Thursday, September 10, 2009
FASDay article
FASDay article-
http://www.dl-online.com/event/article/id/47367/group/News/
Published September 09 2009
FASD Awareness Day
Nearly 8,500 babies are born each year in Minnesota with brain damage caused by prenatal exposure.
On Sept. 9, the White Earth Fetal Alcohol Spectrum Disorders Program will celebrate FASD Awareness Day. Each year on the ninth day of the ninth month, we ask people to remember that during the nine months of pregnancy a woman should not drink alcohol. It can cause Fetal Alcohol Spectrum Disorders (FASD).
“He doesn’t look like he has FAS,” the physician declared as he looked first at my son’s face and then skeptically at me, says Kari Fletcher.Fletcher had taken her 11-year-old son in for a strep culture and when the on-call physician asked if he regularly took any medications. She had answered with the names and dosages and explained, “Ben has a Fetal Alcohol Spectrum Disorder.”
After seeing the doctor’s obvious disbelief she said she clarified, “He does not have FAS; he has ARND — Alcohol Related Neurodevelopmental Disorder. His face was not affected by his prenatal exposure to alcohol but he struggles with impulse control, self regulation and other learning and behavioral problems.”
“My son’s face is beautiful, so is my daughter’s, but she has the facial features of Fetal Alcohol Syndrome and he does not. They are biological half siblings with the same birth mother; both were our foster children and are now ours by adoption.”
Ben and Anna look “normal” and both have IQs within the average range, but both have permanent brain damage that was caused by prenatal exposure to alcohol. Anna’s partial Fetal Alcohol Syndrome (pFAS) is only slightly more visible to the world than Ben’s ARND and it has been our experience that most people, professionals included, do not understand what they cannot see.
Why do some children with FASD have “identifying” facial features and some don’t?
The face forms during one week very early in the pregnancy, likely on days 19-21. If there is alcohol use by the mother during that specific time of fetal development the child may have the facial features of Fetal Alcohol Syndrome, but if the alcohol use occurs during the days before or after that time the face will develop normally.
However, the brain is forming throughout the pregnancy and can be affected at any time alcohol is used during pregnancy. The severity and type of damage varies based on when the alcohol is used, how much is used, as well as individual differences in the mother and fetus.
Alcohol, according to the Institute of Medicine in their 1996 report to congress, causes more damage to the developing fetal brain than heroin, cocaine or marijuana.
So many people look at the face for evidence of this disability but a very small percentage of people with FASD have facial features or “full blown FAS” (facial features, growth deficiency and central nervous system or brain damage). Most will have neurological impairment that causes them to struggle in life but rather than being supported and understood to have a disability, they are blamed and punished.
Fletcher said, they’ve been open with Ben and Anna about their diagnosis. They also have a daughter who has Type 1 Diabetes and talk to her about why it is important to manage her blood sugars, what can happen if she doesn’t, and why her individual needs may be different from those of her peers. Her hope, she said, is that my children who have FASD will grow to understand their needs in the same way — without the stigma.
“I want people to see FASD because with an estimated 1 in 100 people in our country affected, we cannot close our eyes to this very preventable disability. So we teach and we advocate.
“My kids’ disability may be invisible, but I’m not.”
The Minnesota Organization on Fetal Alcohol Syndrome encourages families, touched by FASD, to visit the new Virtual Family Center at www.mofas.org.
http://www.dl-online.com/event/article/id/47367/group/News/
Published September 09 2009
FASD Awareness Day
Nearly 8,500 babies are born each year in Minnesota with brain damage caused by prenatal exposure.
On Sept. 9, the White Earth Fetal Alcohol Spectrum Disorders Program will celebrate FASD Awareness Day. Each year on the ninth day of the ninth month, we ask people to remember that during the nine months of pregnancy a woman should not drink alcohol. It can cause Fetal Alcohol Spectrum Disorders (FASD).
“He doesn’t look like he has FAS,” the physician declared as he looked first at my son’s face and then skeptically at me, says Kari Fletcher.Fletcher had taken her 11-year-old son in for a strep culture and when the on-call physician asked if he regularly took any medications. She had answered with the names and dosages and explained, “Ben has a Fetal Alcohol Spectrum Disorder.”
After seeing the doctor’s obvious disbelief she said she clarified, “He does not have FAS; he has ARND — Alcohol Related Neurodevelopmental Disorder. His face was not affected by his prenatal exposure to alcohol but he struggles with impulse control, self regulation and other learning and behavioral problems.”
“My son’s face is beautiful, so is my daughter’s, but she has the facial features of Fetal Alcohol Syndrome and he does not. They are biological half siblings with the same birth mother; both were our foster children and are now ours by adoption.”
Ben and Anna look “normal” and both have IQs within the average range, but both have permanent brain damage that was caused by prenatal exposure to alcohol. Anna’s partial Fetal Alcohol Syndrome (pFAS) is only slightly more visible to the world than Ben’s ARND and it has been our experience that most people, professionals included, do not understand what they cannot see.
Why do some children with FASD have “identifying” facial features and some don’t?
The face forms during one week very early in the pregnancy, likely on days 19-21. If there is alcohol use by the mother during that specific time of fetal development the child may have the facial features of Fetal Alcohol Syndrome, but if the alcohol use occurs during the days before or after that time the face will develop normally.
However, the brain is forming throughout the pregnancy and can be affected at any time alcohol is used during pregnancy. The severity and type of damage varies based on when the alcohol is used, how much is used, as well as individual differences in the mother and fetus.
Alcohol, according to the Institute of Medicine in their 1996 report to congress, causes more damage to the developing fetal brain than heroin, cocaine or marijuana.
So many people look at the face for evidence of this disability but a very small percentage of people with FASD have facial features or “full blown FAS” (facial features, growth deficiency and central nervous system or brain damage). Most will have neurological impairment that causes them to struggle in life but rather than being supported and understood to have a disability, they are blamed and punished.
Fletcher said, they’ve been open with Ben and Anna about their diagnosis. They also have a daughter who has Type 1 Diabetes and talk to her about why it is important to manage her blood sugars, what can happen if she doesn’t, and why her individual needs may be different from those of her peers. Her hope, she said, is that my children who have FASD will grow to understand their needs in the same way — without the stigma.
“I want people to see FASD because with an estimated 1 in 100 people in our country affected, we cannot close our eyes to this very preventable disability. So we teach and we advocate.
