Two families share their experiences raising children with disabilities.
Each weekday morning at 9 a.m., Amy Smentkowski boards the Handi-Wheels bus that takes her to the Gibbs Center for Independence, a day habilitation program for adults with developmental disabilities. At 4 p.m., Handi-Wheels, Jefferson City’s paratransit bus service, picks her up and takes her back home after a day of socialization and activity. At 34 years old, Amy has come to find the Gibbs Center as her home away from home. She’s attended the program since turning 21.
“She has her life there, and her friends,” says Amy’s mom, Connie Smentkowski. “I know she likes getting away. After the weekends, especially the long weekends, she is excited to go back. She’s bored being home.”
The Gibbs Center, which began as Easter Seals, was a welcome and much-needed option for Amy when she graduated from the H. Kenneth Kirchner School for the Severely Disabled at age 21. Until that time, a day habilitation program did not exist in the area, leaving people who had grown up with disabilities with few options for socialization and enrichment opportunities.
“When she graduated from Kirchner, there wasn’t going to be anything for her to do,” says Connie. “Those kids needed to have an outlet: they’re out of school and they need to go somewhere. That’s a concern for parents. The kids can’t be home 24/7.”
Amy has cerebral palsy; she understands everything that is going on, she has a fantastic memory, and she can point and use some sign language to communicate her wants and needs. Though she could pull herself to a standing position and stand at one time, she is no longer able to do so. While the Gibbs Center fills a vital role by enriching and improving Amy’s life, it has also made caring for a child with special needs easier in many ways for Connie and her husband, Doug, especially as they get older.
“It really makes a difference for us. We’re getting old,” says Connie. “I’m 75, and you don’t get stronger and better as you get older. I had a hip replacement, a shoulder replacement, and major back surgery. There is constant wear and tear on your body from the lifting. It would be difficult for us to have Amy at home every day. You realize how much more important it is that she has the Gibbs Center, because there will come a day when we can do less and less, and it’s nice to know she has that. We’re thankful she can still be at home with us and we can still care for her.”
Jennifer Turner and her husband, Ben, are also parenting a child with disabilities, but they’re at the beginning of their journey. Their daughter Milleigh, who turns 5 on May 3, has cerebral palsy due to a near-SIDS event when she was 3 months old. She’s nonverbal, though she’s working to communicate with the use of an iPad app. She uses a wheelchair to get from place to place, and she uses a feeding tube for all her nutrition except for one snack each day.
“Milleigh is a pretty opinionated yet happy girl most of the time,” says Jennifer, who is also mom to Mackayla, 12 and Gaege, 8. “She’s definitely the baby of the family, the light of our lives, and we’re so incredibly blessed that she’s ours.”
Though Jennifer knows their challenges will change over time, today, life with Milleigh has become somewhat stable, with fewer hospital admissions and less testing.
“My greatest challenge is wondering if I’m enough, or wondering if I’m doing enough,” Jennifer says. “I think as a special needs parent, most of us wonder if we could have done more or if we’re currently doing all we can now. It’s very much an internal battle.”
Much like the Smentkowski family has found an outlet in the Gibbs Center for Amy, Jennifer was searching for an opportunity for Milleigh to experience something that has brought joy to her older sister, Mackayla.
“Mackayla has been dancing since she was 3 years old,” Jennifer says. “She has her first pair of ballet shoes sitting on a display shelf, and it was always so hard to look at them knowing that Milleigh wouldn’t get the opportunity to wear them or experience the same love her sister has for dancing. Around Milleigh’s fourth birthday, I began thinking that maybe I could change that, and just maybe she could have an opportunity to dance.”
After thinking and praying about it, Jennifer spoke with Lori Hermann, the studio director at Elite Performing Arts. Hermann immediately offered space for Jennifer to teach a dance class for children with disabilities. She calls it “ Dance for All Abilities.”
“I have zero dance experience, so I asked my cousin, Erin Gordon, and Mackayla to help,” Jennifer says. “The original plan was for it to be offered through the summer months only. But once we started and Erin, Mackayla, and I saw the joy on these girls’ faces, we knew we had to continue throughout the year. One day a week they can put their stress and struggles aside and dance it out.”
The class currently has seven girls with diagnoses of autism, cerebral palsy, Down syndrome, and spinal muscular atrophy. In addition to providing a fun, engaging opportunity for the kids, the class provides a valuable service to their parents as well.
“I’ve met some amazing families through this class, and it’s been so fun,” Jennifer says. “We’ve gotten together outside of dance many times now, and in a world where we sometimes feel so isolated and alone, it’s nice to have a group of people who completely understand the struggles of special-needs parenting.”
As a parent of a child with disabilities, Jennifer says she always wonders if she’s doing enough for Milleigh and if she’s properly balancing her needs with those of Mackayla and Gaege. It’s often hard to convince herself that less is sometimes more, she says.
“Ben and I try our hardest to live in the now and appreciate life as it is today,” Jennifer says. “We’re never promised tomorrow, and since we nearly lost Milleigh once, we try our hardest to never take the time we have for granted.”
The fall session of “Dance for All Abilities” begins in August. Girls and boys ages 3 and up are welcome, although class size will be limited.