Special Needs Spotlight

Expectations of Children with Special Needs

The difference between believing the hype and believing in your child

By Wendy Bulawa Agudelo

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 therapies, IEP meetings, doctor’s appointments, specialist visits, and support groups, parents of children with special needs have digested more than their share. Yet, by enduring these steps, they also gain a renewed sense of being as precious developmental milestones are reached—regardless of how long it takes to reach them.

“Adrian was our first child and his symptoms manifest themselves slowly,” said David Yas of Sharon. “It was painful—even once we had a medical diagnosis. Yet Adrian changed our lives in ways we can barely calculate and helps us to look at things differently. Now we appreciate the small things our son does rather than major milestones.” Yas’ 11-year-old son has PDD-NOS (Pervasive Developmental Disorder - Not Otherwise Specified), a condition on the spectrum that has symptoms associated with classic autism. Yas believes that parents of children with special needs shouldn’t set expectations, rather, never put a ceiling on what your child can do. “We encourage our sons to try everything once. Adrian tried soccer, and hated it, but he loves to swim. You’ll never know what they can accomplish, and children may surprise you by surpassing expectations.”

He warmly recalls a family trip to Disney and the planning that was invested given how much anxiety their eldest son had about flying and the general airport hassle that makes many of us anxious. “My wife practiced going through metal detectors at court houses to help Adrian prepare for the security checks at the airport and we explained what our plans were and what was expected of him. On the day we traveled, he did very well and upon our arrival to Disney, he bounded from ride to ride like the Mayor of Disney. It made us both cry with joy.”

Boston Globe columnist and grandmother to 5-year old Lucy and Lucy’s 5-year-old cousin Adam, recounts the level of expectation that differs between her grandchildren of the same age in a September column. “My granddaughter cannot do all the things that typical kids can. But, Adam doesn’t have the skills and abilities she has. He can field a ball and she can work a room. He sings a whole John Denver song, and she sits and applauds.” The diversity between typical children and those with special needs ranges from almost indetectable to blatantly obvious. What is important is how parents, caregivers, relatives, friends and others set expectations and how those expectations can become the absolute difference between a successful or unsuccessful child.

Tabasky said, “Take it one day at a time. Don’t look ahead to what the future might hold because there are no guarantees with any child.”

David Yas agrees. “You have to enjoy your child for who they are and what they can do today rather than drive yourself crazy thinking about the future.” He concedes, “At some point, you come to peace and stop furiously hoping your child will ‘get better’ and no longer worry about what he or she is going to be -- simply appreciate and enjoy them.” 

Expect the best, and the results will speak for themselves

What can parents truly expect of their children with special needs? The answer is everything!

Whether the handicap be physical, neurological or genetic, individuals with special needs are generally only limited by the barriers set up by those around them. “Children with social emotional deficit or developmental difficulties are the true mountain climbers,” said Brian Gordon, director of the North Shore ARC’s Spotlight Program. “The will to do something pushes aside any point of focus that is negative or debilitating. What is important to note is that one cannot put a cap on potential.” Below are examples of individuals who have special needs—all of whom have aspired to greatness and have accomplished their set-forth goals:

Jim,16, an individual contending with a social emotional deficit commonly associated with PDD-NOS, (Pervasive Developmental Disorder-Not Otherwise Specified) began participation the North Shore ARC’s Spotlight program due to difficulty understanding non-verbal cues. He has since been voted president of his high school class.

Matthew, 17, struggled with social coping challenges related to spectrum disorders, causing him to have few friends. Through active participation in the North Shore ARC’s Spotlight program, this young man has shown incredible ability to do improvisational comedy, to write comedy and act in movies.

Karen Gaffney, 31, is the first person with Down syndrome to swim the English Channel, compete in San Francisco's ‘Escape from Alcatraz,’ and swim across both Lake Tahoe and Boston Harbor. She is an amazing athlete and accomplished swimmer, recognized around the world for her achievements.

Tracey Newhart, 29, founded Tracey's Kitchen. While Tracey has Down syndrome, she never let her medical diagnosis determine her future direction, and instead, put her interest in the culinary arts to work. On July 23, 2008 Tracey enthusiastically opened the doors to the first Tracey’s Kitchen retail bake shop where homemade pies, baked goods, candy bars, and even horse and dog treats are sold. The store, located in East Falmouth, Mass. sells homemade cookies, pies, brownies, muffins and cakes as well as coffee, sandwiches and ice cream. Local gift items with a Cape Cod theme including salt water taffy and Cape Cod potato chips also adorn the shelves.

Carrie Bergeron and Sujeet Desai are a lovely couple who graced the pages of TIME, 20/20, Newsweek, the Wall Street Journal and many others when they married one another three years ago. Both are accomplished black belts in karate and Sujeet today supports his wife and himself as a musician. He plays violin, piano, clarinet, bass clarinet, altosax and drums, and currently travels the world to perform. (www.sujeet.com)

Abigail Agudelo, now 4, appeared in the PBS and DVD series, Signing Time—which teaches American Sign Language. She traveled to Utah for taping at the age of 2, and today teaches her younger twin brothers how to use sign to communicate.

Carey Daly, 20, ofCenterville (Barnstable County; Mass) is the recipient of the 2009 Michael Denmark Award, presented each year at the CIGNA Falmouth Road Race to a single runner in recognition of significant achievement in the face of extraordinary personal challenges. Daly, who has run the CIGNA Falmouth Road Race the last two consecutive years to demonstrate to others what is possible, ran and completed the race again this year—even though he has Down syndrome.

Ashley Wolfe of Watertown is a graduate of Lesley College, and an actress who appeared alongside the late Farrah Fawcett and Cicely Tyson in Jewel, and recently appeared in Mr. Blue Sky which stars Chaney Kley.

Zach Wincent, 19, who has Down syndrome, is enrolled in community college, climbed the Great Wallof China, is a hockey coach, and was named Prom king in high school.

Wendy Bulawa Agudelo is a mother of three young children and resides on the North Shore. Her family is comprised of both special needs and typical children—and a life filled with high and realistic expectations for each of them.