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A Day in the Life of a Parent of a Child With Autism
Every day is filled with hardship, pain, and love
October 22, 2004
For Families of Autistic, the Fight for Ordinary

Lisa Krieger proved herself the equal of any presidential advance team in planning a first communion for her daughter, Gina, who is 8 years old and autistic.

Months in advance, Ms. Krieger recruited other children to rehearse walking down the church aisle with Gina, and videotaped the procession so she could practice at home. She begged the nuns not to change Gina's place in line, because she might scream or wander off if faced with the slightest deviation.

Ms. Krieger made sure Gina's communion dress was not itchy and let her try it on for a few minutes every day so she would not yank it off when the time came. She found a supplier of unconsecrated communion wafers so Gina would learn the taste and not spit the host back at the priest.

And, on the big day in May, she stationed people throughout the church in Washington Township, N.J., to whisper instructions if Gina got confused. "The end result was she did beautifully," Ms. Krieger said. "But you have to think about everything, know what you're walking into and what's going to happen. I can't prepare her for everything, but I try to eliminate as many variables as possible."

Ms. Krieger's planning made possible what most parents take for granted: a child's participation in family activities and community events like a meal in a restaurant, a trip to Disney World or a movie. None of these come naturally to children with autism, a mysterious brain disorder that affects the ability to communicate, form relationships, tolerate change and otherwise respond appropriately to the outside world.

Exposing Gina to these experiences would have been unthinkable a decade ago, but more and more families with autistic children are finding that techniques that have proved successful in the classroom - behavioral methods that evolved from the psychologist B. F. Skinner, visual instruction and adaptations of the environment - can be tried at home not only to maximize learning for an autistic child but also to improve the quality of life for the rest of the family.

If the skills and behavior of the autistic child improve, experts say, parents and siblings have more choices of leisure and other activities, and less sense of stigma and isolation.

"It doesn't matter if a kid can read and write and do algebra if he can't go out to dinner with his family," said Bridget Taylor, co-founder of the Alpine Learning Group in Paramus, N.J., a school for autistic children that was the model for the neighboring EPIC school, which Gina attends. "To me, half the battle of autism is getting these kids to be active, functional members of their families - and getting the families themselves active and functional."

It is a relentless, labor-intensive and harrowing task, overwhelmingly performed by mothers, that tests the strength of marriages, the resilience of siblings and the endurance of the women themselves, autism educators and medical professionals say. For Ms. Krieger it has meant accepting that her husband's patience with Gina is more limited than her own; being careful not to overburden or ignore her 6-year-old daughter, Nicole; and arranging occasional telecommuting so she can continue working as the director of corporate finance for the Greater New York Hospital Association.

Over the last decade, the number of autistic children receiving special education services nationwide has grown to 140,000 from 20,000, according to the federal Department of Education. While scientists debate what has caused the skyrocketing autism caseload - a real increase in cases, better diagnoses, or the decision not to institutionalize autistic children - there is no question that more and more families are living like the Kriegers, raising autistic children at home and trying to acclimate them to normal activities and routines.

Except for guidance from educators, organized resources for these families are scarce. In New York, there is a support group for siblings on the Upper West Side and religious instruction for autistic children at a few Westchester synagogues. There is also a new Web site from the Autism Society of America and home visits by therapists from special schools. But mostly there are mothers with file folders of information, passed from hand to hand. Fathers often take on extra responsibility for the other children.

Parents with fortitude, time and money have an edge. Ilene Lainer, for instance, had the luxury of leaving her job as a labor lawyer when autism was diagnosed in her second son, Ari, 8. Now she is a fulltime autism mom, prepared to spend as long as it takes to teach her son, who cannot speak, how to live in the world. Take haircuts. First Ms. Lainer took Ari to the barber, as she had her 10-year-old son, Max. The result was a "hysterical, screaming child," she said, and rude comments - "Can't you control your kid?" - from other customers who could not see that the boy was disabled, as they would have if he had been in a wheelchair.

So, with guidance from Ari's teachers at EPIC, or Educational Partnership for Instructing Children, Ms. Lainer tried a step-by-step approach. She trimmed the boy's bangs, one snip at a time, until he could tolerate that sensation. Then she moved on to a daily spritz of water on Ari's face. Finally, she let small bits of hair land on his skin. Eventually, he was back in the barber's chair, even if sometimes in the lap of his mother or father, Steven Kantor.

"Now we can go as a family to get our hair cut on Saturday morning," Ms. Lainer said. "There's no fear of other people being appalled, and we've made it into an outing and all go out to breakfast afterward."

