
McKenzie
My name is Tamara Tuckson, and I’m the proud mom of McKenzie Tuckson. We are advocates for individuals with exceptional needs. McKenzie is a senior in high school and is the president of her senior class. She is a varsity cheerleader and is in the honor society. She is also the first Youth Ambassador for Metro Davidson County who has exceptional needs and is non-verbal. McKenzie has Rett syndrome, which is a rare genetic disorder, and she uses augmentative and alternative communication (AAC) to communicate.
After McKenzie was diagnosed, we started going to the Rett Syndrome Clinic at Vanderbilt. She was the first person to go through the clinic. I didn’t know anything about research. I didn’t know anything about Rett syndrome. I was willing to go because I knew that I couldn’t leave any stone unturned when learning about her diagnosis, which helped me to learn to advocate for her.
I remember the first research study. They asked McKenzie to climb some steps. They put an EEG net on her head and read her brainwaves. I remember learning a big lesson from that: make sure I don’t get our hair done before we go, because they’re going to wet it. McKenzie would arrive with beautiful straight hair and leave with a puffy afro every time. She wasn’t too happy about that part!
Participating in the research not only helped the doctors learn more about Rett syndrome, but it also led to us getting even more tools to help McKenzie. The doctors gave us advice that led us to occupational, physical, and speech therapies. McKenzie learned how to eat with a fork and a spoon and to ride a bike. She got her AAC devices so she could communicate. We went to conferences and learned from other people. All of this was because we’d gone for research, and they pointed us to these other things that would help.
As the years went on, the researchers also connected me with activities that helped me to become a better advocate for McKenzie and other people with special needs. I graduated from the Volunteer Advocacy Project so that I could help other parents with their IEP [Individualized Education Plans] meetings. I presented about our education experiences at the Partners in Education Conference, where I educated parents, teachers, and principals. Dr. Peters at the Rett Syndrome Clinic recommended us to be featured in the Kindred Stories of Disability project, so that we could educate legislators and policy makers about McKenzie’s experiences with AAC. And because of that experience, we went to Disability Day on the Hill to meet with our representative. And now I’m on the Vanderbilt Kennedy Center’s Community Advisory Council, where I can provide advice on activities that help other people just like us. All of this because we started doing research.
I’m going to be honest here. Before we participated, I thought people who participated in research were like guinea pigs. I hate to say that now, but I thought they were just thought of as tests. Afterward, my perspective changed completely. After participating, I could see the benefits of us going. Not only that we benefitted, but we also were told that we’d benefited them because they could see McKenzie’s growth from when she was in kindergarten all the way to now, and she’s 18. They have seen her growth, her challenges, and her accomplishments. They have seen what she’s capable of doing.
I also came to understand that by doing the research, we were not only helping our child, but we were helping future parents and their children. The researchers have 18 years of information about McKenzie and her growth that they can use to better understand Rett syndrome. And they can share our story with families who are just getting the diagnosis. They can share what is possible with attention, determination, and persistence.
So, I say to parents: try the research. Participate. Don’t be discouraged. Ask a lot of questions. And the more you go, the better prepared you will be. I eventually learned not to do anything to McKenzie’s hair before we went, because they were going to put on that wet net on and mess it up. And that’s another thing. You are in control of this. Nobody is forcing you to do anything. Nobody is forcing you to take medicine. Nobody is forcing you to have an X-ray. Nobody is forcing you to put on a net and mess up your hair. It’s all up to you. You decide what you can do and what you can’t do.
It’s important to know they are not doing research for nothing. They want to try to help find a cure, or to find treatments that will make people’s lives better. Participating in research benefits everyone.
Pictured above: Tuckson family