FASD, Now What?

FASD and the Law article

2010-03-09T04:07:00.000-08:00

From the Rapid City Journal-

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.

Motor skills activities hold promise

2010-01-30T07:24:00.000-08:00

From this article-

Motor-skill activities hold promise of rewiring children's damaged brains

Anne McIlroy

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.”

FASDay article

2009-09-10T11:44:00.000-07:00

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.

Video

2009-07-29T16:11:00.000-07:00

A good video about FASD from the NIAAA -

Fairmont Sentinel Article

2009-01-31T07:02:00.000-08:00

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.

Article from MOFAS Day on the Hill

2009-01-22T03:33:00.000-08:00

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.

Drinking can damage fetus' white matter

2008-12-22T04:50:00.001-08:00

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.

Susan Carlson- Minnesota's FASD Champion!

2008-05-19T06:20:00.000-07:00

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.

Prenatal exposure, later alcohol use

2007-12-13T06:01:00.000-08:00

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.

Portrait of a Determined Family

2007-10-01T05:56:00.000-07:00

An article from a Canadian newspaper about FASD

FAS: Portrait of a determined family

By Kelly McManus
Sep 30 2007
It was a spring day in Vancouver, 1979, when Jack and Helen adopted their second child – Kayla.

Helen was heading for the door, about to leave child services with her new 10-day-old baby in her arms, when a social worker stopped her.

“By the way,” the woman said casually. “We think the baby’s parents were drug users.”

Helen had no way of knowing the future then – of knowing how much love she’d need to give, and how hard she’d have to work to be loved in return.

Kayla’s birth mother was a prostitute. Her birth father was in jail. They both used drugs and probably alcohol. That’s all the social workers knew.

At the time, Fetal Alcohol Syndrome (FAS) was a condition the medical community was just beginning to understand.

Kayla had it. She still has it.

While Kayla was in the womb, her birth mother exposed her to alcohol, and as a result, Kayla suffered a severe brain injury – for life.

She was a nervous child. She had speech problems. She was very small. But save for a few episodes – tantrums, moodiness and some shoplifting – it seemed to Helen her child was relatively normal.

Then came puberty, and crisis.

Kayla became more volatile and emotional. The pre-teen hit Helen, giving her a black eye on one occasion. She punched holes in walls. She disappeared for days at a time, and then came back to smash the windows.

Helen and Jack were devastated, confused and exhausted.

In 1991, Jack and Helen made the agonizing decision to put 12-year-old Kayla into home care in Surrey, where Kayla had a caregiver assigned to her 24 hours a day.

It was one of the lowest points in Helen’s life. Most of her family, like her mother-in-law, didn’t understand. They thought Kayla was just a bad kid. Some of them wondered why Jack and Helen wouldn’t just give her up to government services.

But it seemed things might turn out OK – until, at 15, Kayla dropped out of school and hit the street. Over the next 10 years, she used drugs – speed, cocaine and who knows what else – and dated a series of abusive boyfriends.

With three different fathers, Kayla had three children: Tricia, Tammy and Ethan. Between drug use and her abusive partners, she wasn’t in any state to take care of babies.

Five years ago, Jack and Helen won custody of the two girls in a provincial court.

Jack had a breakdown, leaving work for months. Late-night visits from the RCMP, strange men coming through the windows for Kayla (who had moved back home for a period of time), the distress of their grandchildren – the stress took its toll on him. Helen too, plunged into despair again. Their families still couldn’t understand why Kayla was unable to pull it together.

And then, when things could hardly be any worse, a fresh nightmare emerged.

Kayla had been drinking during her pregnancy, and the two oldest children – Tricia, 7, and Tammy, 5 – were diagnosed with Fetal Alcohol Spectrum Disorder (FASD). It was a new generation of tantrums, speech problems, aches and irritations and learning challenges.

Now, in the years when most people retire, maybe travel, live the good life, Helen and Jack must care for two more high-needs children with FASD.

And there’s still the uncertain fate of Kayla’s youngest son, Ethan, who lives with Kayla.
Kayla is better these days, living with a stable partner, focusing on being a good mom to her son.

But will Ethan have FASD too? At two years old, it’s still too early to know.

Given what they face, how do Jack and Helen get out of bed in the morning?

For Tricia and Tammy, of course.

Today, five-year-old Tammy is spending the afternoon in Surrey with her mom, who watches the girls on occasion. Tricia sits in the armchair at her grandparent’s apartment.

“Oma. Oooh-ma,” Tricia calls, the light, tinkling range of her child’s voice carrying also the overtones of a booming personality.

“Oooooooooooooh-maaaaaaw!” she calls again. “Come watch TV with me.”

When Helen (Oma) comes to the living room, Tricia decides she’s done watching TV.

Tricia smiles, the gapped, gummy grin of a seven-year-old. She lost those teeth five years ago. Her mother gave her jam-covered soothers as a baby, and at two and a half, she needed extensive dental surgery to cap and remove her rotted teeth.

Tricia is still waiting for her adult teeth to grow in. The dental work, coupled with her FASD, has made speech difficult, but after years of intensive speech therapy, she speaks with a only slight lisp.

“Oma, I want to play Lite Brite.”

“Go get your Lite Brite then.”

Little Tricia is up and out of the room. She’s tiny, sprightly. Small bodies can be a characteristic of FAS and FASD.

She’s quickly back with her toy. Dumping the coloured bulbs on the table, she inspects a few before choosing an orange one. She plugs the bulb into the screen, looks at it for a second and announces, “I want to take pictures.”

“No, Tricia,” says Helen. “You shouldn’t use your Opa’s camera. You’ll ruin the film again.”

Tricia clearly doesn’t like that response, but Helen sits very still with her hands on her lap.
There’s something almost Zen-like about the look in Helen’s bright blue eyes. She looks to Tricia with unmistakable tenderness, but there’s a visible shift: the woman has anchored quietly to some deep, private point inside.

There is a brief stare-down. Or more of a sizing up. Tricia seems to be weighing her options.
When she gets no reaction from Oma, she storms out of the room.

“I want to!” she bellows. After a moment, the contents of a closet somewhere in the apartment start to crash to the floor.

Helen shrugs.

“Oma, I want to!” Tricia’s still yelling.

“No, Tricia,” calls Helen patiently.

Tricia is back with her Opa’s camera and a photo shoot begins. Helen could intervene, but it seems she’s decided to pick her battles.

Tricia is an energetic child – curious, expressive, full of laughter. She arranges her Oma on the couch, snapping pictures like a pro. She turns the camera on herself, blasting her right eye over and over with the flash.

Each time Tricia pauses, a little dazed, and laughs, “That was bright!”

She doles out hugs in mid-sentence and then darts off to her next task.

“That’s Tricia,” smiles Helen. “Always busy, busy, busy. And sweet. Her teachers all just adore her.”

The little girl has gone to fetch her Timmy the Tooth and Madeline videos, but when she enters the room again, it’s with an armful of popsicles instead. She distributes the treats.

Two bites into the popsicle, Tricia eyes an item that came with today’s guest – a voice recorder. An impromptu recording session ensues.

She holds the little device to her mouth and singsongs: “Hello Oma, I love you and everything is good! I watch Timmy the Tooth and Madeline every day. My favorite is, ah, I don’t know.”

She’s off again, flitting through the living room and kitchen like a dragonfly. Never resting, only hovering, until she jerks away down the hall and slams her bedroom door.

Tricia needs a “time out.”

Tricia has become overwhelmed by her visitors. The little girl is learning how to take herself out of the action when she gets excited and over-stimulated. Children with FAS and FASD often have trouble “self-regulating,” or winding down.

Tricia can be a bit stormy and unfocused, but what seven-year-old isn’t? The big question is what will life be like when she’s older – for herself and for her sister. What will that mean for Helen and Jack as they enter their twilight years?

Will Tricia and Tammy plunge into 15 years of anger and reckless behavior like her mother? Will they “plateau” in school while their cohorts move on? Will they be able to hold jobs? Will their need to fit in with peers make them susceptible to sexual abuse or exploitation? Will they lash out at their Oma and Opa?

Helen hopes the answer to all of those questions is no.

Nothing can repair the damage done to Tricia’s or Tammy’s brain, but with enough support, Jack, Helen, the girls’ teachers and social workers can work together, helping the girls become more successful and more fulfilled than previous generations of FAS and FASD sufferers.

However, if things do go badly, Helen has made her peace.

At least she’ll be ready for it this time.

Tricia is back from her room. She pokes her small face around the armchair.
“Oma?” she says.

“Yes, Tricia?”

Tricia flits up to her Oma’s lap, buries her face in a comforting shoulder and says quietly, “I love you, Oma.”

“I love you too, Tricia,” smiles Helen, as she strokes her granddaughter’s hair.

kmcmanus@surreyleader.com
* * * *
[Editor’s note: Under the condition of anonymity, Helen and Jack spoke frankly about their family story to raise awareness about FAS and FASD.
Caused by prenatal exposure to alcohol, the brain injury is 100 per cent preventable. And it lasts for life – which is why Helen and Jack chose to protect the identities of their grandchildren.
Kayla did not speak toThe Leader about her experiences. According to Helen, Kayla does not acknowledge that she suffers from FAS. Helen and Kayla have a tentative relationship today, as Kayla finds it difficult to talk about the years when Helen and Jack took custody of her children. However, Helen and Kayla are working to help Kayla spend more time with her three children in a safe, healthy environment.]
* * * *
What is FAS and FASD?

Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Spectrum Disorder (FASD) refer to irreversible brain injuries caused by prenatal exposure to alcohol.

