Children with FAS: “A Heart Wrenching Experience”
In the countryside of Pullman, Wash., I arrived an hour late at the residence of Virginia. She greeted me with a smile, wave and an open door to her home.
The house was homey and tidy. Books were perfectly aligned on the shelves, the kitchen spotless, and a bundle of yarn with knitting tools lay at the foot of her light blue armchair.
“From the moment they walked in the door, it was mayhem,” Virginia said. The children were loud, obnoxious, and required constant supervision. “They had their own language,” Virginia said, “and the majority of what they said in English didn’t make sense.”
Virginia quickly noticed the children had severe learning disabilities, behavioral issues, and physical problems. All of her kids showed signs of ADHD and dyslexia, and one suffered from cerebral palsy, Virginia said.
Virginia first heard about fetal alcohol syndrome when a friend commented about the children’s physical appearance, she said. After doing some research, she took them to a diagnostic clinic that confirmed all four children had FAS.
According to Dr. Susan J. Astley, director of the FAS Diagnostic and Prevention Network, children with FAS may be short or underweight, have small eyes, a thin upper lip, and a smooth philtrum (the divot beneath the nose), Astley said.
Astley said FAS is caused by alcohol exposure to the fetus during pregnancy and is characterized by growth deficiency, a cluster of facial features, and evidence of brain damage. “More than 80 percent of children diagnosed with FAS are adopted or in foster care,” she said.
“Unlike state adoption agencies, private adoptions have little regulation on disclosure of personal records,” Tyler Helbach, a representative from Northwest Adoption Exchange said. “When it comes to fetal alcohol syndrome,” Helbach said, “there is more concern because it is hard to prepare an adopting family for circumstances if you don’t know the circumstances exist.”
Through the beginning years, Virginia home-schooled the children. She explained her children’s minds in terms of a filing cabinet. “It’s as if someone took out all the papers, threw them on the floor, and shoved them back in the drawer with no order. All the papers are in there, but sometimes they can’t find the right one,” Virginia said.
Astley said, “Even with things such as cleaning their room, they may know how to do it perfectly one day, but others days, it’s like you never taught them. They have no idea where to start.”
Ronda Barnes, Lincoln Middle School’s special education teacher, said she breaks things down into clear, simple tasks while teaching her students with FAS. “They need a lot of structure and patience,” she said.
Educating her children was only a part of Virginia’s challenge. The children constantly were lying, stealing, and getting into trouble, Virginia said. They also had a fascination with starting fires and were very sexual.
One of the boys stole a neighbor’s truck and wrecked it in a field, Virginia said, and the youngest is the only child to have never gone to jail.
For the family’s safety, Virginia removed two of the children, one boy and one girl, from their home. Virginia said the children suffered from reactive attachment disorder; a condition where infants or young children do not establish healthy bonds with their caregivers, affecting the way they form relationships in the future. “These are the kinds of kids that can kill,” Virginia said, “and we had at least two of them.”
The boy “had a volcano inside him,” Virginia said. “He is sweet to your face but will stab you in the back.” Virginia maintains contact, but the boy is currently enrolled at a school for troubled children and living in Tennessee.
The girl is 16 years old and currently living in a mental hospital. She had a fascination with knives and attempted to kill her sister several times with a knife, Virginia said. She also attempted to kill Virginia’s husband.
At age 7, the girl tried to burn the family’s house down. When the police investigated the fire, she openly admitted she was angry that her family escaped and didn’t die. Afterward, the government no longer allowed her to live in the house, Virginia said.
With children with FAS, “you are forced to put motherly instincts with things that are not beautiful,” Virginia said. “Parents have to work to love these kids, and it’s not easy, especially when there are four of them,” she said.
In addition to raising the children, Virginia faced a battle with cancer and struggled with the loss of her husband’s business. Virginia said her family used to be well respected in the community, but after everything with the children, the neighbors have shunned them. “I can’t blame them either,” Virginia said, “there is no way to understand unless you have been through it.”
Virginia said she hopes parents planning to adopt gain understanding. “The children need homes,” she said. “It’s a beautiful thing when they can escape the alcoholic scene, but parents need to have their eyes open and be prepared.” The financial cost of a child with FAS can be triple the cost of a normal child, she said.
Most of all, Virginia said she hopes pregnant women will choose not to drink. “It’s been a heart-wrenching experience. When you live with these kids and watch them try to maneuver through the world, you just don’t want it to be repeated.”
Through it all, Virginia’s positive outlook is unwavering. “The story is still being written,” Virginia said, and insists that she would not be where she stands today without her husband and her strong faith.
“The kids have taught us about God’s grace and forgiveness. I would not give it up for anything,” Virginia said, “but I would not want to repeat it.”
Sources:
Susan J. Astley, Ph.D.: astley@u.washington.edu; 206-617-7949
Tyler Helbach: Northwest Adoption Exchange; nwae.org; 1800-927-9411 xt. 127
Ronda Barnes: Lincoln Middle School, Pullman School Disctrict; 509-334-3411