“My kids’ disability may be invisible, but I’m not.”
The Minnesota Organization on Fetal Alcohol Syndrome encourages families, touched by FASD, to visit the new Virtual Family Center at www.mofas.org.
Wednesday, July 29, 2009
Video
Saturday, January 31, 2009
Fairmont Sentinel Article
Fletcher: Disorder is preventable
Kylie Saari — Staff Writer
POSTED: January 31, 2009
Fairmont Sentinel article
FAIRMONT - Ben is 11 years old. He looks like an average child; he has an average IQ. But when he gets frustrated, he becomes unable to control his rage.
"School is the most frustrating part of life right now," said his adoptive mother, Kari Fletcher. "Ben would get frustrated and flip into a rage and flip over desks and would have to be hauled to the time out room."
Ben's brain has been damaged, an irreversible side effect of his biological mother's alcohol consumption during pregnancy.
And his suffering - along with that of his family - was 100 percent preventable.
Fletcher has dedicated her life to educating people about the effects of drinking alcohol during pregnancy. She is the southern Minnesota regional resource coordinator for the Minnesota Organization on Fetal Alcohol Syndrome.
The Rotary Club of Fairmont is sponsoring a seminar on fetal alcohol spectrum disorders given by Fletcher Thursday at the Fairmont Opera House.
Phil Smith, a member of the Rotary Club, said Fletcher presented the information at a Rotary meeting last year.
"We thought, 'Wow! This is 100 percent preventable, so if we could get this out to as many people as (possible), that would be a good thing,'" Smith said.
Fletcher said fetal alcohol syndrome disorder is a spectrum disorder, meaning the severity of the birth defects fall on a continuum.
"Most people don't have full blown fetal alcohol syndrome, with the facial features and small bodies," Fletcher said. "Most people with fetal alcohol spectrum disorders look pretty normal, have average IQs. The problem is with the frontal lobe, the part of the brain that tells us to stop and have a second thought. It influences impulse control, lets kids plan things out and to learn something in one setting and apply it in another setting.
"This is important to surviving in our society."
According to Fletcher, the specific damage caused by prenatal exposure to alcohol depends on when during the pregnancy the mother took a drink. She said the recognizable facial disfiguration - including a flat groove above the lip, a thin upper lip and shortened eyes - seems to be most prevalent when the mother consumes alcohol during the first few weeks of pregnancy - often even before a woman knows she is pregnant.
Brain damage, low birth weight, malformed organs and miscarriage are also effects of alcohol exposure while in utero.
One of the reasons alcohol consumption during pregnancy is so damaging, Fletcher said, is because it goes directly into the baby's blood stream.
"It directly crosses the placenta," she said. "When mom drinks alcohol, the baby's blood alcohol level matches the mom's, but the mom has a mature elimination system. The baby stays 'drunk' longer and doesn't have the mature liver to process it out."
Since the alcohol stays with the fetus longer, there is more time for it to kill or alter brain cells. Fletcher said specialized cells can get rerouted and end up in the wrong part of the brain.
"The child has all the information up there sometimes, but can't access it," she said. "The brain is very vulnerable."
And this disorder doesn't just affect children.
"(People with FASD) can have trouble holding a job, have a hard time in school, and really struggle in our fast paced, abstract society," Fletcher said.
It wasn't until the 1970s that doctors identified fetal alcohol syndrome. The range of disorders on the spectrum - including partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorder and fetal alcohol effects - weren't identified until later, when doctors noticed children with the behavioral and neurological effects of fetal alcohol syndrome, but without the facial features and small stature.
Fletcher pointed out that many people have recognized specific similarities in the children of alcohol-addicted mothers.
"It has been noted throughout history," she said.
"I don't believe any mom means to do this."
Because the symptoms of FASD tend to be invisible - and because of the stigma of a woman admitting to a doctor she drank during pregnancy - fetal alcohol spectrum disorders often are misdiagnosed.
Ben was first diagnosed with attention deficit hyperactivity disorder and autism, Fletcher said.
"The ADHD medications didn't work," she said. "With Ben it made him more aggressive."
Fletcher said that while the symptoms may seem similar between disorders, their underlying cause - and therefore how they are treated - is vastly different.
Ben was eventually diagnosed with alcohol related neurodevelopmental disorder.
Fletcher knew about his disability when he was adopted. She and her husband were Ben's foster parents. After adopting him, the family learned Ben's biological mother had another child needing a home, and the Fletchers adopted her too. Anna is 6 years old and suffers from a fetal alcohol spectrum disorder as well. The couple also have four biological children.
Despite the bleak circumstances fetal alcohol spectrum disorder children have to overcome, Fletcher stresses that this diagnosis is not a death sentence. The key is determining strategies for helping them find success.
"It's like this," she said. "I have a brain deficiency myself, and I don't know where it comes from, but I have a lack of direction. I can study a map all day and not know north. But I travel all over the state. I have to use a map drawn by my husband or Mapquest. I look at my kids and ask myself, 'What can I pull in to help them?' These kids are not lazy, willful or defiant."
For women who are pregnant and maybe had a drink before they knew it, or perhaps even after they did, Fletcher says not to panic.
"Different amounts affect different fetuses," she said. "Timing is a factor, as well as the baby's resiliency."
But if down the road the child has an attention problem, she says not to hesitate to find a doctor familiar with the disorder and have the child tested.
"Many women talk about the pregnancy police," Fletcher said. "'You can't do this, you can't do that,' but I say this isn't about what you can't do, it is about what you can do. This is a disability that you can 100 percent prevent. Wow, you have incredible power."
There are two free educational workshops to choose from during Fletcher's seminar on Thursday - one from 1-4:30 p.m., the other 6:30-9:15 p.m. Three continuing education credits are available with pre-registration and a $20 fee. The deadline for CEU registration is Wednesday. Call (507) 238-4382 to register.
Kylie Saari — Staff Writer
POSTED: January 31, 2009
Fairmont Sentinel article
FAIRMONT - Ben is 11 years old. He looks like an average child; he has an average IQ. But when he gets frustrated, he becomes unable to control his rage.
"School is the most frustrating part of life right now," said his adoptive mother, Kari Fletcher. "Ben would get frustrated and flip into a rage and flip over desks and would have to be hauled to the time out room."
Ben's brain has been damaged, an irreversible side effect of his biological mother's alcohol consumption during pregnancy.