“The brain cells are gone. You don’t get them back. It’s like a black hole,” explains Karen Janzen, a key worker with the Centre for Childhood Development.

You don’t have to be an alcoholic to have a baby with FASD symptoms. There is no safe amount of alcohol a woman can consume when pregnant.”

People with FAS and FASD often:

- Have difficulty concentrating in school;

- Have trouble with generalizations or abstract reasoning;

- Can be prone to “confabulation” or lying due to poor memory skills;

- Have smaller bodies;

- Are hyper- or hypo-sensitive, either numb to pain or extra sensitive to things like lights, clothing tags or seams;

- Become very emotional, frustrated or violent, without the ability to “self-regulate,” so a temper tantrum or fit can last for hours;

- Have trouble understanding the concepts of ownership and personal space boundaries.

“Can you imagine if you couldn’t learn from your mistakes?” asks Janzen. “That’s the case with FASD. People confuse the behaviours of these kids for wilfull disobedience or poor parenting. We really need to debunk those myths.”

Doctors, therapists and parents have learned people suffering from FAS and FASD need flexible, supportive environments that accommodate their challenges.

Fast facts about FASD:
- 95 per cent of children with FAS or FASD drop out of school by the age 15;

- About 30 per cent of young offenders suffer from brain damage caused by prenatal exposure to alcohol;

- In B.C. approximately 140 babies are born with prenatal exposure to alcohol every year – and in Canada, that number is approximately 3,000 babies;

- FAS and FASD are 100 per cent preventable.

How to cope?

Jack and Helen have a growing network of social services at their disposal, such as the team of experts at the Asante Centre in Maple Ridge that just diagnosed their granddaughter Tammy with FAS, Oppositional Defiant Disorder and Attention Deficit Disorder.

It’s a daunting laundry list of conditions, but Helen coordinates with a caseworker from The Centre for Childhood Development in Surrey to access the resources available to families of kids with FASD – psychologists, doctors, speech and physiotherapists and other experts.

Helen has gone back to school to finish her Grade 12 and take courses in social work. She’s started local support groups for families dealing with FAS and FASD and for grandparents in situations like she and Jack.
* * * *

I was jailing profoundly disabled kids

2007-08-01T05:07:00.000-07:00

I was jailing profoundly disabled kids: judge on FASD cases
Jul. 31, 2007
Provided by: Canadian PressWritten by: DIRK MEISSNER

VICTORIA (CP) - Early in her career as a judge in Saskatchewan provincial court, Mary Ellen Turpel-Lafond was distressed to realize that many of the young offenders who appeared before her were disabled and didn't understand the consequences of their actions, let alone why they were in court.

They were kids with fetal alcohol spectrum disorders, brain damaged because their mothers drank during pregnancy.

"They don't even know what a judge is," Turpel-Lafond said in an interview. "How can they be guilty?"

"They don't know if you're the friend, the judge or why they're here," she said. "They can't read. They can't write. These are some very profoundly impaired children."

Turpel-Lafond, who took a five-year leave from the bench earlier this year to work in British Columbia as the province's children's representative, said FASD doesn't get nearly enough attention, despite being a leading cause of mental impairment of Canadian children.

"It was very difficult for me," she said.

"To be a judge, I felt more like a jailer. I felt fundamentally like I was jailing these profoundly disabled kids where society had in many ways failed these kids."

In Saskatoon, she helped pioneer a FASD prevalence project that examined 300 young people in trouble with the law. After what Turpel-Lafond described as a conservative analysis - researchers had to get mothers to confirm that they had consumed alcohol while pregnant - 85 per cent of the 300 were diagnosed with FASD.

Many of these children had never been diagnosed prior to the Saskatoon study, she said. Another smaller study found that up to 40 per cent of the young people in Saskatoon's youth jail were likely to have FASD.

"I felt very uncomfortable morally as a judge that I was using the harsh penal machinery of a jail on a disabled child," she said. "I tried not to send them to jail. I tried to say, 'Is there someone who can take them? Can we find some family? Can we get some health-care people?' I really pushed to try and have a more wrap-around approach."

It was the case of a 12-year-old Saskatoon girl who was facing multiple arson charges that caused Turpel-Lafond to have what she described as an "Aha!" moment in the courtroom.

"There's something not right about this child," she said she realized.

The girl was 12, but about the size of a six-year-old. She wanted to plead guilty to setting a number of fires in dumpsters in a Saskatoon neighbourhood.

No one was hurt in any of those fires, but on another occasion she broke into a flophouse where her estranged father was living and lit a fire. Sometimes she would meet the fire trucks and guide them to the fires she'd set.

"She'd light the fire just to see the fire trucks come. It was exciting," said Turpel-Lafond. "She was without any concept that someone could be hurt. She didn't have the cause and effect that you light a fire, you get hurt. She just couldn't get that. It was part of the impairment that she experienced."

What confounded her about the girl in court was that she had been diagnosed with fetal alcohol syndrome as an infant, but nothing had been done to help her.

"Here she was 12 and had never been in treatment or support or care," said Turpel-Lafond. "It really caused me to fundamentally ask some questions."

In another case, a 15-year-old boy from northern Saskatchewan tried to rob a Saskatoon police officer for a cigarette, Turpel-Lafond said. He was charged with attempted robbery.

She even presided over cases where mothers and their daughters, both diagnosed with FASD, were in court on separate charges.

Turpel-Lafond, 44, is a member of the Muskeg Lake Cree Nation in Saskatchewan. She is a lawyer and was chosen by Time magazine in 1999 as one of the Top 20 Canadian Leaders for the 21st Century. In 1994, Time also chose her as one of 100 global leaders. In 1998, she became the first aboriginal woman named to the Saskatchewan bench.

But Turpel-Lafond herself grew up poor, with domestic violence, abuse and alcoholism in her home.

She said she decided early in her life she wasn't going to let anything prevent her from realizing her dreams.

Turpel-Lafond said she decided to come to British Columbia to work with children because the Liberal government admitted it had experienced system failures in child protection. A report more than two years ago by a former judge concluded government budget cuts and constant upheaval in the Children and Family Development Ministry had stretched B.C.'s child protection system to the breaking point.

"They are minors lifelong"

2007-06-02T03:05:00.000-07:00

An article on guardianship for young adults with FASD

Parents eye safeguards for children in need
Legislators pass bill to offer guardianship when kids with fetal alcohol disorders become adults

By Bonnie Miller Rubin
Tribune staff reporter
Published June 1, 2007
Janis Groner's daughter is only 13, but Groner already worries about what will happen five years from now, when her child is no longer a minor.

For any parent, the transition of a child to adulthood is frightening, but Groner's daughter has fetal alcohol syndrome, and though she may not show obvious signs of a disability, she has cognitive deficits with potentially lifelong implications.

"We've worked so hard to teach her skills and to keep her safe," said the Wheaton mother, who adopted her daughter from the state when the girl was 10 months old. "I'd sure hate to see all those efforts go down the drain."

That's why Groner and other parents of kids with fetal alcohol syndrome and related disorders are drumming up support for state legislation that would give them the same opportunity for guardianship as parents of children with cerebral palsy, autism and other developmental disabilities.

Currently, when adolescents with fetal alcohol disorders turn 18, they are subject to the same laws as any other young adult. Experts say that's unreasonable for a population that operates, on average, at a level two-thirds of its chronological age, or roughly the level of a 12-year-old at age 18.

"Children who have been affected by exposure to alcohol during pregnancy ... don't see that their actions have consequences," said Dr. Ira Chasnoff, a pediatrician at the Children's Research Triangle in Chicago, which evaluates and treats special-needs children. "They often don't look different than other children and usually have normal IQs, so schools, parents and others have unrealistic expectations, which only sets the children up for failure."

Both the House and Senate have passed the legislation. If the bill is signed into law, it would be the first amendment to this section of the state's probate law since 1979.

The bill's chief sponsor, state Sen. Don Harmon (D-Oak Park), became interested in the issue after hearing heartbreaking stories from parents whose children were approaching or had passed this milestone birthday.

"This is not a marquee disease or condition," Harmon said. "It exists in the shadows and seems to have a much broader impact than I realized."

Some 40,000 children are born in the U.S. each year with fetal alcohol spectrum disorders, or FASD, more than spina bifida, Down syndrome and muscular dystrophy combined. The disorders disproportionately affect adopted children, particularly those from Russia and Eastern European nations where alcoholism is rampant, experts say. International adoptions started growing in record numbers in the late 1980s, and those children are nearing adulthood.

Brain can be affected

Fetal alcohol disorders occur when alcohol drunk by a pregnant woman passes through the placenta to the fetus. Prenatal exposure to alcohol can affect the part of the brain that controls decision-making and the ability to see cause and effect, putting youths at risk for a wide array of poor outcomes.

A 1996 study by the University of Washington found that among adults with alcohol-related neurological disorders, 50 percent had employment issues, 60 percent had trouble with the law, and only 18 percent were able to live independently.

With the right support from family, clinicians, therapeutic schools, medicine and mentors, many children with FASD do well. But once they turn 18, they can refuse such assistance.

The Illinois bill would offer parents the option of guardianship, a legal term giving a person authority to care for the personal and financial interests of another person, called a ward, if a judge determines that person cannot make sound decisions.

Guardianship would allow parents to help manage the health and finances of their adult child -- to step in, for example, if the child runs up credit card debt or falls for an Internet scam. There is no time limit on guardianship, and severing the guardian's authority requires a court hearing.

"You have the stability of being in a continuing parent-child relationship, even though the individual has reached the age of majority," said Brooke Whitted, a Northbrook-based attorney. The arrangement cannot keep someone from signing himself out of a hospital, Whitted said. The guardian cannot be held personally liable for the ward's debts or actions.

