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Thread: Adult face of FAS
12-24-07, 11:11 PM #1
Adult face of FAS
The adult face of fetal alcohol syndrome
One person's journey through the years 'miraculous' -- and costly
By MEGAN HOLLAND
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Published: December 24th, 2007 12:01 AM
Last Modified: December 24th, 2007 05:35 AM
Justin Scott sits at his dining room table dabbing pink frosting on a snowman sugar cookie and humming "Silent Night." The chaos of his young niece and nephew decorating their own cookies bubbles around him.
If the 20-year-old could sing to his family maybe he would. But Justin can't form the words to talk. His best communication is through jerky motions of American Sign Language.
There are a lot of things Justin can't do.
Developmentally disabled and cognitively about 6 years old, Justin is an adult face of fetal alcohol syndrome. That he has made it this long still awes his adoptive parents, Allan and Cheri Scott. He was considered a "successfully resuscitated miscarriage" on his birth papers when he was born three months early with a .237 blood alcohol level -- that's three times the legal limit for an adult driver.
There are hundreds of young people like Justin in Alaska, and thousands more that don't look as if they have suffered damage from their mothers' drinking during pregnancy but show other telltale signs, the invisible disabilities -- the poor reasoning and judgment, the hyperactive behavior, the poor coordination.
Alaska has one of the highest rates in the country of fetal alcohol syndrome and fetal alcohol spectrum disorders, an umbrella term that encompasses less severe cases than FAS. The rate in Alaska is five times higher than Arizona, for instance, and four times higher than New York, according to the Centers for Disease Control and Prevention. About 160 infants are born each year in Alaska with FAS or other effects from maternal alcohol use, according to state figures. Part of the reason for this is that Alaska has one of the highest rates of alcoholism in the country.
Justin's biological mother was living in a tent near the Alaska Native Medical Center when she went into labor and a fellow homeless person told her to go to the nearby hospital. She was so intoxicated that it took her newborn 2-pound baby four days to dry out.
Justin was her third child born with effects from her drinking. Justin's older sister would end up in a mental health facility. His other sibling ended up in the care of his mother's family.
Justin's mother visited him while he was in the hospital for the months following his birth but either didn't want him or just couldn't care for him, so the state stepped in. She died when he was about 1 year old; her stomach hemorrhaged, a complication of her alcoholism.
The Scotts took in Justin when he was just a baby. They were a medical foster family and had dealt with tough situations before. When he was 3 years old, they adopted him into their family of four -- Cheri, Allan, and their two biological children, teenagers at the time.
At first, taking care of Justin meant waking up every two hours to feed him. But with time, the Scotts learned to continue with their lives -- with Justin always near them, literally. When the Scotts take their Harley Davidson for a spin, Justin sits in a sidecar.
Back in the dining room of his Hillside home, Justin and his niece, 9-year-old Rosebud, and his nephew, 4-year-old Curtis, listen to Cheri, a woman who strikes one like the type born to be a mom, with a soft voice and seemingly endless patience. She helps them choose among the different shaped cookies, including the Christmas tree, the candy cane or the airplane.
Later, Justin will eat his dinner and take his shower before going to bed, but for now, this is the family fun.
"Oh, Justin, you got a letter from Crystal!" Cheri says, getting right up close to Justin so he can see her in his vision, which is limited to about two feet away.
She hands him the printed letter, highlighted in fluorescent pink. He looks at her and a smile crosses his face. He signs the word for "soft" using both hands. "Soft" is Justin's way of saying he likes something.
Crystal is Justin's girlfriend, a 32-year-old woman with FAS who is cognitively about the same age as him. They met at an FAS camp three years ago. The pair see each other about twice a year and correspond often, both sets of parents helping them communicate. Their affection is usually limited to holding hands but once Justin did kiss her on the top of her head, Cheri said.
Justin takes the letter and brings it close to his face to read, moving his head as he reads the lines. His joy is easy to see.
"For us, we feel so lucky that they found each other," Cheri says. "They want a friend."
Justin has learned to read and type through his Alternative Career Education program with the Anchorage School District, designed to help children like him to learn life skills. When he turns 22, Justin will transition from spending his days at school to a state-funded adult program through the Division of Vocational Rehabilitation.
Living with FAS has drastically changed the lives of the Scotts. Cheri admits it hasn't been easy and often means she is taking care of Justin and not herself. But she's also learned a lot from her sensitive son, she says. He taught her not to raise her voice, and to treat others with kindness; if she doesn't, he senses it and will cry.
"People treat him differently. They are gentle with him," says his father, Allan. "I think he brings that out in people."
Allan, 57, an FAA employee, grew up in Nome. He already knew all too well about the destruction of alcohol before adopting Justin. "A lot of my cousins never made it to adults," he said. Drinking and snowmachining. Drinking and guns. Drinking and the frozen temperatures. They just don't mix, he said.
