Kim Morris kisses her adopted
daughter, Mauda, 5, who has fetal alcohol disorders.( THE BLADE/ALLAN DETRICH )
Fetal
alcohol disorders fill lives with challenges
Caregivers struggle to help kids cope
http://www.toledoblade.com/apps/pbcs.dll/article?AID=/20060702/NEWS08/607020302
Kim Morris kisses her adopted
daughter, Mauda, 5, who has fetal alcohol disorders.
( THE BLADE/ALLAN DETRICH )
It is a brilliant pink rose outside her Stony Ridge home this day that has attracted Mauda Morris.
Squealing, the 5-year-old girl bounces over to the new bloom, reaching for it.
Nearby, her mother winces.
Kim Morris, who adopted Mauda as an infant, has told her daughter again and again about the "prickers" on the rose bush. That they hurt. That Mauda should just look, not touch.
Though Mauda giggles and babbles and seems like most other preschoolers, what is going on inside her head often is not the same.
That's because Mauda's biological mother drank beer and wine while she was pregnant. And, according to Mauda's doctor, that alcohol rushed through the cells of the fetus - wreaking irreparable damage to Mauda's developing brain.
Like most people with fetal alcohol spectrum disorders, Mauda often struggles with the higher reasoning skills that most of us take for granted.
Understanding complex directions, grasping abstract concepts, or linking action and consequence - rose "prickers" and pain, for example - can be difficult on some days and next to impossible on others.
"You teach them, [and] they get it today, but tomorrow it might be gone," said Pat Rose, manager at Double Arc's Fetal Alcohol Syndrome Diagnostic Clinic in West Toledo.
"That's what's so frustrating for parents and teachers," she said. "It's, 'I know you know this.' "
A recent study by Double Arc, run by the Sisters of Notre Dame, suggests that 51 of 77 or two-thirds of youths at the Lucas County Youth Treatment Center over a two-year period may suffer from disorders related to prenatal alcohol exposure.
For those teens, the problem isn't so much that they won't follow directions or obey rules, but that they often can't, Mrs. Rose said.
While the mental glitch for Mauda on this particular afternoon might lead to a few scratches, the same thinking deficits might be disabling in years to come as she tries to navigate complex school rules, subtle social contexts, and even simple laws of civility.
"When you're 5, they're 5-year-old hurts," said Barb Gunning, director of health services at the Toledo-Lucas County Health Department. "But when you're big, the consequences can be just devastating."
The results of the Double Arc study are startling, even for some who have spent most of their careers trying to understand alcohol's impact on a developing brain.
Dr. Sterling Clarren, one of the world's most renown researchers on fetal alcohol disorders, said the Double Arc study number seems "surprisingly high."
Dr. Clarren and others, including Tom Donaldson, president of National Organization on Fetal Alcohol Syndrome, urged caution with the study.
Even Double Arc authors concede that the youths at the county treatment center have only undergone a preliminary screening. Clinical evaluations are now under way.
Still, Dr. Clarren and others in the field agree: Children whose brains have been damaged by alcohol are more likely to end up in trouble with their parents, with teachers, and with the law.
Worse yet, a child never outgrows a fetal alcohol exposure.
Though medicine may mask some fetal-alcohol related symptoms, it can't repair brain damage, Ms. Gunning said.
She and other officials at the Lucas County Health Department are starting a public awareness campaign about alcohol and pregnant women this month that emphasizes: "Not a Single Drop."
All this is not to say a troubled kid with fetal alcohol syndrome shouldn't be held accountable for bad behavior, Mr. Donaldson said from Washington. The challenge is to change the way the schools and courts handle them.
"If an individual doesn't understand cause and effect and they commit crimes, punishing them … isn't going to change their behavior," Mr. Donaldson said.
Misplaced 'files'
Call it Fetal Alcohol Spectrum Disorders if you will. Call its fallout Alcohol Related Neurodevelopmental Disorder or Fetal Alcohol Effect or a host of other letter strings.
File cabinet disorder. That's what Pat Rose calls it.
At Double Arc's diagnostic clinic, she has helped distraught parents, frustrated caregivers, and exasperated educators understand why some youths suddenly become violent or they just can't get certain children to listen.
"Most of us organize our information, let's say alphabetically," Mrs. Rose said.
Those with fetal alcohol disorders may misfile information or file it in part of the brain that is sometimes inaccessible, she said.
"It's having something at the tip of your tongue and you can't get it. You know how nuts it makes you? Now imagine that all day," Mrs. Rose said.
Despite the best research, scientists still struggle to understand precisely how the human brain develops and they're still sorting out just how and why alcohol sometimes impacts those processes.
What is known is this: Days after conception, as the tiny glob of human cells continue to split and multiply, genetic coding begins differentiating the cells into highly specialized neurons and ganglia. These building blocks migrate to their eventual destinations: the spinal cord, brain stem, or the brain's frontal lobes, for example.
Even before mom realizes she's pregnant, the cells begin firing messages to each other, forming the complex communication system that will ultimately involve millions of cells and countless billions of connections.
The system eventually will regulate things we never think about - our heartbeat, for example - and will enable us to reason: How do I drive this car? Where do I get a new toothbrush? How many tons of steel will be needed for this construction project?
Problem upon problem
Alcohol scrambles the process.
Some developing cells don't split as fast. Some settle in the wrong places. Others may die.
