Second of two parts
Such an easy baby. Serenity only cried when someone held her.
She looked healthy enough, her mother thought. A nine-pound newborn with a wisp of blond hair and cloudless blue eyes. But so quiet.
What infant doesn't wail to be fed or changed or coddled, her mother, Helen Benson, wondered.
"I knew something was wrong from the get-go," she recalled.
Benson asked her family doctors about it in the small South Carolina town where Serenity was born. Benson had used drugs and drank until she blacked out throughout the first six months of pregnancy, she confided to them.
Don't fret, the doctors said. You must be a good mom to have such a quiet baby.
It wasn't until Benson moved to Alaska that she learned her baby was born with a fetal alcohol spectrum disorder (FASD), one of a collection of permanent disabilities caused by exposure to alcohol in the womb.
Like mercury, lead and radiation, alcohol is a teratogen, which means it causes abnormalities in the body and brain of an embryo or fetus. While some researchers disagree on whether exposure to a small amount of alcohol can cause measurable damage to a child, no amount of drinking, at any time during pregnancy, has been proven safe.
If a mother binges early in pregnancy, alcohol can re-form a child's face, causing a smooth philtrum (the vertical groove between the upper lip and nose), a thin upper lip and small eyes. As the child gets older, he or she may exhibit a variety behavioral issues, from irritable aggression to a risky eagerness to please. But for most, their disability is not obvious.
As many as nine in 10 children with an FASD are diagnosed with something less visible than full fetal alcohol syndrome. That diagnosis specifically requires that the child have the hallmark facial features and be under-sized in height and weight. Even so, FASD children may suffer behavior and learning problems as severe, or more severe, than those with full FAS.
A child with an FASD can suffer damage to parts of the brain that determine intelligence, memory, language ability, motor skills and senses like touch and hearing.
Life for an FAS or FASD child can be even harder if parents and teachers don't understand their affliction.
"Their nervous system and their brain is working differently, but they look like regular kids on the outside," said Dr. Susan Astley, a University of Washington fetal alcohol syndrome expert who has diagnosed almost 3,000 people over 20 years. "We'd never punish the blind kid for not being able to see the blackboard (just) because their disability is visible to us."
1. JACOB, AGE 9
Heidi Case could tell her 9-year-old was in a bad mood. He'd come home with a teacher's note saying he'd been hitting himself at school, then disappeared to play with the new air hockey table in the basement of the family's 4,800-square-foot home.
The playroom hummed with the activity of his five rambunctious siblings. Sometimes Jacob's older brother let him score a point in hockey, but sometimes not. Jacob's irritation boiled. Everyone seemed to be teasing him.
Just 52 pounds and bone thin, Jacob's body is always in motion. His piercing scream erupted without warning.
"Shut up! Shut up! Shut up!"
Jacob's brothers and sisters ignored the yelling. Heidi noticed that he was crumbling crackers over the new table. When she told him to stop eating there, he balled his hand into a fist as if to hit her. It wouldn't have been the first time.
Jacob's sisters hadn't given him his medication for attention deficit hyperactivity disorder that morning. (ADHD is a common co-occurring problem for children with FASD.) That explained a lot, Heidi said. The air hockey game ended with his brother scoring the winning point. Jacob picked up the puck, whipped it across the room and stomped upstairs.
No one tried to coax him into taking a bath. Jacob can't stand the feel of a towel on his skin. He doesn't like water to touch his face.
Upstairs, Heidi leaned over the marble kitchen counter and held her head in her hands. She'd been having headaches all day. Jacob finally calmed down at dinner, becoming groggier as he ate his chicken soup.
The meds are finally kicking in, his mother said.
Heidi Case is now 37. She became pregnant with Jacob shortly after she divorced her husband, Jared. The couple have since remarried, but at the time she binge drank for the first time in her life. She learned about the pregnancy only after returning to her home state of Utah from a "party boat" cruise to Mexico.
The father, a one-night stand, offered to pay for an abortion, but by then it was too late.
"It's not always alcoholics who have these children with FASD," she said. "It's people like me who went on a cruise and had a little fun and now, not only are we paying for it as a family, but I have a son who is paying for it for the rest of his life."
At birth, Jacob was an under-sized preemie laboring to breathe. He spent 10 days in the neonatal intensive care unit.