'They are minors lifelong'

Bonnie Buxton understands the bumpy transition period well. Her oldest daughter, adopted as a toddler and now 27, lived on the streets of Toronto for a while and had two children by the time she was 19. Though her daughter is now starting junior college, Buxton knows the need for supervision is not going away.

"They are minors lifelong," said Buxton, who wrote about her experiences in a book titled "Damaged Angels."

As an advocate, Buxton said she fields at least two calls a week from parents of young adults who are shocked to find they have no say when their children encounter financial or legal difficulties.

"These kids end up at the wrong place at the wrong time with the wrong people, and parents have no control," she said. "Once they hit that magic 18, to the court system they are just another loser."

With the help of a classroom aide, Groner's daughter is on the 7th-grade honor roll. But if the bill does not pass, Groner said she will eventually be shut out of the process of helping her daughter succeed.

"That just doesn't make any sense," Groner said. "We need to close this loophole, so we can protect the past and invest in the future."

Article from Alaska

2007-01-31T06:05:00.000-08:00

From the Anchorage Daily News
Fetal alcohol syndrome a big problem in Alaska
The Associated Press
Published: January 29, 2007

JUNEAU, Alaska (AP) - Laura and Larry Rorem remember the day their son was humiliated by his own teacher.

Unaware that he had fetal alcohol spectrum disorder, the teacher pinned his class work to his shirt, marked it with a large red "F" and made him wear it around school.

The Rorems were among the 250 people who gathered in Juneau last week to discuss the disorder.

"If you don't know how to deal with FASD, it can bring out the worst in you," said Larry Rorem.

Alaska has one of the highest fetal alcohol spectrum disorder rates in the country, according to the Alaska Department of Health and Social Services. Recent studies show 140 children in 10,000 are born with FASD in Alaska. More than 16 in 10,000 are born in Alaska with Fetal Alcohol Syndrome, the more serious of the disorders.

The disorder is caused by drinking alcohol during pregnancy. Fetuses cannot process alcohol and it stunts the developing nervous system.

In Alaska, many of the mothers are alcoholics and come from poor families of Native origin, said Dr. George Brown of Glacier Pediatrics in Juneau.

"Once it happens, it cannot be reversed," Brown said. "Not drinking during pregnancy is the only way to prevent it."

FASD brains are smaller than normal brains. The neurons aren't completely developed, the lobes are sometimes unconnected and the brain may even be covered with holes.

The severity of birth defects range from a slight reduction in a person's IQ level to heart problems, severe mental retardation and facial deformities.

Other defects include comprehension and memory problems, behavioral problems, problems interpreting other people and loss of impulse control.

Alcohol-related birth disorders are totally preventable, however, mothers of children with FASD should not be blamed, disorder experts say.

"A large portion of the women who drank didn't know they were pregnant," said Ric Iannolino of the Juneau FASD Diagnostic Clinic.

Some of the worst effects of FASD, including Fetal Alcohol Syndrome, happen between the 18th and 24th day of pregnancy.

Iannolino said some sufferers of FASD learn to adapt, while others never gain independence. Some become homeless and others wind up in prison.

A few glasses of wine....

2006-10-02T08:05:00.000-07:00

The following is from this article

2 October 2006
EXCLUSIVE: A FEW GLASSES OF WINE DURING PREGNANCY HAS WRECKED MY SON'S LIFE
A MOTHER'S AGONY AS DRINK LEAVES HER CHILD SEVERELY DISABLED..THE BEST REAL LIFE STORIES
By Antonia Hoyle

JACKIE Steele is kicked, bitten and head-butted by her three-year-old son on a daily basis. Once she needed stitches after he hit her with a hammer. But she never complains, as she feels she is to blame for Kyle's behaviour.

Her little boy suffers from Foetal Alcohol Syndrome (FAS). He is one of 6,000 children born every year with physical and mental problems because their mothers drank while they were pregnant.

For the rest of his life, Kyle will be severely disabled. And Jackie has to live with the knowledge that she is responsible.

"I love my son and I'll have to take to the grave what I've done to him," says the 39-year-old single mum.

"Every time I look at him I have to deal with the guilt that I've caused his problems, that I'm to blame."

Shocking research out today reveals that 61 per cent of British women drink alcohol while expecting. And with binge-drinking on the rise, doctors are also predicting an explosion in the number of children born with FAS.

Yet a survey for Tonight With Trevor McDonald shows that 56 per cent of pregnant women are not warned about FAS by their doctor.

And government guidelines suggest that up to four units of alcohol a week poses little risk to unborn babies.

When she was carrying Kyle, Jackie says she had at the most two glasses of wine every other day. She was unaware that with today's bigger measures this could have constituted up to six units, which is considered a "binge".

"I never drank to excess and my GP said that up to four units a week was fine," says Jackie, from Newton Abbey in Co Antrim. "No one warned me it was dangerous.

"Now I'd say don't do it. OK, you could drink a bottle of wine and have a healthy baby. But some women can have just the odd glass and have a baby like mine. That woman could be you."

Jackie drank through her previous pregnancies and her elder sons - Steven, now 21, Paul, 18, and Ryan, 15 - are all perfectly healthy.

"I'd have the odd glass when I was out with friends and on special occasions," she says. "I'd been advised that, in moderation, it was fine to drink.

"I have a sensible attitude to alcohol. The most I ever had even when I wasn't pregnant was five glasses."

So when she learned she was expecting Kyle in 2002 she carried on as before. But eight weeks into the pregnancy she began to get headaches and dizzy spells. Her midwife said she had high blood pressure and advised her to give up her job and rest in bed.

"I was used to being on my feet all day," says Jackie. "And I loved my job as a hygiene officer in a Belfast hospital. Suddenly I wasn't allowed to put the washing on or play with my kids. Kyle's dad was supportive, but it was too much to take."

She became depressed and that, in turn, raised her blood pressure. So she drank to try and calm herself down.

"A glass of white wine with dinner had always relaxed me," she says.

"But now, one led to another. I tried to be sensible, only drinking every other day, but I would have two glasses of wine at a time."

As the months passed, scans revealed that her baby wasn't growing properly.

Jackie says: "The doctors didn't know what was wrong, and when they asked about my lifestyle I told the truth.

"I ate healthily, I'd given up smoking and although I'd been warned that knocking back shots wasn't sensible, I thought a couple of glasses of wine would lower my blood pressure, so I carried on."

But instead, it rose. At 33 weeks pregnant her blood pressure was so high that Jackie ran the risk of pre-eclampsia and doctors induced the birth. Kyle was born in March 2003 and taken to the intensive care ward at the Royal Maternity Hospital in Belfast.

"I didn't see him for 10 hours, which was agony," she says. "When I did see him his face was covered in wrinkles.

I know now that's a sign of FAS. But I just fell in love with him." After five weeks, Kyle came home on Jackie's birthday.

Sadly, the trauma surrounding the birth took its toll on her relationship with Kyle's father and, when the baby was three months old, they split up. "He couldn't cope with Kyle's problems," is all she will say.

Meanwhile, she stopped drinking.

"There was no way I was going to drink when I had to be caring for Kyle," she says. "I didn't miss it. But he didn't seem right. The doctors said he was fine but I knew he wasn't."

Kyle wasn't diagnosed until he was nine months old. He got a bad chest infection and Jackie took him to A&E at Belfast Children's Hospital. A doctor took one look at his flattened features - a symptom of the syndrome - and diagnosed FAS.

"She asked if I had any idea how ill my son was and what I'd done to him," she says.

"I looked at her blankly. I had no idea what FAS was. She was so angry and said I must have been drinking while pregnant." When Jackie discovered that FAS causes a lack of balance, poorly functioning organs, behavioural problems and learning difficulties, she was racked with guilt. "I was horrified I'd hurt my son," she says. "Now Kyle needs 24- hour care, can barely speak, and communicates by sign language.

"In addition to kicking and biting me, he bites himself. I have to strap him into a special chair at meal times to stop him hurting either of us, and he wears a helmet outside to prevent him harming himself.

"This summer he hit me over the head with a hammer so hard I had to have stitches. But he can be such a lovely wee lad. When he's not aggressive, I love playing with him. My other boys all love him, too.

Kyle starts a special nursery school today - I really hope it makes him happy.

"I barely drink at all any more. I'm on medication for my depression.

"I think the government should make doctors, mid-wives and antenatal classes warn women of the dangers of drinking during pregnancy. Advertise it on buses, billboards, from the top of Big Ben -
anything to get the message out. "You don't have to be an alcoholic to harm your unborn baby. Any alcohol during pregnancy is dangerous. My son is proof that it is not worth it. Ever."

antonia.hoyle@mirror.co.uk /Tonight With Trevor McDonald: Binge Drinking Babies, tonight, ITV1, 8pm.

THE SOBER TRUTH
UP to four babies in every hundred are estimated to be born with Foetal Alcohol Spectrum Disorder (FASD) - a lesser form of FAS and a leading cause of learning difficulties. That is 40 times more than are born with Down's Syndrome.

DOCTORS have found that binge drinking - and even moderate drinking - by mothers-to-be can lead to difficulties including Attention Deficit Hyperactivity Disorder (ADHD) and autism.
TWO 250ml glasses of wine per session constitutes a "binge".

ONE in three women said they would have cut down their alcohol consumption during pregnancy if there were warnings about the risks to unborn babies on bottles and cans of alcohol.

EXPERTS have called on the government to review its guidelines on how much pregnant women can drink. Many say abstinence is the only way to ensure your child is not alcohol damaged.

