Growing up Different: Supporting Families with Special Needs

Caitlin Johnson
January 10, 2000

This past Christmas, I came across a photograph of my mother and her brother as children—he impish and mischievous-looking, covered in freckles and she a smiling, tanned girl with black hair cut boyishly short and an arm slung casually around her brother. They look quite a pair and it's easy to imagine them as close conspirators, joint ambassadors of trouble.

But they didn't spend their childhoods hatching plans and cooking up chaos together. Diagnosed as "slow" when he was 4 years old, my uncle Douglas struggled to do what most of us consider simple tasks: communicating, tying his shoes or eating with a fork. And as a result, growing up was fraught with a different sort of chaos all together, for Uncle Douglas and for his family.

In this country, roughly 2.3 million children under age 20 are diagnosed with mental retardation, according to Sharon Davis of The Arc (formerly the Association for Retarded Citizens of the United States), a volunteer organization that works to support children and adults with mental retardation. Studies place the number of Americans—children and adults—with mental retardation at between 2.5 to 3 percent of the population.

Looking at the picture of two smiling children, I found myself thinking about what it's like for a family when one of you is developmentally different than the rest. And about what it takes to help children like Uncle Douglas—who not only learned to tie his shoes but now has a full-time job in a factory and lives on his own—achieve their full potential.

Odd Man Out
Growing up "different" in the 1950s, as my uncle did, was lonely and exhausting, often profoundly frustrating for everyone involved. There were simply no support services, no schools or groups or community living associations. Mental retardation was an "abnormality," and embarrassment, and those afflicted with it were often called "morons" or "imbeciles."

For children like Douglas, the options were institutionalization or home care—a trying, all-consuming, and wholly unsupported endeavor that was not recommended. With no nearby schools equipped with resources to educate Uncle Douglas as a child, my grandmother Patricia, who refused to put him in an institution, worked to help him learn at home. She labored in near total isolation, knowing no other parents who had faced a similar situation, no others with whom to trade bedtime tips or discipline advice. Sometimes her husband—my friendly and loving grandfather—would return home from a day at the office, see the chaos of the house, and turn right around and leave.

Frustrated and at her wits' end, Patricia fought against the shame and isolation to organize an association for parents of children with mental retardation in her area. My mother remembers the meetings in her house with her mother, ever the fighter, spending hours on the phone trying to get parents together or set up a trip or activity for the kids. She lobbied for access and opportunities for children, not just her own.

For my mother, it was often traumatic. Kids made fun of her brother, which both infuriated and embarrassed her. She remembers Uncle Douglas—who is now among the gentlest, kindest people I know—as a child who, frustrated and furious, would fly into terrible tantrums. "Baby sitters never came more than once," she says. "And I knew from a very early age that our parents were almost at the end of their rope, so I tried to be the quiet, good child."

It wasn't until he was 12 that Douglas was able to go to school, when a neighbor started a school in her home to care for her own child with mental retardation. There, with support, instruction and interaction from his teacher and kids his age, Douglas gradually learned the skills he needed to communicate with others and to control his behavior.

Breaking the Silence
Today, support is easier to come by. The Individuals with Disabilities Education Act (IDEA) Amendments of 1997 and 2004, which build upon the looser regulations of the 1975 IDEA, guarantees kids with disabilities the right to free and appropriate public education from birth to age 21, and requires schools to offer support to and involve the whole family in learning and care.

More then ever before, children and youth with disabilities are interacting with regular-education students, getting jobs, going to college and living full lives. Ninety percent of children with developmental disabilities were held in institutions before IDEA was passed in 1975. According to LD Online, three times as many are enrolled in colleges or universities today, and twice as many 20-year olds with developmental delays are working.

Largely because of the support he and his family received later in his youth, Uncle Douglas now works at a factory in Toronto where he makes resin that coats sinks, baths and hot tubs. He takes the bus to work, does his own grocery shopping and, with the help of a social worker who checks in on him every 2 weeks, has managed to live successfully on his own for several years—all things childhood doctors predicted he'd never do.

Though we've made progress, our challenge in the new millennium ought to be to ensure that all children get the attention they need, regardless of disability, and that all families are supported. From decreasing the stigma surrounding disabilities to promoting smaller class sizes, early education and before and after school care, the way adults treat this issue will determine how children with mental disabilities get the education they need to grow and achieve.

If not for the love and efforts of his parents and the community, Uncle Douglas' story might have had a very different ending. "I've lived on my own for 13 years, and had my job for 13 years," he says. " I can take care of myself, and I like it very much. "


The ABCs of Mental Retardation  


Mental retardation is diagnosed when a person's IQ level is below 70-75 and significant limitations have existed in of living and self-care skills since childhood.

Under the Individuals with Disabilities Education Act Amendments of 2004, a child with disabilities is guaranteed services from birth until age 21.

At the center of IDEA regulation is the belief that kids with disabilities can be spurred to achievement when placed in regular-education classes as much as possible. This goal of inclusion has proved beneficial for disabled students and their peers alike and decreased much of the stigma associated with being "different."

Though most schools have programs to support students with disabilities and to help them transition to adulthood, there is still much to be done to increase accessibility and services and help all children achieve their full potential. According to LD Online, twice as many children with disabilities drop out of school, which leaves them at risk for poverty and involvement in the criminal justice system.

The following sources can provide more information on intellectual and developmental disabilities.





Caitlin Johnson is staff writer at Connect for Kids.