Don’t ‘Dis’ their Ability

This story is about three unique Lake County children. It’s no secret they have special needs. The facial characteristics of Down syndrome, the wheelchair that accompanies spina bifida, and the sometimes-erratic behavior of Joubert syndrome make it readily apparent. Strangers may look at them and think, “I’m glad that’s not my child.” But their mothers know there’s more to these children than meets the eye. The excitement from small accomplishments, the genuine, heart-melting smiles, and those moments of uncontrollable laughter fill a home with love and joy. No doubt, raising a special-needs child is an enormous challenge. But for three Lake County mothers, it’s also a blessing that has brought new meaning to life.

When Leslie Haynes gave birth to her daughter Caitlyn, she was allowed to hold her for only 15 minutes. Her baby, who was born with Down syndrome, had extensive medical needs and required around-the-clock care.

Caitlyn was only three days old when she underwent major surgery, having several procedures performed at once. Surgeons cleared blockage between her stomach and intestines, removed her appendix, and inserted a feeding tube. Then, at six weeks, she endured open-heart surgery to treat atrioventricular canal defect, a common condition with Down syndrome babies that creates a hole between the heart’s chambers.

“She spent so much time in the hospital after she was born,” said Leslie, a resident of Astatula. “I felt like I had a baby, but at the same time I felt like I didn’t have a baby because I hardly saw her.”

Considering everything Caitlyn endured at an early age, Leslie could have easily become the overprotective, coddling mother who shielded her daughter from the real world. However, Leslie always thought that parenting style would impede her daughter from reaching her full potential. In fact, she issued a stern warning to family members and friends.

Don’t treat Caitlyn differently just because she has Down syndrome.

“I told them to treat her like a normal child. If they gave her special treatment, she would expect other people to do things for her, and I would be the one who has to deal with that for the rest of my life. You’ve got to let children with Down syndrome be somebody. If she thinks she can accomplish something, I always encourage her to try.”

That attitude toward raising a special-needs child has paid big dividends. Today, Caitlyn is a 15-year-old honor roll student at Tavares Middle School who participates in the same activities that other teenage girls enjoy. The blue-eyed, brown-haired girl loves having her hair and nails done, shopping for clothes, and listening to today’s popular bands such as One Direction.

And she rarely shies away from social activities. In fact, the eighth-grade student was quite a hit at a recent school dance. As she slow danced with a boy, other students formed a large circle around them so Caitlyn and her dance partner could be the center of attention.

“Seeing her fit in with everybody else is really awesome,” said Leslie, a kindergarten teacher at Grassy Lake Elementary School in Minneola. “I was apprehensive about letting her attend a dance, but this taught me that you have to let go and let Caitlyn be who she is. You have to give her an opportunity to blossom in life.”

Caitlyn certainly has blossomed as a Special Olympics athlete. She won silver medals in the 50-yard dash and softball throw during the state games at Disney’s ESPN Wide World of Sports complex. In addition, she regularly competes in bowling and unified basketball at local and regional Special Olympics events. For her, gaining a competitive edge is of utmost importance.

“I don’t race with her anymore,” Leslie said. “One time when we were racing she tripped me at the door. Afterward, she looked at me and said, ‘Ha ha. I won!’”

Leslie feels blessed to have a child with Down syndrome. Caitlyn is not only one of her greatest gifts in life, but her best friend, as well.

“We get our nails done together, go shopping together, and take pictures of each other. She’s my princess, and I’m her queen.”

When he’s angry or upset, 10-year-old Joel Lorenzetti reacts by hitting himself in the face. He packs a powerful punch and has broken his nose seven times.

Some might automatically blame this bizarre behavior on Joel’s rare condition known as Joubert syndrome, which causes brain structure abnormalities.

But his mother, Kerri Lorenzetti, has a different theory.

“I would blame 20 percent of it on Joubert syndrome and 80 percent on him being Italian,” she says while laughing. “Mixing a rare syndrome with Italian is a recipe for disaster. He’s like a mobster in a wheelchair. And if he could talk he would say, ‘Yeah, I’m punching myself in the face. What are you going to do about it?’”

That good-natured humor is one of the ways Kerri and Marc Lorenzetti of Eustis cope with raising a special-needs child. Kerri and Marc are both carriers of a recessive gene that causes Joubert syndrome. However, their 16-year-old daughter, Alli, is a healthy teenager.

“I had 1 in 250,000 odds of marrying someone who had the same recessive gene,” Kerri says. “We hit the lottery with Joel.”

Having Joel in their lives has certainly been worth a fortune. Contrary to popular belief, parenting a special-needs child brings many happy moments.

“The first time Joel lifted his head off his baby pallet, I made a cake and threw a party,” Kerri says. “He has a big head, and we never knew if he’d be able to lift it by himself. His milestones may be different from my daughter’s milestones, but they’re equally joyous.”

