Supporting Caregivers

Catherine’s Teacher Shares Her Unique Experience Raising A Child With Down Syndrome

October is not only Breast Cancer Awareness Month, it’s also Down Syndrome Awareness Month and I couldn’t let the month pass without acknowledging this cause that’s so close to my heart. This week, we’re featuring Kelly Kile, one of my favorite people and Catherine’s, as well. Along with being Catherine’s teacher, Kelly’s also mom and primary caregiver to her adult daughter, Grace, who has Down syndrome. I’m so honored she’s allowed Beyond The Waiting Room to share her story.

Lillian

A mother’s unique Down syndrome story.Kelly’s story of discovery was vastly different than Lillian’s. At five weeks pregnant, she and her husband, Bruce discovered they were having twins. Twenty years ago, sonograms weren’t as high-tech as they are now, so diagnosing certain birth defects wasn’t easy. Kelly’s doctor mentioned having an AFP Test, which is a pre-natal test that screens for chromosomal problems like Down syndrome and Edwards syndrome. According to her doctor, because she was having twins, the AFP number would be skewed, giving a false positive, so Kelly and Bruce didn’t see the point and decided against it.

“There was an excitement and uncertainty about the twins,” Kelly explains. “Our oldest came a month early because I’d been on bed rest with some blood pressure issues, so we were more concerned about that. Down syndrome never even entered our minds. I was only 33, so it wasn’t like I was an older mom or anything.”

Kelly’s blood pressure was an issue during this pregnancy, as well. Towards the end, her doctor suggested she go to the hospital for a two-hour monitor. During those two hours, the nurses discovered Kelly was in labor and already dilating. She never felt a thing.

She was taken down for a C-section and soon she gave birth to a pair of six-pound bundles of joy. Her son, Tad needed oxygen immediately and they took him away, so she had a chance to bond with Grace. “I remember holding her and she is the tiniest little person I’ve ever seen. With this tiny, tiny perfectly round head and the tiniest fingers. Everything about her was just so precious.”

At that moment, Kelly didn’t realize anything was wrong. But her older sister did. “She told me this later. She said she could tell by the muscle tone when the doctor pulled Grace out first. There was something different, just the way that she flopped.” she recalls.

Kelly didn’t find out Grace had Down syndrome until she was in the recovery room. She remembers having a nice discussion with God. “Okay God, now I can handle twins or I can handle Down syndrome, but you chose to give me both. What’s the deal?”

A mother’s unique Down syndrome story.

In hindsight, Kelly believes that Grace has the best gift she could ever have. Her twin brother, Tad. “Grace has had the best therapist by her side from day one. She has a role model, somebody to copy, somebody to listen to and babble after, somebody to chase, somebody to mimic.”

Besides needing surgery to close up a small heart valve, Grace was a very healthy baby. At 5 weeks, Kelly and Bruce started Grace on a Neuro Educational Development program (NACD) that would hopefully train her brain to work in a different way. For the next two years, they worked with Grace on everything from learning to breath through her nose, exercises that helped her with balance and patterning, which helped her learn to crawl.

Grace and Tad started kindergarten together at their neighborhood school and things went pretty well until fourth grade. “That’s when she started having some realizations that, ‘Hey, I’m not able to do some of the things my friends are.’ So, we started having a little more of the sassy behavior. Everybody was very sweet to Grace and loved her, but I would watch as she’d try to keep up and understand the other girls’ conversations. She would begin to just kind of fall back, knowing that she really didn’t understand or have anything to contribute.”

Kelly and Bruce eventually found the perfect learning and social environment for Grace and she’s been there ever since. “We finally realized she needs friends, real friends. She needs people who are like her.”

A mother’s unique Down syndrome story.

Grace is 22 years old now and is living the life her parents have always wanted for her. “Grace has got what I call a real life,” Kelly says. “She has friends, she has a social life, she has a boyfriend, she’s been a cheerleader. She gets to participate in the things that everybody does that weren’t necessarily available to us in other settings.”

Grace is self-sufficient, loves to paint, loves to sing and is always on the go. According to her mom, she’s definitely no wallflower. When asked what she sees for Grace’s future, Kelly explains, “Right now, she’s content to live right here with us. She has no desire to move out or live anywhere else, so we don’t have that desire for her. If she ever got to the point that was something she was interested in, then we would entertain the thought. But what we say right now is, whatever works best for Grace is what works for us.”

 

— Written by Tamara Devers

 

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Come back next week to meet Catherine’s father, Merle Flakes.

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