And his suffering - along with that of his family - was 100 percent preventable.
Fletcher has dedicated her life to educating people about the effects of drinking alcohol during pregnancy. She is the southern Minnesota regional resource coordinator for the Minnesota Organization on Fetal Alcohol Syndrome.
The Rotary Club of Fairmont is sponsoring a seminar on fetal alcohol spectrum disorders given by Fletcher Thursday at the Fairmont Opera House.
Phil Smith, a member of the Rotary Club, said Fletcher presented the information at a Rotary meeting last year.
"We thought, 'Wow! This is 100 percent preventable, so if we could get this out to as many people as (possible), that would be a good thing,'" Smith said.
Fletcher said fetal alcohol syndrome disorder is a spectrum disorder, meaning the severity of the birth defects fall on a continuum.
"Most people don't have full blown fetal alcohol syndrome, with the facial features and small bodies," Fletcher said. "Most people with fetal alcohol spectrum disorders look pretty normal, have average IQs. The problem is with the frontal lobe, the part of the brain that tells us to stop and have a second thought. It influences impulse control, lets kids plan things out and to learn something in one setting and apply it in another setting.
"This is important to surviving in our society."
According to Fletcher, the specific damage caused by prenatal exposure to alcohol depends on when during the pregnancy the mother took a drink. She said the recognizable facial disfiguration - including a flat groove above the lip, a thin upper lip and shortened eyes - seems to be most prevalent when the mother consumes alcohol during the first few weeks of pregnancy - often even before a woman knows she is pregnant.
Brain damage, low birth weight, malformed organs and miscarriage are also effects of alcohol exposure while in utero.
One of the reasons alcohol consumption during pregnancy is so damaging, Fletcher said, is because it goes directly into the baby's blood stream.
"It directly crosses the placenta," she said. "When mom drinks alcohol, the baby's blood alcohol level matches the mom's, but the mom has a mature elimination system. The baby stays 'drunk' longer and doesn't have the mature liver to process it out."
Since the alcohol stays with the fetus longer, there is more time for it to kill or alter brain cells. Fletcher said specialized cells can get rerouted and end up in the wrong part of the brain.
"The child has all the information up there sometimes, but can't access it," she said. "The brain is very vulnerable."
And this disorder doesn't just affect children.
"(People with FASD) can have trouble holding a job, have a hard time in school, and really struggle in our fast paced, abstract society," Fletcher said.
It wasn't until the 1970s that doctors identified fetal alcohol syndrome. The range of disorders on the spectrum - including partial fetal alcohol syndrome, alcohol-related neurodevelopmental disorder and fetal alcohol effects - weren't identified until later, when doctors noticed children with the behavioral and neurological effects of fetal alcohol syndrome, but without the facial features and small stature.
Fletcher pointed out that many people have recognized specific similarities in the children of alcohol-addicted mothers.
"It has been noted throughout history," she said.
"I don't believe any mom means to do this."
Because the symptoms of FASD tend to be invisible - and because of the stigma of a woman admitting to a doctor she drank during pregnancy - fetal alcohol spectrum disorders often are misdiagnosed.
Ben was first diagnosed with attention deficit hyperactivity disorder and autism, Fletcher said.
"The ADHD medications didn't work," she said. "With Ben it made him more aggressive."
Fletcher said that while the symptoms may seem similar between disorders, their underlying cause - and therefore how they are treated - is vastly different.
Ben was eventually diagnosed with alcohol related neurodevelopmental disorder.
Fletcher knew about his disability when he was adopted. She and her husband were Ben's foster parents. After adopting him, the family learned Ben's biological mother had another child needing a home, and the Fletchers adopted her too. Anna is 6 years old and suffers from a fetal alcohol spectrum disorder as well. The couple also have four biological children.
Despite the bleak circumstances fetal alcohol spectrum disorder children have to overcome, Fletcher stresses that this diagnosis is not a death sentence. The key is determining strategies for helping them find success.
"It's like this," she said. "I have a brain deficiency myself, and I don't know where it comes from, but I have a lack of direction. I can study a map all day and not know north. But I travel all over the state. I have to use a map drawn by my husband or Mapquest. I look at my kids and ask myself, 'What can I pull in to help them?' These kids are not lazy, willful or defiant."
For women who are pregnant and maybe had a drink before they knew it, or perhaps even after they did, Fletcher says not to panic.
"Different amounts affect different fetuses," she said. "Timing is a factor, as well as the baby's resiliency."
But if down the road the child has an attention problem, she says not to hesitate to find a doctor familiar with the disorder and have the child tested.
"Many women talk about the pregnancy police," Fletcher said. "'You can't do this, you can't do that,' but I say this isn't about what you can't do, it is about what you can do. This is a disability that you can 100 percent prevent. Wow, you have incredible power."
There are two free educational workshops to choose from during Fletcher's seminar on Thursday - one from 1-4:30 p.m., the other 6:30-9:15 p.m. Three continuing education credits are available with pre-registration and a $20 fee. The deadline for CEU registration is Wednesday. Call (507) 238-4382 to register.
Thursday, January 22, 2009
Article from MOFAS Day on the Hill
Rubén Rosario: Where's the Mother Hale for kids with fetal alcohol spectrum disorder?
By Rubén Rosario
Updated: 01/21/2009 11:24:28 PM CST
There used to be a figure in New York City affectionately nicknamed Mother Hale. She was a Harlem woman who set up a home to care for crack-addicted babies. Her largesse during the 1980s made national and international news.
The jarring video images of the infants she tended angered as well as melted hearts: wailing and squirming tiny bodies going through painful withdrawal in an incubator or crib. They indelibly put a hard-to-ignore face on the most vulnerable victims of a drug epidemic then sweeping that city, as well as other distressed inner-city neighborhoods throughout the nation.
It may be time for a Mother Hale of Minnesota — not for crack or meth but for fetal alcohol spectrum disorder, or FASD.
It will surely be a tough go. See, drinking alcohol is legal, unlike most other vices, whether you are pregnant or not. Our society largely looks the other way because of this. And there are no such disturbing baby images that make the prime-time news before the cute puppy story to balance things before we head off to sleep or Jay Leno.
It doesn't matter that prenatal alcohol exposure is lifelong and irreversible and causes far more permanent brain damage to fetuses than cocaine, heroin, marijuana or other drugs, according to studies over the past 20 years.