Already a mother of four, Heidi recognized that he was different. Jacob didn't sit up until he was almost a year old. He didn't walk until he was 18 months.
"Between 3 and 4, when he started doing preschool, we noticed how aggressive he was," she recalled.
His brother, three years older, seemed scared of him. One day Jacob arrived home in a police car after menacing a neighbor with a knife. "He used to threaten he was going to kill us in our sleep," she said.
Desperate for help, Heidi and Jared heard that Alaska offered better psychiatric care and residential treatment for children than Utah. They moved to Wasilla, and Jacob spent months in treatment while one of the state's six FAS diagnostic teams examined him and rendered a diagnosis of partial fetal alcohol syndrome.
None of the couple's other children have an alcohol-related disability. Before coming to Alaska, Heidi had never heard of fetal alcohol syndrome, she said. She simply assumed her son was spoiled.
"The doctors always tell you, 'Don't drink when you're pregnant.' But what they don't tell you is why," she said.
The Cases are now intimately familiar with the effects of alcohol exposure in the womb, how it can damage a child's developing nervous system, blocking or delaying important signals from reaching the brain, creating a traffic jam of impulses and information known as sensory processing disorder.
People with a fetal alcohol spectrum disorder can have an underdeveloped sense of touch or an unusually high tolerance for pain.
Others can be hypersensitive: an affectionate caress or reassuring touch is something to avoided or endured, a particular fabric or the tag of a T-shirt feels unbearable.
Such hypersensitivity can be traced to a bundle of nerves that carries signals between the two halves of the brain, coordinating movement, interpreting sensations and helping process complex information.
The brain of a child with an FASD can be overrun by an amplified perception of sights, feelings and sounds, Astley, the University of Washington researcher, explained. Imagine wearing a scratchy wool sweater all day in a room full of flashing lights and pounding music, she said; you'd be irritable too.
In Jacob's case, he is easily startled. His mother has learned she must ask permission before hugging him.
After Jacob's diagnosis, the Case family moved to rural Utah, where new homes meet the craggy Wasatch Mountains. The boy's stepfather, Jared, splits his time between there and Alaska's North Slope, where he works as a directional driller.
The doctors they consulted in Utah seemed to know little about fetal alcohol syndrome, Jared Case said. He and Heidi have had trouble finding a suitable child psychiatrist or occupational therapist there. Despite a revolving cocktail of medications, Jacob still rages every day.
"The hardest thing is just knowing that it won't ever go away," Heidi said. "It's not a mental illness. It's not something that can be fixed. It's brain damage."
The Cases have thought of having Jacob carry a special card explaining his disability to onlookers who notice his constant movement and whirling outbursts.
"He's not a bad kid," the card might say, "this is not his fault."
2. ELAINE, AGE 10
Ten-year-old Elaine crashed into her mother's arms at the end of the school day. They hugged for a full 15 seconds before walking to the elementary parking lot, pitted ice cracking beneath their boots.
"I can't believe you're not wearing a coat," Jamie Gagnon said.
"I'm a polar bear," Elaine replied, "I'm never cold."
Gagnon opened the car door. The dry smell of cigarettes -- her last remaining vice, though never with her daughter in the car, she said -- vanished in a blast of winter air. Elaine talked excitedly about the stories she is writing.
Once home, Elaine made a beeline for her room, eager to show off the Littlest Pet Shop dolls her mother bought at Value Village.
Elaine loves the toys. She cries when she loses at Sorry or Go Fish, Gagnon said. At the park, she plays by herself. Though she has a few close friends, other girls her age rarely come for sleepovers.
As mother and daughter sat cross-legged on the carpet, Elaine pulled toys from a Ziplock bag. She arranged bobblehead animals in a circle -- a menagerie of bulldogs, turtles and toucans.
"I call this one Justin Beaver," she joked.
As her daughter grew older, Gagnon said, she noticed that Elaine seemed to have the mind of a younger child.
Now five years sober, Gagnon drank heavily during her pregnancy with Elaine. She bought rum by the gallon for much of the first two trimesters.
She lost custody of Elaine (her middle name) while still drinking. When her daughter came home, family members told her Elaine might never be able to live on her own. Gagnon sought a diagnosis two years ago in hopes of learning more about her daughter's condition.
