Meet the Ardis

Meet the Ardis

by Lisa Thibodeau

Cherubic and busy, 21-month-old Christopher Ardi plays on the floor of his family’s home in Granite Bay while his three older sisters, Daniela, 6, Juliana, 5, and Gina, 3, all vie to hand him toys, pick him up, and give him squeezes. “He has five little mothers,” says Christopher’s mom, Susan, with a smile (including their German au pair in her count). Susan jokes that Christopher will either “have great fashion sense or go the other direction and be totally masculine, a football player.” Clearly, the whole family cherishes little Christopher, who has bright blue eyes, a heart-melting smile, and Down syndrome. As his oldest sister Daniela tells me, Christopher is “the baby brother that I told God I wanted in my heart.” 

Wondering

Paul and Susan Ardi got started having kids right after marriage. After baby #3, they decided they just were not finished, so they decided to go for baby #4. They knew there was an elevated risk for complications, but they opted not to do an amniocentesis. “I had no intention of terminating anyway,” Susan explains. After three girls, the couple was surprised to find out they were having a boy, and Susan had an easy pregnancy.

The Ardis did not learn Christopher had Down syndrome until right after his birth, when their obstetrician handed him to Susan and said, “There’s a good likelihood of Down syndrome.” This was based on “soft signs,” like Christopher’s low muscle tone, the presence of a simian crease on his hands and his eye shape, but a blood test would be needed to reach a definitive diagnosis. “This was probably the most stressful time,” remembers Susan, who found the uncertainty trying. She remembers wondering, “Should we call people or not?”

While the Ardis would come to accept Christopher’s diagnosis fairly quickly—“It’s just a fact,” says Susan brightly, “and we deal with it”—it is not uncommon for parents to experience all kinds of emotions, including shock and grief, when first confronted with a diagnosis, according to Heather Haskin, who founded the National Down Syndrome Coalition (NDSC) from her home in Roseville, just seven months after her youngest son, Malachi, was born with Down syndrome. She adds that most doctors could do better in terms of how they deliver the diagnosis.

Believing

Heather recalls the negative experience she and her husband had in 2005 when Malachi was born. “We were told we didn’t have to bring the baby home if we didn’t want to!” Heather was appalled. She was equally disturbed when the hospital staff handed her outdated information on Down syndrome, almost all of it overly pessimistic in her view. Luckily, with a B.A. in Child Development and over twelve years’ experience working in special needs, Heather knew better. “This is why I founded the Coalition,” she says. “We try to shower each family with congratulations and help them regain focus on the beauty of their baby.”

A big believer in the potential of individuals with Down syndrome to live extraordinary lives and make important contributions in their communities, Heather is one of several local parent advocates leading the movement to empower families and improve local resources for kids. “The only limitations for a child with Down syndrome are the ones we set,” she says. “They can achieve great things in life!”

Connecting

Once Christopher’s diagnosis was certain, Susan and Paul quickly began educating themselves on the best ways to help their son. They sought out as much information as possible from books and other resources, including groups like the National Down Syndrome Coalition, as well as the Down Syndrome Information Alliance in Sacramento. Through these organizations, they were able to connect with other families in the same situation, and join play groups and moms’ nights out. Having had four children in just five years, Susan is also a big believer in enlisting support at home. “Just going to the grocery store with four kids is not very much fun,” she admits, adding how glad she is to have childcare help from the family’s live-in au pair.

To help Christopher cope with the challenges of Down syndrome, the Ardis’ doctor connected them with Alta California Regional Center in Sacramento. Alta, in turn, set them up with Esther Anderson, an infant educator who visits weekly and works with Christopher on his gross motor and fine motor skills, oral motor skills and feeding issues. He also sees an occupational therapist and physical therapist at their clinics once a week. A speech and hearing specialist comes to the house once a month to help Christopher cope with hearing loss in his left ear, and a music therapist comes to the Ardis’ home once a week. Fortunately, Christopher is very healthy and free of the heart complications common to many Down’s babies.

Paul says that he and Susan choose to work with their kids’ individual strengths and weaknesses, and Christopher is no exception. “It’s the same as with any one of our other kids. You want them to have the best life they can. Those who think that because he has a disability, he has a bleak outlook—that is not necessarily the case—there are no guarantees for any child.”

Enjoying

Christopher’s future is unclear, and Paul and Susan are not without their worries; still, they expect good things for their son. They envision him attending public school, with some extra help and tutoring, getting a job, and living independently. “You want to make sure they have a good degree of socialization and independence, that they are not co-dependent on their parents,” he says. Like many parents of children with special needs, Paul worries what might happen to his son when he and his wife can no longer be there to look after him. The family has set up a trust with an estate planning attorney, for Christopher’s protection and their own peace of mind, and enthusiastically recommends this move to other families.

            The Ardis are grateful for the journey of parenthood, which Susan enthuses “is a fun one so far.” Christopher has brought so much joy to their family, and, Paul adds, he has taught them all some important lessons, like how to see the world in a more optimistic light. “Down syndrome people have an innocence about them,” Paul says. “On the one hand that can make them vulnerable, but it’s also a strength that many of us wish we had… In that there is a beauty.” Paul says that in this way Christopher is a role model for them.

Lisa Thibodeau is a local mom and writer who frequently contributes to Sacramento Parent magazine. Check out her blog, Paper Cup Poet, at listhib.typepad.com.