Sundays are especially fun in the Lorenzetti household. That’s Joel’s “spa day” where he receives a bath, hair wash, and blow dry and also has his fingernails and toenails clipped.

“He loves being pampered,” Kerri says. “With so many ongoing challenges, you learn to cherish all the little moments.”

They’ve also witnessed Joel sharpen his communication skills by using his hands. Although he cannot talk, he taps the top of his head to say “hello,” while using his fingers to form a circular shape around his nose means he’s happy.

And you know he’s happy when he sits in his wheelchair watching his favorite cartoons, such as “Care Bears” and “Fairytopia.”

“We find ourselves watching “Rudolph the Red-Nosed Reindeer” in April,” Kerri says.

The Lorenzettis readily admit that raising a child with Joubert syndrome presents many challenges. The parts of Joel’s brain that control muscle movement and breathing are abnormally small. He wears a percussion vest that creates mini-coughs to dislodge mucus from his bronchial walls, and he eats through a gastrostomy tube that was surgically placed in his stomach. When his oxygen saturation levels are low, he is hooked to an oxygen tank to help him breathe.

Marc and Kerri have seen their child nearly die twice—once at age 3 when his lungs filled with serum and again when he was 4 and hospitalized with the flu. The family lost their home five years ago because Joel was denied medical coverage, forcing them to pay all of their son’s medical expenses out of pocket.

Without question, though, the moments of love and happiness easily trump the moments of grief and sadness.

“These days, I rarely think about his syndrome,” Kerri says. “I just want Joel to be Joel, and sometimes that means obnoxious behavior. We love Joel just the way he is. Because of him, I’ve met many wonderful people that would have otherwise never crossed our paths.”

Helping children with special needs is a calling for Grand Island resident Candi Giddens.

Before having a child of her own, she spent 20 years as a volunteer and coach for Special Olympics Florida. The never-ending smiles, loving personalities, and cheerful spirits of the athletes warmed her heart.

“I thoroughly enjoyed doing that because those athletes always possessed a positive attitude,” she said. “Regardless of their disability, they were happy just to be participating and interacting with other athletes. Being in their presence brought me lots of joy, and I definitely learned more from them than they learned from me.”

Little did Candi know that spending all those years with special-needs children would prepare her for the biggest challenge of her life. At 38, she gave birth to baby girl with spina bifida.

Her daughter, Ashton Grace, has undergone 25 surgeries—including 11 brain surgeries before reaching her first birthday. She uses a motorized wheelchair and has no feeling below her mid-pelvis.

But despite the hardships, Candi nurtured and challenged Ashton to reach her full potential—much like she did so many years with Special Olympics athletes. Today, Ashton is a 14 year old whose can-do attitude earned her the nickname “Amazing Grace.”

“After undergoing her latest surgery in July, she woke up and was giving high-fives to family members and friends,” Candi said.

That perfectly illustrates how Ashton never lets her condition or physical limitations define her. Simply put, no dream is too far-fetched for this self-admitted sports junkie. During the past six years, Ashton competed in basketball and track and field during the Paralympic Sport Tampa Bay games. She also played T-ball for three seasons, using her motorized wheelchair to round the bases.

“It makes me so proud to see her out there competing,” Candi said. “Even though she only has partial use of her right arm due to nerve damage, she never gives up.”

Ashton is also die-hard sports fan who quickly spouts off statistics of her favorite athletes and teams. She faithfully follows the Florida Gators and San Francisco 49ers, as evidenced by the paraphernalia of both teams prominently displayed on her wheelchair. She even enjoys attending monster truck racing and dirt bike racing events in Orlando.

“She’s not a girly girl or princess by any means,” Candi said. “She’s definitely a tomboy.”

And she simply cannot hide her competitive spirit. “We were at Olive Garden the other night and I kicked my dad’s butt at sports trivia,” Ashton says excitedly. “Also, I’ve been throwing a football since I was 3 and I can throw a tight spiral as good as any boy.”

When she’s not competing in or watching sports, Ashton concentrates on schoolwork. She readily admits that she has the best teacher in the world—her mother.

“I’ve homeschooled Ashton throughout her entire life and really enjoy it,” Candi said. “Not only do we spend valuable time together, but I can see firsthand how she’s growing and learning as a student. If she’s struggling with something, we can take the necessary time to learn it.”

There are times when this strong-willed child misbehaves. But her sense of humor often shines through when Candi attempts to correct her.

“When she acts up, I’ll tell her to go somewhere and sit down. She’ll reply by saying, ‘Mom, technically I am already sitting down.’”

Funny moments like those remind Candi that every baby is a blessing and every child is a gift.

“I’ve always had a heart for special-needs children. There’s no doubt that God had been preparing me for many years to have one of my own.”

PHOTOS: Fred Lopez