The Normal Boy With Fragile X

Michael Watkins, of Whitehouse Texas, is the father of Austin who was diagnosed with Fragile X as a toddler. Michael and his wife, Amanda, share this story in the hope that it will offer encouragement and information to those who face similar challenges.

The family gathers around the table, clasp hands, and bow their heads. As the father thanks Jehovah God for His blessings, including his son’s favorite, pepperoni pizza, Austin Watkins raises the hand of the person next to him and gently caresses his own cheek.
Without a word, Austin communicates a welcome to the new person at the table and communicates the truth about his own tender heart.
A freckle-faced, 10-year-old with a bur haircut and an impish grin, he has bright brown eyes that are alert to every nuance.
His sister is 8-year-old Abigail, a shy little brunette with hazel eyes, an easy laugh, and a sparkly personality.
They dig into the pizza piled high on their plates and the conversation turns to family and friends.
Austin claps with joy as small accomplishments are discussed, his or any one else’s.
And he never says a word.
“Imagine never hearing the voice of your child,” says Austin’s father, 33-year-old Michael Watkins.
For parents of Fragile X children, “normal” takes on a whole new meaning.
For instance, since Austin was late at every stage of the development, when he was finally able to run through the house like a normal boy, it was a cause for celebrating, not scolding.
Austin would run, that is, until he reached the end of the tile and the beginning of the carpet. Then he would stop, raise his foot high in the air and carefully test the new surface represented by the carpet. Once sure of his footing, he would dash off again until the next change of texture caused confusion to his brain’s processing.
Something as simple as an outing to the park represented a thousand challenges for Austin whose brain processes every last bit of information without filtering.
“He would not slide or swing,” says Michael, explaining that children with Fragile X are prone to sensory overload and that even movement or wind can alarm them. The multitude of textures that most people take for granted, like the wood chip ground cover, can trigger panic attacks as the child tries to decipher what the textures represent.
These days, his family is poignantly aware of what a milestone it is for Austin to enter into the pizza restaurant without hesitating or panicking along the way.
“Imagine if you had to listen to all the florescent lights in a restaurant, if you could hear all the silverware clattering, the car doors outside banging, and about seventy-five conversations all at once,” Michael says, explaining how children with Fragile X have difficulty with sounds. “We take for granted our ability to tune it out.”
The folks at CiCi’s Pizza call Austin by name and wait patiently as he presses the screen on his “V,” which then announces that Austin would like pepperoni pizza. V stands for voice and is the latest technology, designed by Dynabox, specifically to allow Fragile X and Autistic children a chance to communicate with words.
Austin’s grandfather, Don Treul, of Breckenridge, Texas, is particularly pleased with this new avenue of communication, claiming that it only proves what he knew all along, that his grandson was a smart boy who was aware of what was going on around him, but hindered by his inability to talk.
Being able to communicate has eased Austin’s frustration level and allowed his true personality to shine out.
“He is the most kind, huggy-kissy kind of kid,” laughs his father.
Michael also credits his wife, Amanda, with bringing a whole new level of behavioral achievements. Amanda loved both Austin and Abigail immediately when their protective father first introduced them.
Amanda saw Austin as an individual who was old enough and ready to do many things for himself.
For instance, his father was still making Austin’s sandwiches in the routine way which included cutting off the crust and dividing them into eight equal portions when he discovered that, lo and behold, Austin was perfectly capable of making his own sandwiches when Amanda was in the kitchen.
Another day, on the way home from worship, Austin communicated that he was hungry. He was instructed that as soon as they finished changing out of their good clothes, the family would make something to eat together.
After changing, on her way to the kitchen, Amanda noticed that Austin’s door was closed.
“He never closes his door,” laughs Michael. Abigail nods in agreement. Something was definitely up.
Poking her head in the door, Amanda saw immediately that Austin had orange cheese-y stuff all around his mouth as he quickly hid the bag of chips behind his back.
She had to go back to her bedroom and laugh out loud before she returned to tell Austin that he had to take a time out because he disobeyed.
“Those moments show the complexity of the person who is trapped within. Its there behind his eyes,” says Michael, tenderly.
It’s another kind of normal.
Every child has their challenges, Michael points out. All children are different and unique.
“We think he’s easy,” laughs his dad, referring to Austin’s loving personality.
Routine is especially crucial in helping children with Fragile X cope with new situations. A trip to the pizza parlor, a morning of worship can happen with preparation and planning, but a wise parent helps the child by taking it in stages.
For instance, when the family decided Austin was ready to join in worship, they took him first to a place just outside the sanctuary where he would not have to see all the people. Next, they brought him into a room with a window.
Now he sits with his family, holding his own Bible or hymnal, and enjoying the experience.
Just recently, Austin laughed out loud for the first time.
The family was sitting in worship, when something struck him as funny and his laughter came bubbling out.
The sound of Austin’s laughter is sweeter than music to his family.