Basically, if you are pregnant, don't drink. Can't say it any simpler.
But try as we might, we cannot legislate away all self-destructive behavior or stupidity.
So, it was not surprising that not one local television camera was in sight Wednesday at a small public-awareness rally at the state Capitol. Oh, there would have been a "good shoot" had 833 school buses, as one speaker pointed out, shown up, crammed with the estimated 50,000 Minnesotans born with FASD.
The folks were forced to settle for one rumpled columnist who nearly skipped the event for something else. Glad he showed up. This is what he learned:
An estimated 8,500 babies are born each year in Minnesota with FASD. Each has a lifetime price tag — from special education, health care, criminal justice and other societal expenses — of an estimated $2.9 million cost to taxpayers.
58 percent of women ages 18 to 44 in Minnesota use alcohol (one or more drinks in the past 30 days).
17 percent of women ages 18 to 44 in Minnesota binge drink (four or more drinks on one occasion in the past 30 days).
This prenatal poison causes massive damage to the brain's frontal lobe, which governs impulse, decision making and considering the consequences of one's actions.
So it was no great surprise to learn that 60 percent of youths ages 12 to 21 with FASD ran afoul of the law and that slightly more than half are incarcerated. Another national study concluded that other such afflicted youths with what was described as "disrupted school experiences" were twice as likely to get into trouble with the law.
And this is what is known. A relatively small percentage of these kids are diagnosed with FASD only after they come in contact with the juvenile justice system. But locking up such afflicted kids seems to be the only and largely uninformed response from the corrections system.
"The juvenile justice system is not equipped to recognize, understand or effectively work with this population of kids," Wade Lennox, a juvenile probation officer in Kanabec County, informed a joint committee of House public safety policy and finance legislators Tuesday. He underlined that traditional methods of dealing with such offenders don't work because of systemwide ignorance about FASD.
TWO SHINING LIGHTS
The good news here is that I identified two potential Mother Hales.
One is Linda Walinski, a psychologist and registered nurse from Isanti and mother of adopted FASD kids.
"They don't understand cause and effect," Walinski told the legislators. She drew a parallel between physically disabled kids and those dealing with FASD.
"We don't expect them to walk, and we don't punish them for not walking," Walinski said. That is exactly what we do with those damaged by prenatal alcohol exposure, she noted. We dismiss and deal with them as "bad" kids.
The other is Kari Fletcher, 43, of Mankato, a mother of six, including two adopted kids with FASD.
Fletcher, who works as a southern regional representative for the Minnesota Organization on Fetal Alcohol Syndrome, is a walking textbook on the prenatal disorder. She introduced me to Ben, 11, and Anna, 6.
Both look like average kids. Fletcher and her husband were foster parents for 16 years before they brought Ben and Anna into their extended family.
"Ben has alcohol-related neurodevelopmental disorder," Fletcher said after Wednesday's event. "He has central nervous system and brain damage. ... If he gets frustrated at school, he will blow. He's learning a lot about his own disability and the way his brain works."
An 11-year-old trying to comprehend his brain-damaged lot in life. Digest that, please, for a moment.
Anna displays some notable features of FASD, "but she does not have the growth deficiency," Fletcher explained.
Fletcher painfully understands the lack of awareness, if not concern.
"It's a legal drug," she said of alcohol. "I hear it all the time: 'That's just for women who are alcoholics. They are the only ones who have kids like this.' "
A 2004 state study found that middle-class, college-educated pregnant women were the most ignorant about the dangers.
Why the compassion amid the frustrations? I ask Fletcher.
"My kids are more intense than others, but then so are the fun and the joy," Fletcher said. "I would not trade them for the world. I would do this (adopt) again in a heartbeat."
Mother Hales indeed.
Rubén Rosario can be reached at rrosario@pioneerpress.com or 651-228-5454.
ONLINE
To learn more about fetal alcohol spectrum disorder, go to mofas.org.
By Rubén Rosario
Updated: 01/21/2009 11:24:28 PM CST
There used to be a figure in New York City affectionately nicknamed Mother Hale. She was a Harlem woman who set up a home to care for crack-addicted babies. Her largesse during the 1980s made national and international news.
The jarring video images of the infants she tended angered as well as melted hearts: wailing and squirming tiny bodies going through painful withdrawal in an incubator or crib. They indelibly put a hard-to-ignore face on the most vulnerable victims of a drug epidemic then sweeping that city, as well as other distressed inner-city neighborhoods throughout the nation.
It may be time for a Mother Hale of Minnesota — not for crack or meth but for fetal alcohol spectrum disorder, or FASD.
It will surely be a tough go. See, drinking alcohol is legal, unlike most other vices, whether you are pregnant or not. Our society largely looks the other way because of this. And there are no such disturbing baby images that make the prime-time news before the cute puppy story to balance things before we head off to sleep or Jay Leno.
It doesn't matter that prenatal alcohol exposure is lifelong and irreversible and causes far more permanent brain damage to fetuses than cocaine, heroin, marijuana or other drugs, according to studies over the past 20 years.
Basically, if you are pregnant, don't drink. Can't say it any simpler.
But try as we might, we cannot legislate away all self-destructive behavior or stupidity.
So, it was not surprising that not one local television camera was in sight Wednesday at a small public-awareness rally at the state Capitol. Oh, there would have been a "good shoot" had 833 school buses, as one speaker pointed out, shown up, crammed with the estimated 50,000 Minnesotans born with FASD.
The folks were forced to settle for one rumpled columnist who nearly skipped the event for something else. Glad he showed up. This is what he learned:
An estimated 8,500 babies are born each year in Minnesota with FASD. Each has a lifetime price tag — from special education, health care, criminal justice and other societal expenses — of an estimated $2.9 million cost to taxpayers.
58 percent of women ages 18 to 44 in Minnesota use alcohol (one or more drinks in the past 30 days).
17 percent of women ages 18 to 44 in Minnesota binge drink (four or more drinks on one occasion in the past 30 days).
This prenatal poison causes massive damage to the brain's frontal lobe, which governs impulse, decision making and considering the consequences of one's actions.
So it was no great surprise to learn that 60 percent of youths ages 12 to 21 with FASD ran afoul of the law and that slightly more than half are incarcerated. Another national study concluded that other such afflicted youths with what was described as "disrupted school experiences" were twice as likely to get into trouble with the law.
