Dreaming realistically
By Mary Kaye Ritz
Advertiser Staff Writer
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| Emily Schalow writes her name on a worksheet as her mom, Anne, supervises. Emily, who is autistic, attends Variety School, a private facility that caters to children with learning disabilities.
Bruce Asato • The Honolulu Advertiser |
But Patrick Watarai wasn't prepared for how hard it would be when son Andrew, his firstborn, was diagnosed as a toddler a decade ago as having "special needs."
At the time, the 'Alewa Heights father had dreamed that Andrew would one day make the big tackle, play catch, hit homers.
Now, Watarai celebrates when Andrew simply says a new phrase or strings words together in a new way.
He has learned to dream new dreams for his mildly autistic son, whose learning disabilities have kept him in special education classes for most of his 11 years.
"You don't take little things for granted," said the 47-year-old medical technologist and father of two, now divorced. "You cherish those little steps."
Andrew is among the nearly 23,000 children who currently fall under the protection of the Felix consent decree, which federal Judge David Ezra issued in 1994 after finding the state's treatment of special-needs children inadequate. They comprise about 12 percent of Hawai'i's student population.
Marjorie Schnack, Anne Schalow and Eiko Togo didn't know parenthood would start out so hard, either.
None had an inkling, when they were pregnant, that their babies would be, in Schnack and Schalow's case, autistic, or in Togo's case, mentally retarded.
Yet they have learned to no longer focus on monetary success for their offspring, to long for a row of diplomas lining the wall or for a houseful of grandchildren.
Their dreams, too, would be simpler. And perhaps more profound.
Marjorie Schnack's story
Schnack's hope for her son, Sean Foytich, a blond, loud 11-year-old who has been diagnosed with multiple problems ranging from Aspberger's Syndrome to bipolar disorder, is fairly immediate: that she can send him to a regular school once his days at Variety School end.
Variety, a private school near Diamond Head that caters to children with learning disabilities, only takes 50 children up to ages 13-14.
Her daughter, Kela, and has been tested as mildly retarded and diagnosed as having attention-deficit-hyperactivity disorder and a mood disorder, but Schnack doesn't agree with the test results, because she suspects there's an underlying learning disability. She knows her children better than anyone else does, she says.
She's become an expert on Aspberger's Syndrome, which falls within the spectrum of autism but may also be considered a nonverbal learning disability. She often knows more about her son's condition than the officials from the state departments of health and education, with whom she works on his IEP, or individual educational plan.
After Schnack tucks the children into bed, she goes to her computer to look up new information and update her files. Besides her children's keepsake box of artwork and birthday cards and Mother's Day mementos, Schnack has files upon files of medical data, educational information and a printed list of their four-times-a-day medications: 14 pills total for Sean; six for Kela.
Such research helps set the children's agenda: "Now we have an idea of how Sean perceives the world, not how he should perceive it," the 39-year-old job planner for Hagadone Printing explained.
Besides being their mother, she has become her children's advocate, a role many special-needs parents adopt.
On a recent Saturday afternoon, between morning chores and a cookie-baking session, Schnack, Sean and Kela opened up their keepsakes box and pawed through old treasures. Kela, a cuddly charmer, would hold up a child's handiwork, obviously from art class, and ask whose it was. Age 9, she recognizes her name, but hasn't a 9-year-old's reading skills. She picked up a recent Mother's Day card and stumbled through several words.
As Kela wrapped herself, catlike, around her mother and a visiting reporter, the family talked candidly about their lives, Sean telling the reporter what she could and couldn't write down, and demanding that "Mr. Photographer Person" alternately take/not take certain pictures.
Sean, who was born extremely premature, is going through a rough patch as he enters adolescence. He uses certain mild profanities to see their effect on his mother, but Schnack keeps her cool.
This is not an unintelligent child, despite the fact that before he started at Variety School, learning proved difficult.
His mother hopes to hook him up with a 20-ish male aide to be an older brother to him. And while she occasionally finds herself trying to "fix" the relationship between Sean and her former husband, his father, to whom Sean has trouble attaching though Sean and his sister see their father regularly, she knows she can't, and has faith that they will figure out for themselves.
Anne Schalow's story
Anne Lin Schalow has a lot of faith, too.
Her life has changed dramatically since sweet-faced little Emily was born 10 years ago, but never as much as when Emily, at age 3, completely stopped talking after a birthday party. It wasn't until Emily was 5 that she was diagnosed as autistic.
Today, Schalow, who was born in Thailand, has adjusted Emily's diet in an effort to keep her off medications, and supplements her schooling with daily, two-hour sessions of tutoring. She home-schooled her for a while, rather than have her in special-ed classes, but believed her daughter socialized better in a school setting.
It was tough, at first, for Anne and her husband, Tom, a professor of English at Kobe University who commutes here from Japan, to come to grips with their changing dream for their daughter. Dad, with his doctorate from Princeton, had always been in the top two or three of his class.
"(Having Emily) destroyed our ego," she said in a conference room at Variety School as her daughter did homework in the after-school program. "If we didn't have Emily, our noses would still be up here."
What she has, in place of ego, is a quiet life. When her husband is in Japan half the year, she spends the bulk of her time at home, caring for her daughter, her only social life a weekly tai chi class that she teaches Wednesdays at Ala Moana Park.
"When I socialize too much, I get tired," said Schalow, who has found an enviable strength from within as she came to grips with life's changing dreams.
"I rather go home and refresh myself with my (spiritual) reading. ... I don't complain. Everything is positive now."
When she says, "I have a good life now, I'm happy," you believe her.
Eiko Togo's story
Warren Togo is 50, mentally retarded and happily employed. He was recently chosen as Hawai'i's first recipient of the William Usdane Award for outstanding achievement and exceptional character. Though he lives at home with his widowed mother, he takes care of his own hygiene, gets himself around O'ahu (he knows all the bus routes) and can remember things from 30 years ago.
So why does his 78-year-old mother worry?
Like other special-needs parents — and unlike many typical parents — she worries about her son outliving her.
She, Warren and another son, Stanley, share a three-bedroom home filled with family photos and a table full of snacks for visitors.
Her worries used to be different. Eiko Togo still remembers with a heavy heart the times Warren came home with broken glasses, or without his lunch money, but she was glad he'd rather give in than fight.
"Feel sorry for them," she'd tell her son.
She doesn't have to be as concerned about that now, more about what will happen when she's not there for Warren.
"I always said, as long as I'm living, I'm going to take care of him," said Eiko Togo, the daughter of a minister.
"Many parents worry about preceding their children in death," said Darrell Yee, the 41-year principal of Punahou's Junior School, who was coaxed out of retirement to direct Variety School.
"They just want their children to be independent, to have life skills. Heaven forbid the parents should die early, worrying which institution would take the child."