List of Behaviors with FASD

2006-07-19T09:16:00.000-07:00

An email friend of mine, Peggy, recently sent a list of behaviors associated with FASD that she found from personal research and from "A Fetal Alcohol Behavior Scale" published in the *Alcoholism: Clinical and Experimental Research* by Dr. Ann Streissguth. I thought it was a great list and wanted to include it here...

short term memory problems
obsessive compulsive behavior
unaware of consequences of an action
poor attention (may not be true attention deficit disorder)
can't take hints
overreacts
mood swings
interrupts
poor judgment
likes to be the center of attention
loses things
overstimulated fidgety
likes to talk
demands attention
often described as "...tries hard but...
out of context
overly friendly
sleep problems
superficial friendships
hygiene problems
messy
touches people frequently
chats but no content
klutzy
poor manners
talks fast
physically loving
can't play team sports
difficulty performing even though can repeat instructions
unusal topics of conversation
inappropriate behavior at home
inappropriate behavior outside the home
repeats often
sensitive to noises
loud, unusual voice
problems with sexual function

Other Central Nervous System symptoms that have been reported by other researchers may include:
mental retardation (IQs of these children can range from 40 to 130)
Cerebral Palsy symptoms
epilepsy symptoms
short term memory loss
intermittant long term memory problems
perseveration (does things over and over)
attachment disorder
speech and language problems
receptive language disorder
sensory integration dysfunction
disorderly conduct
has trouble learning new motor skills
fine motor skills are problematic
sensitive or insenstive to bright lights
has dry, flakey skin
distinct odor to self or room or clothes
stomach and/or bowel problems
unusual eye and hearing problems
problems with mentrual periods
may often be diagnosed as: ADHD, Asperger's. Autistic, Pervasive Developmental Delay, Antisocial Personality, Hyperactivity, Borderline Personality Disorder.

A Mother's Story

2006-05-19T08:33:00.000-07:00

This article if from The Billings Gazette

Mother uses story to spotlight fetal alcohol syndrome
By DIANE COCHRANOf The Gazette Staff

Jill Plumage never imagined she would be recognized as an expert on fetal alcohol syndrome. "Isn't that ironic?" asked Plumage, who is the FAS coordinator on the Fort Belknap Indian Reservation. "The one thing in my life I am considered an expert for is the one thing in my life I would change."

Plumage's son has fetal alcohol syndrome."He was born drunk," she said. "They put him on my stomach, and I could smell alcohol on his breath."

Still, she didn't stop drinking. She interpreted her doctor's advice to improve her breast milk by drinking beer as a green light to consume massive amounts of alcohol.

"I didn't hear two to three cans of beer a day. I heard two to three cases. I heard two to three fifths," Plumage said. "I was clicking my heels."

When her son was a few months old, Plumage realized she could not care for him, and her sister adopted him. Fifteen years passed before she was able to talk about it, even to herself.Now Plumage travels around Montana and the nation telling her story.

On Tuesday, she spoke at a Billings workshop sponsored by Parents, Let's Unite for Kids."I'm not a professional. I'm just a little, humble Indian woman from Fort Belknap," she said. "I have a 30-year-old son who is FAS. I'm not proud to stand here and tell you that, but I am proud to tell you my son asked me to come and tell you about it."

In her youth, Plumage went to alcohol treatment 22 times. She met and fell in love with her son's father in one of those programs.After being released from treatment, the couple started drinking again and didn't stop when Plumage discovered she was pregnant.

She remembers feeling her baby move inside her when she was sober and how he fell still when she drank. She would tell his father that he was sleeping, and when the movement resumed, usually about three days after she sobered up, she would say the baby was awake again."I didn't know in my head, but, in my heart, I knew," Plumage said. "My baby didn't go to sleep. My baby passed out. Our baby didn't wake up. Our baby came to."

When Plumage was eight months pregnant, the baby's father was killed in an alcohol-related car crash. She was prescribed Librium to help deal with the grief.

"That's all I did was drink whiskey and eat Librium," she said.

She sobered up about three days before going into labor, but the baby was still intoxicated. She watched him go through withdrawals in a hospital incubator.Despite his obvious birth defects, no one said a word to her about her alcohol abuse.With the help of Alcoholics Anonymous, Plumage stopped drinking on July 4, 1978. She earned an undergraduate degree from what was then Eastern Montana College and moved back to the Fort Belknap Indian Reservation, where she was eventually appointed as the tribe's fetal alcohol syndrome coordinator.

In addition to her speaking engagements, Plumage helps coordinate a University of New Mexico study about FAS on the reservation. To date, the study has tested about 100 children for FAS, and 17 have been diagnosed with the disorder.Nationwide, FAS occurs in about 1 out of every 1,000 births, Plumage said."If we have 17 out of 100, what's going to happen to our next generation?" Plumage asked. "The only way I know to make change is to be honest."Her hope -- and her son's hope -- is that telling their story will prevent other women from drinking while they are pregnant.

"It only happens one way," Plumage said. "It's the only birth defect known to man that is 100 percent preventable. If a woman does not drink alcohol (while pregnant), then it doesn't happen."

"I stayed sober one more day." ~Bioclyde

2006-04-18T08:03:00.000-07:00

An email friend of mine wrote the following about her addiction and recovery experiences. I think it is very powerful and I have such respect for her as she uses her story to educate and help others. Her FASlink email list name is Bioclyde and this is her story.

Once again I have been given another year of sobriety. This year I celebrate 29 years without using drugs or alcohol. Each year since I joined faslink I want to share my thoughts and feelings with faslinkers. I don't do this to boast, I do it out of necessity.

I come from a fairly dysfucntional family where sharing emotions meant yelling and screaming, where compassion never existed. At a very young age I was a sex toy for one of my siblings and when I tried to disclose the situation to my mother...in her innocence, she didn't respond and blamed me (5 at the time) for causing this to happen. I was hurt, and became very sad inside, so I kept quiet. By the time I reached my teen years my anger had grown but instead of defending myself I hated myself. I was an "A: student in school, always in the top 3, yet I couldn't find a way to ease this terrible pain inside. I was confused and had no where to turn. By the age of 9 I had already found booze, and from the very first sip I liked the warm feelings inside...I felt brave again and I could conquer my "problems." At 14 I got drunk, I had absolutely no intention of drinking...it just happened. I was an emotional wreck already, but became brazen with alcohol in my system. Within a year I became suicidal and I was placed into a Mental Insitute...the records state that I had a " paranoid flavour to my talk." It also describes the rages I had..I still don't remember much of those years...probably because of the 5 to 10 meds I was given. I refused to go home, yet I never once mentioned the insest to anyone. I bided my time, and each time I was allowed home for the weekend I would find a way to escape in the bottle. I can't recall a time that I drank that I didn't get drunk. No one knew, and no one even suspected I was drinking. I did a little research and found out that no one could keep me committed in a Mental Health institute if I was able to support myself financially...so by the age of 18 I found a full-time job and signed myself out!

My drinking continued on a regular, weekly basis. Each pay day I went out with my boyfriend and we drank. I began getting frustrated because no matter how much I drank, I just couldn't seem to get drunk...so I began drinking more. By the age of 25, every saturday I bought a dozen beers, and drank all of them except 1 (for the next day). I needed them just to "warm up" before I went to the bars. This was my rountine every single week, friday & saturday I drank...sunday I didn't, and monday I went to work. My drinking progressed and eventually I drank daily, I wasn't drunk just "under the influence" It got the point where I was drinking from morning until I passed out, come to, and drink some more. By the age of 26 I was living on Skid Row, and I was like this up until October 1978 when I got sick, and discovered I was nearly 4 months pregnant. I immediately stopped drinking, found a place to stay...but alas, alcohol had taken control over my body. At 27 weeks I got drunk because I didn't know that just one drink got me going and no matter how much I wanted to stop, I just couldn't do it. My son was born at 35 weeks gestation. He was small, jittery and I was petrified. When I held him in my arms for the first time in my entire life I felt love for someone. He was a special gift. My problem was, although I just couldn't stay sober I still didn't know I had a drinking problem. I got drunk one more time, but this time something was different. In the middle of this state of drunken stupor I remembered I had a baby, and I remembered I had left him with my sister. I went looking for him, stoned out of my head...It isn't clear exactly what happened and I am only sayin what I was told by others.

It was a chilly night that April, in 1977. I woke up sitting in a bar/restaurant, wondering where I was?? There were ( what I saw) what seemed like 50 coffee cups in front of me, someone was speaking. I looked up and my Dad ( the only person who ever showed me the right kind of love) was standing in front of me. Tears were streaming down his cheeks, I was confused, why was he so sad? he kept saying, "Give me the baby, give me my grandson...please!" I couldn't understand. Finally, I remembered and looked down...there was my tiny baby shivering in only a diaper and a thin shirt on his back. He was only a month old. I handed him to my Dad, who wrapped him gently in a warm blanket. I will never forget the words my father spoke to me that night, they saved my life. he said, "Claudia, I love you, why didn't you tell me you drank this much, why didn't I know?" Then he looked at me with a love I won't forget and said, " I will only say this once, you better get help for your drinking otherwise I will make sure you never get to keep your son." With that he asked me if I was ready, I must have said yes because I came too sitting in my parent's kitchen. That happened to me a lot, I had terrible black outs when I drank. I was told I sat there for hours not saying a word, then I turned to my mother and told her I was going to contact AA. All she said was, " Finally!"

