Annie Street is a pretty girl with honey-colored hair, a wide smile and blue, blue eyes. Meeting a stranger, she shyly turns her face to the wall.
Annie will never graduate from high school, drive a car or live on her own. She has full-blown Fetal Alcohol Syndrome.
Sandy Street, Annie's adoptive mother, said, "To see Annie, you do not think she is affected by alcohol. But she is very affected."
"... That has always been my goal, with the Lord's help, to make her seem as normal as possible."
But maintaining that semblance of normalcy is an enormous task. Annie gets by with the full-time support of her parents, back-up from a cadre of professional caregivers and a drug regimen including tranquilizers, antipsychotics and antiseizure medications.
"The problem is, this is for the rest of her life, because a mother had a problem," said John Street, Annie's adoptive father.
When Annie was born, in 1992, her biological mother's blood alcohol level tested at 0.3. The new legal limit for driving is 0.08. The baby, evacuated to the neonatal intensive care unit in Anchorage, nearly died.
Sandy explained that she felt a calling after her own three children were grown to take in and nurture a handicapped child. The Streets had signed up to provide foster care.
"We had a call to go to see a little girl and make a decision, because her life would be very involved," Sandy recalled.
"She came to live with us on the eighth of December and has lived with us almost nine years."
The medical bills for Annie's first month of life added up to about $70,000. The baby's liver did not work. She was hypersensitive to light and noise. She had seizures, refused to eat and went rigid when touched. She did not, and still does not, sleep unless she is tranquilized or passes out from the seizures.
"When we brought her home, she was basically held 24 hours a day. I just held her and sang to her and massaged muscles that were not there and fingers and toes that were curled," Sandy said.
Everyone knew from the beginning what was wrong with Annie.
The Department of Family and Youth Services social worker involved had tried unsuccessfully to help the birth mother, who had lost custody of previous children, fight her alcoholism. Before Annie was a month old and went home with the Streets, a neurodevelopmental pediatrician gave the official FAS diagnosis.
The state of Alaska's machinery for early intervention went into action.
"The earlier we started, the better off we would be," John Street said.
Frontier Com-munity Services, based in Soldotna, became their central resource. Social workers at Frontier told them who to contact, and the DFYS case worker made the arrangements. Annie had evaluations from medical specialists, physical therapy, occupational therapy and speech therapy. The state of Alaska paid the bills.
The Streets have built their lives around Annie's needs.
At one point, the family moved to another state. But they found awareness of FAS even lower elsewhere and had trouble finding the level of professional support they get here. So they returned, and now live in Nikiski.
"The American people have not even decided FAS exists," John Street said.
When Annie was a toddler, she learned a few words, then forgot them. She became frustrated with her inability to communicate, and a therapist helped her learn rudimentary sign language.
"Annie did not speak until she was 4, 4 1/2," Sandy said.
Because Annie thrives on motion and music, the Streets have a trampoline with extra safety features, swings all over the house and a special play room for her. They have video monitors so they can watch her sleep. Because she has trouble keeping track of what her arms and legs are doing, they have special chairs with foot supports and weighted blankets to give her the tactile support that calms her.
Like most FAS children, Annie forgets things and has a short attention span. Her parents teach her one simple thing at a time, over and over, punctuated with breaks for physical activity. Because an ordinary school is too stimulating and confusing, they have a tutor, Ronda Holben, who comes into their home to work with her. Annie is learning letters, numbers and drawing.
"You have to remember," Sandy said, "that mentally, Annie is not 8 1/2 years old. She is 4 years old."
Alcohol damage is diverse, the Streets said.
When a pregnant woman drinks, ethanol crosses over from her bloodstream and poisons the developing fetus. What that poisoning will mean varies by a family's genetics, the precise stage of development and how much alcohol is consumed. Research suggests that there is no "safe" amount, and people involved with FAS issues recommend that any woman with any possibility of becoming pregnant should avoid alcohol consumption altogether.
In general, the alcohol damages the brain. In some cases, the damage is so severe that it is visible on brain scans and a child's head is unusually small. Higher reasoning skills don't work like they do in most people.
Annie has trouble linking cause and effect and trouble transferring information she "knows" in one situation to a new situation.
John Street told about a recent scare they had. The family traveled out of state to a family wedding and took Annie to a swimming pool.
Annie has done aquatic therapy since she was 3, loves the water and is great about holding her breath. But that day, in a new setting, she was playing with a young cousin and an underwater toy. Something went wrong, and Annie suddenly surfaced coughing up water and gasping for breath. John was able to get her out of the pool and pieced together what had happened.
"She tried to talk to (the boy) underwater."
Sandy added that they have to be what most people would consider "over-protective" of Annie, just to keep her alive. FAS children tend to lack common sense and do impulsive, goofy and even dangerous things to themselves and others, because they just cannot put together the implications in their minds.
Two years ago, the Streets completed the legal process to officially adopt Annie. They have made arrangements that if anything happens to them, one of their adult daughters would become her legal guardian.
They know that parenting Annie will be a lifelong labor of love.
"Just because you have FAS doesn't mean there is not hope," Sandy said.
The Streets talked of helping Annie maximize her potential. Perhaps she can live semi-independently in an apartment attached to their home and work in a greenhouse where she can use her love of gardening.
"She will forever have to have someone keeping close tabs on her," John said.
But the Streets also talk about helping others prevent and cope with FAS. They are working on presentations to make in high schools to impress teens with the real threat of FAS. And they are approaching organizations about someday building a group home where families with alcohol problems can get support for maintaining sober pregnancies and helping alcohol-affected children.
The Streets want society to understand and confront the problem and birth parents to overcome the stigma and guilt so adults can give FAS children the help they desperately need.
"They need to get past it and look out for the kids," John said.
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