And this is what is known. A relatively small percentage of these kids are diagnosed with FASD only after they come in contact with the juvenile justice system. But locking up such afflicted kids seems to be the only and largely uninformed response from the corrections system.
"The juvenile justice system is not equipped to recognize, understand or effectively work with this population of kids," Wade Lennox, a juvenile probation officer in Kanabec County, informed a joint committee of House public safety policy and finance legislators Tuesday. He underlined that traditional methods of dealing with such offenders don't work because of systemwide ignorance about FASD.
TWO SHINING LIGHTS
The good news here is that I identified two potential Mother Hales.
One is Linda Walinski, a psychologist and registered nurse from Isanti and mother of adopted FASD kids.
"They don't understand cause and effect," Walinski told the legislators. She drew a parallel between physically disabled kids and those dealing with FASD.
"We don't expect them to walk, and we don't punish them for not walking," Walinski said. That is exactly what we do with those damaged by prenatal alcohol exposure, she noted. We dismiss and deal with them as "bad" kids.
The other is Kari Fletcher, 43, of Mankato, a mother of six, including two adopted kids with FASD.
Fletcher, who works as a southern regional representative for the Minnesota Organization on Fetal Alcohol Syndrome, is a walking textbook on the prenatal disorder. She introduced me to Ben, 11, and Anna, 6.
Both look like average kids. Fletcher and her husband were foster parents for 16 years before they brought Ben and Anna into their extended family.
"Ben has alcohol-related neurodevelopmental disorder," Fletcher said after Wednesday's event. "He has central nervous system and brain damage. ... If he gets frustrated at school, he will blow. He's learning a lot about his own disability and the way his brain works."
An 11-year-old trying to comprehend his brain-damaged lot in life. Digest that, please, for a moment.
Anna displays some notable features of FASD, "but she does not have the growth deficiency," Fletcher explained.
Fletcher painfully understands the lack of awareness, if not concern.
"It's a legal drug," she said of alcohol. "I hear it all the time: 'That's just for women who are alcoholics. They are the only ones who have kids like this.' "
A 2004 state study found that middle-class, college-educated pregnant women were the most ignorant about the dangers.
Why the compassion amid the frustrations? I ask Fletcher.
"My kids are more intense than others, but then so are the fun and the joy," Fletcher said. "I would not trade them for the world. I would do this (adopt) again in a heartbeat."
Mother Hales indeed.
Rubén Rosario can be reached at rrosario@pioneerpress.com or 651-228-5454.
ONLINE
To learn more about fetal alcohol spectrum disorder, go to mofas.org.
Monday, December 22, 2008
Drinking can damage fetus' white matter
Article - Moms-to-be who drink may damage fetus' white matter
Moms-to-Be Who Drink May Damage Fetus' White Matter
Study says brain microstructural changes may lead to cognitive problems
Posted December 19, 2008
FRIDAY, Dec. 19 (HealthDay News) -- Drinking alcohol during pregnancy can damage white matter in a fetus' frontal and occipital lobes, which play a major role in executive function and visual processing. The finding may help explain problems seen in infants whose mothers drink during pregnancy, a new study says.
"The brain's white matter is made up of nerve bundles that transfer information between brain regions," study corresponding author Susanna L. Fryer, a researcher at San Diego State University's Center for Behavioral Teratology, said in a news release.
"Optimal white-matter integrity is thought to support efficient cognition. So, the finding that prenatal alcohol exposure is associated with altered white-matter integrity may help explain aspects of the cognitive and behavioral problems that individuals with fetal alcohol spectrum disorders (FASDs) commonly face," she said.
In this study, Fryer and her colleagues used a type of MRI called diffusion tensor imaging (DTI) to assess white-matter microstructure in the brains of 27 young people, ages 8 to 18. Of those participants, 15 were born to mothers who drank heavily during pregnancy.
"The brains of individuals with FASDs showed evidence of altered nerve fiber integrity at a microstructural level, even though total brain size was statistically equivalent between alcohol-exposed and comparison participants," Fryer said.
"Also, within the alcohol-exposed group, we generally found that white-matter microstructure did not differ based on whether youth met criteria for a diagnosis of fetal alcohol syndrome (FAS). In other words, similar brain alterations and behavioral problems can occur because of prenatal alcohol exposure, with or without the facial features and physical growth insufficiency required to diagnose FAS."
The study was published online Dec. 19 and in the March print issue of the journal Alcoholism: Clinical and Experimental Research.
Moms-to-Be Who Drink May Damage Fetus' White Matter
Study says brain microstructural changes may lead to cognitive problems
Posted December 19, 2008
FRIDAY, Dec. 19 (HealthDay News) -- Drinking alcohol during pregnancy can damage white matter in a fetus' frontal and occipital lobes, which play a major role in executive function and visual processing. The finding may help explain problems seen in infants whose mothers drink during pregnancy, a new study says.
"The brain's white matter is made up of nerve bundles that transfer information between brain regions," study corresponding author Susanna L. Fryer, a researcher at San Diego State University's Center for Behavioral Teratology, said in a news release.
"Optimal white-matter integrity is thought to support efficient cognition. So, the finding that prenatal alcohol exposure is associated with altered white-matter integrity may help explain aspects of the cognitive and behavioral problems that individuals with fetal alcohol spectrum disorders (FASDs) commonly face," she said.
In this study, Fryer and her colleagues used a type of MRI called diffusion tensor imaging (DTI) to assess white-matter microstructure in the brains of 27 young people, ages 8 to 18. Of those participants, 15 were born to mothers who drank heavily during pregnancy.
"The brains of individuals with FASDs showed evidence of altered nerve fiber integrity at a microstructural level, even though total brain size was statistically equivalent between alcohol-exposed and comparison participants," Fryer said.
"Also, within the alcohol-exposed group, we generally found that white-matter microstructure did not differ based on whether youth met criteria for a diagnosis of fetal alcohol syndrome (FAS). In other words, similar brain alterations and behavioral problems can occur because of prenatal alcohol exposure, with or without the facial features and physical growth insufficiency required to diagnose FAS."
The study was published online Dec. 19 and in the March print issue of the journal Alcoholism: Clinical and Experimental Research.
Monday, May 19, 2008
Susan Carlson- Minnesota's FASD Champion!
