Question: What do you say to the parents of a newborn with special needs?
Answer: You say, "Congratulations."
Theresa Nix came to that realization about nine years ago soon after the birth of her son, Everett, who has Down syndrome.
She remembers getting the news.
It was a Friday. Still flush from labor, she remembers a nurse walking into her hospital room and telling her, and her husband Rob, that their departure would be delayed. On Monday, the nurse said, the geneticist would arrive to talk to them about their son, Everett, who she said might have Down syndrome.
For two days, Rob and Theresa were essentially left alone with their thoughts.
"Nobody came to talk to us [immediately]," Theresa Nix said. "They gave us some pamphlets. Anyway, we were just reeling."
The next 48 hours were a blur of Google searches followed by the inevitable fears (and tears) of the unknown. Next, came pastoral prayers as the couple resolved to "cry it out and carry on."
Looking back on her experience, Nix hopes parents in such situations could feel the joy of the miracle at hand, not sadness and confusion. Set aside the worry, she says. Let the dark cloud evaporate. The birth of any child — a baby, a human heart, a precious person — is a joyous event.
"Don't worry right now, just enjoy the baby," she said.
Later, thinking about her experience, Nix arranged for a videographer to make a short film, a collage of families offering "congratulations" to parents of newborns with developmental disabilities. It's still out there on YouTube, waiting like a warm hug.
Nix didn't know it then, but the video was the first stitch in a comforter she and others would knit to provide warmth to many families of children with disabilities. The video grew into a weekend sleep-away camp, which morphed into a network of families across several states who have bonded to share time and experiences through a nonprofit called Downside Up.
Three years ago, Nix quit her job as a school teacher to devote her full energy to Downside Up. In September, the group will re-launch a learning and play center on East 11th Street called Training Wheels, a place where families with special needs children can gather for structured activities and/or free play.
There's a climbing wall at Training Wheels, and a dance floor, and a toy library and a computer room. There's also a coffee bar where parents can gather and, presumably, relax into the sameness of their shared experiences.
While mainstreaming of children with developmental disabilities along with typically developing children is often a goal, sometimes families of special needs children need to be among their peers where nobody has to say, or hear, the words "I'm sorry." (FYI, typically developing children are welcome at Training Wheels, too.)
One of the group's core values is to "embrace chaos and practice patience." Some of the moms volunteer to be each other's "3 a.m. girls" — code for the person you call in the middle of the night when chaos is right in your face and patience is out taking a smoke.
Momentum for this parent-led movement started seven years ago when Theresa Nix got the idea for a weekend retreat at Camp Lookout for families of kids with Down syndrome and other developmental conditions.
For the first family camp she got a grant to pay for expenses and recruited college students training to be special ed teachers and physical therapists as volunteer counselors. To her surprise 150 campers showed up for Camp Wakawalu, a name made up just for fun.
On the first night of Camp Wakawalu, in the glow of a big campfire, the happiness hovering over the families was unmistakable.
"I remember being at the campfire and [then] walking out into a field by myself, and just crying," Nix says. "I looked up in the sky and said, "Thank you, God.'"
Recalls Kim Leffew, one of the parents at the first camp and now the board chair of Downside Up, "If it had all ended that night, it was like, 'goal accomplished."'
Leffew, whose son Laik has Trisomy 12p (a rare chromosomal condition), said being with other families who understand the joys and challenges of special needs children was liberating.
"I felt like I could talk to someone," said Leffew, a coach and teacher at Girls Preparatory School. "And talk to them about our frustrations, our difficulties, our fears, our expectations; and there is no judgment from those you are talking to."
Happily, that first Camp Wakawalu was just the beginning.
Year after year, parents found fun and a sense of community at the Lookout Mountain camp. In fact, it was so successful that 90 people signed up on the first day of reservations in Year 2.
Still, the weekend camps held every spring were just a short respite for families. Nix struggled to come with an idea for something more sustainable; something that would capture the unbridled fun of children seeing how many Cheetos they could plant on a bathing cap covered in shaving cream.
Through a combination of grants, donations, fund-raising events and elbow grease, Downside Up leaders were able to transform an old antiques warehouse at 621 E. 11th Street into the magic clubhouse called Training Wheels.
Day camps are ongoing there his summer, with regular hours and set activities scheduled to begin in September. Organizers hope the center can be self sustaining through a combination of user fees and donations.
Chattanooga's philanthropic community has embraced the effort. Oversized foundation checks and photographs from Downside Up events grace walls at the Training Wheels center. The board of directors includes representatives from BlueCross BlueShield, Unum, Chattanooga State and other influential groups.
The opening of Training Wheels was originally meant to happen in the winter of 2020, but COVID-19 pushed things back by more than a year. Hence, the re-launch.
Not to worry. For these families, "embrace chaos, practice patience" is more than just a saying.
It's a way of life.
(For more information, visit downsideupinc.org.)
Contact Mark Kennedy at email@example.com.