by Wendy Bulawa

Created on: April 28, 2010

The physicians and nurses in the NICU were very concerned that our newborn daughter wouldn’t successfully feed. Before even allowing us to offer her a breast or bottle, they placed an IV in her arm—causing a massive infiltrate which scarred her for life. On that day, we witnessed the lack of faith and low expectations displayed by medical professionals of varying years of experience, simply because our daughter was born with Down syndrome. Because of her medical diagnosis, she was viewed insensitively as a classic textbook example requiring standard steps of care—not as an individual with a diverse range of abilities.

Inevitably, and completely contrary to textbook expectations, our daughter not only emptied one bottle of formula, but nearly two on her very first feeding—with no issue whatsoever. In the end, she outsmarted them all and we were proud as punch. This poignant example set the tone for how we would parent our child, opting to set high, but realistic expectations, and encourage her to do her best—just as most parents do-even if their children are typical. 

When it comes to expectation setting, parents of children with special needs tend to adopt a different perspective than parents of typical children. What seems important one minute isn’t as relevant the next. Children with special needs help prioritize what is worthy of a tantrum, stress or even praise. And, milestone charts for children with special needs don’t really exist. Some generalizations have been formulated—using deviations from typical charts—but the reality is that there’s no real way of knowing what to expect when the word ‘typical’ becomes void from one’s vocabulary.

“Initially, we were more fearful of the future, but then started learning about all the opportunities and resources available for our daughter,” said Kerri Tabasky, whose 18 month-old daughter Anna, has Down syndrome. “I expect her to do her best, no matter what, and don’t ever let anyone tell her that she can’t do something just because of her diagnosis. We plan for her to go to college, get a job and live as independently as possible and have high expectations for her. At the same time, we want to be realistic. I just feel that if the expectations are higher than what public perception is, she’ll have a better chance of reaching her maximum potential.”

At the conclusion of a barrage of early intervention

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