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  1. Wincik, Stephanie RN, CDDN

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SEVERAL YEARS AGO, the residential care facility where I worked as a nursing supervisor was seeking host families to participate in a Life Sharing program. Life Sharing matches a family with a developmentally disabled individual currently residing in a large facility or group home in an effort to provide him or her with a less restrictive living situation. My mother had recently passed away, leaving me her large, fully accessible home. With my children grown, I was feeling the sting of an empty nest. Life Sharing seemed like the right thing to do.

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The young woman matched with my husband and me was 33 and had been institutionalized for many years with diagnoses of Down syndrome and autism. Unable to communicate verbally, she was proficient in making her needs known through a combination of body language and facial expressions. Although I was a bit anxious at first about taking on such a huge commitment, I convinced myself that it wouldn't be a problem. After all, I was an experienced nurse. How hard could it be?


Rough start

One of my first mornings with Katie answered that question. Through an arrangement with my kind and flexible director of nursing, I'd adjusted my work hours to accommodate Katie's day program schedule. I'd help Katie get ready in the morning, drop her off, proceed to work, and pick her up on my way home. This plan worked for exactly 2 days. On the third morning, Katie refused to leave the house. Despite my attempts to reason with her, she preferred to linger at the kitchen table, enjoying the morning sun streaming through the window. Frustrated, I excused myself to the bathroom and burst into tears. I hadn't called out or been late to work in more than a decade, and now this stranger was disrupting my carefully constructed (okay, rigid) routine.


But then an amazing thing happened. Somewhere in the middle of my tantrum, a thought hit me-a sudden realization that this woman was not a child I could simply bend to my will. She was an adult with her own preferences. Even though she couldn't tell me in words exactly what those preferences were, her nonverbal communication made it clear that they weren't the same as mine.


Yes, she was "supposed" to attend a day program, but who'd decided that for her? A team of professionals who determined what was best for Katie's life based on their own life experiences. Choices made on her behalf were only a reflection of someone else's personal values and standard of living. If Katie could communicate her thoughts, chances are she'd choose an entirely different life than the one laid out for her by her well-meaning caregivers.


That morning, I realized to my dismay that in 30 years of working with intellectually disabled individuals, I'd never treated these men and women with the respect they deserved. Certainly I was giving great clinical care, but that wasn't enough. Deep down I saw them as children in grown-up bodies needing my guidance, instruction, and protection.


Katie and I both ended up making it to work that day, just a little late. I waited a few more minutes, leaving her alone to enjoy the sunshine, then asked her again and she agreed to go.


New perspective

Having Katie in our family has transformed the way we look at people with intellectual differences and, at least for me, has helped change the way I look at life in general. At work, I'm more understanding when a harried staff member is late bringing a patient to an appointment or misses wiping up a bit of lunch left on an individual's shirt. I find myself worrying less about routines and schedules and spend more time just being. I was always taught that people with Down syndrome and autism insisted on keeping strict routines-now I wondered if perhaps I was the more "disabled" one.


In Katie's mind, everything can wait while you enjoy the sunshine. She truly lives her life moment to moment, savoring each experience as it comes her way. Because of her, I'm seeing life through a wider lens. Although I'm not quite there yet, I'm definitely learning to separate what's important from the small daily irritations and anxieties that only seem important but will soon fade away.