This is a painful book--painful for the author to write, uncomfortable for the reader to experience. It also is an honest book, one that deals frankly with the naked angers, the gnawing guilts, the futile fantasies that so often are glossed over in accounts written by parents of handicapped children.
George and Rainelle Harris were 19-year-old college sophomores living in a trailer when they became the parents of Jennifer, born two months premature and in need of immediate heart surgery. Emotionally, financially and in many other ways unprepared for parenthood, the Harrises found themselves embarked on a series of frustrating encounters with medical, educational and social service establishments. Dismay began when they noticed their baby didn't react to loud noises. Two audiological examinations gave evidence of only a mild hearing impairment. A third test went further: "Jennifer just doesn't respond to sound in her environment. Her auditory channels function, but her brain doesn't attend to the impulses. We don't know why . . . "
Jennifer was enrolled in a mental health center's infant program, in an effort to find out why, but remained an enigma to the staff. The child had other problems. She was seriously underweight, walked with feet splayed outward and cried almost constantly. When she was taken to the Kansas City Children's Hospital for cardiac and orthopedic evaluation, the Harrises were startled to hear the Indian-born cardiologist say Jennifer's behavior was "normal for a retarded child." It was the first time anyone had suggested retardation, and the Harrises were furious. "I wanted to strangle the heart doctor," George Harris writes. "Rainelle was more polite. She wanted him deported."
Entered in a preschool program for the deaf, Jennifer was so frightened her first day there, when headphones were put on her, that her parents made it the last day. A school for retarded children came next, but its major effect was that Jennifer imitated the bizarre mannerisms of her severely retarded classmates.
Taken out of school and kept at home, Jennifer grew increasingly hard to control. What her father found intolerable was her laggard toilet training. The child was ceaselessly in motion, destroyed everything within reach and raged when her parents tried to keep her safe in a homemade basement playroom.
"Jennifer didn't want to be confined, so she would throw her toys against the paneled wall . . . When that tactic got no response she would have a bowel movement and then smear it all over everything, as if to punish me for locking her away . . . Sometimes as Rainelle and I sat listening to Jennifer wreaking havoc in the basement, the odor of excrement wafted up to us. Each of us waited for the other to move first, to face the onerous task of cleaning up the mess. I was tired of this constant burden."
A behavior-modification school was next on the 4-year-old's pilgrimage, but her gains were limited and toilet training was not among them. "I knew," the author writes, "the time was fast approaching when I could not stand to live with her any longer."
Learning of a foster home program for retarded children, the Harrises reluctantly agreed to placement. "We were 23 years old going on 60, and it was time to rest." Their respite was short-lived. After Jennifer had spent a few days at a diagnostic center for preplacement testing, the center's director called her parents in. "It seems we made a mistake when we diagnosed her previously," he said. "Jennifer is not retarded after all. She tests in the normal range." This eliminated her eligibility for a foster home program whose services were restricted to retarded children.
What next? Jennifer was enrolled in a center for autistic children. But she did not fit that category either. The conflicting professional verdicts: deaf/not deaf, retarded/not retarded, left the child in a diagnostic limbo and her parents in a state of emotional exhaustion.
By the time Jennifer secured admission to the Missouri School for the Deaf, her parents had reached a breaking point. They separated, but came together again when summer vacation meant Jennifer would return home. Hesitant to send the child away again, the Harrises sought a public school with an appropriate special education program. The one they found proved so unsatisfactory that they demanded a hearing with the school district officials. After a stormy encounter, the district agreed to assume the cost of Jennifer's tuition in a private school.
There was to be one more change. George Harris, having completed work toward his doctoral degree in psychology, was offered a counseling job in Kansas, and his move to that state made Jennifer eligible for the Kansas State School for the Deaf. She entered at age 8, and still is there, seemingly unaffected by the fact that her parents are divorced. Now 13 years old, she has learned sign language, has acquired some social skills and has begun prevocational training for a sheltered workshop program. What the future holds for her is anyone's guess.
While it is impossible not to empathize with this unlucky child and her troubled parents, the tone of the book's final chapters made me uneasy. Seemingly unable to resist demonstrating his professional insights, Harris offers largely self-justifying retrospective analyses of his feelings and actions toward his wife and daughter. His book would have been stronger had he stayed with the tale he began: An anguished father transformed from a youth intimidated by officialdom to a knowledgeable and aggressive defender of his child's right to receive the services best suited to her needs.