Advocating for a Child with Mobility Challenges: Mom knows best. Meet Kisha and Kirsten

Hello, everyone. My name is Kisha Morgan Chaplin and I am Kirsten’s mother. Kirsten is 31 years old. So you wanna tell a little bit about yourself and what your disability is?

My name is Kirsten Chaplin. I was born with spina bifida and scoliosis.

Okay, and I’ll expound on that a little bit. So Kirsten was born with spina bifida. She has scoliosis and she also has hydrocephalus. When she was actually first born, you expect to hear the doctor say, “It’s a girl,” “It’s a boy.” His first words were, “Kisha, your baby has spina bifida.”

 

Tell us about the time when you received your diagnosis.

Luckily, I knew what it was because I had read up on it a little bit, which was just amazing to me. And so I got the diagnosis as soon as she was born. You could actually see the opening in her back all the way to her spinal cord. And because I delivered at a different hospital that didn’t have a very large NICU, she was transferred probably within two hours after she was born to another local hospital. I had to leave the hospital early that morning so that I could go over there to make decisions for her.

So the diagnosis came as soon as she was born. We knew about spina bifida. The hydrocephalus was diagnosed probably a week later, and then the scoliosis was diagnosed probably when she was a toddler. Now, as far as the spina bifida, her first surgery was when she was probably about eight hours old. They did the surgery to repair the opening in her spine. And at that time, I was an unwed teen mom, so I was only 19, and I always made everybody laugh. I tell them I went into the hospital as basically a kid. I literally had to become an adult woman overnight because I had to make a lot of decisions. And of course, it was my child, so I had to put myself second and do everything that I could do in order to learn so much about all these health issues that she could potentially have. 

 

Kirsten, tell us about your childhood. 

Really, I just liked to be around friends and family. It gets challenging sometimes.

What are the challenges?

I guess like when I wanna go places with someone and I can’t, but it’ll be alright.

 

You mentioned that ensuring Kirsten was being treated equally was important to your family, why is that? What did you want to instill in Kirsten?

She grew up in a very rural area so that was much different than being in a city where there were other children with mobility challenges. At her school, she was actually the only child who had mobility challenges. So sometimes, I had to kind of remind them like, hey, we’re not gonna treat her differently just because she has a wheelchair as an accessory. So thankfully, I learned at a very early age how to be her advocate.

So I always made sure that I pointed things out to their attention because I don’t think they were just on purpose trying to single her out or separate her, or even sometimes they thought they were trying to protect her. But every time I made it my business to stress to them how to create a normal environment or let me say a typical environment was best for her. And they would listen, they would listen, so I’m thankful for that.

Especially when she was even in high school, everyone knew her because she was that kid. And luckily, I did work at the high school she was attending. So even the administration, they knew who she was and they always went overboard really to create a typical environment for her, so I’m thankful for that.

A lot of people, especially, of course, grandparents when they see a child that’s going through a lot because she had a lot of surgeries in her lifetime, they tend to want to baby them, want to coddle them and just treat them a lot differently. And even then, I had the mentality that “No, she’s still a child,” she still has to be raised, she still has to learn particular things in order to be successful. And I was lucky because, let me say blessed, because I was able to connect with a lot of people who had gone through the journey.

I took a lot of notes and instructions from them on how to make sure that I did those things. So her doctor, Dr. Fred Peele here, who was just amazing, he was her orthopedic. He did a lot of things like wheelchair basketball, he did wheelchair tennis, he did wheelchair canoeing. And me, of course, being the mom and wanting to make sure she had every opportunity even if she couldn’t do things like little league softball or anything like that I could take her to do these things. Now, I don’t have an athletic gene at all, and come to find out neither did Kirsten because she didn’t wanna do any of it. But I wanted to at least make sure that she was aware she had the opportunity if she wanted to, but again, she did not, which was okay.

Creating that typical type of environment requires you to really listen. Again, I was trying to go out of my way to offer her the opportunity to do these things, but I learned through time, I had to really listen to her. Not all kids want to play tennis. I wanted her to do it just because there was an opportunity for people in wheelchairs to do it. And of course, I had to listen to her because that’s not what she wanted even as a kid. So you have to listen. 

A lot of times you have to correct a lot of people, especially people who love her, because again they wanna coddle her, they wanna go overboard in sheltering her. But she still had to grow up, she still had to go through kid life, she still had to go through teen years, and even now here as an adult. The adult part was probably more of a learning experience for me, and I’m still learning a lot of things. But again, you just have to listen and understand the needs.

 

What is your experience like at the day center? Give us a day in the life of Kirsten. 

Early in the morning, we do devotional and exercise, but we have different activities that we do.

And you’re in charge of what?

Devotion and exercise.

She’s in charge of doing devotion, carrying on devotion, and she’s in charge of exercise.

And playing music.

 

What resources/tools helped you through this journey? How did you learn the best ways to advocate for your child’s needs?

I will say this. The main thing that I remember, and I’m gonna go over another one but this is important too. For the life of me, Kirsten is 31, so this was 31 years ago. I can remember immediately after she was born when I was discharged, and I went over to the hospital where she was, which at the time was Richland Memorial in Columbia, South Carolina, and I was standing at her incubator. Of course, I’m a 19-year-old, overwhelmed because my life literally changed overnight. And I was standing there crying because she was crying. She just had surgery. So by the time I got there, she was waking up and she was crying. 

There was this nurse who pulled me to the side. Again, to this day, I have no idea who she was. I owe her a lot of kudos and a lot of thank you’s. But what she did was she pulled me in a room and she gave me some tissue, and she told me, she said, “Wipe your eyes.” She said, “I know it’s a lot “and I know it’s overwhelming for you, but I’m gonna give you a few pointers.” 

And she said, “Number one don’t let her see you cry often “because she’ll grow up thinking that she causes you a lot of heartaches.” She said, “The other thing is you need to make sure “that you learn as much as you can about all of her issues “because you will need to be equipped with that “in order to communicate with the doctors and in order to become the best advocate for her.” She instructed me to, she gave me a pen and a pad, and she told me, “As you have questions throughout the day, “because you will and you won’t remember them, “write them down, so when the doctors come in “the next day and you see them, you have a list of questions to ask them.” 

The other thing she did was she told me to learn to communicate with their language, because only then will you be able to have a good enough understanding to make the best decisions possible. She took me to the library in the hospital and she taught me how to actually research the things that the doctors would tell me so that I can become versed with it so that I could understand, and so that I could learn to become her best advocate. 

And I did, I did exactly what she told me to. I did it every single day. And after she was diagnosed, I became connected with this organization in Columbia called Family Connection. Family Connection has what’s called peer parents. And so what that is is they give you an opportunity to converse with other parents of special needs children and they try to match you with a parent of a special needs child that has the exact same diagnosis your child has, so that they can give you some instructions or just give you some help on how to navigate and how to do some things.

They also had parent support groups, which I was able to attend. And one of her doctors, who was her neurosurgeon, actually was doing support group sessions too back then for parents of children with spina bifida and/or hydrocephalus. So I attended all of those to help give me the knowledge to help give me the tools, because of course, this was a new area to me, I had nothing. So it was those tools that they gave me, that nurse who I met who was life-changing for me, and the Family Connection family, and even now they still support a lot of people in the Midlands area.

 

 

The Families and Stories Campaign is a series of interviews that feature parents of children with disabilities. With topics ranging from transition to adulthood for youth with disabilities to child development milestones, parents, caregivers, and children share their individual joys, fears, and struggles with caring for and being a young person with disabilities. 

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