A New Reality

Karmyn and Kennedy Thomas

Milledgeville, Georgia (Senate District 25)

Karmyn Thomas recently underwent a surgical procedure, receiving botox injections in both legs and had to wear casts on her legs for weeks afterward. The process is meant to help relax her muscles and move her center of gravity, so she no longer walks on the balls of her feet. Karmyn and her twin sister Kennedy, eight, both have autism; Karmyn also has cerebral palsy.

The girls have lived with their grandmother, Rose, for most of their lives. Rose’s son, Karmyn and Kennedy’s father, was killed in a stabbing in his home a few years ago. Rose says that a shining light for her is the girls’ other grandmother, Lynn. “We love each other,” says Rose, “We’re like peanut butter and jelly.” Lynn has custody of the girls’ older siblings, Kayden, 11, and Kensley, 9. 

Even when they were babies, the girls’ parents had a hard time taking care of them, so Rose stepped in to intervene. On August 6, her husband fell asleep at the wheel and totaled his car in Cartersville, Georgia, breaking his leg and arm. Rose had no choice but to take the girls to their mother so she could travel to look after her husband. Just in the three weeks they were with their mother, things went south quickly. She will never forget the feeling when, sitting by her husband’s side in Macon, she got the call that the children had been left by themselves. (Story continues below after slideshow.)

In the last year, with the increased stability of being in their grandmother’s full-time custody, Karmyn and Kennedy are starting to thrive in new ways. Kennedy has gone from knowing just a few words to saying many more and getting close to speaking full sentences. Rose is so proud of the way she can count and say her ABCs. Karmyn’s mobility is improving from the physical therapy she receives through school. She was just recently given orders to receive occupational therapy in the community as well.

One of the hardest aspects of their lives is that Rose has almost no one she can trust or afford to leave the girls with. Last week, when her husband was in ICU from a blockage in his neck, she was running back and forth from the hospital to home constantly. It was exhausting. She reached out to one potential assistant caregiver and was given the quote of $150 per day. On top of the issue of payment, Rose says just finding someone she can trust is really difficult. She explains that she’s from upstate New York and doesn’t really know people or have family here except her in-laws. “I don’t know anyone,” says Rose, “so it’s so hard to find someone you can trust because they’re nonverbal so they can’t tell me if someone is doing something to them.”

Currently, the only funding they receive is through SSI Disability, which helps her take care of them (food, clothing, etc.) and also assists with things like doctors’ appointments and therapies. There is hope that eventually they will be able to receive the Katie Beckett waiver and then a Medicaid waiver because this family would be ideal candidates for that kind of support. At this point, Rose is so busy, she’s not always in a position to research and find out what is available to her.

If given the chance to speak to a legislator, Rose would tell them how important government assistance is in their lives, but what they’re currently receiving is not enough. At this point, she is running all week to doctors appointments, therapies, the autism center, etc. “We need more funding,” Rose says. She speaks with not a small amount of passion about how much she needs respite care she can trust. “I need a break,” Rose pleas. She also needs the ability to find and connect with other parents and resources, but she’s so busy, she can never go to the casual parents nights that she hears about. More than anything, though, she says, “I want my girls to grow up into nice young ladies ...” 

Rose returns to helping the girls get into their pajamas. They are going to relax and enjoy their last few hours of evening. As she does, Rose reflects on how much her life has changed in the last few years, and what it all means to her now: “It’s a job, it’s a battle, but I wouldn’t change it for nothing in the world.”

Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey

Copyright © 2019 Georgia Council on Developmental Disabilities. All Rights Reserved.
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