Julia Smarto is a teacher’s assistant at a well-recognized school. In her free time, the 20-year-old teaches dance to preschoolers. Her lifelong friend Kelly Neville, 23, runs a jewelry business with her mother, Karen.
Both women’s success is the result of hard work and unwavering support from their families, who ignored doctors’ “doom and gloom” outlooks when their daughters were diagnosed at birth with Down Syndrome. “Nobody said congratulations,” Karen sadly recalls of Kelly’s birth. “They only said, ‘I’m sorry.’”
Both families were told the things that come naturally to other children—walking, talking, reading, and riding a bicycle—would be difficult for their girls. Yet, Kelly and Julia eventually met all of those milestones.
“We decided, from the day our daughter was born, that there would be no limitations or restrictions on her,” says Linda Smarto, Julia’s mom and program coordinator for the National Association for Down Syndrome (NADS). “We would support her and raise the bar.” The Nevilles treated Kelly the same way.
The young women attended schools with full-inclusion programs, learning alongside their typically-developing peers in general education classrooms. Their moms agree it’s why they work in careers of their own choosing.
One good thing the hospital did do after the girls were born was to provide their parents with a brochure for NADS, a not-for-profit organization that provides support to families of children with Down Syndrome. It was founded in 1961 by a group of North Shore parents who, refusing to follow doctors’ orders, raised their kids at home. They recruited professionals and established early intervention programs at a time when government-mandated services didn’t exist.
NADS continues the work its founders started by:
- Collaborating with other special needs organizations
- Matching new moms and dads with parent mentors who’ve been through the trenches
- Informing families of services available to them
- Educating parents and professionals at conferences, retreats, seminars and workshops
- Hosting fundraisers
- Promoting awareness
Kelly and Julia partner with their moms to represent NADS at medical conferences and schools, giving presentations that foster acceptance and understanding. The goal is to see beyond an individual’s diagnosis and realize that people with Down Syndrome are capable of achieving anything they set their minds to, Linda says.
In honor of World Down Syndrome Awareness Day on March 21—the date was chosen to represent the third copy of the 21st chromosome characteristic of Down Syndrome—Make It Better spoke with Linda about life in the world of disability.
MIB: What positive changes have you seen in the past decade?
Linda: If you watched the Super Bowl, there were two little individuals with Down Syndrome in a McDonald’s commercial. That alone says society is seeing our kids as people who are beautiful on the inside and the outside.
What areas need improvement?
It’s unfortunate, in 2015, when a diagnosis is given, the outlook is gloomy. Ignoring and not including others with special needs is a form of discrimination. Get the word out to children; they are a product of their parents. Jobs and post-graduation services—we need more innovative thinkers, people more willing to provide opportunities.
What is your organization’s biggest challenge?
Connecting with new families. Even if the hospital provides a packet, families won’t always call us.
What is the greatest lesson you’ve learned from raising Julia?
If you love and accept yourself and others, you will have a bright future.
What is your advice to new parents?
Be optimistic. Shoot for the sky’s the limit. Otherwise, you will never know the capabilities of your child.
Got a minute? Watch “I Love My Life” on YouTube to see individuals with Down Syndrome doing just that.
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