Personal Stories - Kyleigh's Story
I Love the Wind in my Face
On this rainy Sunday morning in Lawrenceville, Kyleigh Kramlich’s family welcomes us into their home. In the basement, “Kyleigh’s World,” Kyleigh says this is a typical Sunday morning. “I was watching some TV,” she spells out, one word at a time, through the IPad-like device attached to the front of her wheelchair. After a robotic voice reads each word aloud, she asks the device to read the entire sentence back as a complete thought. It takes about thirty seconds.
Still, Kyleigh’s mom, Christine, says this technology is incredibly fast and much more nuanced than the earlier point-and-click board that Kyleigh controlled with her head before the eye-gaze technology. This version of “The Talker” (Christine’s name for it), or “Sunshine” (Kyleigh’s name for it because it has a yellow frame), entered their lives about three or four years ago. When she was really little, they just had picture cards.
“What was that like for you?” “It was really hard,” Kyleigh replies. Christine adds, “Hearing her say a word like ‘really’, is a really big deal. When we were using switches, she would have said hard. That would have been kind of it, and you would had had to interpret the rest. That’s what I was missing about Kyleigh before. We didn’t have words like really for her vocabulary. Or different kinds of words for the same things. It makes a huge difference in understanding her interior life.”
Kyleigh is a 15-year-old girl with cerebral palsy. Christine had a uterine rupture while giving birth. Kyleigh was outside the womb, but still inside her mother’s body, for an undetermined amount of time. Both of them nearly died. “It was a really treacherous situation for the both of us,” Christine says. Despite that complication, Kyleigh was born at full birth weight. Because she taught kids with developmental disabilities, Christine suspected some issues pretty early on. She started to notice by the time Kyleigh was about three months that she was twitching and had low muscle tone. At two years old she was still not sitting up. Christine had to plead with Kyleigh’s doctors to pay attention to the signs she was seeing and get a diagnosis that would help them receive services. Christine acknowledges that the reason no one wanted to make a diagnosis was “because of the nature of the injury. No one wanted to point fingers at another practitioner.”
Because Kyleigh is only 15, she currently has the Katie Beckett Waiver and the Community Care Services Program (CCSP), but Christine says these funding sources are still not sufficient to meet their needs. “It’s really hard to find support people. What we’re really needing is someone to come in and hang out with Kyleigh so that she can get her homework done, help her out after school, and when I’m traveling. To find somebody that can manage physical needs as well as emotional and personal needs--just like being a real person--it’s a real challenge to find somebody.” Kyleigh is already on the waitlists for both the COMP and NOW waivers, and has been since she was five years old. “We never hear,” says Christine. “Unless you call and follow-up you don’t ever hear anything. It’s incumbent on me as the parent to keep calling and leaving messages on voicemails that are full. My husband is not working outside of the home right now because this situation is so challenging.” Still, Kyleigh has ambitions. She’d like to go to college - a women’s college is what she’d prefer at the moment - and the Kramlichs all hope that Kyleigh will live independently one day.
Kyleigh has breakfast through a feeding tube that goes straight to her stomach. “I love to eat!” Kyleigh says. Christine explains that the feeding tube was Kyleigh’s decision when she was about eight years old. It helps with extra nutrition and delivering medication.
“Alexa, living room lights on.” Christine says, but they don’t turn on. She says it three different ways. Finally, she says, “Kyleigh, normally runs all of her stuff down here.” Looking at her daughter: “You’re going to have to help me.” Kyleigh looks at her IPad, which says, “Alexa, lights on.” The lights immediately come on. “See,” Christine laughs, “Listens to her. Not to me.”
Kyleigh also has a robotic bedroom door, which she is able to control with her “Eye-Pad.” It provides her with a certain amount of privacy and safety at the same time. If her dad comes to the door, and Kyleigh is not yet ready for his assistance or presence, he can bump the door open about two inches, but she can close it back. Still, if her parents need to enter in an emergency, they can push on it more strongly and walk in all the way.
Kyleigh can also use Alexa to call or text her parents upstairs. She has a huge roll-in shower that can fit her, her wheelchair, and one of her parents or a caregiver. All of these technologies and modifications are an effort to help Kyleigh move toward independent living in the future.
If an elected official visited the Kramlich household, Kyleigh would tell them, “My life is hard because people don’t realize I am a person too in a wheelchair. The thing that’s most important to me is being heard. I just want people to be patient.” Christine would say, “The most important thing for my daughter has been communication so that hopefully she can one day can advocate for herself. She can show people and tell them what her needs are. The second thing is inclusion. Being in her community, with her peers. That has been a primary goal for us and continues to be. That’s not a disability community, that’s a real world community.”
Kyleigh recently transitioned to a new school, Hebron Christian Academy, that previously had not been integrated for students with disabilities. She was being bussed to another school across Gwinnett County, one exclusively for students with orthopedic impairments. Christine says that Kyleigh was not being academically challenged and, even if they’d lived in that neighborhood, she wouldn’t have wanted her to stay there. In fact, when they finally got her into the new school, they decided to have her repeat a grade so she could catch up. She’s much happier and more engaged now.
About a year or two ago, Kyleigh discovered that she loves to run. She discovered a Facebook group called “I Run For…” where people all over the world find and connect with others who may not be able to run themselves because of physical disabilities or illness. They “adopt” those patrons and run for them in public events and trainings. A couple in Indiana found and started running for Kyleigh. They write her letters and send her medals, letting her know that she is part of the reason why they are really enjoying their running practice.
Now, Kyleigh has decided she wants to have her own running practice. She has a running wheelchair where someone runs from behind and pushes her. She went to a camp through the Kyle Pease Foundation where she deepened her understanding and appreciation of running. “Now, they run for each other,” Christine says. Kyleigh is currently trying to qualify for the Peachtree Road Race.
“I don’t care if we win or not,” Kyleigh says. “I love the wind in my face.”