Heather Amy Scott, now 34, says she felt like an adult too early when her parents adopted her brother. She was jaded and bitter and rebelled. But now she is one of his primary caregivers and she can't imagine him not being her brother.
"He doesn't know any other family than us," she said.
The care Justin has received has, among other milestones, enabled him to progress from wheelchair to crutches. Today, he is able to walk with assistance. Or, as he often does, he usually makes his way around his split-level home by crawling and sliding on the wooden floors.
When he's done with his cookies, Justin picks up a magnifying glass, moving it back and forth looking at his mother. He likes magnifying glasses, little fans, flashlights. The Scotts keep a supply of them around the house. He smiles, hand signals "soft" and pulls his mother close to him to touch noses.
TACKLING THE PROBLEM
Cheri Scott is now an active FAS educator, attending conferences around the country. She is an advocate, wanting more kids to have access to diagnostic tests to determine if they are suffering from some form of the fetal alcohol spectrum disorders. And, she wants expecting mothers to know that no amount of alcohol consumed during pregnancy is safe.
In Alaska, 14 percent of women of childbearing age had been binge drinking within a month of a 2005 study, according to the CDCP.
The total lifetime cost of providing services to an individual with FAS is estimated at $3.1 million. That includes medical costs, therapies and residential care. In 20 years, Justin has had 22 operations.
The Scotts are assisted by the state and local charities, including the care of Catholic Social Services, which has been helping with Justin since 1987. The organization provides caregivers for Justin. With them, he swims at the Alaska Club, eats at the Village Inn and visits the Imaginarium. During the school year, caregivers spend about 15 hours a week with him. During the summer, they spend about 40.
Caring for Justin costs the nonprofit about $40,000 a year. The money to pay for the care comes from Medicaid, grants, and donations.
Cheri says if she could have one wish come true it would be to give her son a voice. She has a recurring dream in which Justin walks into her bedroom and says "Hi Mom," and just starts talking. But for now, the sound of him humming "Silent Night" gives her the joy she craves from her son.
12-24-07, 11:21 PM #2Ninja In TrainingVerified LEO
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213, what do you suppose is the cause of the mother's drinking in Alaska?"Sometimes doing the right thing, is not doing the right thing."
12-24-07, 11:26 PM #3
In the year 2000 Alaska had an estimated population of 626,932 which ranked the state as having the 48th in population. For that year the State of Alaska had a total Crime Index of 4,249.4 reported incidents per 100,000 people. This ranked the state as having the 22nd highest total Crime Index. For Violent Crime Alaska had a reported incident rate of 566.9 per 100,000 people. This ranked the state as having the 10th highest occurrence for Violent Crime among the states. For crimes against Property, the state had a reported incident rate of 3,682.5 per 100,000 people, which ranked as the state 23rd highest. Also in the year 2000 Alaska had 4.3 Murders per 100,000 people, ranking the state as having the 26th highest rate for Murder. Alaska’s 70.3 reported Forced Rapes per 100,000 people, ranked the state 1st highest. For Robbery, per 100,000 people, Alaska’s rate was 78.2 which ranked the state as having the 33rd highest for Robbery. The state also had 405.1 Aggravated Assaults for every 100,000 people, which indexed the state as having the 10th highest position for this crime among the states. For every 100,000 people there were 621.9 Burglaries, which ranks Alaska as having the 31st highest standing among the states. Larceny - Theft were reported 2,685.8 times per hundred thousand people in Alaska which standing is the 22nd highest among the states. Vehicle Theft occurred 374.8 times per 100,000 people, which fixed the state as having the 24th highest for vehicle theft among the states.
12-24-07, 11:34 PM #4Across the board (all ages) Alaska has one of the highest per capita alcohol consumption rates in the nation and the prevalence of alcohol dependence and alcohol abuse, at 14%, is twice the national average of 7% (Gallup Corp. Telephone survey for DHSS, ADA).
12-24-07, 11:37 PM #5Ninja In TrainingVerified LEO
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Wow, that is some chilling information. I didnt realize the crime rate was so bad up there. I also didnt realize there were so few people for the size of the state. There are twice that many people just in the City of Houston alone."Sometimes doing the right thing, is not doing the right thing."
12-25-07, 12:08 AM #6
In Alaska, 1 st and 2 nd offenses are class A misdemeanors 3rd or subsequent offense within 5 years is a class C felony - Citation: §§12.55.035, 122.55.125, 12.55.135 & 28.35.030(b) (2)
12-25-07, 12:10 AM #7
12-25-07, 12:12 AM #8Ninja In TrainingVerified LEO
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Well at least that number is going down. Thats always a good thing."Sometimes doing the right thing, is not doing the right thing."
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