Susan Carlson: Retired -- or not
By ROCHELLE OLSON, Star Tribune
May 18, 2008
The 14-year-old boy came to Hennepin County District Court alone one recent morning because his mom had become ill in the car on the way and returned home, he told juvenile referee Susan Carlson.
"I'm glad you're here," she said warmly to the boy, in trouble for truancy. She arranged for him to be driven to a much-anticipated psychological evaluation.
The next truant teen came in with both of his divorced parents. His mom said her heart was breaking because she couldn't get through to her son.
After much discussion, Carlson gave the boy one last shot at attending school. "I won't see you again, so good luck. We want you to succeed," she told him. "Do it for me as a retirement present."
Carlson, wife of former Gov. Arne Carlson, has just retired from her post as a part-time referee, where she wore the black robe and performed most duties of a judge, to focus on what she believes is an underlying and undiagnosed problem for many troubled juveniles: fetal alcohol syndrome. "If a child has organic brain damage, we really need to factor that into what we're doing," she said.
Since she began in the courts in 1995 during her husband's second term, Carlson has seen scores of families and teens in pain and distress, but she found their court records lacking.
"The more I read, the more I thought, 'We are missing something here,'" Carlson said. "I was overwhelmed with the whole history of chemical dependency in the families."
Many of the troubled teens had family histories of alcohol abuse and had been exposed to the drug in the womb, causing brain damage, she said. Diagnosis and intervention -- the earlier the better -- can help many, she said.
Children can be screened based on facial characteristics and then tested.
Success story
Carlson has a success story. Early screening a few years ago led to the diagnosis of a young man who had been involved in some trouble, including domestic assault. "It was almost a sense of relief to him to understand why his brain wasn't working," she said.
The boy had earned zero credits in high school, but she sent him to a group home; he got a 90 percent on his graduation equivalency test and joined the Army.
Absent an accurate diagnosis and help, "he was headed to be part of the prison system," she said.
When she became a juvenile referee, Carlson started to see lots of children in trouble and stress. She'd come home from work and talk about what she had seen. "It drove Arne nuts," she said. "He'd say, 'Susan, what do you want me to do?'"
Carlson realized she was in a unique position to do something.
In 1998, she founded the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS). The statewide nonprofit aims to promote education and prevention regarding alcohol-related birth defects. The work stemmed from her research as the co-chair of the Action for Children Commission established by Gov. Carlson in 1991 to assess the life of children in Minnesota.
Hennepin County District Judge Kevin Burke appointed Susan Carlson, saying it was obvious she cared about children from their first meeting. "If you sit in those courts -- family or juvenile -- they are emotionally charged. It's pretty easy to get people mad at you," Burke said, but added that he never got complaints about Carlson, who conveyed dignity and caring from the bench. "Anybody who talks to her knows she has a calming influence and she's approachable."
At 58, she has reassessed her life. Last summer, her brother was diagnosed with a malignant, inoperable brain tumor. Doctors also found a tumor on Carlson's liver. Although her tumor was benign, she decided it was time for a new focus.
Her daughter is out of college and employed, her husband is 72 and left the governor's office in 1999. In addition to his corporate board and political commentary work, Gov. Carlson is a "wonderful house husband" who cleans and has dinner on the table when she gets home, his wife said.
Much needs to be done
While the couple intends to spend more time at their Florida waterfront property, Carlson also has plans for her fight against fetal alcohol syndrome.
She wants to develop a model for training judges about the syndrome and then travel the country to talk about why screening, diagnosis and treatment of fetal alcohol syndrome makes a difference. "It's like a disability," she said. "We learn how they learn and if they have sensory problems. ... You begin to understand why they do what they do."
In addition to working as a lawyer and lobbyist, Carlson began her career as a page in the Minnesota House of Representatives. She has the experience of having worked in all three branches of state government, experience she believes gives her a unique platform for fighting the syndrome.
She would like to build up a cadre of lawyers in Minnesota who are familiar with the syndrome and can help adopted and foster kids.
"Arne's going to read this and say, 'I thought you were going to retire,'" she said, adding, "There's so much that needs to be done."
Known for her warmth, intelligence and kindness, Carlson will be missed, those who worked with her say.
"She's really smart. Unlike a lot of lawyers and judges, her focus isn't on beating you over the head with how impressive she is," said U.S. District Judge Joan Ericksen. The two worked together in Hennepin County juvenile court.
Her work with fetal alcohol syndrome is particularly impressive because generally it's difficult to get money for preventive measures, "especially when you're telling people what to do," Ericksen said.
Jamie Smith, who now works in communications for Hennepin County, worked for Carlson as a clerk and admired her ability to balance family life and work while seizing on the fetal-alcohol issue. All the eye-catching signs on buses and public-service announcements are a result of her work, Smith notes.
"Now that she's retired, we're going to see some really great things happen," Smith said.
By ROCHELLE OLSON, Star Tribune
May 18, 2008
The 14-year-old boy came to Hennepin County District Court alone one recent morning because his mom had become ill in the car on the way and returned home, he told juvenile referee Susan Carlson.
"I'm glad you're here," she said warmly to the boy, in trouble for truancy. She arranged for him to be driven to a much-anticipated psychological evaluation.
The next truant teen came in with both of his divorced parents. His mom said her heart was breaking because she couldn't get through to her son.
After much discussion, Carlson gave the boy one last shot at attending school. "I won't see you again, so good luck. We want you to succeed," she told him. "Do it for me as a retirement present."
Carlson, wife of former Gov. Arne Carlson, has just retired from her post as a part-time referee, where she wore the black robe and performed most duties of a judge, to focus on what she believes is an underlying and undiagnosed problem for many troubled juveniles: fetal alcohol syndrome. "If a child has organic brain damage, we really need to factor that into what we're doing," she said.
Since she began in the courts in 1995 during her husband's second term, Carlson has seen scores of families and teens in pain and distress, but she found their court records lacking.
"The more I read, the more I thought, 'We are missing something here,'" Carlson said. "I was overwhelmed with the whole history of chemical dependency in the families."
Many of the troubled teens had family histories of alcohol abuse and had been exposed to the drug in the womb, causing brain damage, she said. Diagnosis and intervention -- the earlier the better -- can help many, she said.
Children can be screened based on facial characteristics and then tested.
Success story
Carlson has a success story. Early screening a few years ago led to the diagnosis of a young man who had been involved in some trouble, including domestic assault. "It was almost a sense of relief to him to understand why his brain wasn't working," she said.