"I wanted to know how to help her. I did this (to her). I better fix it, to the best of my knowledge," she said.
The diagnostic team concluded that Elaine was born with an FASD.
"Those caring for and working with (Elaine) need to keep in mind that her behaviors are not willful. She 'can't, not won't," the team wrote.
Elaine is also athletic, healthy and studious. As with many children with a fetal alcohol spectrum disorder, she struggles with math. She also fears arguments and is overly generous.
Children with FAS or FASD sometimes display "dysmaturity," meaning their emotional ages are much younger than their actual ages.
"They want a friend and they want to please. And they are sweet," said Marilyn Pierce-Bulger, a nurse practitioner and member of the Anchorage diagnostic team. "That then makes them vulnerable to individuals who want to take advantage of them."
Elaine has been a kind-hearted companion, Gagnon said, not just an easy baby but an easygoing kid.
The trophies of a busy child's life paper the fridge in the family's South Anchorage apartment: a perfect attendance award; an "A" spelling test (Elaine has an "individualized education plan" for math at school but ranks at the top of the class for reading, her mother said); and watercolor paintings of a yellow sun and a field of grass, with a poem written in careful script: "Rose are red. Violits are blue. You're the best Mommy that I ever new!!"
Gagnon waited until Elaine left the room to discuss her drinking and her daughter's diagnosis with a reporter. "She's so smart. Smarter than a whip. It's hard to talk around her because she catches on way too quick."
The diagnostic team might see subtle hints of FASD in Elaine's face, but her classmates see a pretty girl in a pony tail.
Gagnon had never told Elaine about her disability. "I don't know what I'm going to say," she said. "Hopefully she won't hate me."
Later that night, she said, she decided to talk to Elaine for the first time about fetal alcohol syndrome and her drinking.
"I could have died!" was Elaine's first reply.
Should they share their story with the world, Gagnon asked Elaine, as she recounted later. She wanted people to learn from her mistake, but she didn't like the idea of her precious, complicated daughter -- a kind girl who writes ghost stories about haunted bathrooms and gets her feelings hurt playing board games -- reduced to a label.
"I asked her permission if we could (tell this story) to help someone," she said. Elaine agreed, her mother said. "She doesn't want anyone to feel the way I felt back then."
3. ELIJAH, AGE 8
The boys tell different stories about how Jerrick, 10, fell from a third-story bedroom last July.
Jerrick said his younger brother, 8-year-old Elijah, pushed him. Elijah said Jerrick thought he had super powers and was playing in the window.
He tried to stop Jerrick from falling by throwing him a blanket to hang on to, Elijah said, but the older boy plummeted to the parking lot below.
The fall fractured Jerrick's pelvis and ankle. He wore a back brace for an injured spine for three months.
Jerrick's left foot still bends inward when he runs. The only sign of Elijah in the family's small Government Hill apartment now are photos and artwork on the walls. Elijah appears as an auburn-haired boy with a round face and a toothy, nervous smile.
"He looks like every other kid in class," said his mother, Susan Essary, 32.
Tacked above the couch was one of Elijah's paintings, a shapeless swirl of purple and green, like an angry bruise.
"That's a snowman," Essary said. Elijah's signature trails off one corner of the page. Each letter is backward, as if written in a mirror.
The alcohol his mother drank while pregnant isn't Elijah's only problem. An older brother died at eight months of age from a head injury that happened while in the care of his father.
The couple later divorced. Essary moved to Alaska and remarried.
By the time Elijah entered day care, his mother saw troubling signs. He was aggressive with other children. When he spoke, the words spilled out in a cascade, making him harder to understand than others his age.
In elementary school, Elijah's backward handwriting alerted teachers to the possibility of a learning disability. Writing that trails off a page can be a symptom of pre-natal brain damage to the same nerves responsible for a child's sense of touch, movement and ability to organize.
Elijah's teachers sat Essary down. Had he ever been tested for fetal alcohol syndrome, they asked.
"What's that?" Essary replied.
Growing up in Colorado, Essary saw the U.S. Surgeon General's warnings on liquor bottles but she heard little about the dangers of drinking while pregnant. Even as she learned about FASD, Essary assured herself her son didn't have the disability. He didn't look like the pictures the doctors showed her, the kids with a flat, thin upper lip and closely spaced, almond eyes.