Any excursion away from their Upper West Side home causes Ms. Lainer to "hold my breath that something doesn't go wrong." Dinner at a friend's house is usually fine if Ari can watch a favorite video. But like many autistic children who lack the ability to communicate, but are often strong and fearless, he will scale a floor-to-ceiling wall unit to reach a video of "Barney" or "Toy Story."

Once, Ari pulled the television from the wall, shattering it just inches from other children. Ms. Lainer sent a case of wine to her hosts by way of apology. Then she began a year-long behavioral program to train Ari to ask for anything out of his reach, either by pointing, making sounds or using one of his computer-assisted "speaking" devices.

Meltdowns are routine to these families. Marjorie Madfis of White Plains, for one, knows how easily a plan can veer off course. Wanting her 8-year-old daughter, Isabelle, exposed to Judaism, she enrolled her in special classes and also joined a synagogue. Isabelle did well at a family Shabbos dinner, so Ms. Madfis confidently brought her to a short children's service on Yom Kippur.

Isabelle brought her favorite American Girl doll, and somewhere between the house and the synagogue one shoe fell off. Ms. Madfis and her husband assured Isabelle that they would find it or buy a new one. "But she couldn't let go of it and bounce back," Ms. Madfis said. "We had to take her home."

Autism symptoms vary widely, and the disorder is sometimes coupled with retardation, which makes most teaching techniques ineffective. So Isabelle is considered lucky. In the past year, Ms. Madfis, a marketing manager at I.B.M., enrolled her in a mainstream ballet class and soccer program, sending along a description of Isabelle's strengths and weaknesses and 10 suggestions for avoiding disruptive or ritualistic behavior, which generally occurs when a child cannot follow what is going on.

Ballet was successful; soccer was a disaster. Isabelle could not tolerate the noise and bustle at a game. First she retreated, picking flowers and looking up at the sky while the game swirled around her. Finally, hands over her ears, she walked off the field.

Isabelle's soccer coach, Angel Tinnirello, said her behavior was not that unusual among second-graders on a team that is recreational, rather than highly competitive. The other children readily accepted Ms. Tinnirello's explanation that "it got too noisy" for Isabelle, so "she went over there where it's a little quieter." The referees, she said, required more education. They asked, "Why isn't that kid listening?" when Isabelle took off down the field in the wrong direction. "Just remind her to run with the purple shirts," Ms. Tinnirello said.

Sometimes the very rewards that prevent a tantrum one day can cause one the next if they are withdrawn. One Westchester mother survived a 90-minute drive to her mother-in-law's home with her autistic son by promising him a swim in the local pool and then French fries at McDonald's when they arrived. But, the pool she had been told would open at 10 was closed until noon, and McDonald's would not serve fries until 11.

The child, 7 years old and capable of speaking only a few words, tried to climb the fence at the pool in his fury. At the fast food restaurant, at 20 minutes to 11, he threw himself on the counter when no amount of pleading, or a $10 bribe, would get anyone to serve French fries ahead of schedule.

The mother, whose husband asked that the family not be identified, said her spouse often insisted they attend social events beyond the boy's tolerance - a party at his boss's, a street fair that's too crowded - because he so wanted them to be a normal family. "He doesn't quite accept we have to modify our lives," she said, describing one of the common sources of marital stress.

Another common source of marital stress is a spouse who retreats into work. Jackie Saril, who owns a small marketing company, said her 10-year-old daughter Jami's condition had been a "huge" factor in her divorce. Her husband, she said, "hid at work'' to avoid what was going on at home. Ms. Saril has remarried and has an infant daughter.

A year ago, her goal was to teach Jami to take a shower, a requirement for her to spend three weeks at a sleepaway camp for children with special needs. Jami's speech is largely unintelligible, but she can read. So Ms. Saril posted a laminated instruction sheet in the shower, body part by body part, and Jami mastered it. Still, friends and relatives worried that Jami was too impaired to be away from home for so long.

Ms. Saril batted away their criticism. She had a hunch. And in snapshot after snapshot from Camp Ramapo in Rhinebeck, Jami is smiling. Ms. Saril, more inclined to irony than pathos, cannot look at the pictures without crying.

"It was mostly for Jami, and she had an amazing time," Ms. Saril said. "She swam in a lake, did the color war thing. She dressed herself, even if her socks were inside out. She ate new food.

"But there was a second reason I sent her. I did it for the rest of us. I'm on duty 24-7. I have a husband. I have another child. I have a business. I needed some time for all that. For three weeks, we got to be a normal family. We got to pretend."

© 2003 The E-Accountability Foundation