The boy had earned zero credits in high school, but she sent him to a group home; he got a 90 percent on his graduation equivalency test and joined the Army.
Absent an accurate diagnosis and help, "he was headed to be part of the prison system," she said.
When she became a juvenile referee, Carlson started to see lots of children in trouble and stress. She'd come home from work and talk about what she had seen. "It drove Arne nuts," she said. "He'd say, 'Susan, what do you want me to do?'"
Carlson realized she was in a unique position to do something.
In 1998, she founded the Minnesota Organization on Fetal Alcohol Syndrome (MOFAS). The statewide nonprofit aims to promote education and prevention regarding alcohol-related birth defects. The work stemmed from her research as the co-chair of the Action for Children Commission established by Gov. Carlson in 1991 to assess the life of children in Minnesota.
Hennepin County District Judge Kevin Burke appointed Susan Carlson, saying it was obvious she cared about children from their first meeting. "If you sit in those courts -- family or juvenile -- they are emotionally charged. It's pretty easy to get people mad at you," Burke said, but added that he never got complaints about Carlson, who conveyed dignity and caring from the bench. "Anybody who talks to her knows she has a calming influence and she's approachable."
At 58, she has reassessed her life. Last summer, her brother was diagnosed with a malignant, inoperable brain tumor. Doctors also found a tumor on Carlson's liver. Although her tumor was benign, she decided it was time for a new focus.
Her daughter is out of college and employed, her husband is 72 and left the governor's office in 1999. In addition to his corporate board and political commentary work, Gov. Carlson is a "wonderful house husband" who cleans and has dinner on the table when she gets home, his wife said.
Much needs to be done
While the couple intends to spend more time at their Florida waterfront property, Carlson also has plans for her fight against fetal alcohol syndrome.
She wants to develop a model for training judges about the syndrome and then travel the country to talk about why screening, diagnosis and treatment of fetal alcohol syndrome makes a difference. "It's like a disability," she said. "We learn how they learn and if they have sensory problems. ... You begin to understand why they do what they do."
In addition to working as a lawyer and lobbyist, Carlson began her career as a page in the Minnesota House of Representatives. She has the experience of having worked in all three branches of state government, experience she believes gives her a unique platform for fighting the syndrome.
She would like to build up a cadre of lawyers in Minnesota who are familiar with the syndrome and can help adopted and foster kids.
"Arne's going to read this and say, 'I thought you were going to retire,'" she said, adding, "There's so much that needs to be done."
Known for her warmth, intelligence and kindness, Carlson will be missed, those who worked with her say.
"She's really smart. Unlike a lot of lawyers and judges, her focus isn't on beating you over the head with how impressive she is," said U.S. District Judge Joan Ericksen. The two worked together in Hennepin County juvenile court.
Her work with fetal alcohol syndrome is particularly impressive because generally it's difficult to get money for preventive measures, "especially when you're telling people what to do," Ericksen said.
Jamie Smith, who now works in communications for Hennepin County, worked for Carlson as a clerk and admired her ability to balance family life and work while seizing on the fetal-alcohol issue. All the eye-catching signs on buses and public-service announcements are a result of her work, Smith notes.
"Now that she's retired, we're going to see some really great things happen," Smith said.
Thursday, December 13, 2007
Prenatal exposure, later alcohol use
Pre-natal Alcohol Exposure Shapes Sensory Preference, Upping Odds Of Later Alcohol Use And Abuse
ScienceDaily (Dec. 13, 2007) — Young people whose mothers drank when pregnant may be more likely to abuse alcohol because, in the womb, their developing senses came to prefer its taste and smell. Researchers with the State University of New York Developmental Ethanol Research Center have found that because the developing nervous system adapts to whatever mothers eat and drink, young rats exposed to alcohol (ethanol) in the womb drank significantly more alcohol than non-exposed rats.
These findings, covered in two related studies, appear in the December issue of Behavioral Neuroscience. The studies contribute a critical biological piece to the complex puzzle of why teens with a family history of drinking may themselves drink more. Lead author Steven Youngentob, PhD, observes that a biologically instilled preference for alcohol's taste and smell can make young people much more likely to abuse alcohol, especially in light of social pressures, risk-taking tendencies and alcohol's addicting qualities.
These more subtle consequences of fetal alcohol exposure come on top of the potential for Fetal Alcohol Syndrome, which leads to profound neurodevelopmental problems including mental retardation.
In one study, infantile rats exposed to alcohol (ethanol) in the womb drank significantly more of it in youth but not in adulthood. They were the offspring of dams, or mother rats, from one of three experimental groups: ethanol-exposed via the mother's diet at levels simulating moderate to heavy drinking; pair-matched controls that ate the same amounts as ethanol exposed-dams to control for any effect of under-nutrition; and controls that ate freely.
The offspring were studied at Day 15 after birth, still infants, or Day 90 after birth, fully mature. Adult rats chose to drink ethanol or non-ethanol solutions, both from bottles. Rat pups were presented with ethanol solutions through tubes implanted in their cheeks; they could either swallow to accept, or reject it by shaking their heads, licking the chamber walls or floor, or letting it drip out.
The ethanol-exposed animals drank significantly more ethanol than both groups of control animals. The authors cite their finding as evidence for ethanol preference resulting from maternal use or abuse of ethanol during pregnancy.
The authors put forth the idea that when the developing nervous system senses ethanol in amniotic fluid, it adapts without awareness of which chemicals will help or hurt the organism. It could be alcohol; it could be carrot juice; the adaptation is the same. Given the former, the olfactory system of a developing fetus becomes attuned to ethanol's chemosensory attributes. It "likes" the taste and smell, two big factors in the flavor of alcohol. However, Youngentob further suggests that if the nervous system has no further experience with the drug by adulthood, ethanol loses its chemosensory allure.
The related study found strong evidence of the role of the olfactory system. As in the other study, the researchers exposed the rats to ethanol by giving it to pregnant mothers. Control mothers just ate chow, and the offspring were tested either at 15 or 90 days after birth.
When exposed to ethanol odor, the prenatally exposed young rats sniffed it significantly more than control rats. To heighten ethanol's sensory impact, the odor-responsive cells in their nasal passages also became tuned. This altered odor response predicted the sniffing response of the animals. Again, these effects faded by adulthood, the rat equivalent of 30 to 40 human years.