Before her divorce, the boys saw domestic violence at home, Essary said. She assumed then -- and now -- that's where some of Elijah's anger came from.
One day when he was 7 years old, Elijah was told he couldn't play video games. He ran out of the house and started punching a car window. Sometimes he choked the cat.
Astley, the University of Washington expert, said FASD doesn't necessarily mean someone will be violent or aggressive. In fact, the opposite could be the case. Each child is its own mix of disabling effects. Where it occurs, violent behavior might spring from environmental circumstances or a mental illness unrelated to alcohol.
"Alcohol tends to have it greatest adverse impact on more complex cognitive skills like executive function, higher order language skills, abstract thinking," she said.
In Essary's cabinet she keeps the paperwork from Anchorage's FAS diagnostic team. It says Elijah has a form of FASD, with an IQ in the 70s. She drank enough before she knew she was pregnant to cause permanent brain damage and likely behavior problems, but not enough in the third week of pregnancy to create the trio of facial features necessary for a full FAS diagnosis.
Elijah had other problems with movement and coordination, the experts found. For example, he catches a ball by letting it hit his chest and clutching it, the way a much younger child would.
"He's young. I can let the school know he has a form of FASD," Essary said. "We can get him the help he needs with special education."
Only a fraction of children diagnosed with fetal alcohol syndrome live with their biological parents. Some, like Jacob, spend time in treatment. Others grow up in foster homes, or with extended family or adoptive parents, who face formidable parenting demands.
An FASD child might lie when it would be easy to tell the truth. He or she might manage time poorly, chatter incessantly, be quick to anger or become resentful. Like children with attention deficit disorders -- and many children exposed to alcohol in the womb are also diagnosed with ADHD -- they often act impulsively, without considering possible consequences.
As they grow into adults, the brain damage may make it harder to maintain relationships, raise children of their own or keep a job.
Some FASD adults require state-paid public guardians to manage their money, pay their bills and help them shop. Fewer than one in 10 adults with a full fetal alcohol syndrome diagnosis can live without assistance, according to University of Washington researchers.
For now, Elijah lives 1,800 miles from downtown Anchorage, in Butte, Mont., in a 68-bed treatment center for children with serious behavioral, emotional or psychiatric disorders. He still has bouts of anger that doctors try to tame with medication, Essary said.
"They told me that he would basically need help for the rest of his life," she said.
Essary visited Elijah in Montana last week, taking him swimming in a hotel pool and shopping for clothes. He has grown more than 3 inches since she last saw him.
4. SERENITY, AGE 6
For 16 months, Serenity spent weeknights at the home of a therapeutic foster family. On her first night home for good with her mother, Helen Benson, a "welcome home" cake greeted her. The 6-year-old beamed.
Benson heated a pot of stew and picked out all the peas while Serenity drew pictures in the living room of their Muldoon apartment. She quietly colored her hands green with a marker.
Serenity's mood darkened after dessert. She snapped at her sister and at the family's Australian shepherd, Sasha. When her mom tried to convince her to take her pills, she turned her back.
By bedtime, Serenity was ready for a fight. She planned to sleep on the couch, she informed her mom. She planned to stay up all night and would not be going to school the next morning.
Benson calmly disagreed. She tried to lift her daughter, but Serenity stiffened her body to make it harder. On the way to the bedroom, she held on to each door jamb and kicked Benson in the shin.
As soon as she was put to bed, Serenity raced back to the couch.
"Why are you acting like this?" Benson asked.
"Because you're stupid," Serenity said.
On the living room wall, a handwritten sign reminded Helen of appropriate responses to her daughter. "(I) Love you too much to argue" was at the top.
Deflated, Benson stepped out onto the porch, drawing deep breaths in the falling snow. "I wish I could say that, every time I deal with it, it gets a little easier . . . But every single time I have to deal with these episodes, it wipes me out."
Inside, Serenity had surrendered the battle for the couch and vanished to the apartment's only bedroom. Within 15 minutes, she was asleep on top of the covers, the green marker in her mouth.
Helen said she remained optimistic about having her daughter home. Tomorrow might not be anything like this, she said.
