guthrie family photo
Twenty years ago, Judy and Tom Guthrie experienced the tremendous thrill of finding out they were going to have a baby. The Naples couple had waited three years before trying to get pregnant, and once it happened, Judy sailed through her first two trimesters.
“I took really good care of myself during pregnancy,” explains Judy, 48. “I ate right, didn’t use nail polish or dye my hair or drink. I exercised. I was very healthy.”
Like many eager young parents, the thought that something could be wrong with her child never crossed Judy’s mind. She had no family history of genetic or hereditary conditions. No one had a learning disability. No one had a disorder of any kind. Her sisters and brothers had all produced healthy, “normal” kids. But when Judy reached eight months, her mother’s intuition kicked in; something was wrong.
Judy was right. Tommy, now 20 years old, was born premature, weighing just 4 pounds, 2 ounces and had many health issues affecting his heart and eyes. At eight months old, doctors diagnosed Tommy with Williams Syndrome, a genetic condition marked by cardiovascular disease, developmental delays, and learning disabilities. According to the Williams Syndrome Association, one in 10,000 people worldwide are affected by the syndrome and between 20,000 and 30,000 people in the United States have Williams Syndrome.
Judy says the diagnosis was heartbreaking. “We mourned our dreams and plans that we hoped for our son. We experienced all different emotions,” she says. “Scared; guilt - did I do something?; anger - why did this happen?”
But as most parents of a child with special needs will tell you, there never will be a clear, concrete answer to the question ‘why?’ It just happens. The latest statistics provided by The National Survey of Children with Special Health Care Needs show that roughly 13.9% of U.S. children have special health care needs. The study was performed by the U.S. Department of Health and Human Services in 2005-2006, the last time the data was made available.
The medical costs associated with raising a child with special needs can add another layer of anxiety and worry for parents. Shannon Blaeske, a mom of three from Estero whose 2-year-old daughter, Fiona, has Down Syndrome, says the first year of Fiona’s life was “crazy.”
“Fiona had open heart surgery at five months and she must be monitored once a year by a cardiologist,” says Shannon. “She was born with clubbed feet and still wears braces at night to keep them straight. She has tubes in her ears and will probably need tubes in her tear ducts. And she has to get blood work to check her thyroid and white blood cells once a year. But it’s no different than how her brothers play sports. It’s just another activity we do every week.”
Judy also says the most challenging aspect of raising Tommy is managing his medical appointments. She juggles visits to Tommy’s gastroenterologist, neurologist, psychiatrist, nephrologist, cardiologist at All Children’s Hospital in St. Petersburg, and his dentist and orthodontist in Miami, in between running her family’s business with her husband.
“I wouldn’t know where to begin adding up miles, money, and time,” she says. “Besides, it doesn’t matter. We travel to St. Pete and do what we do because we want Tommy to have the best specialists and treatment facilities available.”
Trouble with diagnosing
Sometimes though, getting a proper diagnosis for a child with special needs is the hardest part of all. Just ask Matoaka Garner of South Fort Myers.
When her now 9-year-old son, Evan, was a year old Matoaka noticed some concerning behaviors. “He was stuck at da-da, ma-ma, bird, and vent. Maybe a few others, but I can’t remember because I stopped writing in his baby book,” she says. “His happy personality began to diminish and he had little tolerance for being put in his car seat. He would thrash and scream when I turned certain corners. He began to withdraw, and he didn’t play with toys normally. He would spin wheels on his vehicles over and over.”
In 2004, Matoaka says Evan’s pediatrician dismissed his behavior as typical toddler angst. “She told me that boys were always a little behind girls in language development and not to worry,” she states.
By the time Evan was two-and-a-half, Matoaka was panicking. A chance viewing of an autism expert on a national talk show confirmed her suspicions that Evan needed help.
“She was describing symptoms her grandson, who has autism, had shown and it gave me a pit in my stomach,” says Matoaka.
A different pediatrician and a neurologist both confirmed Evan had autism, but neither of them offered Matoaka guidance, referrals, or advice. She was left to figure it out on her own.
“They didn’t even give me the number to early intervention,” she says. “I had to do all the digging on my own and find my own resources to help Evan.”
She immediately began Dr. Stanley Greenspan’s ‘Floortime’ therapy and found speech and occupational therapists at Building Blocks, Inc. in Naples. After six hours of therapy a week, Evan finally began to speak.
Milestones like walking, talking, and attending school are exciting for any parent, but these actions take on even more meaning for parents of children with special needs.
Shannon says it was frustrating when people doubted Fiona’s ability to walk and talk as a youngster and she is still shocked when she gets comments from people who think that Fiona will never graduate from high school.
“It sometimes stings a little to see her around other two-year-olds, or even one-year-olds who have surpassed her developmentally,” says Shannon, adding, “especially in this rat-race, my-child-is-better-than-yours society. But then I remind myself, none of that matters.”
In fact, if there is one sentiment that Shannon, Matoaka, and Judy all openly share, it’s that their lives are better because of, and have been enriched by, their children with special needs. And they encourage other new parents who may be getting similar news as they once did to embrace the challenge.
“When people say we couldn’t do what you do I always answer, ‘Yes, you would - it’s your child,’” says Judy. “I truly feel Tommy has made us not only better parents but people. We wouldn’t trade a minute of our life with Tommy. He’s our angel.”
And isn’t that feeling the reason we all become parents in the first place?
Patricia Carlson writes for magazines, blogs, websites, and radio and television stations.