When Braylen was a baby he was quiet. “People used to say, ‘He’s such a good boy, he’s so quiet,’” says his mother Cheryl. But his silence became a concern. At Braylen’s first birthday party in March 2010, while the other babies babbled and waved hello to each other, Braylen was his usual quiet self. “He was in his own world. He didn’t respond to his name.”
Soon after the party, Cheryl and her husband Mike consulted audiologist Nancy Whitham, AuD, CCC-A, a clinical coordinator in the Center for Childhood Communication at Children's Hospital of Philadelphia. “When a hearing problem was ruled out, I came home and cried,” says Cheryl. “I wanted it to be his hearing. I knew the signs of autism — I’m a schoolteacher.”
Both Whitham and Cheryl and Mike's pediatrician at CHOP Primary Care, Highpoint, Richard M. Santos, MD, recommended early intervention for Braylen through the state-sponsored Birth to Three program. They also referred Braylen for a full evaluation to Susan Levy, MD, MPH, a developmental and behavioral pediatrician and director of the Autism Integrated Care program at CHOP Specialty Care, Market Street.
The Claytons first focused on the early intervention program. They appreciated its structure at this difficult time: The occupational therapist (OT) and special education teachers would come to their home to work with Braylen on his fine motor skills and language. Braylen and his parents also attended weekly play groups coordinated by the county's early intervention program.
This program allowed Braylen to strengthen his play skills with peers as well as provided support for his parents. Cheryl and Mike acted as Braylen’s round-the-clock teachers, constantly working on his communication skills and practicing the skills they’d learned from his therapists.
But the program instructors weren’t equipped to make an official diagnosis that would qualify Braylen for additional assistance. So in January 2011, before Braylen turned 2, Cheryl and Mike took him to see Dr. Levy and her team.
An official diagnosis
Braylen underwent a series of tests for speech, language and social skills. Dr. Levy talked with the Claytons and spent time working with and observing Braylen. “Even though we were prepared for the news, it was still very, very difficult to hear ‘autism spectrum disorder,’” says Cheryl. ASD is a developmental disorder causing social and communication problems in 1 in 68 children.
The Claytons scheduled an appointment with Marianne DeCicco, MS, CCC/SLP, a speech-language pathologist in CHOP’s Specialty Care & Surgery Center, Bucks County.
Right away, the Claytons appreciated the intensity of her approach. “Marianne’s work was constant and patient. She laid the whole foundation carefully,” says Cheryl. Marianne worked with Braylen’s parents to identify communication opportunities and goals within their daily activities at home and in the community.
Breakthroughs for Braylen
Soon, Braylen began to make progress. A slow, steady build-up of learning led to lightning-fast breakthroughs once Braylen reached cognitive thresholds. “I always remember Marianne emphasizing the importance of building receptive language skills,” says Cheryl. “She’d say his receptive skills would feed into his expressive language skills. Over and over again, she’d ask him ‘Where is the pink bunny?’ ‘Where is the black bunny?’ ‘Where is the bumble bee?’ Braylen would point and point. When his first word was bumble bee, we were amazed. It had been almost two years since Marianne had first taught him what a bumble bee was.”
Within a few months Braylen was using three- to four-word sentences. “My husband and I were overjoyed when Braylen started requesting his wants and needs. Best of all: He was finally sharing his ideas and commenting on things he saw.”
From 3 years of age to before Braylen started kindergarten in September 2014, Braylen attended a special preschool conducted by the Montgomery County Intermediate Unit (MCIU) for a half-day program. He also attended a typical preschool with support services for the remainder of his day with typical peers. It was during this time that Braylen started making huge progress with his skills.
Braylen’s breakthroughs kept on coming, thanks to Marianne’s targeted therapy and his parents non-stop work to build his communication skills.
- The pair worked on understanding the sequence of events for years, and now Braylen can tell a story to his friends.
- A focus on directional work has made it possible for Braylen to follow instructions in class.
- Years of role playing has helped Braylen cope with transitions from one activity to the next.
Today, 7-year-old Braylen is a great reader and does well in math and writing. He’s in a general education classroom for the majority of the day. Braylen has a wonderful team of educators and specialists at his school district that have helped him make great progress with his skills. Always loving and calm, he is now fun-loving and funny in a whole new way. While his school provides autistic support, OT and speech-language therapy, Braylen continues to see Marianne for speech-language therapy and evaluations. “He can’t wait to see her, and he wouldn’t be where he is today without her.”
Cheryl looks back as she looks forward to the next set of milestones. “I always remember when we first came to see Marianne, I’d ask her, ‘Is Braylen ever going to talk?’ She’d reassure me, ‘He’s a smart boy. He has a lot inside of him. It’ll just take time for him to express it.’ She was right.”