Ace F Parents as Part of the Care Team: Ace Flim’s Story

Be part of the care team. As you are with your child day in and day out, always ask yourself, How can I make this a teachable moment?

Right around his first birthday, Ace Flim had an appointment with his primary care pediatrician for an annual checkup. At this appointment, the doctor typically checks-in with families about their child’s overall well-being and ensures they are hitting appropriate milestones related to their development. During the appointment, Ace’s mom, Theresa, shared that Ace was not yet interested in talking, did not answer to his name, and that overall, he was not hitting some of the milestones the doctor was referring to. This is when the pediatrician suggested looking into the Early Intervention Program (EIP) at Children’s Specialized Hospital (CSH). Quickly, Theresa contacted CSH for a developmental evaluation early that summer.

In July, Ace arrived for his appointment at Children’s Specialized Hospital in Hamilton where he saw a Developmental Pediatrician to evaluate the milestones he should have been hitting at this age. The physician carefully noted the toddler’s behavior and diagnosed him with autism spectrum disorder (ASD).

Theresa said that the initial autism diagnosis was a shock and came with many emotions. “When you hear your child has autism you can do a couple things,” she said. “You can choose to sit there and sulk and be mad, or you stand up and say my child will combat this diagnosis.”

Theresa chose the latter, making it her and her family’s mission to advocate for Ace and to help him reach his full potential.

Shortly following Ace’s diagnosis, Theresa worked with the team at CSH to set up early intervention sessions. She carefully noted the progress he made during these sessions, things she observed, challenges Ace faced, and additional tasks or behaviors she needed to report back on for his next session. “As Ace’s parent, I feel it is my duty to always advocate for him,” Theresa said. “Sometimes that might be in the form of research, or asking questions, posing new ideas, or even just getting the rest of the family on board,” she added. “It was even important for us to go beyond sessions with his clinical team and extend what he learned there into our home setting when they were not around.”

Children’s Specialized Hospital values the parent and caregiver’s role in the child’s journey to reach their full potential. In fact, Patient and Family Centered Care is the hospital’s philosophy of partnering with every child and family in every aspect of care. This standard of care throughout CSH is seen in our staff’s interactions with children and their families during every step of their journey – whether at one of our several facilities throughout New Jersey, via Telemed, or in the child’s home, like in Ace’s case.

“We love to see families involved in their child’s care,” said Donna Provenzano, Director of Patient and Family Centered Care. “At Children’s Specialized Hospital we believe that partnership with our families is essential and we value our families’ as integral members of their child’s health care team.”

Donna manages a team of staff who are family members of children who have used the CSH resources and services. This group of parents and caregivers provide the focus and unique family perspective required to build awareness, educate, engage, and fully integrate Patient and Family Centered Care principles into the health care policies, practices and services across the hospital. Donna added, “Theresa’s passion, resourcefulness, and involvement in Ace’s development and therapy is a wonderful example of Patient and Family Centered Care at its best.”

In addition to staying on top of Ace’s care and needs, Theresa made sure that her home environment would allow him to thrive in therapy sessions, especially as the COVID-19 pandemic ensued them. As a result, Theresa turned Ace’s playroom into a learning oasis by printing resources at home or purchasing items online to fill the room with toys and learning opportunities that mimicked what he would see in Children’s Specialized Hospital facilities. The revamped playroom now included bubbles, blocks, cars, manipulative sand, stackable shapes and colors, books, flashcards, and more.

“I encourage every parent to do this,” said Theresa. “Be part of the care team. As you are with your child day in and day out, always ask yourself, ‘How can I make this a teachable moment?’”

Donna supports that this piece of advice is so important for all families. Wherever the patient and family may be in their journey, advocating for their child, understanding them, and supporting them can be so beneficial to a child if parents and caregivers are able to. Parent and caregiver involvement and collaboration are key when striving to help our kids become their very best.

Thanks to the support of his entire care team including his family, Ace is thriving. While he is continuing to learn and grow every day, this Patient and Family Centered Care model has helped him build a solid foundation to continue reaching his full potential.