Local organization celebrates 25 years of walking to honor loved ones with Down syndrome.
A small group of thoughtful, committed parents came together in Oklahoma City in 1995, not with the intent to change the whole world, but simply to infuse their own corner of it with joy and inclusion. Linked by children with Down syndrome, the families gathered to talk, walk, laugh and enjoy the sunshine with others whose life journeys were more alike than different.
When Marji Robison and her family attended their first Buddy Walk in 1996 at Lyons Park, she remembers feeling normal for the first time in nine months, since her youngest daughter, Breanna, was born with Down syndrome. Lisa Hancock attended her first walk in 2000 at Earlywine Park, when she, Robison and other local parents were also working to establish the Down Syndrome Association of Central Oklahoma as a nonprofit organization. Emily Kongs will participate in her third walk this year, grateful for the families who started the movement 25 years ago to benefit kids like her 2-year-old daughter Madeleine, who has Down syndrome, and hoping to further the work for all those who will come after her.
From humble beginnings with 300 participants to the organization’s largest annual fundraiser, with 6,000 walkers, 700 5k runners and more than $200,000 raised for DSACO in 2018, the Down Syndrome Festival & 5k provides yearround opportunities for kids and young adults with special needs to thrive and a chance for community members to experience inclusion at its finest.
As the walk has gathered steam, so has Hancock’s oldest daughter, Heather, now 35, who has set out on her own personal mission to change the world. A motivational speaker and administrative assistant for the Oklahoma State Department of Education’s Special Education Section, the dream job she worked hard to attain, Heather Hancock’s insight and ideas are called upon regularly by many organizations seeking to better understand and engage with Oklahomans with special needs.
In addition to serving as a self-advocate on the DSACO board, Hancock serves on the Oklahoma City mayor’s committee on disability concerns and as a global messenger for the Special Olympics Oklahoma board. Hancock promotes Special Olympics throughout the state and competes in basketball, bocce ball, swimming and bowling.
“Wanting to advocate for herself, serve on boards, have a job, go to Washington, D.C. to advocate with our congressmen, create workshops for other young adults with special needs all came from being involved with DSACO and the conferences the organization has sent her to,” said Lisa Hancock, also a DSACO board member. “It’s made her so outgoing, empowered her to be
independent and think about what she wanted for her own life.”
Thanks to monies raised from the annual walk, DSACO funds self-advocates to attend national conferences, the Buddy Walk on Washington and to advocate for national bills to assist those with special needs. Along with husband Craig Blackburn, Heather Hancock and countless others had a hand in the successful passage of the ABLE Act, allowing tax-advantaged savings accounts for individuals with disabilities and their families. Though married in a commitment ceremony in 2016, Blackburn remains in New Orleans and Hancock in Oklahoma City because if they were to move, the programs and services they receive through their states’ developmental disability waiver program would cease. Designed to allow people with special needs to participate as active members of their communities, Lisa Hancock says those services are crucial to the impactful lives her daughter and son-in-law are determined to lead.
“They travel back and forth and go to D.C. to lobby for different bills, right now on portability of programs,” said Lisa Hancock. “We’re hoping to get programs transferrable across state lines because if you move, it ends your programs in one state and you have to get on the waiting list in another state.”
Lisa Hancock hopes the way Heather lives her life helps other families realize what people who have Down syndrome can accomplish is truly limitless.
“Their future is really bright, and parents don’t always see that when they are little,” said Lisa Hancock.
Heather Hancock has certainly been an inspiration to Breanna Robison, 23, who also serves as a self-advocate on the DSACO board, makes television appearances and gives speeches to spread awareness of the organization and has attended the national Down Syndrome Summit, thanks to a scholarship funded by the annual walk.
“A lot of people with disabilities would never get to have that experience,” said Marji Robison. “She met people from all over the country and learned about living on her own and getting a job.”
