Cutbacks Threaten a Mother’s Respite : Disabled Adoptees’ School Hours to Decrease

It was a reaction she has come to expect in supermarket checkout lines, but Sue Eaton was surprised to see it in a pediatrician. The doctor looked down at her newly adopted son, James, an infant with sightless eyes and an immobile, spastic body, and he cringed.

Then the doctor asked why Eaton, the mother of four “normal” children, could take in a son that would require so much care and give so little back.

“He really made no bones about it,” Eaton, 51, recalled, looking at James, now 13. “The doctor thought I had really lost it. He said I should have adopted a child with more potential. Someday, maybe, I’ll run into that doctor again with all my kids. He’ll probably faint dead away.”

Besides her four natural offspring, all her kids include four adopted children and one foster child, all developmentally disabled. Each has varying degrees of brain damage and an assortment of physical woes. Four of them can’t talk, walk, feed themselves or even roll over. Two are blind, two have feeding tubes in their stomachs. According to doctors, they will be lucky to live half a normal life span.

Eaton’s burden makes her a budget victim of the most dramatic nature. Daily care of the children is a daunting proposition, and until now, Eaton could count on a county program to educate and care for her kids six hours a day, five days a week. Now, that valuable respite may shrink as the county Board of Education trims back the program to a four-hour day.

“If they weren’t in school, I don’t know what I’d do. I’d burn out,” she said. “To me, it’s the difference between having very little life of your own and no life at all.”

To keep that chunk of her life, Eaton has been contacting parents of the more than 800 children enrolled in the program, urging them to appeal to the state. If the strategy works as she hopes, the county will have to delay cuts until after their “fair hearings,” effectively postponing the cutbacks until next fall.

“It just seems to me there must be better places to cut from. These kids really need that school. Any disruption in their daily lives, any change, and you can see them decline,” she said. “It’ll make things tougher on me, but they are the ones who will really be hurt.

“They can’t afford to be hurt more than they already have been,” she said.

Four of Eaton’s five disabled children attend the Huntington Beach Special Center, a school that teaches basic skills to about 100 developmentally disabled students, ages 3 to 21. Despite their efforts to keep the school cheery for the students, Principal Virginia Ramos concedes that there has been a gloom hanging over the staff.

“It’s very difficult to have your life put in limbo,” said Ramos, who is among dozens of Board of Education administrators switched to 90-day contracts. “These are very difficult times to be in education.”

Since she took over a year ago, Ramos has met many extraordinary parents, but none, she said, are quite like Eaton.

“Raising one special child is overwhelming, raising five of them is unbelievably overwhelming,” Ramos said. “What sets her apart is she has done it by choice. She has chosen to adopt or be a foster parent to these very special kids. That’s amazing to a lot of people.”

Sue, a former occupational therapist, and her husband, Larry, a physicist at TRW, took James into their home in 1980, just a few months after their youngest natural child, Ryan, went off to kindergarten. “Ryan was gone just a few hours before I got empty-nest syndrome,” she said. “I wanted another baby to take care of.”

In the years that followed, more babies entered their home. Some passed through quickly, making a temporary pit stop on the way to adopting parents. Two of the children, their young bodies worn out by debilitations, died. Three others would join James as adopted children, a number that will grow to five if the paperwork to adopt foster child Amber goes through.

In 1985 came Amanda, an increasingly rambunctious little girl who defied medical predictions of a vegetative life after heart surgery improved her vigor a few years ago. A narrow breathing passageway, which during infancy emitted a whimper with every breath, still garbles her speech, but her cognitive functions have improved tremendously.

“She knows our routines, she knows that we go grocery shopping on Saturday, she knows we eat popcorn Sunday nights. She won’t eat popcorn on Saturday night,” Eaton said.

Amber, 8, came to the family as a newborn in 1984 with a variety of ailments and disabilities. Hospital blunders left her in the womb with very little oxygen for more than six hours, an episode that has left her with the mind of an infant, spastic and mostly blind. She also has to be strapped into a bulky chest brace each morning to cope with severe scoliosis, and her tiny body is periodically racked by seizures that cannot be controlled by medication. She breathes through a tube in her throat and eats through another in her stomach.

“Amber is really a sad, sad little girl,” Eaton said, gently straightening Amber’s gray and pink dress. “She only has two dresses because Mommy doesn’t have time to make more, and the ones in the store won’t fit over her brace. But I like her in dresses so much.”

Three years after Amber joined the family, along came Michael, now 6. Eaton and Jean DeSantis, an instructional assistant who helps with the children, joke that Michael looks like Popeye, partly because of his permanent squint, partly because of the expression formed by his toothless mouth. Michael, whom Eaton calls a “screamer” because of his occasional fits, had all his teeth pulled because he would bite his fingers to the bone and gnaw on his tongue.

His resemblance to the cartoon character is made even greater by an oddly thick left forearm. “Unfortunately,” Eaton said, holding the freckled-faced boy’s arm, “that’s because of a bone tumor.”

The most recent addition to the family is Lynn, not her real name, who came to the Eatons as an 8-month-old in 1989. Like James, Lynn’s brain damage stems from abusive natural parents, who, in both cases, shook and hit their baby. Because her parents are still in the area and don’t know the whereabouts of their daughter, Eaton declined to discuss Lynn’s injuries in detail.

“That’s the really hard part to accept, that these little babies were OK until that happened,” Eaton said. “I don’t know how somebody could do that to these kids. I love them all so much.”

Eaton, weary from bathing the children and carrying them down her home’s flight of stairs, leans back into her couch and tousles Lynn’s still-wet hair. She smiles and nods when asked if people tell her she’s crazy to volunteer for so many hardships. As twangy gospel music plays in the background, she explains it as an almost religious pursuit.

“For us, it’s like our own little ministry. This is what we do. These kids deserve love, and if we didn’t give it to them, I don’t know who would.”