Tuesday, March 09, 2010
FASD and the Law article
FASD and the law
Lynn Taylor Rick Journal staff
Posted: Thursday, January 28, 2010 4:25 pm
Rapid City attorney Robert Van Norman knows a lot about how the law intersects with fetal alcohol spectrum disorders.
As a former public defender, Van Norman said a many of his public defense clients suffer from the fetal alcohol disorders. His recollection isn't surprising, considering that an estimated 35 percent of people with the disorders have been in jail or prison at some point, according to the U.S. Department of Health and Human Services.
People with fetal alcohol syndrome disorders can suffer from a range of symptoms that may put them at odds with the law, including poor impulse control and difficulty understanding cause and affect. Lawyers also argue that they can be highly suggestible and unable to give reliable testimony.
Even though Van Norman said he often realized his clients had the underlying brain damage from fetal alcohol exposure, he could do little to help them using that defense. Currently, FASD isn't officially listed in the Diagnostic and Statistical Manual, a guideline written by the American Psychiatric Association that covers all accepted mental health disorders. Without it, lawyers and judges can do little to ensure that justice is served to FASD people, Van Norman said.
"These young people will never fit into the system as it is," he said. "This is ... one of the only times we punish people for a congenital condition."
Van Norman said those within the mental health field are the ones who can lobby the American Psychiatric Association to add the condition to the Diagnostic and Statistical Manual, often called simply the DSM.
FASD has already been studied more than many of the conditions already listed, he said. For the criminal justice system to fairly treat those with FASD, it needs to finally become official.
"You folks are the ones who have to succeed here," he said.
Saturday, January 30, 2010
Motor skills activities hold promise
Motor-skill activities hold promise of rewiring children's damaged brains
From Saturday's Globe and Mail Published on Friday, Jan. 29, 2010 10:05PM EST
Last updated on Saturday, Jan. 30, 2010 3:43AM EST
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.
No one expects it will be so easy in humans.
“The rat brain doesn't have the same complexities,” says Dr. Christie, a member of B.C's Brain Research Centre.
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.
Other researchers are studying drugs that improve cognitive function in laboratory animals. In the lab, these drugs help animals remember how to negotiate a maze.
These kinds of drugs will probably become part of future treatments for alcohol-affected children, says Piyadasa Kodituwakku, an expert in FASD at the University of New Mexico.
But he cautions not to expect too much. A reasonable goal, he says, is to reduce or eliminate some of the problems that can come with FASD, including dropping out, drug and alcohol abuse, troubles with the law or mental illness.
Sterling Clarren, a UBC researcher who is CEO of the Canada Northwest FASD Research Network, says an ambitious project, recently funded by the federal government, should yield important new information about the brains of people with FASD.
NeuroDevNet, a new national centre of excellence, will get $19.5-million over five years and will focus on FASD and two other disorders. Researchers will combine brain imaging and genetic studies to explore what goes wrong in brain development, and perhaps, how it can be fixed.
Few people understand the challenges of FASD better than Jan Lutke. She and her husband, who died two years ago, adopted 15 children with the diagnosis. They are now adults – the oldest is 46 – and seven still live with her in Surrey, B.C., because they can't cope on their own.
The range of difficulties is astronomical, she says, and no two people have the same constellation of symptoms. One of her daughters enjoys reading Shakespeare but can't tell time or make change from a dollar. Some people with FASD don't feel pain. Others are hypersensitive to it. But they do have many common problems, including difficulties with abstract thinking and memory.
One daughter had been setting the table for a long time, but one night she couldn't remember what to do with the knives. As adults, they need programs tailored to their handicap, she says, and support so they don't end up on the streets or in jail.
She says she doesn't delude herself that there will be a quick fix or miracle therapy for people with FASD. But she can't help hoping that the work, now in its early stages, will lead to progress.
“I would like to think that if the best minds could put themselves together with a lot of money, and real energy to do it, I believe we can find things that work.”
Thursday, September 10, 2009
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
Saturday, January 31, 2009
Fairmont Sentinel Article
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
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 email@example.com or 651-228-5454.
To learn more about fetal alcohol spectrum disorder, go to mofas.org.
Monday, December 22, 2008
Drinking can 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.