I have never had a drink since. I struggled over the years with mood swings, emotions and reality. One by one I deal with them daily. I have come to terms with my past, and I have no regrets. I suffer from the disease of alcoholism. It's a medical condition that can be fatal. I was diagnosed with a serious liver disease at the onset of my sobriety, but somehow I am still alive. I suffered brain damage, and a chemical imbalance. I won't take meds. I was told 29 years ago that my life would get better, and it did. I was told that if I worked the program, I would begin to change, and continue to change...and that promise came true too. I have no magic solution, just a trust in a power greater than myself and the unconditional love from strangers. I discovered that if I wanted to be happy the only thing I could change was me, and I learned how to forgive my mother...she could only give me what she had received. My son is well and happy now. It was hard to raise him because he too was exposed to alcohol, I had to learn about my own disease before I could parent him and help him reach his own potential.

Life today was good. I had a good day, and I stayed sober one more day. I have no clue about tomorrow, and yesterday is gone. I learn from my mistakes and that is what makes me grow in spirit. Thanks for reading this far.

Sincerely,
Bioclyde

Teresa Kellerman's article

2006-03-02T13:03:00.000-08:00

From this article-

Tucson Citizen Saturday, February 25, 2006
Mom takes expertise to help others across AzPinpointing the cost of fetal alcoholGABRIELLE FIMBRESgfimbres@tucsoncitizen.com

Teresa Kellerman has spent 28 years educating herself about the disorder that ravaged her adopted son's brain.

John was diagnosed at birth with fetal alcohol syndrome, the leading preventable cause of mental retardation in the United States.

"As devastating as his outcome was, we have been able to get him what he needs," she said.

Through early identification, children with FAS are more likely to thrive, and less likely to end up in prison, mental institutions or homeless on the streets, Kellerman said.

She is taking that message statewide, helping families and professionals understand FAS and related fetal alcohol spectrum disorders, as the new FASD coordinator for the Arizona Division of Developmental Disabilities.

She is determining how many adults and children in the state system have FAS and FASD. She will train caseworkers to identify FASD and provide services that make the greatest impact.

"This is a part of my dream," Kellerman said.

FAS was first diagnosed in 1973.

It occurs when women drink alcohol during pregnancy.

Even moderate amounts of alcohol in pregnancy have been found to cause brain damage.

Children with FASD suffer from learning disabilities, mental health issues, poor impulse control and mood disorders. The problems continue into adulthood.

"Doctors continue to tell their pregnant patients it's OK to have a drink or two," Kellerman said. "But any drink a woman takes destroys some of the child's potential."

No cure has been found for FASD, but Kellerman knows she can improve people's lives through early identification.

Early detection could have made a difference for John Eastlack, who spends his days locked in an Arizona prison for a crime that may have started in the womb.

Eastlack, 38, has FAS. As a child, his troubles were blamed on his poor choices. By the time he was diagnosed, he was in prison for a double-murder.

Eastlack is among the estimated 55 percent of men with FAS who end up incarcerated.

His adoptive mother, Tucson psychologist and author Katherine Norgard, wants to spare other parents the devastation caused by FAS.

"Rather than dealing with FAS issues early on, we're locking people up," said Norgard, whose book, "Hard to Place: A Crime of Alcohol" was released last month.

Kellerman estimates 10 percent of the 25,000 people in the state developmental disabilities system may have FASD.

Ric Zaharia, who heads the Arizona system, said this is the first time a count has been attempted.

"We have no way of knowing what the number is," Zaharia said. "We've never looked at it. Mental retardation is often, but not always, a result of FAS, but folks don't carry that diagnosis.
"We can most easily stop mental retardation if we can get people to stop drinking in pregnancy," he said.

Diagnosing FAS and FASD can be difficult.

People with FAS are small, have central nervous system damage and distinct facial characteristics.

Those with FASD may not have the physical characteristics, but have all the social and emotional problems.

But the vast majority of people with FASD don't qualify for government services.
Just the most drastically impaired, with IQs below 70, do.

Others founder through school and life.

Many end up incarcerated, jobless and unable to care for themselves, Kellerman said.
Her son is a constant reminder of the importance of prevention and intervention.

Kellerman has been a lifelong advocate for her son, who works at Desert Survivors Nursery, 1020 W. Starr Pass Blvd., and lives with his sister Kari, 31. Kari, who was also adopted, has Prader-Willi syndrome, a genetic disorder that results in damage to the central nervous syndrome and an insatiable appetite.

The two live in their own home, with constant supervision provided by the state.
John Kellerman's favorite time of the week comes on Sundays, when he plays drums at St. Paul's United Methodist Church, 8051 E. Broadway. His mom sings with the band.

He has always known his birth mother's drinking in pregnancy made him different.

Kellerman remembers seeing the tiny, sickly baby in a hospital crib, and falling in love.
"He was scrawny, he was skinny, he didn't look done yet," recalled Kellerman of the first time she saw him.

"I saw him and thought, 'This is my baby. I'm going to take him home and love him and give him everything he deserves.' "

FAS facts
Fetal alcohol syndrome is the top preventable cause of mental retardation in the United States. Alcohol causes more damage to an unborn child than cocaine, heroin or any other drug.
• More than 11,000 babies are born in Arizona each year to women who engaged in binge drinking during pregnancy.
• About half of all babies are conceived by women who drink.
• As high as 90 percent of children in foster care were exposed to alcohol in the womb.
• The annual cost to U.S. taxpayers for FAS is $5.8 billion. The cost to Arizonans: $98 million.
• There is no safe level of drinking during pregnancy.
Source: Fasstar Enterprises http://www.fasstar.com/
On the Web
FASarizona.com: http://www.fasarizona.com/
FAS Community Resource Center: www.come-over.to/FASCRC
National Organizationn on Fetal Alcohol Syndrome: http://www.nofas.org/
Tucson Citizen FAS series: www.tucsoncitizen.com/projects/fas

Sample Behavior Plan

2006-02-09T06:02:00.000-08:00

This is a sample behavior plan for a child with FASD. It was done by "Mothers With Attitudes". It isn't a "one size fits all" type plan, but it does give good suggestions about what usually works and what is often ineffective with kids with FASD.

BEHAVIOR MANAGEMENT PLAN FOR [CHILD]

Overview of Behavioral Issues Associated with Fetal Alcohol Effects
Specific Behavior Plan for [child]
I. Create rules that target specific behaviors.
II. Provide constant positive feedback when rules are not being broken.
III. Provide immediate, unemotional time-outs when a rule is broken.
IV. Adjust the environment to make it easy to follow rules.
V. Assess effectiveness of plan on a regular basis and make adjustments.

Overview of Behavioral Issues Associated with Fetal Alcohol Effects
In working with [child] and managing his behavior, it will be helpful to understand a few things about fetal alcohol affected brains:
• For most of us, the part of the brain that has impulses and the part that knows the rules are in constant easy communication. So we have an impulse to do something, we check it against what we know to be acceptable rules of behavior, and we make a conscious choice whether or not to break a rule. But in fetal alcohol affected brains, the connection between those two areas is faulty or missing. So the child has an impulse to do something, and by the time the part of the brain that knows the rules is even aware of the impulse, the action has already taken place, and most likely somebody is already yelling at the child about it. So you can have a kid who knows the rules, wants to follow the rules, is upset about breaking the rules, yet still breaks them. At the moment of action, he’s working purely on impulse.

• And since impulsive behavior is almost by definition without reason, asking a fetal alcohol affected child why he did something and not taking "I don't know" for an answer is pretty much insisting that he lie. They don't know why they do it. They may not even know what they did. So you'll either get gobs of denial and defensiveness, or you'll get a spontaneous excuse that defies credulity. Imagination and creativity are some of the positive attributes of people with FAE, but when they're used in service of getting out of trouble, they usually result in a tall tale that makes matters worse.

• Social and emotional development lags way, way, way behind in people with FAE. Teens and young adults with FAE often have an emotional developmental age of about 6. So with an elementary-school-aged child, you have to figure they may be working at a toddler stage at best. You have to adjust everything to that level -- expectations, supervision, privileges, rules, discipline. People with FAE tend to be verbal well beyond their level of understanding, and it may be tempting to assume that that clever and talkative child is able to understand social rules at a much more sophisticated level. It's a mistake.

• Stress makes things worse. A confusing thing with FAE kids is that sometimes they seem to be able to do things and sometimes they don't, and it's natural to assume that that indicates willfulness. But in fact their ability to control their behavior declines in proportion to the amount of stress they are experiencing. This can be obvious stress -- a noisy place, difficult schoolwork, disruptions of routine -- or less obvious, particularly in kids with sensory integration problems who react to things in the environment the rest of us wouldn't even notice. Sometimes the loss of control happens well after a stressful event -- if a child uses up a lot of resources getting through something hard early in the day, he may run out of control late in the day.

Because of these relatively unchangeable facts of an FAE child’s life, strategies that rely on self-control and presume willfulness; that require an advanced level of maturity and responsibility; or that increase the level of stress will be ineffective at best and may in fact escalate bad behavior. These may include:

• Negative consequences.
• Big positive consequences.
• Escalating consequences.
• Nagging to stop behavior.
• Pressure not to break rules.
• Abstract rules like “Be respectful.”
• A choice offered between compliance and negative consequence.
• Behavior modification

On the other hand, strategies that do not presume control; that don’t put undue weight on behavioral slip-ups; that are suited to the child’s level of emotional maturity; and that decrease the level of stress will be more effective, and at the least will not escalate bad behavior. These may include:
• Positive consequences, on a modest scale, delivered immediately.
• Distraction from misbehavior.
• Brief time-outs, delivered consistently and matter-of-factly.
• Changing of environment to make success more likely.
• Behavior analysis to assist in changing of environment.
• Constant positive feedback and encouragement.
• Specific rules like “No hitting.”
• Choices in which both options are acceptable to adult.
• Behavior management

Specific Behavior Plan for [Child]

I. Create rules that target specific behaviors.

• Translate abstract classroom rules into five or six specific directives targeted to [child]’s particular needs. For example:NO pushing, poking, hitting, or grabbing.NO hugging or kissing in school.NO interrupting the teacher.NO leaving desk without permission.NO using mean words like “stupid” or “shut-up.”