The authors wrote, "From a clinical perspective, an enhanced preference for ethanol odor may be an important contributor to the risk for an enhanced postnatal avidity for the drug." That finding addresses a central goal of the State University of New York Developmental Ethanol Research Center, where Youngentob and his colleagues aim to define the factors that contribute to the perpetuating cycle of abuse from fetal exposure to adult abuse and back again.
Given the concern about young people who may not even know that they are entering a high-risk period for alcohol abuse, Youngentob's message for prevention is clear: "Keep kids away from alcohol, especially those that had fetal exposure." There is particular concern about the alcohol industry marketing flavored alcoholic beverages to youth as fun drinks similar to soft drinks, given that for some potential drinkers, the strong positive preference for alcohol won't subside until well into adulthood.
"The even more basic message is that there is no time during pregnancy when it is safe to drink," adds Youngentob.
Articles: "The Effect of Gestational Ethanol Exposure on Voluntary Ethanol Intake in Early Postnatal and Adult Rats," and "Experience-Induced Fetal Plasticity: The Effect of Gestational Ethanol Exposure on the Behavioral and Neurophysiologic Olfactory Response to Ethanol Odor in Early Postnatal and Adult Rats," Steven L. Youngentob, PhD, SUNY Upstate Medical University and SUNY Developmental Research Center; Juan C. Molina, PhD, SUNY Upstate Medical University, Binghamton University, and SUNY Developmental Ethanol Research Center; Norman E. Spear, PhD, Binghamton University and SUNY Developmental Ethanol Research Center; and Lisa M. Youngentob, BS, SUNY Upstate Medical University and SUNY Developmental Ethanol Research Center; Behavioral Neuroscience, Vol 121, No. 6.
Adapted from materials provided by American Psychological Association.
ScienceDaily (Dec. 13, 2007) — Young people whose mothers drank when pregnant may be more likely to abuse alcohol because, in the womb, their developing senses came to prefer its taste and smell. Researchers with the State University of New York Developmental Ethanol Research Center have found that because the developing nervous system adapts to whatever mothers eat and drink, young rats exposed to alcohol (ethanol) in the womb drank significantly more alcohol than non-exposed rats.
These findings, covered in two related studies, appear in the December issue of Behavioral Neuroscience. The studies contribute a critical biological piece to the complex puzzle of why teens with a family history of drinking may themselves drink more. Lead author Steven Youngentob, PhD, observes that a biologically instilled preference for alcohol's taste and smell can make young people much more likely to abuse alcohol, especially in light of social pressures, risk-taking tendencies and alcohol's addicting qualities.
These more subtle consequences of fetal alcohol exposure come on top of the potential for Fetal Alcohol Syndrome, which leads to profound neurodevelopmental problems including mental retardation.
In one study, infantile rats exposed to alcohol (ethanol) in the womb drank significantly more of it in youth but not in adulthood. They were the offspring of dams, or mother rats, from one of three experimental groups: ethanol-exposed via the mother's diet at levels simulating moderate to heavy drinking; pair-matched controls that ate the same amounts as ethanol exposed-dams to control for any effect of under-nutrition; and controls that ate freely.
The offspring were studied at Day 15 after birth, still infants, or Day 90 after birth, fully mature. Adult rats chose to drink ethanol or non-ethanol solutions, both from bottles. Rat pups were presented with ethanol solutions through tubes implanted in their cheeks; they could either swallow to accept, or reject it by shaking their heads, licking the chamber walls or floor, or letting it drip out.
The ethanol-exposed animals drank significantly more ethanol than both groups of control animals. The authors cite their finding as evidence for ethanol preference resulting from maternal use or abuse of ethanol during pregnancy.
The authors put forth the idea that when the developing nervous system senses ethanol in amniotic fluid, it adapts without awareness of which chemicals will help or hurt the organism. It could be alcohol; it could be carrot juice; the adaptation is the same. Given the former, the olfactory system of a developing fetus becomes attuned to ethanol's chemosensory attributes. It "likes" the taste and smell, two big factors in the flavor of alcohol. However, Youngentob further suggests that if the nervous system has no further experience with the drug by adulthood, ethanol loses its chemosensory allure.
The related study found strong evidence of the role of the olfactory system. As in the other study, the researchers exposed the rats to ethanol by giving it to pregnant mothers. Control mothers just ate chow, and the offspring were tested either at 15 or 90 days after birth.
When exposed to ethanol odor, the prenatally exposed young rats sniffed it significantly more than control rats. To heighten ethanol's sensory impact, the odor-responsive cells in their nasal passages also became tuned. This altered odor response predicted the sniffing response of the animals. Again, these effects faded by adulthood, the rat equivalent of 30 to 40 human years.
The authors wrote, "From a clinical perspective, an enhanced preference for ethanol odor may be an important contributor to the risk for an enhanced postnatal avidity for the drug." That finding addresses a central goal of the State University of New York Developmental Ethanol Research Center, where Youngentob and his colleagues aim to define the factors that contribute to the perpetuating cycle of abuse from fetal exposure to adult abuse and back again.
Given the concern about young people who may not even know that they are entering a high-risk period for alcohol abuse, Youngentob's message for prevention is clear: "Keep kids away from alcohol, especially those that had fetal exposure." There is particular concern about the alcohol industry marketing flavored alcoholic beverages to youth as fun drinks similar to soft drinks, given that for some potential drinkers, the strong positive preference for alcohol won't subside until well into adulthood.
"The even more basic message is that there is no time during pregnancy when it is safe to drink," adds Youngentob.
Articles: "The Effect of Gestational Ethanol Exposure on Voluntary Ethanol Intake in Early Postnatal and Adult Rats," and "Experience-Induced Fetal Plasticity: The Effect of Gestational Ethanol Exposure on the Behavioral and Neurophysiologic Olfactory Response to Ethanol Odor in Early Postnatal and Adult Rats," Steven L. Youngentob, PhD, SUNY Upstate Medical University and SUNY Developmental Research Center; Juan C. Molina, PhD, SUNY Upstate Medical University, Binghamton University, and SUNY Developmental Ethanol Research Center; Norman E. Spear, PhD, Binghamton University and SUNY Developmental Ethanol Research Center; and Lisa M. Youngentob, BS, SUNY Upstate Medical University and SUNY Developmental Ethanol Research Center; Behavioral Neuroscience, Vol 121, No. 6.
Adapted from materials provided by American Psychological Association.
