Creed Fox knows all about tornadoes. He knows the wind speeds of an F-5 tornado and what kinds of clouds are in the sky.
The almost 10-year-old also knows about airplanes. He knows their military branch, their engine types and who makes them.
But the little boy who loves tornados and airplanes would not ride in an elevator. He also doesn’t play with neighborhood children, struggles with eye contact, has trouble with table manners and refuses to leave the house after he comes home from school.
Creed is one of the 54.
One in 54 boys who are affected by Autism Spectrum Disorder.
The Centers for Disease Control estimates that one in 88 children will be affected by an Autism Spectrum Disorder, and of those 88, one in 54 will be a boy. Creed was diagnosed in January 2011 at the age of 7 1/2.
While things may be more difficult at times for his family because of autism, it has also opened their eyes to what his mom calls “magical moments.”
“I find pleasure in watching him do things that excite him,” Maryville resident Penni Fox said. “As we were leaving school yesterday, our normal routine is to go to the post office. Well, I went a different way, which is not allowed, and we found two cement mixers pouring concrete into a newly dug basement hole.
“He was mesmerized as we talked about rebar and concrete and the workers doing the job.
“At a time before autism, I would have barely noticed the work taking place.”
“Seeing things that are so unimportant to most people become magical moments to my son with autism,” Penni said. “That is the gift of autism.”
Some people don’t see it that way, as a gift. But that’s what Penni and her husband, Chuck, are trying to do. Share their story and share their gift.
That little boy who can tell you everything about tornadoes and airplanes goes into an absolute panic when he nears an elevator.
It’s his latest autism hangup, Penni said, but he’s working on it with a specialist.
“He will now step inside it as long as someone holds the ‘door open’ button,” Penni said. “Then he examines the inside for the manufacturer and the capacity, whether it says number of people or a total weight limit, and he can remember who makes many of the elevators.”
Chuck and Penni Fox are natives of Northwest Missouri. In addition to Creed, they have an older son, Drake.
As a toddler, Penni said Creed was reaching his developmental milestones, although at the end of the window or even months later, but he was doing some amazing and bizarre things, too.
“I knew he was struggling but nothing was obvious enough to warrant testing for autism or anything else,” she said. “He was just a little quirky.”
They moved to Maryville in 2008 when Chuck retired from the Air Force. He worked as an assistant coach for the Northwest Missouri State women’s basketball team with former coach, Gene Steinmeyer. (See story on Creed and the team on page A1)
“Creed started kindergarten at Eugene Field that year, but he struggled,” Penni said.
Soon, Creed received a diagnosis of dyslexia along with ADHD. He repeated kindergarten and Penni thought he was doing better, although he was still behind academically.
During the next year, however, Penni said she realized something was really wrong.
While discussing his academic performance with his teacher, Penni said she blurted out, “Do you think he has autism?”
The school district worked very hard to get a plan in place, she said, while they waited nearly four months for testing at Children’s Mercy in Kansas City and at the University of Kansas. He was diagnosed with high functioning autism.
“High functioning is the blessing in the autism diagnosis,” she said. “It means he is highly verbal, does most self care and has these out of the world understandings of the strangest things for a seven-year-old kid.”
During the early stages of his diagnosis, Penni said she kept reading about the “gift of autism.”
“At that point, I wasn’t sure it was a gift,” she said. “But it was a relief to know what was wrong with Creed.”
Toothpicks & drinking straws
Penni has chosen to work from home part-time so she can be available full-time for Creed. It means very little time away from him because he can’t be left with just anyone.
“Paying a teenager to watch TV while he plays is not a reality,” she said. “He may decide to build a recycling landfill by opening full garbage bags and burying them in the back yard.
“He might fill the bathtub with 25 plastic shopping bags to see if they float.
“He might make toilet paper sculptures in the bathroom sink then place them in areas his brother stores his possessions to dry.”
All true stories.
On the plus side, she said he loves art and anything that can become a sculpture, like that toilet paper, or even toothpicks and drinking straws.
Creed craves routine.
“He likes to drive the same route to our destination, tells me when I should get over, asks if I am watching for the exit and how fast am I going,” Penni said.
He also wants everyone else to follow rules, she said.
“It drives him crazy if Mr. Dumke keeps them just an extra minute or two past his scheduled departure time,” she said.
Creed is currently in Howard Dumke’s third grade class at Eugene Field. He is mainstreamed for special classes like PE, music and art and also has some regular classroom time. He receives speech, occupational therapy and social skills intervention.
“We are incredibly lucky to have the support we do from Eugene Field Elementary School,” Penni said.
In the early stages of this autism, he would become frustrated or agitated and have episodes of Echolalia, which is repeating random things he had heard, she said.
Now he’s focused on a six-rotation medley. He randomly shouts out digital clock times, like 5:09, and then backward, 9:05, for six rotations.
Gift of autism
Penni advocates for more support for mental and behavioral health in Maryville to help Creed and the other one in 54 like him.
“Being in this largely rural area, access to services for autism are nearly nonexistent,” she said.
She also hopes her efforts with awareness will help people understand and embrace autism.
“Our country has to understand and embrace the gift of autism and create and find suitable opportunities for these individuals,” she said. “In the right places, with the right training and support, individuals on the spectrum can be productive citizens.”
When people realize that potential, their eyes can open to see those magical moments that Penni sees with Creed.
It is the gift that is called autism.