Holding a tiny baby in their arms for the first time, many parents who adopt foster children share a hope that their loving touch will be enough to heal the child’s problems.
Jodee and Karl Kulp of Brooklyn Park had this notion 15 years ago when they agreed to adopt four-month-old Liz from Hennepin County.
She was a failure-to-thrive baby, losing weight, refusing to eat and listless. While the Kulps’ care saved Liz from immediate tragedy, they discovered that love alone would not be enough.
Their affectionate hugs had an opposite effect on Liz, whose senses seemed to operate at hypersensitive levels – a grab of the arm or touch of affection caused her to recoil or push away. Liz gradually warmed to her new mother’s touch, but it was 10 years before Karl’s daughter hugged him for the first time.
As a young girl, Liz would go into screaming rages, then behave as if nothing ever happened. She often complained of headaches, stomachaches, and dizziness. While bright and interactive at home, Liz received poor grades in school. Her preschool educators suspected she was mildly autistic. As Liz got older and her behavior did not improve, the Kulps considered putting their daughter into a mental institution.
In an effort to cope with her daughter’s erratic behavior and education, Kulp quit her full-time job as a graphic designer in 1997, taking on select clients to maintain an income. Liz, about to enter seventh-grade, was pulled out of the Robbinsdale School District to be home-schooled.
After nearly two years of experimenting with curriculums and therapies for Liz, the diagnosis of another foster child in the Kulps’ care with fetal alcohol syndrome began to unravel the mystery of the chaos in Liz’s brain.
Liz erupted at a therapy session with no apparent cause, cursing the therapist, shouting, jumping, and screaming, Kulp recalled in a book she and Liz wrote, “The Best I Can Be: Living with Fetal Alcohol Syndrome or Effects.”
With no apparent trigger to Liz’s outburst, the therapist deduced that perhaps Liz’s lunch — a fast food cheeseburger, fries and caffeinated soda — was to blame.
Soon after the tantrum, a psychiatrist told the Kulps that Liz’s behavior showed symptoms of fetal alcohol effects (FAE), a neurological disorder caused by a mother who drinks while pregnant.
FAE’s sister disorder, fetal alcohol syndrome (FAS), is marked by distinct facial characteristics such as short eye slits, droopy eyelids, widely spaced eyes, low or wide bridge of the nose, which often disappear as a child ages, according to Minnesota FAS Web site.
Because Liz’s mother died, they do not know how much or how often she drank while she was pregnant.
Whenever a pregnant mother drinks, she risks damaging or destroying any cells that are forming in her womb at that time.
FAE and FAS are a composition of several, sometimes widely variable, factors. Fetal alcohol syndrome soon may be renamed fetal alcohol spectrum disorder, a name promoted by national experts to reflect the broad nature of the disorder.
Among the myriad disabilities and health problems associated with FAS and FAE are poor processing of language and intellectual skills, poor coordination, height and weight deficiencies, poor memory, bad moral and ethical judgement, impulsive behavior, immune system deficiency and mental retardation.
“You don’t know where the brain is damaged,” said Kulp.
Children who grow up with FAS/FAE often learn to function socially but can be easily manipulated by others because of their poor brain function.
“They’re the ones who will get caught, but don’t know they’re being set up,” Kulp said.
Add peer pressure to a child who is growing up with FAS or FAE, and this can lead to dangerous behaviors.
Seventeen days after Liz’s 12th birthday, and before she was diagnosed with FAE, she confessed to her mother that she had experimented with smoking, alcohol, marijuana and sexual behavior.
So her parents laid down strict rules, keeping certain people out of the house, making sure they know where Liz is at all times, Kulp said. They discourage Liz from hanging out with people who do not respect her and her disability and pay close attention to her friends, making sure her peers understand the risks associated with FAE.
Without parenting and intervention, Liz’s FAE would have been severe, not necessarily from the disability itself but from complications of living with it unknowingly, she said.
“Liz is a healthy fifteen year old, who is a lot of fun to be around, with strong principles and morals.” said Kulp. “She is determined to be the best she can be.”
Liz, 15, looks like any teenager, each finger adorned with one or more rings, three jangling bracelets on her right wrist, long black hair twisted into thin braids and patches of bright makeup painted above her brown eyes. Like many teens, she talked to her mother in banter peppered with colloquialisms, and reacted to her demands with the indignation common to adolescents.
This summer Liz is caught up in a rap and dance group she helped organize, TP7, or The Perfect Seven. She hopes the group will “get big,” she said.
Her mother attempted to explain one reason why Liz wants the group to succeed, but Liz, embarrassed, cut her off – “I don’t want to say that,” Liz said. After she left the room, Kulp explained that if the group becomes popular, Liz has said it would be a chance for her to tell her experiences with FAE to a wider audience.
One mystery of fetal alcohol effects is that, by all appearances, those who have it seem normal. If improperly diagnosed, it can be mistaken for emotional or personality disorders, when it is the brain, not the psyche, that has been damaged.