Breanna Robison met her long-time boyfriend through DSACO, and the two enjoy the organization’s annual Valentine’s Day and Halloween dances and monthly social activities for teens and young adults. Robison’s favorite program is Kylee’s Kitchen, microwave-based cooking classes that encourage independent living. The Robison family is navigating what young adulthood will look like for Breanna, finding their desire to support Breanna’s wish to have a paying job confounded by the negative impact gainful employment would have on her Social Security benefits.
“As our DSACO members are getting older, we’re talking more about having workshops on the transition into the challenges of adulthood, like how to find work, how to live on their own and marriage,” said Marji Robison.
On the other end of the spectrum is the Kongs family, just beginning their journey with 2-year-old Madeleine, who loves participating in story and music time at DSACO with older siblings Owen and Claire. As Emily Kongs has gotten more involved in the organization, now wearing her speech-language pathologist hat to provide weekly speech therapy for members, she has been impressed by the support and variety of programs offered, from prenatal through adulthood, including support groups, social events, basketball camp, sign language classes, tutoring and education consultations, most of which are supported by the funds raised through the annual walk.
Like Robison, Kongs found her family’s first experience at the walk in 2017 refreshing. Madeleine was just a baby at the time, and Kongs remembers feeling relieved to see parents not having to worry their children with special needs wouldn’t be able to participate in activities or glance over their shoulders to ensure others weren’t staring or making comments.
“We had never been in a place with so many people who have Down syndrome,” said Kongs. “You can just feel the joy and love of all the people there to support each other. Sharing that common bond at the walk helps me feel we are a part of something bigger.”
Robison, who will help Breanna and Heather Hancock sell cookies at the self-advocate table at this year’s walk, never imagined how the event would grow from its humble beginnings walking a quarter of a mile at a local park with a few hundred participates to thousands expected to gather at the Myriad Botanical Gardens this year. She’s especially grateful that new parents like Kongs still feel the original intent of the walk’s first organizers to create a supportive, inclusive environment.
Kongs encourages metro families with typically developing kids to attend the event to enjoy the fun and allow their children to experience firsthand that children and adults with special needs are just like them. Though a brief informative conversation before the event might be warranted, Kongs encourages parents to let kids experience the event organically, playing beside special needs children in the petting zoo or moon bounces and asking questions if they are inclined.
“Every parent I know with a child with Down syndrome, and older kids and adults with Down syndrome themselves, welcome kids’ questions,” said Kongs, who often engages kids in public who are obviously curious about Madeleine. “I explain she was born with an extra chromosome and that may mean she is smaller or things might take her a little longer than other kids, but otherwise she is no different.”
While important for parents to have conversations with their kids or read books together about inclusivity, firsthand experiences including children or adults with special needs in everyday activities can make the difference between simply accepting others’ differences and truly embracing them.
“You want [kids with special needs] to be invited over for a playdate, included in birthday parties or asked to go to the movies with a group of teens,” said Robison. “You want it to just be a normal thing for kids to be around people with Down syndrome.”
Particularly with school back in session, Kongs hopes kids of all ages are seeking opportunities to practice kindness and inclusion in the classroom. In her professional career, Kongs has long helped students and their parents understand the importance of self advocacy, particularly when it comes to affording kids with special needs the same learning rights and traditional classroom time.
“The research is conclusive that all kids benefit from having differently-abled children in their classrooms,” said Kongs. “There’s no better gift in the classroom than to help children recognize they don’t have to learn, read or write just like their classmates.”
Kongs has realized how she treats Madeleine, whether by expecting her to try new skills in her gymnastics class like the other kids or advocating for her to be placed with kids her own age in a church nursery, will usually be emulated by those around her, whether strangers, family and friends or Madeleine’s siblings. The whole Kongs family strives to live in a way that exudes the golden rule of treating others as they want to be treated. And they will gladly embrace opportunities to help those around them embrace inclusivity, too.
“Parents can encourage their kids to be inclusive by inviting differently-abled children to play on the playground, be part of their group or sit with them in the lunchroom,” said Kongs. “That classmate may be the coolest child they meet all year!”