Talk to any parent whose child has been diagnosed with a disability and you will hear many of the same emotional descriptions: shock, denial, grief, rage. When their youngest son, Liam, was born in 2011 with Down syndrome, Dan and Rebecca Fields described it as “being dropped off in a foreign country where you don’t speak the language and you don’t have a roadmap to direct you home.”
With the help of their pediatricians, Dan and Rebecca became aware of the Belle Center and were paired-up with Belle physical therapist Julie Drafall. At 3-months-old, Liam began receiving physical therapy and his parents began to feel a little less lost. “Julie has been on this journey with us since the beginning,” said Rebecca. “Whenever we’ve been scared about the future, we can ask her questions about anything because there’s a comfort level there.”
The Belle Center merged into the St. Louis Arc in 2012, which led to another path of opportunities for the Fields to explore. In addition to their physical therapy sessions, they enrolled Liam in the St. Louis Arc’s Music Therapy classes and joined Capable Kids and Families, a St. Louis Arc program that lends families therapeutic toys and equipment to use in their home and provides information and family support.
Dan and Rebecca also took advantage of some much-needed Respite hours through the St. Louis Arc. The Respite program gives a break to families who are feeling over¬whelmed with the day-to-day responsibilities of taking care of their loved one with a disability. For the Fields it means they get to hire a caregiver for Liam for a few hours a month, while the Fields are reimbursed for the caregiver’s services.
“When you have the kind of medical bills that we do, the last thing we’re thinking about is paying for a babysitter just so we can have a few hours to ourselves to recharge,” said Rebecca. “Receiving the respite reimbursement funds makes a huge difference,” said Rebecca.
Liam is now a “ferociously independent” 3-year-old. He is walking, using sign language, and attends school part-time at an early childhood center. His physical therapist Julie still visits Liam and has been present to celebrate some of his biggest milestones, like when he took his first steps. “Julie and the people we’ve met at the St. Louis Arc have become part of our family because we’re all on this journey togeth¬er,” said Rebecca.
“It’s nice to know that you have an advocate for your child through an organization like the St. Louis Arc,” explained Dan. “And it’s assuring that your therapist cares as much about your child as you do.”
Down the line, Dan and Rebecca plan on signing up their two older children, Ellie and Eli, for the St. Louis Arc’s SibShops program – a support group for the siblings of chil¬dren with special needs – and Family Fun Nights, a monthly get-together with activities and celebrations at the St. Louis Arc Family Center.
“To know that the St. Louis Arc programs and the relation¬ships we’ve made there will be a constant in Liam’s life is so important to our family,” said Rebecca.
“People who give to the St. Louis Arc have an opportunity to profoundly change a family’s life,” said Dan. “This organi¬zation helps your child achieve their fullest potential.”