Raphael and Sharion McInnis, son Matthew (5) and daughter Gabrielle (2)
Five-year-old Matthew McInnis is all about making people happy. He loves waking his baby sister Gabriel with a big hug and a kiss in the morning, and singing Pharrell’s song, “Happy.”
“If he does something wrong, he’ll try to fix it and then ask, “Are you happy?” says his mom, Sharion, tells me with a laugh.
But Raphael and Sharion McInnis didn’t find out their son Matthew had Down syndrome until three weeks after his birth, when low muscle tone tipped off their pediatrician. The news came, “as a complete shock,” says Sharion. In fact, Raphael didn’t even accompany her to the check-up and instead received the news at his office at Medtronic.
“It took awhile to cope,” he says. “My first thought was what were the challenges he might face and how can we work with that.” But as the initial shock wore off, the couple learned that raising their son would be no different than bringing up any child. “You realize that with any child you don’t know what they’ll need, and that gave me comfort.”
While Matthew had motor skill delays (he didn’t walk until age 3), he showed surprising quickness in other areas, like matching words to pictures as a toddler. Now 5, he is already reading. “No matter the issue,” says his dad, Raphael, “if you spend extra time, with extra help, he’ll get there.”
WHAT I’VE LEARNED:
Raphael: I always took for granted that I could do things without a struggle. I realize how hard Matthew has to work to do typical things and it has helped me realize not everyone can do things easily. We all work at our own pace. We must build a community and embrace our differences and work towards helping each other.”
MY ADVICE: Be patient. It may take awhile, but you’ll get there.
Laurie & Jim Gaut with daughter, Katherine (15)
Laurie says the first thing that popped into her mind when she learned her daughter Katherine had been born with Down syndrome was the television show Life Goes On. It was the first TV drama to feature a main character with DS, a teenager named Corky, played by actor Chris Burke.
“I thought, ‘Well, he’s doing alright, so she’ll be alright, too,” she says.
Now 15, Katherine attends Houston High. Laurie says she’s a happy child with an amazing memory.
“You don’t see your child differently because of this. Down is part of her but it doesn’t define her,” she says. “She’s like everybody else who has strengths and weaknesses. She can make a contribution.”
And Katherine contributes to many things: Her soccer team, gymnastics class, and the drama club at school. Laurie believes inclusion in the classroom made a real difference for her daughter. “When I grew up, I never saw special needs kids; my child is seen and participating in the classroom.” With inclusion, lessons are modified so special needs students can understand the material and participate in a regular class.
“She needs modifications but that doesn’t mean she can’t learn things if she receives the proper training.”
WHAT I’VE LEARNED: Patience. It takes my daughter longer to do something but that doesn’t make her less. She can learn if you help her learn.
MY ADVICE: Don’t be anymore afraid of parenting this child than any other child. She’s going to be fine.
Cedric and Devita Davis-Pryor with Chelsea (6) and Gabriel (9)
Devita describes her daughter, Chelsea, as a typical 6-year-old: She’s compassionate, loves to play soccer, and is quick to learn song lyrics when her dad, Cedric, plays music. And she loves her brother, Gabriel.
“She wants to do the same things as her big brother and I encourage her because I don’t want her to think she can’t.”
When the couple first learned their daughter had Down, “I was scared,” admits Devita. “I’d never known anyone with Down or special needs. I wondered, ‘What did I do wrong?’ I was just 30.” But as she and her husband learned more about this most common genetic condition, their fears were laid to rest. Now that Chelsea attends Collierville Elementary, the couple is discovering another new realm, that of advocacy.
WHAT I’VE LEARNED: Educate yourself and know your rights as a parent, be an advocate for your child. And don’t think you’re alone. There are lots of support groups out there.
BEST ADVICE: Be strong. God doesn’t put any more on you than you can handle.
Pam and Chuck Burnette, daughters Maggie (9) and Lillie (5 ½)
Pamela Burnette describes her daughter Lillie as a shining star, a sunny, chatty girl happiest when she’s in the spotlight. Pamela has always known her daughter was special. “As an infant, people would walk up to me out of the blue and tell me what a beautiful child I had.”
Pam was 36 when she conceived Lillie but felt all along something wasn’t right.
“I never felt good," she says. "Everything felt different. Call it mother’s intuition but I felt something wasn’t right.” Once she realized her daughter had Down, she worried about friends accepting her, worried her daughter would struggle. But in hindsight, she’s come to realize how misplaced her worry was.
“God made man in His image but who’s to say His image is not like Lillie’s? That one extra chromosome may be the way He intended it to be.”
What she most relishes is Lillie’s ability to enjoy the small moments of life.
“Why can’t all of us be more loving, more compassionate, more caring, go a little slower in life? My daughter is one who benefits in this life because she enjoys every moment she is given.”
WHAT I’VE LEARNED: Strength and tolerance. I’m more tolerant of people because I recognize our own unique special needs. Normal is not a word used in my house because what may be normal to you may not be normal to me. And the word “retarded?” Ban it . . . All of us make mistakes and all of us have something to offer, some way we can contribute to the betterment of this world.
BEST ADVICE: Slow down and enjoy these precious moments, they are opportunities to love and grow and help spread the word that Down syndrome is one of life’s little miracles bestowed on a select few.