• Post the rules where [child] can see them, possibly taping them to his desk.

• Only include items in rules that you will be willing to reinforce with a time-out whenever the rule is broken. Avoid things that are likely to recur with such frequency that he would be in time-out constantly, such as finger-sucking, jumping, messy writing or standing up at desk.

• You may want to include at least one rule that [child] has little trouble keeping, so that he has a constant experience of success and control.

II. Provide constant positive feedback when rules are not being broken.

• Using the rules above: If he passes anywhere near another student without touching them inappropriately, comment on how well he followed the rule. If he goes five minutes without interrupting, comment on it. If he stays seated for even a few minutes, announce that you like the way he’s sitting. Tell him you like the way he’s talking when he chooses words thoughtfully.

• If you see him about to break a rule, jump in and distract him with a positive comment like: “It’s really hard to sit still, isn’t it? I see that you’re really trying. It’s great that you’re trying your best.”

• Augment the positive feedback with neutral statements indicating that he’s being noticed in a non-negative way any time he is following the rules. Comment on the pencil he’s using, the clothes he’s wearing, the story he’s writing, the number of problems he’s done.

• Do not expect or require a verbal response from him for the positive statements. Improved behavior will be his response.

III. Provide immediate, unemotional time-outs when a rule is broken.

• Say something along the lines of, “Oops, you interrupted. Go sit, please.”

• No nagging before and no discussion after the time-out. He does his time and emerges with a clean slate.

• Keep the time-outs brief to reduce resistance. At home, as little as 20 seconds has been successful in changing behavior. In the classroom, a minute should be sufficient. It’s not a punishment so much as an acknowledgment that a rule has been broken, and a break in the action to get himself together.

IV. Adjust the environment to make it easy to follow rules.

• Children with FAE need an “external brain” to help them with judgments and adjustments they cannot make on their own. It is the job of adults who are working with [child] to constantly monitor his reactions and his environment and arrange ways for him to be successful and unstressed.

If inappropriate physical contact is a problem:
• Put [child] at the front or end of any line.
• Give him tasks to do in the classroom as other students are leaving (e.g., turning out lights) so that he will naturally be last in line.
• Try to steer him to areas of the classroom or other room that are not crowded.
• Provide physical barrier between him and other students if he seems to be struggling to keep his hands to himself.
• Offer distraction if he seems to be struggling to keep his hands to himself.
If staying in his seat is a problem:
• Allow him to stand up while doing work.
• Provide frequent movement breaks.
• Provide lots of distractions and motivations to keep him on task.
• Consider providing him with a larger working space at the back of the room so that he can move around without distracting other students.
• Consider alternative seating options such as an exercise ball.
• Consider allowing him to work on projects in a more hands-on way, with less seat work required.
• Use movement as a reward for completing small amounts of work.

If interrupting the teacher is a problem:
• Give him written information about what will be happening on a particular day so he can follow it without questioning.
• Allow him one question every five minutes, or when he’s completed an allotted portion of work.
• Have him write questions in his notebook and present them at an appropriate time.
• Provide distractions when he seems about to interrupt.
• If he’s compelled to interrupt in the disciplining of another student, use distractions or removal to another part of the room or school to keep him from noticing or becoming involved.

If completing work in a cooperative manner is a problem:
• Give him a checklist of work he must complete so that he can keep track visually.
• Consider putting all worksheets to be done that day in a folder and allow him to choose what to do.
• Provide motivating rewards for small increments of work completed.
• If work is completed quickly, allow him to move on to a more enjoyable activity like computer work, reading, even looking out the window.
• If the appearance of a worksheet is overwhelming, fold it or use a piece of paper to block out all but one or two questions. Give a reward after these are completed.
• Allow verbal answers instead of written if that keeps him going.
• Allow him to pick a new writing utensil before starting a new worksheet.
• Send home uncompleted work as homework rather than making an issue of it at school.

If misbehavior appears to be escalating:
• Do behavior analysis to try to determine what might be causing stress. Possibilities include: disruption of routine; substitute or absence of adult in classroom; assemblies or periods in mainstream classroom (Spanish, art, music); difficult work; lots of fine motor work; overstimulation at recess; noisiness; boredom; lack of movement.
• If the circumstance that is causing the stress can’t be changed, strengthen all other supports, increase the number of positive or neutral statements, break work into smaller units for rewards, and lower academic and behavioral expectations for the day.
• Keep track of what seems to cause problems and prepare in advance for future occurrences. If possible, send word home in advance of schedule changes or absences so that [child] can be prepared.
• Talk to [child] about what you think may be causing him to lose control. “You seem to be having a hard time this afternoon. I think maybe you used up all your control sitting still at the assembly this morning. Let’s try to pull you back together.”
Maintain a “bag of tricks” to be used as motivation, reward, or distraction from misbehavior.
• Have as many high interest or highly distracting items or ideas as possible so you can keep trying until something works. Some things that can be used to motivate and/or distract [child] when necessary are:
KeysCar
magazines
cards
Writing or drawing in notebook
Toy cars
Hard candy
Tic-Tac-Toe
Game where you join dots to make squares
Different pens
Looking out window
Asking a question
Humor
A surprising or silly statement
Whispering a secret in his ear
Taking a walk
Getting a drink
Pushing hard against his hands
Reading a book
Choosing what to do next
• Keep adding ideas to the list as you find things that work (or as [child] asks to do things -- use those as rewards/distractions).

V. Work with parents to assess effectiveness of plan on a regular basis and make adjustments.

• Send daily behavior report home (parent will provide form).
• Parents will include school behavior in daily “credit review,” in which [child] can earn points for privileges.
• Share with parents what seems to be working, and seek advice for what doesn’t.
• Include on report any stress-inducing occurrences that may have affected behavior.
• Meet with parent regularly to discuss behavior that is causing a problem in the classroom and develop management strategies.
• Re-evaluate the rules from time to time and adjust them to reflect [child]’s changing behavioral challenges and triumphs.
• Take advantage of materials on Fetal Alcohol Effects and other behavioral resources available from the parents. These include:
“Fetal Alcohol Syndrome, Fetal Alcohol Effects: Strategies for Professionals” by Diane Malbin
“Fetal Alcohol Syndrome” by Anne Streissguth
“Teaching Students with Fetal Alcohol Syndrome/Effects” from the British Columbia Ministry of Education
“Transforming the Difficult Child: The Nurtured Heart Approach” by Howard Glasser and Jennifer Easley
“Steps to Independence” by Bruce L. Baker and Alan J. Brightman
“The Challenging Child” by Stanley Greenspan
copyright (c) 2003 by Terri Mauro

FASlink is 10 years old!

2005-12-06T04:37:00.000-08:00

People living with FASD in their lives or in their families NEED support and one of the best places I have found for that support is FASlink. This article was in the recent issue of Iceberg , a newsletter about FASD. Happy Birthday, FASlink!

FASLink: Celebrating 10 Years Online
by Peggy Seo Oba

In the spring of 1995, a Manitoba mother contacted the Canadian Centre for Substance Abuse and asked information specialist Carole Julien if she could help her start a listserv on the Internet. "This listserv, " she explained, "would be modeled after another Internet group called "OurKids" in which families of children with disabilities could support each other. Only this would be called the FASLink."

And with this, Mrs. Val Surbey of Winnipeg started the largest listserv on the Internet for families and professionals dealing with Fetal Alcohol Spectrum Disorders. From an initial group of about ten people, FASLink has grown to a listserv that serves 300-500 people and professionals. It provides support but over the years has also provided a host of other services; more importantly, it also allows sharing of valuable personal experiences.The initial group lived in different parts of North America and represented a wide variety of circumstances. Sally Caldwell had just become famous as Anton's mother in Fantastic Anton Succeeds by Judith Kleinfeld; Daniel Dubovsky, a single father of a son with FAS, was an instructor in psychiatry at Allegheny University, training people working in mental health and substance abuse treatment, and he had a great interest in and knowledge of pharmaceuticals; Louise Morin, a mother from Quebec, was anxious to provide information to the French-speaking peoples of Canada; Bruce Ritchie (present moderator of FASLink), was a parent and a computer systems expert; Dr. Robert Schacht was working with the American Indian Rehabilitation Center at the University of Northern Arizona; Joan and Bill Smith were adoptive parents who later started the OlderFAS listserv; and Donna Wheway was from the British Columbia FAS Support Network. Other founding members included "Y," a birth mother; "P," an adoptive mother of two boys; and Val and her friend Bev, also an adoptive mother. There might have been others "lurking," but these people formed the initial core of FASLink and had a vast array of knowledge to share.

Over the years, people have joined and dropped FASLink, depending on how busy or difficult their lives have become. We may have started out as a support group but we have grown to include research information, research services, personal experience with problems, conference notices, calls for papers, calls for research participants, legislative issues, education and judicial issues, as well as other everyday problems that beset busy families.

