Living With . . .

Living With the Dread of Having a Child Mocked Unfairly

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Tuesday, July 14, 2009

A feature in which readers describe how they have adjusted to life with a chronic illness.

When our daughter was diagnosed at 3 months with a rare chromosomal syndrome rendering her disabled across the board, I had two thoughts. One, selfish lamentation for the difficult years I knew lay ahead for me and my husband; and two, sorrow for the way I just knew the world would perceive little Emily. It was not a question of whether she would be teased but rather what would we do when the inevitable exclusion and mockery began?

Having grown up in the rural Midwest, my experience with those of color, of different faiths, and with special needs was extremely limited. If there was a child with disabilities in the area, he or she was shunted off to a special school. As a high school teacher after passage of the Americans with Disabilities Act, I saw the occasional special-needs student in my classes. Nevertheless, my childhood mind-set was reinforced: Kids with differences exist on the fringes and do not, despite mainstreaming efforts, really belong.

As Emily grew into a toddler and her condition became more obvious, there were certainly stares. To my surprise, in these looks I saw not the judgment I expected, only natural curiosity. Natural to wonder why a child of a certain age was not yet walking, or made odd sounds with no words. These glances were accompanied by understanding and usually a helping hand. I had to wonder: Were people becoming more accepting? Had the new laws forced those with disabilities to the forefront in a way that could not be ignored? Or had I grievously misjudged people's capacity for tenderness and understanding?

As Emily moved into the public school system, I steeled myself for seeing her through a long road of friendlessness and isolation. But again my fears were supplanted by an unexpected reality. Emily's peers accepted her, despite significant cognitive and developmental impairments, with a quiet nonchalance. In class, a neighbor student would help Emily retrieve her worksheet from her folder and remind her to stay on task. In the lunchroom, same-age peers would help Emily negotiate the crowded cafeteria and assist her with her food. Emily went on every field trip, was invited to many birthday parties and graduated from elementary school amidst cheers.

The teasing never happened. No one withdrew. What a watershed to be so wrong about that.

-- Judith Scott, Ellicott City

To share stories about living with chronic illness, send them to health@washpost.comand put "Living With" in the subject line. No more than 250 words, please.


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