Philanthropy is Changing Lives at the Child Development and Autism Center
When Waira and Eric Chard found out their daughter, Eden, had autism, the West Milford, New Jersey couple didn’t know where to turn first. “We had no idea what we were doing,” said Waira Chard. “It was world-altering getting that kind of diagnosis.”
The Chards could find answers to many of their questions and the expert care they needed for Eden at the Child Development and Autism Center at Goryeb Children’s Hospital, where philanthropy has impacted the program’s scope and breadth for almost a decade. The center has served triple the number of patients since it opened its doors, thanks to generous gifts from donors and, most recently, from the Brueckner Family Foundation, Jackie and Larry Horn, Andrew Markey and the Summit Foundation.
When the couple met with Kelly May, PhD, BCBA-D, who became Eden’s therapist for Applied Behavior Analysis (ABA) therapy, Dr. May had the tools and expertise to help Eden advance through her challenges. Dr. May also guided the Chards through their many questions and concerns. “Kelly was our advocate from day one; she gave us direction, told us what worked and what didn’t as far as therapies, and helped us navigate placing Eden in the right school for her needs,” added Chard.
The latest numbers from the Centers for Disease Control and Prevention estimate that autism has risen to one in every 54 births in the U.S. and New Jersey has one of the highest rates of diagnoses in the country: one in every 35 births. “Increased rates of children with autism and other developmental disabilities, combined with a continued decline in the number of clinicians who treat these conditions, have left families and children waiting months to years for access to care,” said Walter Rosenfeld, MD, chair of pediatrics for Goryeb Children’s Hospital and medical director of Children’s Health for Atlantic Health System.
Pivoting to serve these increased volumes, Goryeb Children’s Hospital is developing an innovative solution to address these challenges through the new Generalist As Specialist Fellowship for Developmental and Behavioral Pediatrics. This comprehensive program will train board-certified pediatricians in the recognition, evaluation and treatment of less severe forms of conditions such as autism and ADHD. These fellowship-trained pediatricians would then join community pediatric or family medicine practices where they can provide this specific skill set within the primary care setting.
To further support this growing community need, donor funding has helped hire eight new team members, including three nurse practitioners and one neurodevelopmental specialist. Creating an autism care navigator position and adding two ABA therapists helps families like the Chards find the services and treatments they desperately need. Since 2020, there have been 1,000 new cases of autism diagnosed at the Autism Center, with patient volumes surpassing 6,000 visits in the last two years alone.
Navigating the Pandemic
During COVID-19, the Autism Center shifted to a telemedicine option, serving as a beacon of support to families quarantining their children.
“Without the structure of school-based services, many children with autism had significant regression and behavior issues,” said Tara Gleeson, DNP, APN, manager of the Child Development and Autism Center. “Our social workers, autism care navigator, and ABA therapists took hundreds of phone calls and conducted virtual visits spending hours working directly with parents on behavioral interventions and strategies to best manage their children’s anxiety and behavior at home.”
A group of social workers and therapists at the Autism Center also developed a mask-wearing program knowing that children with autism often struggle with new routines and tactile sensations. “During the televisits, they helped prepare children to be more comfortable in returning to school and public spaces by wearing a mask – it was something many parents struggled with during this time and needed a good deal of support with,” added Gleeson.
As COVID-19 numbers surged in 2020, Dr. May worked at the Morris County Regional COVID-19 Vaccination Center in Rockaway, New Jersey, to make it easier for patients with autism and other developmental disabilities to receive their vaccinations. Similarly, the Autism Center is working closely with phlebotomists at Morristown Medical Center to improve the experience for patients with autism who need blood drawn.
Through a collaboration with Sam’s Neonatal Intensive Care Unit at Goryeb Children’s Hospital, the Autism Center, through donor support, can evaluate at-risk babies, screen infants for developmental concerns and assess 18-month-old toddlers for autism. They offer the same services for high-risk children with heart conditions at the High-Risk Cardiac Developmental Clinic.
Thanks to the generosity of donors, a new social skill group helps children learn to play and navigate social interactions. Many of the Autism Center’s patients are now learning critical interpersonal skills such as respecting another’s personal space, becoming a better listener and understanding the nuances of playing with friends.
Raya the Champion
Gayle and Ian Heitner’s first-born daughter, Raya, is a delight, and as first-time parents, they marveled at the miracle of her birth. As the months passed, however, they began noticing developmental delays. As early as 18 months old, Raya, now age three, had missed some significant speech milestones and was delayed in other areas, which led the Heitners to schedule a complete evaluation. Soon after, Raya was diagnosed with autism.
In October of 2021, the Heitners met with Dr. May; they connected immediately, and the couple felt grateful for her knowledge and the strong direction she gave them to move forward.
“It’s terrifying when you are searching for answers and then receive a diagnosis of autism for your child,” said Gayle Heitner. Dr. May helped debunk myths about other therapies that the Heitners had heard about but had no idea if they were viable treatment methods.
“On our introductory call with Dr. May, she told us that ABA therapy is the only proven therapy that helps children with autism,” Gayle added. ABA therapy is rooted in the science of learning and behavior and is used to help people with autism learn behaviors that help them live safer and happier lives.
Ian Heitner knows what his daughter can do when given the right tools. “Although terrifying, Gayle and I know how much of a champ Raya is, and with her empowered tools of ABA therapy, know that she can grow to be independent,” said Ian Heitner.
Dr. May also walked the Heitners through a donor-funded workshop, “Recent Diagnosis of Autism: What You Need to Know,” that helps guide parents through the maze of autism resources available throughout the community.
The Autism Center has proven to be a constant source of medical expertise, comfort and inspiration to the Heitners. Recently, Raya stopped eating solid foods, and Gayle’s first thought was to call Dr. May and ask her advice.
“Anytime I need guidance, she’s there to help me,” said Gayle Heitner. “I trust her completely; she’s informative and knowledgeable and responsive. There are so many choices on how to tackle issues; Dr. May has helped us have more confidence that we are making the right decisions for Raya.”
Gayle and Ian noticed positive changes after Raya began ABA therapy. She has better eye contact, and her social interactions are more natural.
“She’s more with us,” said Gayle Heitner. “It’s all we can ask for.”
To support the new Generalist As Specialist Fellowship for Developmental and Behavioral Pediatrics at the Child Development and Autism Center, contact Gerri Kling, foundation officer, at 973-593-2414.