June Lawson remembers a time before golf tournaments like the one scheduled this week to raise money and awareness locally for Fragile X.
She remembers the days and years before Internet and Facebook, as a single parent raising her son, Clay Doub, with the nearest Fragile X support system being in a faraway city or another state.
She remembers the short years before the identification of Fragile X, when Clay was a toddler struggling to learn how to speak, sit up, all at a slower rate than his cousins of similar age, when no one was certain what was delaying his development.
Lawson recalls these struggles and feels blessed that she and Clay have entered an era when Fragile X is not only more commonly known but more readily diagnosed, when more help is available, at a time when a cure may soon be a reality.
While organizers of the Third Annual Fraxa Research Foundation Valdosta Chapter Team Up for a Cure Charity Golf Outing scheduled for Friday include parents of small children diagnosed with Fragile X, June Lawson and her son have been learning about, coping with, and overcoming the effects of the syndrome for Clay’s 34 years.
And neither one has let Fragile X keep Clay Doub from living life fully.
Fragile X is a genetic syndrome considered to be the most common single-gene cause of autism. Inherited from carrier parents who may display no signs, Fragile X can cause a wide spectrum of developmental delays and limitations intellectually, physically and emotionally.
Essentially, Fragile X is marked by the body’s inability to manufacture certain proteins required for normal neural development. It has been described as working as a brake in the brain, causing some Fragile X children to appear to be extremely ADHD.
Clay Doub was born in 1978. Two years prior to the identification of Fragile X in 1980.
“Clay wasn’t developing in terms of sitting up, and his motor skills,” Lawson says. “He was not talking. He was not delayed in his walking as much as talking.”
Walking, though, Lawson describes her son as being “extremely hyper” as a small child. “He would run and run and run until he ran into a fence or a brick wall.”
At the age of 2, she sought a diagnosis. Dr. Thomas Anderson sent nurses to the library to research Clay’s many symptoms. The doctor came back with a diagnosis of the newly identified Fragile X.
Armed with this information, Lawson reached out to Valdosta State speech clinic, which worked with teaching him to speak starting at the age of 3 years old. He continued speech classes and other classes in the Valdosta City Schools’ special-education programs.
She also kept Clay enrolled in the Valdosta State clinic. Lawson recalls leaving work at her lunch hour to take Clay to Valdosta State for a speech session then return him to school before returning to her job.
Carried by bus after school, Clay participated in YMCA programs until Lawson finished work for the day and picked him up for home.
A divorced, single parent, Lawson handled most of these responsibilities to make a better life for her son.
“I’ve been blessed with Clay,” Lawson says. “I always say, ‘Burdens often turn into blessings’. In the beginning, I didn’t know how I could make it, but I couldn’t imagine life without Clay.”
As a youngster, Clay was quiet and shy. Almost painfully shy, keeping to himself. Like others with Fragile X, he is sensitive to noise and was especially sensitive to noise as a child. In high school, it was suggested that he participate in sports. The activity would be good for him. Coach John Miller made Clay the VHS basketball team’s manager.
Before the first game, entering the gymnasium, where every squeak of a tennis shoe echoes, where running feet thunder on wooden floors, where hundreds of people cram the bleachers, Clay felt nervous. By the game’s end, he was the basketball team’s most avid cheerleader.
Inclusion opened new possibilities for Clay Doub.
“I saw a big improvement in him,” Lawson says. “He went from being a kid who couldn’t look you in the eye to a kid who would stand on the top bleacher and yell for his team.”
Watching one high school event, Lawson recalls the basketball team being introduced. Clay was introduced last. “Three-thousand students gave Clay a standing ovation.”
For Lawson, who once was uncertain what she would do and what would happen to her son, the ovation was more than applause for an achievement, it was a promise of possibilities for her son’s life.
While still in high school, Clay rose in Special Olympics. In 1995, he received the prestigious Naismith Award for Special Olympics, Basketball Athlete of the Year, for the state of Georgia. A year after high school, he received the 1998 Achievement Award from the Mayor’s Council for Persons with Disabilities. In 2003, Clay served as an adult ambassador for Easter Seals, Southern Georgia.
He has won numerous gold medals through the state’s Special Olympics competitions. These medals include swimming, floor hockey, bowling, softball, basketball, and horseback riding. In 2006, he represented Team Georgia, swimming the breaststroke and anchor leg for the four-person freestyle relay, winning two national Special Olympics gold medals. In 2009, he won bronze as part of the U.S. Floor Hockey Team in the World Special Olympics Games.
At six-foot-3, 220 pounds, and 34 years old, Clay Doub still cuts an athletic figure.
Yet, his largest leap came six years ago.
As with any parent, June worries about Clay. Unlike many parents, she had long worried what would happen to him once she was gone. How would he care for himself? Who would care for him?
Through Easter Seals, apartments are available in Valdosta for people with special needs. Lawson arranged for her son to live independently in one of these apartments. The apartment manager serves as a mentor to the special-needs residents.
At first, Clay didn’t understand why he had to move away from his mother. Now, he enjoys his independence and wouldn’t have it any other way, he says.
He works part-time with the Valdosta-Lowndes County Parks and Recreation Authority. Friends give him rides places, such as various churches and social functions with friends. Designated transportation gets him to work and various appointments, such as his adult-literacy classes two nights per week at Wiregrass Georgia Technical College.
While they have adjusted to their new life, June Lawson can’t help wonder about the promise of an even more independent life. A drug is being tested that would substitute the missing ingredients for neural development. If successful, Clay could possibly be prescribed this medication in coming years and be able to grasp a growing number of concepts.
He could possibly live a “normal” life, Lawson says, but given the conditions of Fragile X have always been a part of his life, it would be anything but normal for June and Clay.
Would it change the beautiful personality which June Lawson and many other Valdostans have come to love through the years?
The possibilities are something to consider, but unlike those early years as a new mother with so many uncertainties, Lawson knows she will not face them alone.
“Being a single parent, I have valued all of these programs and am a firm believer in early intervention and inclusion,” Lawson says, reflecting on the many programs and organizations that have helped her son. “My experience has made me realize it indeed takes a village to raise a child especially a special-needs child.”
Fraxa Research Foundation Valdosta Chapter’s Third Annual Team Up for a Cure Charity Golf Outing is scheduled for Friday, Aug. 23, Francis Lake Golf Club, with a 1 p.m. shotgun start. Format: Four-person scramble. Cost: $400 per team. Raffle for prizes/low gross and net prizes. Lunch served at 11:30 a.m. More information: Contact Patty Cosey, (229) 292-4944; or email email@example.com Proceeds go toward Fragile X and autism research.