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Features

Rosie
Photo by Kindra Clineff

By Meg Torbert

See also:
'Gosh Darn, I'm Somebody!'
A Full Plate

On the second day of spring in 1996, a baby girl -- pink, healthy and, at eight pounds, four ounces, almost chubby -- was born in the maternity ward of Portsmouth (N.H.) Regional Hospital. Handed into the arms of her delighted mother, Kathy Mack, and surrounded by loving relatives, the baby was named Rosary, in honor of a favorite rose garden.

Rosary, or Rosie, as family members call her, was a beautiful baby: perfect in every way, according to grandmother Lorraine Mack. Aside from a little trouble nursing, she grew into toddlerhood without a hitch, crawling and walking ahead of schedule and talking by her first birthday. She had just learned to say "please" when her mother began to notice that she had odd habits, like pushing doors back and forth and fussing a lot over diaper changes and baths. She wouldn't come when called by name, and she seemed to avoid eye contact. Some quirks could be explained away: while baths were "horrendous," Kathy herself had hated baths as an infant. Other things could not be dismissed so easily. The same child who would cry in terror over a tea kettle's whistle would walk into cabinet doors without a whimper. "I thought to myself, something's wrong," recalls Kathy.

When, in the summer of 1998, Rosie began pulling repeatedly at her ear -- and it turned out not to be an ear infection -- Kathy asked Rosie's pediatrician for an evaluation. Weeks later, given the diagnosis, Kathy refused to believe it. "I had heard of it before, and Rosie wasn't like that," she says. The diagnosis was autism.

Two years later, on a glorious day in July, 4-year-old Rosie is dashing through her grandparents' dining room, a high-energy sprite in a summer frock. Seated around the dark oak table are Kathy and Lorraine Mack and Ann Donoghue Dillon '75, '98G, an autism specialist from UNH's Institute on Disability. Grandfather John Mack hovers nearby. With the addition of various professionals in the field of disabilities, it could be a scene from any one of countless meetings held at the Macks' comfortable Exeter, N.H., home in the two years since Rosie's diagnosis.

Down to earth in the best New England tradition, the Macks are not above laughing at themselves, and Kathy points out how examples of Rosie's artwork have covered all the walls in the room and are now edging their way up the stairs. "This whole place is a shrine to Rosie," she says. "Normal parents reserve it for the fridge." Asked how Rosie's condition has affected the family, they talk about an emotional roller coaster ride and dreams postponed, altered or derailed. Eyes fill with unshed tears when the conversation turns to how overwhelming even the most simple things seem at times.

The Macks are not alone when it comes to families struggling to raise a child with a disability, and after talking a little to some of these families, one begins to get the sense that for them the anxieties of parenthood are multiplied many times over. Adults with disabilities face hurdles as well: prejudice and stereotyping, and physical and legal barriers to work and the world. And it seems that in these situations, an institute or a person who can open doors to new possibilities becomes not just a helping hand, but a godsend.

"Thank heaven for Ann," says Kathy.

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