A tale of two families and life with Fetal Alcohol Spectrum Disorder
“It shouldn’t be this hard when your child needs services.” – Tonya Clark
The ‘invisible disability’
When Jeanne and Chuck Ketola hosted two young boys, then 7 and 8, from Russia in their home for four days, it took them “about an hour” to fall in love, said Jeanne Ketola. Though they had only planned to adopt one child, “How could you tell the other one no?” Ketola said. In the short time the boys stayed with the Ketolas, they seemed like, she said, “very average-acting, wild kids.” The two boys were best friends-and one of them had a biological sister in the same orphanage. Nine months later, the Ketolas traveled to Russia and adopted all three. Today they are the parents of two sons, aged 16 and 17, and a daughter, aged 18.
Though he has an above-average IQ and reads at the 12th-grade level, the youngest boy, Richard (name changed for privacy reasons), has a host of other issues. He was diagnosed with Fetal Alcohol Spectrum Disorder at age 12. At age 15 he was in trouble with the law, and Ketola learned first hand that the juvenile justice system is not equipped to deal with FASD kids-despite the fact that, according to statistics, 60 percent of adolescents and adults with FASD will be convicted of a crime. Ketola described a nightmare experience in which treatment centers refused to acknowledge and treat her son’s FASD, even though he had a well-documented diagnosis.
“He really falls into the category of an ‘invisible disability,'” she said. “His physical characteristics are slight, but he is not always able to understand boundaries. He mimics behavior, so if he has a circle of friends with undesirable behavior, he can’t resist doing what they do. He’s very impulsive, doesn’t make good choices. He can’t understand generalizations, he is a very concrete thinker. If he learns a rule about one particular thing, he can’t transfer that rule. If someone tells him never to take a pencil off of someone’s desk, he might take a piece of paper and not understand that was wrong because no one said anything about not taking the paper. He has always struggled with time. You can repeat things over and over and they go in one ear and out the other.”
Ketola had a hard time convincing the school district that he had special needs-even though he had been diagnosed with FASD and had an Individualized Education Program, or IEP (an individual plan for the education of a child with special needs) in place. Today, he attends school in a neighboring school district that is more supportive. Asked about Robert’s future, Ketola said: “Very, very scary.”
‘As soon as I knew, I quit’
If there was ever a situation where circumstances conspired against someone, the conception and prenatal life of Crystal Clark is surely one of those. When Tonya Clark was in her 20s, she developed an ovarian cyst that was so serious she lost both the ovary and adjacent fallopian tube. The remaining tube was so scarred that doctors told her she could never conceive. Clark was so convinced they were right that she ended her relationship with her fiancé, who wanted to have children, and began to date an older man who did not. Several years later she conceived the fetus that became Crystal. Along with her joy at achieving an “impossible” pregnancy, Clark was terrified about her future child’s health. “[Before I knew] I went to happy hour after work … partied on weekends,” she said. She wanted to know how the fetus was, and had a number of tests performed. “They said from the ultrasound, her heartbeat looked fine, her spine was fine. The results of the amniocentesis were fine. So I thought everything was fine. I started eating better-vegetables and fresh fruit, drinking milk. And of course taking care of myself meant I quit drinking.”
Crystal’s birth was one of the best things to happen to her mother; Clark went back to college, and then, to law school. Today she is an attorney and children’s advocate.
It was in fifth grade that Crystal began to struggle in school. Clark spent three to four hours every night helping her daughter, but Crystal “just didn’t get it … she tried her best.” By eighth grade, she was “failing everything.” Clark went to the school for help. After testing, she learned that her daughter had an IQ of 70, which is considered a mild or borderline intellectual disability.
Clark sat in a room of school officials who congratulated her on working so hard with Crystal that she exceeded their expectations. For the first time, she broke down into tears. Because Crystal was out-performing their expectations, “she didn’t meet the ‘standard deviation’ and didn’t qualify for special education classes. Yet she was failing all her classes … they were telling me, she couldn’t pass.”
With the help of Dr. Pi-Nian Chang at the University of Minnesota and “reading a lot of statutes,” Clark was able to get services for her daughter under the category of “other health impairments.” She also switched Crystal, who is artistically gifted, to a different school. But she worries about other children whose parents aren’t lawyers. “It shouldn’t be this hard when your child needs services.”
For Further Info: Read our Oct. 3, 2007 feature story on FASD at www.womenspress.com/FASD