“Many of us had kids with heart defects, who had to face surgeries,” recalls Picker, the parent of two children with Down syndrome, now ages 34 and 31.  “We had a lot of questions, such as where should we go for therapy?”

Eventually, the group dubbed itself The Up Side of Downs (USOD), became a nonprofit organization, and expanded its mission to provide support, education and advocacy for individuals with Down syndrome, their families and communities throughout northeast Ohio.

“Families started reaching out to us,” Picker says.  “We started talking to doctors and hospitals, who passed along our literature.  We started with fashion shows and celebration dinners, then we became advocates for each other and more involved in school issues.”

Today, The Up Side of Downs offers support groups, education, conferences and social opportunities.  Based in Independence, it employs 11 people and serves more than 1,000 families in 16 counties.  Funding comes from private donations and two annual fundraisers; the upcoming 2nd Annual Sunburst Gala (March 16) and the Northeast Ohio Buddy Walk (August 24), which attracted more than 4,500 participants last summer.  There is no membership fee.

The organization’s community outreach includes sharing information about programming with area boards of developmental disabilities and offering DS 101, a workshop for educators covering how to teach students with Down syndrome.  USOD is also a member of the Employment Collaborative of Cuyahoga County, a network of organizations dedicated to helping individuals with Down syndrome learn job skills and gain employment.

USOD often begins working with families before birth. When desired they partner expectant and new parents with other parents of children with Down syndrome, who are trained as mentors.  They also host a parent and toddler group, which meets regularly in Mayfield Village and attracts families from all over Cuyahoga, Lake, Geauga and Ashtabula counties.  As children grow, USOD offers educational opportunities, such as The Learning Program®, a research-based program specially designed to help children with Down syndrome learn, for preschoolers through seventh-graders.

“It’s offered at four levels,” explains Gina Mitchner, education director.  “While the children are in their class learning with a licensed teacher, the parents are learning with a different teacher on different topics— best practices in reading to individuals with Down syndrome or effective strategies for behavior.  The kids are learning mostly reading and math enrichment, but also some speech therapy and fine-motor and gross-motor activities, and technology integrated throughout the activities, as well.  The techniques are definitely hands on and engaging.”

An annual Strider Bike Camp hosted by USOD allows children with Down syndrome to learn how to ride a bicycle.  Practicing on pedal-free balance bikes instills confidence.

New in February 2019, USOD is launching TEEN (Teen Educational Empowerment Network).  In addition to some academic pursuits, the program focuses on life, job and functional-living skills for children ages 13-18.

“We want to give them skills so they can learn to be more independent as they transition to the adult world,” Mitchner says.  “There’s a different topic every session.  The first topic is building healthy relationships, developing friendships, increasing social skills, and safety awareness.”

Family Grants, which may be used for anything from adaptive dance classes or swim lessons, to speech therapy or medical bills, are offered twice yearly.  (Families may only apply once a year.)  In 2018, USOD offered 71  grants valued at more than $30,000.

“We don’t base it on income guidelines,” says Laurie Kowalski, new parent and family support coordinator.  “We just ask that they donate their time in volunteer hours, if they can.”

As medical care has advanced, the life expectancy of an individual with Down syndrome has risen on average to 60 years, so USOD has added services and programming for adults.  These include the Steps to Independence weekend retreat, held in conjunction with Cleveland State University’s Master of Occupational Therapy program, and Mind Body Soul, which provides life-skills training and social opportunities for those age 18 and older.

Additionally, USOD operates the Artful 21 Gift Shop at their Independence office, which features products made by artisans with Down syndrome, and hosts a monthly dinner and karaoke night for adults with Down syndrome at Toth’s Place in Mentor.

For more information, visit www.theupsideofdowns.org or call 216-447-8763.