The little girl who was such an easy baby and quiet toddler began launching into hours-long rages by the time she was 3. The low point came in 2012 when Serenity purposefully slammed a heavy sliding door on the hand of her year-old sister.
"She became dangerous to not just me and herself, but also to her sister," Benson said. "At that point, I knew, 'OK, this isn't going to get better.' "
Serenity spent three stints at North Star Behavioral Health, an Anchorage treatment center. The staff there recommended she be tested for an FASD. At times, she lived with specially trained foster parents on weekdays as an alternative to full-time residential treatment.
Meeting with the various experts who would determine whether she had fetal alcohol syndrome -- a psychologist, a medical professional, a speech therapist and an occupational therapist -- took months.
"I didn't know whether I wanted it or not," Benson said of the testing. "On one hand, it gives answers. On the other hand, it puts the full responsibility on my shoulders. I have to say, 'I did this to my child.' "
"The key for me was just getting past my own guilt and focusing on what she needs," Benson said.
Now 7 years old, Serenity has a high IQ, a good sense of humor and partial fetal alcohol syndrome, experts found. Emotionally, her behavior is closer to her toddler sister Lexie than her peers at school, Benson said.
Earlier this month Serenity became upset about a kid's meal toy at McDonald's. She had to be carried to the car by Benson and the family's case manager at Denali Family Services, Benson said. Throwing anything she could grab from her car seat, Serenity tried to kick her mother. She hit the case worker instead, putting the woman's arm in a sling for four days.
With the right medication and people around her who understand why she can't always control her impulses, Benson thinks her daughter will be able to live on her own as an adult.
Though her medical diagnosis says she has the hallmark facial features of FAS, she looks to the world like any other first-grader. Lexie, now 2, mistakes pictures of Shirley Temple in DVD movies for her curly-haired big sister.
Since her diagnosis, Serenity also takes two daily medications -- one to reduce hyperactivity and another for mood swings.
"They don't make me playful and they make me fall asleep," Serenity protested on a recent day.
But Benson can remember just three meltdowns in the past three weeks.
"I can handle that," she said. "It used to be three meltdowns a day."
The family's Ford Explorer, which was donated by a local church, idled outside for the drive to school. As Serenity tapped on an iPad, Benson noticed her daughter's knitted brow.
"I'm not talking bad about you, hon," she said.
Serenity made no reply, frowning at the screen.
Benson tries not to judge herself too harshly.
"My own mother was a die-hard drunk," she said.
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If you would like to tell your own story, or have ideas for ways that Alaska can prevent FASD or help people with the disability, please email us at email@example.com. Join the conversation on Facebook or Twitter (use the hashtag #FASD).
What's separates FASD from FAS?
FASD stands for fetal alcohol spectrum disorders, an umbrella term that refers to a variety of disabilities and birth defects caused by a mother's alcohol consumption while pregnant.
FAS stands for fetal alcohol syndrome, a specific medical condition that includes a trio of distinct facial features, undersized height and weight, and damage to the central nervous system. It is considered the most severe of the fetal alcohol spectrum disorders.
What should I do if I think my child has an FASD?
If you recognize the symptoms of FASD in your family and want to know more about the disability, including how to get a diagnosis, a good place to start is by talking with your family doctor or pediatrician.
-- Adults curious about a diagnosis might call the nearest diagnostic team. In Anchorage, that's Assets Inc., (907) 279-6617. Find a list of other regional teams here.
-- Stone Soup Group, a statewide nonprofit that helps families caring for children with special needs, provides basic information on fetal alcohol spectrum disorders and other disabilities, and can be reached at (907) 561-3701.
-- General, easy-to-understand information for families can also be found online at nofas.org.
About State of Intoxication
The State of Intoxication series is a year-long reporting project examining the social costs of alcohol use and abuse in Alaska. The series is controlled and directed by the Anchorage Daily News. It is financially supported by a grant from the Recover Alaska Media Project fund at the Alaska Community Foundation. Contributors to the fund are the Alaska Children's Trust, the Alaska Mental Health Trust Authority, Bristol Bay Native Corp., the John S. and James L. Knight Foundation, Providence Health & Services Alaska, the Mat-Su Health Foundation, Wells Fargo and the Rasmuson Foundation.
By KYLE HOPKINS and MARC LESTER
Anchorage Daily News
Alaska Dispatch Publishing