She remembers the moment he was born, when he came out screaming and she gazed into his deep, brown eyes. “A breathtakingly beautiful child,” 30-year-old Carole Eagleman wrote in her journal as her new son’s life flashed before her: Jessie as a euphoric high school graduate, as a serious-minded working man, as a proud and handsome bridegroom.
She soon understood it was not to be. Jessie was autistic and suffered from epilepsy; her job in life would be to take care of him. And so she did, learning to delight in the boy he was: a gangly kid with a contagious giggle, who loved all things Elvis, The Three Stooges and his stuffed-tiger “bed buddies.” As Jessie grew into a young man, mother and son found joy in their daily routine—swapping silly jokes as she’d devour a Stephen King thriller and he’d play with his miniature cars; glued for hours to videos, CSI or Animal Planet. “We’d laugh day and night,” says plainspoken Carole, who lives in West Allis, Wis. “Jessie goes to sleep with a smile and gets up with a smile. He’s goofy, funny and precious.”
But now at 67, Carole knows the day she has long dreaded has finally arrived. Battling painful neuromuscular ailments that often confine her to a wheelchair, weakened from two near-fatal heart attacks, she can no longer look after her only child—who is now 37—and lifelong companion. “It’s very scary,” she says. “I didn’t have a backup plan.” With no close relatives to call on, and knowing Jessie couldn’t cope in a group home, she has launched a public search for a family that will take him into their lives. In September Carole wrote to the Milwaukee Journal Sentinel for help finding a family “who would have an empty room where he could bring all his toys and books … and most importantly … who would love him.” Jessie is well aware of his mother’s mission, though when asked about it, her normally chatty son just bows his head. “I’ve never talked behind his back—he knows what’s going on and why,” says Carole tearfully. “He can see the physical pain in my eyes, and it wipes the beautiful smile off his face.”
Carole’s dilemma is hardly unique: According to the ARC of the United States (formerly the Association for Retarded Citizens), more than 700,000 American adults with autism or some form of intellectual disability live with family member caregivers over 60; parents agonize over what’s to become of their children when they die or grow too old or sick to carry the load (see box). “There’s not much out there in terms of services for adults with autism, so parents like Carole are left in a panic,” says Marguerite Colston of the Autism Society of America. When Jessie turned 19, Carole put him on her county’s waiting list for a group home; over time she feared he’d be miserable in that setting. “They called when he was 32,” says the onetime executive secretary who gets by on $1,672 a month in Social Security and veteran’s pension from Jessie’s deceased father, whom Carole divorced when Jessie was 2. “By then I couldn’t pull him out of a happy home.”
She made it that, despite daunting odds. All had seemed well when she gave birth on Aug. 14, 1971. But by the time Jessie had reached 18 months, she’d sensed something was wrong. “Why won’t my child look at me?” she wrote in her journal. “Why is he so stiff when I hold him?” As a toddler, he drove her to tears—kicking, biting, scratching, screaming. “If people visited, I’d give him a magazine. He’d sit and tear it into tiny pieces. Once he went through a whole JC Penney catalog.”
Determined to help him, she took him from doctor to doctor. Finally, at 2, Jessie was diagnosed with autism at a time when the condition was little understood. “My God!” Carole wrote. “My son will never be normal!” Still, she pored over books and scholarly articles and reached out to other parents, eventually helping found the first Milwaukee chapter of the National Society for Autistic Children. Despite twice-weekly speech therapy, Jessie never spoke, even after entering a special-ed program at 4.
Then one day the principal called: Jessie had suffered a seizure. “I was terrified,” Carole recalls. “I didn’t even know what that was.”
Remarkably, one doctor believed, that seizure seemed to trigger something strange and wonderful in Jessie’s brain. Days afterward, “I was holding Jessie in my lap and he said, ‘Wa-wa,'” Carole recalls. “He wanted water! I cried like crazy.” Soon Jessie was forming sentences. Then another revelation: Jessie could read. His mom had tried teaching him with flashcards. “I didn’t know he was catching on. He started reading newspaper ads to me.” He also had an impressive knowledge of TV stars. “It was amazing,” Carole says. “He’d been taking in information all along.”
Accepting him for the quirky boy he was, she took delight in his passions—word puzzles, action movies (“Bruce Willis is No. 1!” he tells a visitor) and chores, or “J-O-B-S,” as he calls them; he has nicknamed the vacuum Ernie the Eureka.
Still, there’s much he cannot do. Though he attended special-ed classes in mainstream schools until he turned 21, basic arithmetic is beyond him; he has never held a job. He dresses and feeds himself, but Carole must help him bathe, brush his teeth and use the toilet. And though he takes medication to control his epilepsy, every couple of months he suffers a seizure. “He holds me tight, digs his fingers into me like I’m a lifeline,” Carole says. But at 5’8″ and 225 lbs., “he’s hard to handle now.”
It will take more than physical strength to replace Carole. “She’s loving, selfless, exceptionally creative,” says Sue Marks, Jessie’s former speech therapist. “She made a happy world for him.”
Soon, Carole hopes, Jessie’s smile may light up another family’s life. Her letter to the Journal Sentinel sparked a piece by columnist Jim Stingl. She keeps the few responses, mostly letters of support, in a folder and often rereads them. Illness hasn’t dulled her resolve that when she finally says goodbye, she’ll have found her boy the perfect home. “I picture him with all his things,” she says. “I see a couple who miss their own grown children, who are ready to love Jessie. I know they’re out there. I just know it.”
To get in touch with Carole Eagleman, write to P.O. Box 14453, West Allis, WI 53214-0453.