Justin: “I’m 8 years old. I have cerebral palsy and autism. It makes me sad to feel like I’m different. I wrote a book, Disabilities and Beyond, for kids with special needs. The heroes are my friends who are going through the same things. I told my mom the words, and she wrote them down. I am Ironman in the book because a nurse in the NICU called me that. I felt like a superhero when I held the book in my hands.
When others see disabilities, they see what we can’t do. When we see our disabilities, it just means that we can do things in different ways. I walk differently, but I can walk. My mom and I call it ‘dis-is-able.’ It means we’re always able. We just do it another way. I like to read, color, rap, sing, and play basketball. I love fashion and want to sell clothes for special needs kids.”
Cynterrya: “I was four-and-a-half months along when I found out I was pregnant with Justin. I was on birth control. My daughter, Justis, was about to turn one. I wasn’t ready for another child. I was having contractions the day I found out I was pregnant. They put me on bed rest, but Justin pushed out anyway. He was only two pounds. He wasn’t breathing and his organs were failing. We resuscitated him because I wanted to give him a chance to live. He was in the NICU for four months. The nurses were so good to us, and a stranger bought me a room at the Ronald McDonald House. The doctors told me Justin was mentally retarded and called him a ‘broken little boy’ who would never walk or talk. I refused to accept that, and I fought for him. He spent so much of his life in the hospital. When he came home, I carried his oxygen and heart monitors on my shoulder, held Justin in my arms, and pushed Justis in the stroller.
We started Justin in therapy as soon as possible. In the beginning, all he did was scream and cry. I sat in the car because I couldn’t bear to listen. I also learned to mind my own business because the therapists didn’t need me telling them how to do their job. But then they called me in to see what he could do. He went from a wheelchair to walking with braces to walking without braces. He also began to talk. We have great therapists, but he still has a long way to go. Two weeks ago we found out he was dyslexic. I didn’t tell him because I don’t want him thinking he can’t do something just because a doctor says he can’t. Justin also has autism and we’re on the waiting list for services.
Every day I look at him and think, ‘He’s got this.’ But do I have this? I am his support system, but I don’t have that same mental support to get through the bad days. His mood in the morning dictates how our day will go. He forgets a lot unless I sing it to him. He loves singing. He likes to try for himself and doesn’t like me to do things for him.
Taking care of a child with this many needs is hard every day. I get frustrated, and I lose my patience, but I’m still learning. I cry a lot, and then I pray for strength and keep moving. I don’t let Justin see me sweat or if I have a bad day. Sometimes I go into the bathroom to have a few minutes to myself. Justin always asks me if I’m okay, or do I need anything.
Late one night, Justin said he wanted to write a book. My sister and I joked around for a few days about it, but then I decided to do it. I believe in stepping out on faith because you don’t know what’s possible until you try. Last October, we started the book. We also made a coloring book. Justin’s goal is to normalize kids with disabilities. He was bullied, so his message is that everyone should be treated equally. Children with disabilities can get jobs, live on their own, and do anything. We donated some of the proceeds from the book to the Bridge program at Children’s and Women’s Hospital that helps families through difficult deliveries or fatal diagnosis. We plan on giving a room at the Ronald McDonald House to a family who needs it. Justin loves to pay it forward.
I moved to Mobile from New Orleans after my aunt died to help take care of my grandmother. I did nursing, but I had a bad experience, so I started several businesses. I started with a transportation service for kids whose parents were working and didn’t have access to the bus. I picked them up from school and took them home. I opened a daycare two years ago so the kids would have a place to go after school instead of staying at home by themselves. Then COVID hit, and we shut down. We have reopened and are getting the kids back. I want to provide a mom’s day out for mothers like me raising kids with special needs. I know they need a break.
I see myself going further and taking my kids with me, but I’m not going to be here forever. I teach my kids entrepreneurship and how to take care of themselves when I’m gone. Before COVID, Justin and Justis had a lemonade stand to make their own money. We added hot dogs and candy and used some of their earnings to buy a generator. Customers came from everywhere, even police officers and firefighters. We are going to start it back up the second week of July on Helen Street in Prichard.
My grandmother always said I would try to sell grass to a cow. I work at night when Justin and Justis are sleeping. I get about two or three hours of sleep at night. It’s not enough, but it’s how I make everything work. I didn’t have this ‘get up and go’ attitude until I had kids. My kids have brought out the best in me. I don’t let other people tell them what’s impossible. My job is to show them everything is possible.”
(Buy Justin’s books on Amazon or on their website. https://dis-is-able.com/)