Interesting FASLink Facts (Courtesy of Bruce Ritchie):
The FASLink Web site maintains an extensive archive of information serving more than 400,000 people annually.
The FASLink site has more than 100,000 FASD-related documents. It provides access to research, literature, PowerPoint presentations, diagnostic tools, and educational and legal resources.
FASLink produces educational CD's with information that can be shared with family members, teachers and other professionals involved with FASD issues.
FASLink places at the top among Internet search engines for the term "fetal alcohol," even though http://www.faslink.org/ and www.acbr.com/fas/ are the same FASLink address, splitting the ranking.
FASLink provides information and support 24/7 and serves parents (birth, foster and adoptive), caregivers, adults with FASD, doctors, teachers, social workers, lawyers, students, psychologists, law enforcement officials, judiciary members, corrections professionals and government policy makers.
FASLink shares 50 to 100 letters daily among the 300 to 500 members.
FASLink membership is highest when schools are in session.
FASLink depends on private financial support for its existence. It does not receive donations or funding from the alcohol industry.
FASLink has also spread internationally. From the original Canadians, we have come to include members from the U.S., the United Kingdom, the Netherlands, Germany, Poland, South Africa, Australia, New Zealand and Tasmania.

Age-wise, we also span quite a few years of child rearing. Some are birth parents. Many members are young parents who have just adopted a child. Some are older parents. Some are foster parents and some are raising nieces and nephews. Some are grandparents and some have just taken in a neighbor's child and now have custody. Some are just relatives who care. Some have one child and some have quite a few. We have professionals in nearly every field associated with children's health care and education. We have parents who have barely finished high school and parents with PhDs. We have numerous careers in art, design, writing, counseling, education, medicine, business, administration, computer science, music, therapy and many more. And we are even lucky enough to have some very articulate adults with FASD who generously share their lives with us. The one thing we have in common is that FASD is the great leveler: in this we are all the same.

For the most part we talk about the problems we are having with our children and "The System." "The System" can range from getting a diagnosis, to getting help with the schools, to finding the right drug therapy, to keeping a job, to life "after" the parents. Continuity of care is one thing sorely lacking in FASD treatment. It is our greatest problem.

In 1999, the Canadian Centre for Substance Abuse decided to relinquish its patronage of the FASLink. When no agency stepped forward to keep it going, Bruce Ritchie decided to take the responsibility of its continuance upon himself until proper funding could be found. It is Bruce who presently provides the hardware, software and Internet connections that are the basis of the FASLink listserv.

Under Bruce's guidance, FASLink is minimally moderated. We do get into hot topics at times, but as with all large families, we consider this part of our overall relationship. If things get too uncomfortable, it is recommended that the reader simply use the delete button until things return to normal. And things do return to "normal".

The FASLink can get silly at times. One mother's problems with her daily schedule led to two days of exchanging crock-pot recipes. Typos, language errors and stories about the kids lead to good-natured teasing and lots of "ROFL” (rolling on the floor laughing) in the postings. Sometimes it is the much-needed laughter that makes things tilt to normal again.

In ten years, we have also had pet problems, in-law problems, spouse and special relationship problems, housekeeping problems and consumer issues. We have celebrated births, marriages, IEPs that have been accepted, new jobs, new relationships, milestone birthdays and therapies that have worked. We have commiserated with each other over sprained ankles, worn-out cars, the flu, messy offices and kitchen tables, dealing with our teenagers, and even death. If it concerns living with FASD, then we have probably talked about it and tried to deal with it. We have given and taken advice, all the while knowing that it is hard to walk a mile in another person's shoes.

It has been a useful ten years for the families and the children they love. We hope to grow and learn, and perhaps through our combined efforts, change the face of FASD with more knowledge, understanding and compassion than that which existed before the FASLink.
Peggy Seo Oba is an aunt to three children with FASD.
To access FASLink
FASLink Web site: http://www.faslink.org/Moderator's Email: info@faslink.org

You And I

2005-11-21T22:21:00.000-08:00

You and I

This was posted on FASlink today, it was written out of desperation by Dorthy Beckwith in '94 after a 4 week stay ( by her daughter with FAS) in the Children's Psychiatric unit. Parents of children with FASD are often blamed when others, including professionals, do not understand the brain damage caused by prenatal alcohol disorders.

I am the parent. You are the professional

I came to you out of respect. You treated me with disrespect.

I love my child. I know nothing. You've worked a few hours with her. You know everything.

We need to be evaluated. You are above reproach.

You wrote a paper about me. It said everything I did wrong, nothing I did right.

I raise my voice. I am losing control. You raise your voice. You are compiling information.

I am non-compliant. You don't like my advice.

My child is egocentric. You are egotistical.

A child with diabetes needs Insulin, a child with Epilepsy needs Dilantin.A child with FAS/E needs Time Out?

Christina's hospital room is messy and unorganized. She does not get the White Glove Award she tried so hard to earn. Your area is unkempt. Housekeeping hasn't come through yet.

I hesitate to act. I am inconsistent. You are indecisive. You need to consult.

I bring an advocate to the team meeting. I'm disrupting the agenda. You bring staff. You are collaborating.

I give you important information about the disability of fetal alcohol exposure. You don't have time to look at it. You give me papers. I'm to read them and have them completely filled out by the next meeting.

I am honest and expose my life to you. You ambush me in meetings and couch your words in reports.

I comment on behavior. I am over critical. You comment on behavior. You are observant.

I tell you she has organic brain damage. You tell me you will test her IQ.

I talk with you about the challenges and our unconditional love for Christina. You keep bringing up the possibility of a failed adoption.

I am invested in using Fetal Alcohol as a rationale for treatment failure. You are invested in using The Parent as the reason for treatment failure.

8 Magic Keys

2005-11-06T05:25:00.000-08:00

These 8 "Magic Keys" to working with individuals with FASD were taken from this site and they are helpful strategies that help to reduce unwanted behaviors and increase the success that the affected person (this works for all ages, not just children!) experiences.

1. Concrete
Students with FAS do well when parents and educators talk in concrete terms, don’t use words with double meanings, idioms, etc. Because their social-emotional understanding is far below their chronological age, it helps to "think younger" when providing assistance, giving instructions, etc.
2. Consistency
Because of the difficulty students with FAS experience trying to generalize learning from one situation to another, they do best in an environment with few changes. This includes language. Teachers and parents can coordinate with each other to use the same words for key phases and oral directions.
3. Repetition
Students with FAS have chronic short term memory problems; they forget things they want to remember as well as information that has been learned and retained for a period of time. In order for something to make it to long term memory, it may simply need to be re-taught and re-taught.
4. Routine
Stable routines that don’t change from day to day will make it easier for students with FAS to know what to expect next and decrease their anxiety, enabling them to learn.
5. Simplicity
Remember to Keep it Short and Sweet (KISS method). Students with FAS are easily over-stimulated, leading to "shutdown" at which point no more information can be assimilated. Therefore, a simple environment is the foundation for an effective school program.
6. Specific
Say exactly what you mean. Remember that students with FAS have difficulty with abstractions, generalization, and not being able to "fill in the blanks" when given a direction. Tell them step by step what to do, developing appropriate habit patterns.
7. Structure
Structure is the "glue" that makes the world make sense for a student with FAS. If this glue is taken away, the walls fall down! A student with FAS achieves and is successful because their world provides the appropriate structure as a permanent foundation.
8. Supervision
Because of their cognitive challenges, students with FAS bring a naivete to daily life situations. They need constant supervision, as with much younger children, to develop habit patterns of appropriate behavior.

Also remember...do not ask a child with FASD "why" they are acting a certain way. You may be frustrated with their behavior but asking yourself "why" is the key to changing the environment or strategy so that the child can be successful. The child cannot change his or her brain damage, the change must come from you. I love this quote..."If you have told a child something a thousand times and he still does not understand, then it is not the child who is a slow learner."

Time & FASD

2005-11-02T18:05:00.000-08:00

This was posted on the FASlink email listserv and I requested permission to share it because it so beautifully illustrated the problem with time that many people with FASD have.

From Christine, FASlink member and mom to a 15 year old son with FASD:
"If you are talking about their actual ability to read a clock, my particular child found that pretty easy to grasp. The thing he still has no concept of, is the actual passage of time or the internal feeling of it's passing. It has an actual name - it's called Circadian rhythm (sorry - may be spelled differently than this!) Most of us can tell when 20 minutes has gone by - mine can't at all. So things like judging how long has passed between classes to know if he's late, judging how long it might take him to finish a task or a long project, or how long he has been talking about something - all lost on him. One question regional center really honed in on when I was trying to get him eligible for services was the ability to tell time. I told them he couldn't judge time - they asked him to read a clock. Totally different skills. When they pointed out to me that he could read time, I told them they were welcome to come over to my house at night when he's taking a shower. He cannot judge that he has been in there for 45 minutes and it's long past time to get out. Without me there to tell him to get out, he will wait until we are out of hot water. My solution has been to write the steps he needs to finish his shower on the wall in washable marker. He washes them off as he finishes them and then he gets out. I have to do this every night. He is 15. That's FASD, and it has nothing to do with being able to tell me it's 3:45. Sigh...."

Current Research

2005-11-02T03:53:00.000-08:00

It used to be said that FAS (Fetal Alcohol Syndrome) is more severe than FAE (Fetal Alcohol Effect). The facial features associated with FAS form during a very short time of the pregnancy, possibly on days 19-21, and if there is no alcohol consumed during that time the child will not have the facial features of FAS. The brain forms each day of the pregnancy, however. Here is an interesting study that was done in Washington....

