for them because the behavior of their own parents was and still is impacted by substance abuse.
You have to be very focussed to offer a hope group to people who have so many pressing issues. In a two-hour session they offer you dozens of opportunities to veer away from hope. How easy it is to hear their problems, their sadness, their self-stated inadequacies. These, after all, are the reasons they came to a group, the issues they are accustomed to presenting when professional helpers are in the room.
Mcilroy’s article goes on to highlight the positive. “”Dr. Bertram says that many of the current therapies or interventions being used with children with FASD focus on their deficits - for example, anger management
therapy for a child who is acting out in school or extra time devoted to reading or math for a child struggling in those subjects.
"Traditional intervention programs have these kids doing things their brains are not adept at doing, and their success rates are not great. We flipped things
around and said, 'Why don't we build intervention programs based on things they are good at.' "
He and his colleagues build an individual program for each child based on three areas of strength, making it increasingly challenging over the eight weeks.
The kids also get to pick a fourth activity they like. The researchers carefully monitor their progress when they come twice a week after school for two
hours. He is also monitoring levels of cortisol, a stress hormone, to see if it drops after the eight weeks.
There is growing scientific evidence that children with FASD have a heightened response to stress that can make it difficult for them to cope with situations
at home or in the classroom.
At the University of British Columbia, Joanne Weinberg is investigating this phenomenon in laboratory animals and, in particular, how areas of the brain
that are important in the stress response system overlap to a large extent with areas of the brain involved in depression, addictions and other mental-health
problems, also common among people with FASD.
One day, the work could lead to new drugs that target the stress response system.””
In our group we are examining personal strengths, digging through the sadness to find the things people love, the things they are good at. I like to think there will be positive programs to go along with the stress-reducing drugs.
Friday, December 18, 2009
PREPARING A PSYCHO-EDUCATIONAL HOPE GROUP FOR PARENTS WITH FETAL ALCOHOL SYNDROME
I interviewed a fellow with fasd—fetal alcohol spectrum disorder. I figured I should get his advice about a project I have been working toward, a project that starts in January, a psycho-educational hope group for parents who have fasd.
The group is the brainchild of a former Hope Foundation practicum student, Dorothy Henneveld. Working for Catholic Social Services, she organizes programs for families affected by fasd. She knows we run psycho-educational hope groups and she wondered if we could work with Catholic Social Services to run one for parents who have fasd.
Fasd affects the executive function of the brain. It influences intelligence, mood and behaviour. People with fasd tend to live in the moment. They often find it difficult to plan for the future. Those who become parents are often single parents, managing with very little money, assailed by mood swings and gaps in intellectual functioning. They find it difficult to cope, and some of them become quite isolated.
I have some experience in talking about hope with people who have fasd. Those conversations tend to be interesting, and people seem to benefit from them.
There was a time when hardly any people with fasd were diagnosed. Even if they had been, there was little or no help for them. But things are changing. Catholic Social Services has a mentorship program in place. For our joint project they will arrange child-care and transportation for parents who want to attend the group. One of their mentors will sit in as a co-facilitator. All this will help a great deal.
That said, running the group will present some challenges. I want to have the best possible group, hence my reason for conducting this interview with somebody who knows fasd from the inside.
Me: “I am going to be running a group for parents who have fasd. I want the group to be a place where they can talk about being parents—you know, learn things and talk about problems they might be having. What problems do you think they might have?”
Him: “A lot of noise and fighting in the house. We tend to drive our parents crazy.”
Me: “Oh, I don’t mean kids with fasd. I mean parents who have it. What kind of problems do you think they would have?”
Him: “None if they take my advice. I’d just tell them to smoke a reefer and that will just settle them down so nothing will bother them.”
Now I know why I asked. I needed to get the feel for the way things could go in the group. I know this guy. He’s about one-quarter serious, and three-quarters having me on, trying to get a rise out of me.
Me: “Okay. I’ll tell them I asked you for advice and you said just smoke a reefer and everything will feel okay.”
Him: “You’ll get fired if you tell them to smoke up. Maybe you shouldn’t do that.”
Me: “I’m a bit worried about that. That’s why I’m doing research to find out what I should do with the group.”
Him, feeling the pressure: “How should I know what you should do? I’m not a parent. Go ask a parent.”
Me, in self-defence: “I don’t know any parents with fasd yet. You are my wisest contact. That’s why I am asking your advice. I don’t want to do it wrong. How do you think they will feel if I go in there and lecture them about having fasd and how that makes it hard to be a parent?”