Liz has 20/20 vision but could not read an eye chart in order to pass the exam. Her eyes are sensitive to the quality of light from fluorescent bulbs, so in the doctor’s office she simply could not focus on the eye chart, Kulp said. Stepping out from under the lights, she read the chart perfectly.
People with normal brain development can filter out certain sounds, such as the hum of fluorescent lights. Liz was unable to do this. In “The Best I Can Be,” Kulp compares this to sitting in a crowded room and trying to listen to all conversations simultaneously.
As a child, Liz complained that some kinds of paper hurt her skin and was too noisy, remarks that their parents once regarded as childish nonsense.
“Fetal alcohol kids often feel light touch as injury, and with a severe injury feel no pain,” Kulp said.
Alcohol can damage a growing child’s brain in such a way that orderly brain functions become jammed and jumbled, and basic brain functions misfire. Too many misfires and a person gets angry trying to cope, or they shut down, ignoring everything.
When Liz would have a sudden screaming fit in the middle of a store, under the buzzing fluorescent lights, surrounded by bustling, chattering shoppers, it was a physical reaction to too many stimuli, Kulp said.
She recently completed a follow-up to “The Best I Can Be,” titled “Our FASinating Journey.” It will be published later this year and addresses Kulp’s understanding of her daughter’s disorder for other parents of FAS/FAE children.
To treat Liz’s neurological disorder, Kulp enlisted the help of doctors, nutritionists and therapists.
Eighteen months after the therapist speculated that fast food was responsible for Liz’s outburst, Liz and her mother identified corn syrup and wheat as the culprits.
Those foods gave a severe sugar highs, followed by crashes as the sugar worked through her system. Getting control of her diet has made the difference, Liz said. She no longer suffers headaches or stomachaches and she goes into rages less often.
While many with FAS/FAE use prescription drugs to improve brain functions damaged by prenatal exposure to alcohol, Liz uses diet and nutritional supplements.
“Diet was the most significant change in her awareness,” Kulp said. “All of a sudden she felt like she was capable.”
At the same time Kulp introduced forms of therapy designed to reproduce the neurological development that Liz skipped as a baby as the growth of her body surpassed her brain function. That Liz learned to skip was a milestone for her mother, something every child learns to do, but used to be beyond her daughter’s ability.
With diet and neurological therapy, Liz has made remarkable strides in her education. In the last 18 months, Liz’s reading comprehension has gone from a third-grade capability, to almost a tenth-grade level.
This summer, with a break from home-schooling, Karl and Jodee have allowed Liz to hangout with more friends, an experience that pushes her boundaries, adds stress, and they have seen a return of more frequent rages.
The toughest thing for Liz remains controlling her anger. When she gets upset her reactions often are extreme. Neighborhood kids have egged her on until “I just snap,” she said. “I can’t control myself when I’m mad.”
When she discovered someone stole $75, her wallet and CDs from her bedroom in June, she punched her hand through her bedroom window.
Even with unconditional love, Liz’s disability has been hard on the family. Kulp has found it difficult to divide her time between her daughter and her husband, she said.
Although Karl loves Liz and sets the house rules to insure her protection, he did not have the affection or interaction with her when she a baby, Kulp said. Because of this there is a sense of distance in his relationship with his daughter.
“I think he has a really hard time, but I think he’s trying really hard,” Kulp said.
She credits her family’s strong faith for persevering, noting that families of children with disabilities have a divorce rate much higher than average.
Kulp, of course prayed for healing for her daughter, “but God does not always grant healing,” she said. “But he had the blueprint [for healing] and I knew he should share it with me.”
Liz may live on her own someday, with therapy and diet she has shown progress, but her parents are waiting to see how capable she becomes.
“As parents what you try to do is keep your kids safe, you try to watch them 24/7,” said Kulp. “I like to see Liz be happy.”
Some facts about FAS/FAE
• According to the World Health Organization, FAS is the is the leading cause of mental retardation in studies done by the United States, Australia, Europe and Canada. The incidence of FAS is estimated to be 1.9 per 1,000 births or about one out of every 500 births.
• FAS and FAE are 100 percent preventable if pregnant mothers do not drink. The U.S. Public Health Service has indicated that there is no safe level of alcohol use during pregnancy, according to the FAS Community Resource Center Web site. Not all women who drink heavily during pregnancy will have a child with FAS. Why some women are more susceptible is not clear; but by not drinking during pregnancy, women can ensure that their babies will not have any prenatal exposure to alcohol and possible alcohol-related effects.
• FAS and FAE are not hereditary, a mother cannot pass them onto her child unless she drinks.
• FAS Day is Sept. 9, and Minnesota FAS/FAE has asked churches with bells to ring them at 9:09 to symbolize the ninth month of pregnancy and raise awareness of FAS and FAE.