Among the vulnerable areas are the brain's frontal lobes, which are responsible for higher reasoning and for regulating emotion and impulse.
Alcohol also can stymie growth of the corpus collosum, a critical bundle of nerve fibers connecting the two hemispheres of the brain and relaying messages between them.
In the most extreme cases of Fetal Alcohol Spectrum Disorder, the child's brain is so underdeveloped, her head is noticeably smaller.
"You can have big structural problems, neurochemical problems, and microstructural problems. It's problem heaped upon problem heaped upon problem," Dr. Clarren said.
But for the most part, fetal alcohol damage is invisible in conventional medical scans, the doctor said.
His side-by-side autopsy pictures of two infants' brains - one typical, one severely alcohol damaged - have circulated in researchers' and advocates' circles for years.
To some extent, Dr. Clarren bristles at that.
Though the images helped fortify the idea that alcohol causes irreparable brain damage, the deformed brain was atypical - so badly damaged, the child died weeks after birth.
"The endpoint of all this [alcohol-related] brain damage is that it gently hurts a lot of parts of the brain," Dr. Clarren said. "The itty pieces aren't terribly dysfunctional, but when you put all the dysfunctions together, you see bigger problems than you would have predicted from the smaller dysfunctions."
Consider hearing a joke.
The brain processes the surroundings in which the joke is told, the subtleties of the language, and even the teller's body language and facial characteristics - all to assess humor, said Ed Riley, at San Diego State University's psychology department.
"If you don't put that information together in a rapid fashion, you can misinterpret what they mean," he said.
Likewise, those with fetal alcohol disorders sometimes can't generalize or make abstract connections.
Rules are painfully literal.
"A kid gets caught throwing snowballs on the playground," Mrs. Rose said. "He says, 'I won't do that again.' The next day, he's in trouble again. But he says, 'But it wasn't a snowball. It's ice.'
"Most kids would get that those are the same … but [those suffering FASD] don't," Mrs. Rose said.
That's tedious and infuriating, especially to teachers, police, and others who don't understand the difficulty.
Connecting Point, a North Toledo treatment center, has seen countless such children. Medical Director Nancy Carroll said it's impossible to tell how many, in part, because testing for fetal alcohol disorders is rare, expensive, and time-consuming, she said.
Moreover, many of the teens they see also battle additional problems, such as other medical issues, abusive homes, and troubled pasts.
"If you put this kid in a classroom and you just badger him because he's not getting it, you're going to have an explosion," Dr. Carroll said.
Cannot? Or will not?
So how do you distinguish a kid whose brain can't grasp simple instructions from one who is, well, a defiant pain in the neck?
To identify kids with fetal alcohol disorders at the Youth Treatment Center, Double Arc staff looked at four things.
A few fetal-alcohol children display telltale facial features, and some have delays in their physical growth. Staff also can sometimes determine that a biological mother had a history of drinking.
Finally, there's tons of questions and hours of observations in classrooms, in therapy, and in other parts of their day at the center that provide clues.
Those things, Mrs. Rose said, distinguish stubborn youths from those who can't get it, even when they try - the "cannots" from the "will nots," Mrs. Rose calls them.
Double Arc recently trained treatment center staff to better distinguish between defiance and disability. It takes plenty of patience - and sometimes a hint of experienced intuition, conceded Tiffany Brewster, a primary therapist.
"You have to learn you have to get to know [the youth]," she said. "You have to question them, because sometimes they're having trouble, and sometimes they're just being difficult."
Even at a clinic, fetal alcohol can be tough to diagnose. There is no simple brain scan and no blood test. Some children are developmentally delayed; others have average or above-average IQs.
Mental retardation, social dysfunction, violent outbursts, emotional instability - kids with fetal alcohol disorders can have some, a few, or all of those, and so can kids without fetal alcohol damage.
"These kids are puzzles, and trying to tease out what specific disability each kid has and how to address those specific disabilities [is] the difficult part of this," said Dr. Michelle Irons, young Mauda's doctor.
In fact, there may be another reason Mauda was fascinated with the rose recently. In some children, brain damage makes them seek out a certain level of pain as a stimulant, Dr. Irons said.
Ultimately, it's tough to tell what's going on inside the human brain, she said, especially one that's damaged. "It's like trying to figure out what hole is missing from Swiss cheese."
A lot of a child's success - whether at the county treatment center or at home - depends on a caregiver's one-on-one commitment: endless repetition of simple instructions and other learning "tricks," such as offering a stress ball to an easily distracted child. That allows the child a controlled distraction, so they can focus on what they're supposed to be learning.
Pat Brazzel admits she has been ready to give up more than a few times. More than 10 years ago, she adopted a baby and a toddler with fetal alcohol disorders. Now, her son is in a group home having racked up a history of petty thefts and an assault.
Though she said she had to call police on her son during his violent swings, she visits him regularly these days. She also attends counseling with her 11-year-old daughter.
It's tough love - for everyone involved, she said. ACA
"I've told them: 'I'm not going to let you shut me down. I'm too old for this. If you're not going to accept this home and my love - and I love you to death - you'll have to leave.'"
It's hard to remember, she said, "there's a root to this behavior."
Mauda's mom, Kim, knows that too well.
Some days, "you have this angelic little child who could rip your heart out with a smile," Ms. Morris said, "and then the next you can have a demon child. … You hope and pray, and you know there are no guarantees."
Contact Robin Erb at: robinerb@theblade.com or 419-724-6133.