Him: “Stupid.”
Me: “That’s what worries me. You see, I want the group to be a respectful place where people will feel comfortable to talk about things and learn things.”
Him: “Then think of some questions, and go around the room and make sure every person has a chance to answer. Then they can learn from each other. One person will say they have this problem or that problem and another person will say they used to have that problem but it got solved this or that way.”
Me, wanting to dig deeper: “Good suggestion. You know that people with fasd sometimes have trouble reading. Do you think that would cause any problems if they were parents?”
Him: “They have to get somebody else to read their kids homework once they get to grade 4 or so. That’s what I’m telling you. People will have ideas. You don’t have to know everything. Just let them talk. That’s one thing we are really good at—talking.”
I think I heard that somewhere recently, maybe last month in Saskatoon when I was running a hope retreat for parents who have raised or are raising children with fasd. One of them said, “These kids with fasd are really good at talking.”
That, come to think of it, is a very good reason for asking advice on how to run the group.
The group is the brainchild of a former Hope Foundation practicum student, Dorothy Henneveld. Working for Catholic Social Services, she organizes programs for families affected by fasd. She knows we run psycho-educational hope groups and she wondered if we could work with Catholic Social Services to run one for parents who have fasd.
Fasd affects the executive function of the brain. It influences intelligence, mood and behaviour. People with fasd tend to live in the moment. They often find it difficult to plan for the future. Those who become parents are often single parents, managing with very little money, assailed by mood swings and gaps in intellectual functioning. They find it difficult to cope, and some of them become quite isolated.
I have some experience in talking about hope with people who have fasd. Those conversations tend to be interesting, and people seem to benefit from them.
There was a time when hardly any people with fasd were diagnosed. Even if they had been, there was little or no help for them. But things are changing. Catholic Social Services has a mentorship program in place. For our joint project they will arrange child-care and transportation for parents who want to attend the group. One of their mentors will sit in as a co-facilitator. All this will help a great deal.
That said, running the group will present some challenges. I want to have the best possible group, hence my reason for conducting this interview with somebody who knows fasd from the inside.
Me: “I am going to be running a group for parents who have fasd. I want the group to be a place where they can talk about being parents—you know, learn things and talk about problems they might be having. What problems do you think they might have?”
Him: “A lot of noise and fighting in the house. We tend to drive our parents crazy.”
Me: “Oh, I don’t mean kids with fasd. I mean parents who have it. What kind of problems do you think they would have?”
Him: “None if they take my advice. I’d just tell them to smoke a reefer and that will just settle them down so nothing will bother them.”
Now I know why I asked. I needed to get the feel for the way things could go in the group. I know this guy. He’s about one-quarter serious, and three-quarters having me on, trying to get a rise out of me.
Me: “Okay. I’ll tell them I asked you for advice and you said just smoke a reefer and everything will feel okay.”
Him: “You’ll get fired if you tell them to smoke up. Maybe you shouldn’t do that.”
Me: “I’m a bit worried about that. That’s why I’m doing research to find out what I should do with the group.”
Him, feeling the pressure: “How should I know what you should do? I’m not a parent. Go ask a parent.”
Me, in self-defence: “I don’t know any parents with fasd yet. You are my wisest contact. That’s why I am asking your advice. I don’t want to do it wrong. How do you think they will feel if I go in there and lecture them about having fasd and how that makes it hard to be a parent?”
Him: “Stupid.”
Me: “That’s what worries me. You see, I want the group to be a respectful place where people will feel comfortable to talk about things and learn things.”
Him: “Then think of some questions, and go around the room and make sure every person has a chance to answer. Then they can learn from each other. One person will say they have this problem or that problem and another person will say they used to have that problem but it got solved this or that way.”
Me, wanting to dig deeper: “Good suggestion. You know that people with fasd sometimes have trouble reading. Do you think that would cause any problems if they were parents?”
Him: “They have to get somebody else to read their kids homework once they get to grade 4 or so. That’s what I’m telling you. People will have ideas. You don’t have to know everything. Just let them talk. That’s one thing we are really good at—talking.”
I think I heard that somewhere recently, maybe last month in Saskatoon when I was running a hope retreat for parents who have raised or are raising children with fasd. One of them said, “These kids with fasd are really good at talking.”
That, come to think of it, is a very good reason for asking advice on how to run the group.
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