The Noble Family
Justin and Jarrot Noble
Augusta, Georgia (Senate District 23)
On a beautiful spring day near Augusta, it’s the week before The Masters, which is also when local schools have spring break and many area residents choose to leave. Justin and Jarrot Noble get off the school bus about 15 minutes apart from each other. Each has a snack – a protein bar – and heads off to start the afternoon routine. Justin, 16, is working on his chore list, so he takes out the trash before settling in to chat with us. Jarrot, 14, heads up to his bedroom for cartoons and snuggling with his “creatures.” Both of the boys have very different forms of autism.
“I like to say,” says mom, Tonya, “If you’ve met one kid with autism, you’ve met only one kid with autism. My boys couldn’t be more different from each other. They’re like yin and yang.” Tonya and her husband, Jason, didn’t actually tell Justin he had autism until he was in the sixth grade because it would have been so difficult for him to look at his brother and think of himself as being the same. Tonya talks about going through genetic testing to see if there was anything that manifests the coincidence of autism in two of her three sons, but she said absolutely nothing was there.
Neither Justin nor Jarrot currently have the Katie Beckett or Medicaid waiver. Tonya is gearing up to apply for all of these resources, as well as the Serenity grant, which provides assistance to attend camps, adaptive gear, etc. Fortunately, people who have worked in the military, both active duty and retired, have access to an office called Exceptional Family Member Services. They will assist Tonya with filling out the Medicaid waiver paperwork, which is a huge resource that most Georgians don’t have. She says that in the state of Oregon, where they lived previously, there were people on hand to assist anyone applying for Medicaid waivers, regardless of their military service. (Story continues below after slideshow.)
In both her sons’ cases, Tonya speaks about how crucial early childhood intervention was. After Justin was diagnosed at three and started receiving services, he learned 150-200 words quickly. At this same time, Jarrot was an infant who was already demonstrating signs of autism, but in a different way. He didn’t want to be swaddled or caressed, and would startle and scream as if he were pain. Jarrot would go limp when picked up. Because they already had a diagnosis of autism for Justin, one doctor proposed that Jarrot was simply acting like his brother. Tonya knew that couldn’t possibly be true because Jarrot never had words when he was little. They called him “The Squeaker” because he would verbalize with squeaks, yips and yells, and there was no consoling him when Tonya had to leave the room.
Justin is an avid artist and has developed an entire world of characters with names and histories for the comic book he’d like to create one day. It’s called “Super Pony Squad,” which is a combination or send-up of Pokémon and My Little Pony. He flips through his sketchbook and shows off framed watercolors that have placed in student art shows. Jarrot is happy to be back from school and has brought home one of his “buddies,” a stuffed bunny. He has an amazing collection of Beanie Babies™ in his room. They had to buy Jarrot a bunk bed simply so he would have a separate space for all his buddies.
Another concern the Nobles have is keeping their sons safe when interacting with law enforcement. The family home and car both display signs distributed by the Autism Society of America that explain there is teen with autism inside. Tonya explains that these signs are to help police officers or other adults who might approach so that they won’t misinterpret what could seem like aggressive behavior and will hopefully help appropriately. “Police officers, security officers are some of our biggest problems, and they should be some of our biggest helpers,” says Tonya.
If given the opportunity, Tonya would talk to her legislators about how much work and consuming focus it takes to fill out all the Medicaid waiver paperwork while still managing their family’s other needs. “If the system made it just a simpler to do what we need to do, we could take care of our families,” Tonya says. She also reflects that sometimes she has a feeling that she’s filled out paperwork before and then realizes it’s the same questions but for something different. If only these agencies could work together in a streamlined database. It would be so nice if you could put in one set of information and then answer individual questions for a specific application. When you think about all this paperwork, just imagine having to do it for two children – all the time.
Writer: Shannon Turner, Photographer: Lynsey Weatherspoon