You can find the following article here

Neuroanatomic/Neuropsychologic Analyses
of FAS/FAE Deficits

Principle Investigator: Ann Streissguth

Funded by the
National Institute on Alcohol Abuse & Alcoholism (NIAAA)

This research proposed to quantify and link the neuroanatomic and neuropsychological abnormalities in people with brain damage caused by prenatal alcohol exposure. Prior to this study, there were few methods for quantifying the brain damage caused by alcohol and its relation to dysfunctional behavior in the individual patient, and none that used modern morphometric methods measuring neuroanatomic shape variation as discernible from MRI scans. Traditionally the only "quantification" of this brain damage was indirect, and lies in the diagnostic category called Fetal Alcohol Syndrome (FAS). Unfortunately, FAS is a very insensitive guide to the extent of underlying brain pathology, even though it is specific for alcohol. People with FAS vary widely in many channels of behavior, and many other heavily exposed people who do not meet criteria for an FAS diagnosis show neurobehavioral deficits that may be as severe as FAS. Such patients are often referred to as having Fetal Alcohol Effects (FAE) or Alcohol Related Neurodevelopmental Disorders (ARND).

Although we hypothesized that our image analysis methods would reveal significant mean differences in brain form between FAS/FAE and Controls, we were surprised to find that the most significant finding was a hypervariation of form of the Corpus Callosum (CC: a white matter pathway connecting the two hemispheres of the brain). Subjects with FAS and FAE had callosa that were generally thicker or thinner than control counterparts. In addition 3, of the subjects with FAS/FAE showed frank dysgenesis (incomplete development) of the corpus callosum. This study also found that there was a complete intermingling of (lack of discrimination between) the alcohol exposed subjects with and without the facial features of FAS in terms of representations of the shape of the CC. There was no difference in CC neuroanatomy between subjects with FAS and those with FAE or ARND.

When the shape measurement of the Corpus Callosum was combined with results of neuropsychological testing, we found further surprising results. The variation in the shape of the corpus callosum was related to two specific patterns of neuropsychological performance. Those subjects with FAS/FAE whose callosa were thinner than controls demonstrated deficits in motor coordination but had relatively normal executive function abilities. Conversely, those subjects with FAS/FAE whose callosa were thicker than controls demonstrated relatively normal motor coordination but had deficits in executive function abilities. Utilizing neuroanatomy and neuropsychology together, we could discriminate between FAS/FAE subjects and control subjects; with 100% sensitivity and 93% specificity. Again the two exposed groups were completely intermingled demonstrating that there is no difference in neuroanatomy and neuropsychology between subjects diagnosed FAS and those with FAE or ARND. Future research will use the same methodology to study other brain regions thought to be associated with the damaging effects of prenatal alcohol exposure.

The potential role of these findings suggests that MRI screening of extent of damage in FAS/FAE would be of great benefit. For those without the full stigmata of the disorder, but with characteristic dysfunctional behaviors, the detection of neuroanatomic anomalies may permit proper identification and service delivery prior to the development of debilitating secondary consequences. Also, it will become possible to draw much finer distinctions among the clinical samples currently diagnosed as "FAS" or "FAE". Prognoses would thereby become more accurate, and the provision of therapeutic intervention or special education would become both more effective and more humane. Further work is appropriate in order to extend these correlated dimensions of structural-functional deficit downward into childhood or even infancy.

Consequences

2005-10-26T18:47:00.000-07:00

Children with FASD often do not understand consequences or connect cause and effect. This is a chore chart that my 7 year old son helped me to make so that he could pay for a board game that he destroyed. The game is pictured at the bottom right of the chart so that it was a visual reminder of why he needed to do the chores. We wanted him to understand that it cost us $9.99 to replace that game and we talked about how much work he would have to do around the house to earn that much money. (Money is also a difficult concept for kids with FASD.) He was able to pick 2 chores each day from this chart until they were all done and he had earned enough money to replace the game. Consequences need to be understood or they will not be effective.

***It should be noted that 95% of our parenting energy goes towards preventing behaviors, not consequencing them. Kids with FASD do not generalize their learning so this lesson might have only taught my son that he should not destroy Scrabble Junior boards, if even that! The chart was given in a calm and matter of fact "you need to do this work to pay for this game" kind of way, not as a punishment. The game belonged to the school and the teacher had sent home a note last May saying "He destroyed the game. We play with it everyday. It costs $9.99 at Target. Love, Mrs. ___ " (Ok, I admit- it didn't really say "Love"!) Remember- Punishment does not cure brain damage.

FASD Classroom

2005-10-17T12:54:00.000-07:00

These pictures are from a school in Winnepeg that was designed for children with FASD. Notice that visual distractions are covered up with sheets so that students can concentrate on the activity at hand. Notice the well defined boundaries for the seating area on the carpet.

Photo credit: Mennonite Central Committee- Canada

"Of all the substances of abuse..."

2005-10-12T18:52:00.000-07:00

"Of all the substances of abuse, including heroin, cocaine, and marijuana, alcohol produces by far the most serious neurobehavioral effects in the fetus." -Institute of Medicine 1996 Report to Congress

MRI of Brain

2005-10-12T13:30:00.000-07:00

These two images are of the brain of a 9-year-old girl with FASD. She has agenesis of the corpus callosum (meaning that it just isn't there!), and the large dark area in the back of her brain above the cerebellum is essentially empty space.

The corpus callosum is like a thick bundle of telephone wires running between the two halves of the brain. This girl essentially has 2 brain halves that aren't talking to each other.

Think younger...

2005-10-12T13:22:00.000-07:00

This is an example of what the developmental age of someone with FASD might be. The chronological age is 18 but the comprehension level and emotional maturity is that of a 6 year old. Children "age out" of the foster care system at the age of 18 and an estimated 70-80% of them have FASD....and we wonder why so many of them end up in the prison system?! (Notice that the expressive language skills are quite high...remember that these kids can "talk the talk but not walk the walk!")

SKILL DEVELOPMENTAL AGE EQUIVALENT
oActual age→→→→→→→→→→→→→→→→→→ 18 yrs
oExpressive language→→→→→→→→→→→→→→→ 20 yrs
oComprehension→→→→→6 yrs
oMoney and time concepts→→→→ 8yrs
oEmotional maturity→→→ 6 yrs
oPhysical maturity→→→→→→→→→→→→→→→ 18 yrs
oReading ability→→→→→→→→→→→→→→ 16yrs
oSocial Skills→→→→→→→→ 7 yrs
oLiving skills →→→→→→→→→→→→→11 yrs

Red Flags

2005-10-12T13:11:00.000-07:00

These are some of the red flags that might indicate that an evaluation for an FASD diagnosis is needed:

Truancy and school difficulties

Family history of chemical dependency/child protection

In foster care or raised in adoptive home

Does not seem affected by past punishments

Immature & poor social behavior

Adaptive behaviors appear to be lower than IQ should indicate.

May seem unaware of what they have done or why they are in trouble

Pattern of repetitive crime

May give inconsistent answers to questions

Easily distracted, hyperactive, inattentive, impulsive

Unable to connect actions with consequences

Child has "alphabet soup" diagnoses- ADHD, ODD, Bipolar, RAD, DBSD (a new one, Disruptive Behavior Spectrum Disorder)

Behaviors and Traits of Children with FASD

2005-10-12T06:14:00.000-07:00

The following text was taken from this FASD site
These behaviors are not character flaws or indications of a lack of moralilty...they are the direct results of brain damage from prenatal exposure to alcohol.

MOOD SWINGS
Impulsive and uninhibited
Passive and withdrawn one minute, switching to volatile temper tantrums the next.
Unpredictable; may need 24 hour supervision

DEFENSIVE AND STUBBORN
Unable (not unwilling) to accept responsibility
Self-centered; behave as if the world revolves around them
Always having to have their own way and willing to do anything to have it
Demand and expect immediate gratification.
Skilled at shifting blame
Engaging and charismatic yet creative at reframing reality (lying stealing, etc.)

LACK OF SELF-DISCIPLINE
Moral chameleons; excessive vulnerability to peer influence.
Hyperactive in non-goal directed activity.
Unable to stay focused on task, ie to follow rules, finish household chores, school assignments or keep commitments.
Shortsighted
Impulsive sexually (aggressive or vulnerable)

GENUINE INNOCENCE AND DETACHED ATTITUDE
Toward the predicaments they get themselves and their families into.
Toward authority when caught breaking the rules of society.
Toward their behavior and consequences.

Brain Functions

2005-10-12T05:39:00.000-07:00

Corpus Callosum - passes information from the left brain (rules, logic) to the right brain (impulse, feelings) and vice versa. The Corpus Callosum in an individual with FAS/ARND might be smaller than normal, and in some cases it is almost nonexistent

Hippocampus - plays a fundamental role in memory, learning, and emotion.

Hypothalamus - controls appetite, emotions, temperature, and pain sensation

Cerebellum - controls coordination and movement, behavior and memory.

Basal Ganglia - affects spatial memory and behaviors like perseveration and the inability to switch modes, work toward goals, and predict behavioral outcomes, and the perception of time.

Frontal Lobes - controls impulses and judgment. The most noteworthy damage to the brain probably occurs in the prefrontal cortex, which controls what are called the Executive Functions.

Executive Functions -
inhibition
problem solving
sexual urges
planning
time perception
internal ordering
working memory
self-monitoring
verbal self-regulation
motor control
regulation of emotion
motivation

(Info taken from a great FASD website by Teresa Kellerman- link on left)

The Brain Develops Every Day During Pregnancy!

2005-10-11T06:44:00.000-07:00

"There is no safe amount of alcohol during pregnancy"...words from the surgeon general. As you can see by this chart the brain is forming each and every day of the pregnancy. There is no safe time, there is no safe amount.

FASD is Permanent Brain Damage

2005-10-11T04:29:00.000-07:00

Two babies died, one from prenatal alcohol exposure and one from another cause completely unrelated to alcohol. Alcohol is a teratogen, a substance that is toxic to baby's developing brain. The brain of the baby with FASD (Fetal Alcohol Spectrum Disorders) is small and not well defined and it has few folds indicating a lower IQ.