Charlie

C

aitlin was in her second trimester of pregnancy when she and her husband received an unexpected diagnosis: during routine genetic testing, they were told that their first child had a chromosomal disorder called Trisomy 21, also known as Down syndrome.

“As a nurse,” Caitlin explains, “I immediately took the ‘health care’ route and started researching and learning as much as I could about the diagnosis, and what it would mean for our lives.”

What they were not prepared for, however, were the struggles they would face in navigating through the medical system after their son, Charlie, was born. “We thought we had prepared as much as we could,” says Caitlin, “but we were shocked by how difficult and complex it was to access the resources and care that Charlie needed.”

After struggling since birth with eating and weight gain, Charlie had a feeding tube placed when he was three months old. Soon after, he began receiving early intervention services at an organization near the family’s home. However, Caitlin didn’t connect with the therapist’s style of teaching: she was given printouts to review at home instead of being shown how to work with Charlie during the sessions, and rather than meeting with an entire team of specialists, there was one OT working on all areas. Caitlin became increasingly discouraged, especially since her therapist couldn’t provide more intensive therapy for feeding, which was an area that they particularly needed help.

Caitlin shared her concerns with a friend who worked as an adult occupational therapist, and after contacting colleagues in the field, her friend connected her with Gay Burton, Therapy Department Coordinator at Boyer Children’s Clinic. Charlie visited Boyer around his first birthday, and Caitlin and her husband were so impressed with the services and staff that they immediately enrolled him. His progress from there on was amazing.

“I realized what a difference teaching styles make in the success of both the child and family,” shares Caitlin. “Gay did a lot of ‘showing’ and I personally learn best by seeing it done via demonstration. I began feeling like a better advocate for my son.” She also appreciated the coordinated team approach that Boyer offers, and in addition to Gay, worked directly with Jenny Thies (Family Resources Coordinator), Emily Chapman (Speech-Language Pathologist), and Denise Swanson (Education Department Coordinator).

“That first year was really, really difficult,” says Caitlin. “He had the feeding tube placed, and had to have heart surgery due to a structural abnormality. I struggled with depression, and felt like a failure because I couldn’t get my child to do something as simple as eat. But things really turned around by his second year. He was able to get his feeding tube removed – a huge milestone for us – and it’s been so great to see him grow and thrive and change.”

“Thanks to Boyer, my husband and I have become better advocates for Charlie. Now that he’s a bit older and we’ve gone through a few Individual Family Service Plans at this point, we are finally able to articulate what we want to work on. When our journey began, they’d ask what we wanted to learn, and there was just so much that we didn’t even know where to begin.”

Once Charlie was 18 months old, he also began participating in Boyer’s preschool program. “We absolutely love it. They provide arts and crafts, and allow him to be completely creative. I don’t have to worry at all, he gets everything he needs during that time: therapy, music class, lessons in sharing, art, playtime in the gym. It’s wonderful.”

While Charlie’s first two years have been filled with both joys and challenges, Caitlin feels like they’ve come out on top. “When Charlie was little, I used to really notice the differences between him and other kids his age. Now, it’s easier to notice the similarities,” reflects Caitlin. “He’s a people person and definitely a daddy’s boy, and loves any sort of social interaction. He loves going to the park and playing on the swings. And he loves anything that he can throw. He recently discovered walking, and loves to crawl up stairs. The only time he gets frustrated is when he can’t communicate. That’s when his ‘two-ness’ comes out. But he uses sign language quite a bit, and really works to do things himself.”

“Our family is so grateful that we’re able to be part of Boyer,” says Caitlin. “We found an incredible team that has not only helped Charlie, but has really helped my husband and me become his best supporters and advocates.”

Amélie