BLOOMINGTON, Ind. – It’s October, which typically marks Down Syndrome Awareness Month.
Down syndrome is a genetic disorder that is caused by a partial or full copy of the chromosome 21. About 6,000 babies are born with it every year.
“It is considered an intellectual and developmental disability,” said Lisa Wells with Down Syndrome Indiana.
CBS4 spoke with John Bunde and Cyndi Johnson. Each have daughters who have Down syndrome.
“For me, the journey started in the delivery room,” Bunde recalled. “Frankly, I had no real concept of what that would mean for my daughter. And I specifically remember asking the attending physician two or three times, what does this mean, to sort of look at me and give me some reassurance. And he just said, she’ll be like any other child, she’ll need your attention, she can live life to the fullest.”
Bunde said he and his wife started networking and found support groups who helped them navigate the new journey. He admitted, even to this day, he is fairly impatient. For Bunde, there is a challenge in moving to his daughter Molly’s pace.
“It’s shifting gears to moving at the speed of what Molly is ready to do, which has been great – that’s another thing about the pandemic, it has everything slowed down, take our time – but for me, that’s the greatest challenge is changing my mindset to see it through what her eyes and how she is processing things,” Bunde said.
“I need to be cognizant of, she’s not processing things the same way some of the rest of us are and then, that brings frustration for her because people, especially me, aren’t understanding that and so she gets put second. Then, the guilt that comes with that can be pretty strong.”
Johnson was still pregnant when she learned that her daughter, Rebecca, had Down syndrome.
“We got a call from the genetic counselor saying, ‘Oh, we never see numbers like this. We want you to come in tomorrow for an amniocentesis,’ which is never something you want to hear from a medical professional,” Johnson told CBS4. “They were hard words to hear.”
Johnson said she, too, immediately started networking with other parents who had children with Down syndrome.
Rebecca was full of personality during our interview. She hugged and kissed her mom multiple times and waved to others who were on the Zoom call.
“When we first started the pandemic, there were so many things we couldn’t do and so many limits,” Johnson explained. “We made an unlimited wall and Rebecca put raspberries on the wall, so she gives me at least a million raspberries a day.”
It was evident that Rebecca has a lot of love to give.
“She loves her friends and family so much,” Johnson said.
Johnson said because she is a perfectionist, it has taken her some time to realize that this is not a project.
“At first, when I found out my daughter has Down syndrome – and she’s a pretty high needs kid, she has a lot of medical needs on addition to the developmental delays – I felt like I was throwing everything at it that I had. Any ideas I got, I would just throw at it. I would try to find the next big thing, whether it was the right curriculum for reading or the right doctor for this or the right orthotic for that. I was throwing everything I had because I was such a perfectionist. But she is not a project. She is a person. And I had to remind myself of that and honestly, I still do sometimes,” Johnson explained.
Madalyn Reynolds also joined us on the Zoom call. She has Down Syndrome and has been a Buddy Walk participant for years.
“It’s a big honor,” she said, smiling.
Reynolds works at Chick-Fil-A and described how much she loves her job.
“I love it! I love my job. I have great managers. It feels like a family,” she said.
Down Syndrome Indiana will hold its Buddy Walk on Oct. 31. It is the largest fundraiser the organization has every year. In 2020, because of the pandemic, it will be virtual. The group is asking people to participate from home.
“They can walk as a family, ride bikes as a family, run as a family and they can take pictures and videos and send those over to us to be shared,” Wells said.
The group will also host a scavenger hunt and Buddy Walk Bingo. It plans to stream all of their events on social media.
“The Buddy Walk is an event to raise awareness around Down syndrome. It is also used to raise funds both locally and a very small part, nationally, to support programming and policy,” Wells explained.
So far, the group has raised about 40% of its $100,000 goal.
Down Syndrome Family Connection will host its Buddy Walk in Bloomington Nov. 1. It, too, is planning a virtual event.
“Events can be simple, or you can go all out,” their website reads. “You can also just do online fundraising if preferred.”
Down Syndrome Family Connection plans to put together a compilation of videos to air online.