Because of Him
Alpharetta, Georgia (Senate District 56)
Jackson Hott is a 16-year-old boy with cerebral palsy and a seizure disorder. He sustained a brain injury as a result of complications during labor and delivery. When he was being born, he was larger than expected and his doctors induced labor but did not realize that the umbilical cord was wrapped around his neck. He was deprived of oxygen for several minutes.
Limited in verbal communication, Jackson utilizes some sign language and a lot of non-language based vocalization to indicate his wants and dislikes. His family has become very good at reading his cues. At school, Jackson’s teachers have been working with him to utilize his love for the iPad to establish new methods for communication. Unfortunately, those efforts have been less successful at home.
Because of his age and level of need, Jackson falls under the Katie Beckett waiver, but he’s been on the waiting list for the NOW Medicaid waiver for about eight years already. Because Katie Beckett is an add-on where the recipient has to have primary insurance, it pays for virtually nothing at the moment. Jackson has gone through phases where he had physical therapy, occupational therapy and speech therapy all at the same time. PT dropped off as soon as he learned to walk, but he still has speech therapy through the school system. (Story continues below after slideshow.)
Even more than the CP, Jackson’s seizures have have been debilitating both to him and to his family’s life. Mom, Patricia, and older sister, Rachel, convey a series of events that have happened. Current symptoms for his epilepsy are simple myoclonic jerks in his face. At one time, though, seizures were an all-consuming challenge for the entire family. From the time he was about four, when he learned to walk, until he was five-and-a-half, Jackson had a series of drop seizures. “That’s why his teeth are all broken, and he had stitches all over his face,” says Patricia. “He had black eyes and bloody noses. He’d be standing there and just drop, and there could be a table in the way.” It was a really scary period of their lives.
Jackson has also had a couple of grand mal seizures, which were also very scary. Strangely, they have often come on in the middle of the night. One time, Jackson must have felt one coming on because he crawled into his parents’ bedroom right before it started. He was in the hospital for two days after that as doctors adjusted his medication. He’s also had a number of grand mal seizures at school.
The family is extraordinarily lucky in one key way. Patricia’s insurance through her work as a CPA for an investment real estate company covers the bulk of Jackson’s medical needs. However, Jackson also receives $1700 a year from FCSS (Family and Community Support Services), which pays for him to go to the YMCA full-day summer camp program called OWLS.
If legislators were brought to their doorstep, Patricia says she would tell them about the profound need for services. “It kind of puts you in a panic to think of what are we gonna do with him when I still need to work and he’s no longer someplace all day long. It’s not like I no longer want to contribute to society anymore.” When we ask Patricia what she wants people to know about her life, she starts to cry, but Rachel jumps in to help out. “It’s definitely a challenge living every day with him,” she says, with maturity beyond her years, “knowing there are certain things we can’t do.” She describes how they have to split up for family vacations or going out to eat, always leaving one or two people behind. “Don’t get me wrong, living with him is a blessing. I wouldn’t want him any other way, but there are just those things that are hard to do.” Rachel also talks about turning down her friends on New Year’s Eve so that she could stay home with Jackson, letting her parents have a date night out instead.
As she works through her tears, listening to Rachel talk about their lives, Patricia also starts to smile at her daughter, beam actually. She seems proud of what a strong, articulate, and empathetic human she is. “That’s because of him,” the mom says. “I feel like both of my kids are so much better people from having grown up with Jackson. It’s amazing how much better they are than I think they would have been.”
At the end of the afternoon, Rachel is heading out. She’s on her way to babysit a child with autism. Jackson, in the meantime, has a date with his iPad, now that everyone is going to stop interrupting him.
Writer: Shannon Turner, Photographer: Haylee Fucini-Lenkey