Embracing the Unexpected
Fifth grade was a good year for Brody. He enjoyed school, loved his job sorting mail and delivering it to the teachers at his school, and his classmates voted him as having the “best winning smile.”
Now 12, Brody has come a long way in a short time. Born with Down syndrome (trisomy 21), a developmental disorder that causes intellectual disabilities and a host of potential other medical issues, Brody is deaf in one ear and had severely limited communication skills during his early years. He communicated with his family using sign language until his verbal skills caught up.
Today, Brody is a fairly typical pre-teen boy who likes to talk, listen to music, and meet new people. The medical issues he has — near-sightedness, seasonal allergies and attention deficit/hyperactivity disorder (ADHD) — affect many of his typically developing peers. But nothing can damper the spirit of the rising sixth grader.
“He is outgoing, friendly and even stubborn at times,” says his mom, Kim.
Brody is especially particular about his collection of trucks in his bedroom, and if one is out of place, he knows it. His bedroom is decorated in shades of orange, blue and yellow, all bright colors to provide stimulation, his mother says. He has a bed that is more like a tent — with stars that dot across the ceiling — and he can “camp out” whenever he wants. Most days after school, Brody retreats to his room to listen to music and sing.
A special honor
Brody has been a patient of the Trisomy 21 Program at Children’s Hospital of Philadelphia (CHOP) for only two years, but his family has long attended the CHOP Buddy Walk® and Family Fun Day. This year’s event is extra special to Brody and his family because he is representing thousands of children and young adults with the disorder as a CHOP Buddy Walk® Champion. Brody and his family plan to wear matching T-shirts and walk under the “Lil Pez” banner, short for their last name.
The 18th annual event raises critical funds that support breakthroughs in research, family-centered care, and treatment for people with Down syndrome.
“The Trisomy 21 Program and its wonderful staff have helped us keep a step ahead in caring for Brody’s needs,” says Kim. “We’ve been impressed with how knowledgeable they are and how many resources they have available. I wish we connected with them sooner.”
With advances in prenatal imaging, many families learn they are having a child with Down syndrome before birth. That was not the case for Kim and Ken.
After Brody was born, Ken broke the news to Kim: “It’s a boy and he has Down syndrome,” Ken said.
“I was in shock,” Kim says. A doctor at the local hospital gave Kim some unsolicited advice: “I know this isn’t the child you were expecting, but this is who he is and you will have to deal with it.”
At first, Kim thought the words were harsh and insensitive, but years later she realizes the doctor was just being realistic. “She was just trying to harden me up,” says Kim. “It was good advice … She was saying, ‘Here it is girl; this is your life.’”
While most of the couple’s friends expressed sorrow about Brody’s Down syndrome diagnosis, Kim was exhilarated when one friend called to congratulate her, saying how lucky she and her husband were to have a child with Down syndrome.
“She was right,” says Kim. “Brody is so happy about everything and anything. He is our gift.”
Brody loves his siblings — Carissa, 9, and Kyle, 7 — and wants to be with them all the time. That said, he’ll battle with them for the front seat spot before every family car ride. “He’s the oldest and thinks he deserves it every time,” Kim says. While the sibling squabble can be annoying at times, Kim says she’s proud of Brody for speaking up about what he wants.
Brody has a special bond with his dad, Ken. Every Sunday, they visit Ken’s work, then head to Dunkin’ Donuts. Their order is the same every week: coffee for Ken, 10 munchkins and apple juice for Brody. And, of course, they bring treats home for the rest of the family.
Brody is also very close to his maternal grandfather, who lives across the street from his family, and he loves spending time with his paternal grandparents at their beach house in Ocean City, NJ.
Thumbs up for Brody
Brody can do many things for himself, but his family continues to help him with certain everyday tasks like tying his shoes.
“He does things I never thought he would,” Kim says. “And sometimes he amazes me with what he can do.”
For example, Brody has an incredible sense of direction. “He only has to go somewhere once and then he’s telling me where to turn to go back,” she says.
When Brody made his first Holy Communion, Kim said she was worried he wouldn’t accept the communion wafer — just to show off his stubborn side. Instead, Brody graciously accepted the host and then “turned around and gave us the thumbs up,” Kim says with a laugh.
Brody’s long-term future is uncertain. His parents anticipate he’ll live with them for life, though they are open to the possibility of a group home with his peers if that’s something he’s interested in. They also hope he’ll be able to work and contribute to his community.
For now, though, Brody’s parents are trying to keep up his routine and build in some fun, special events like the CHOP Buddy Walk® and summer camp. Brody is attending an extended school program during the summer and is looking forward to his third trip to the Variety Club Camp, which caters to children with special needs.