At almost 3 years old, Eden is one of the most voracious readers in Rainbows’ Early Care and Education program. Alexis Young, his teacher, notes that he loves to read. “He will sit and read books all day if you let him!” When he wants to go somewhere or when his parents come to pick him up from daycare, he pulls himself up and uses furniture to get to his Kaye walker, then takes off for his destination.
Eden began receiving Infant/Toddler Services from Rainbows at 10 months old. His mother, Jennifer, says, “Our pediatrician noticed that Eden wasn’t meeting his developmental milestones pretty early on, I believe around 3-6 months. She mentioned Rainbows and Early Intervention.” When Eden began receiving Infant/Toddler Services in the family home, his parents were very concerned about increasing his food intake and helping him to gain mobility. “At one point,” Jennifer says, “Eden was at 4% for weight, due to trouble latching and sucking from a bottle. I remember feeding him like a bird, with a syringe, to ensure he drank some milk.” In his first year of biweekly physical therapy sessions with Melissa Dougherty and monthly joint visits with his speech therapist, Eden worked to practice chewing and swallowing to help him eat a greater variety of age-appropriate foods. He also developed strength and balance to sit up on his own and remain upright in a seated position. He also progressed from army crawling to crawling forward on his hands and knees with the help of his early intervention team.
Jennifer and Spencer, Eden’s father, loved that Infant/Toddler Services took place in their home, and that Eden’s physical therapist was able to show them how to use household items in therapeutic sessions. “We would go to outpatient therapy and they used rollers and other things that we didn’t have,” Jennifer noted, “and at home they would show us how, using a towel or the wall and holding his back, we could help him stand up. It’s really nice to be able to incorporate that therapy with what we have at home.”
At one year old, Eden was diagnosed with HADDS EBF3, a rare, non-hereditary neurodevelopmental disorder. “The geneticist told us he is the 47th confirmed case in the world,” says Spencer. “It’s very underreported because of the number of tests recommend for the diagnosis. The symptoms and the conditions of the person who has it are extremely variable,” he adds. “There are some people who work and have a job when they are older and can take care of themselves with limited assistance, and there are some who are never verbal and stay non-mobile.”
In March of 2023, Eden joined his older brother, Oscar, at Rainbows’ Early Care and Education program at Kids’ Point. Eden has continued to receive physical and speech therapy at child care to improve eating and self-feeding, stability and independent movement. Eden began to use a push walker at the center. At the beginning, staff supported his hips to help him maintain balance while strengthening hip and leg muscles while he worked to move forward on his own. In coordination with his family at home and teacher, paraprofessionals, physical therapist, and speech therapist at Kids’ Point, Eden, who is non-verbal, worked on learning to hold his gaze and use his hands to indicate preferences and communicate signs like “more.” By October 2023, Eden was walking from the car to the center using his Kaye walker.
“Eden has definitely improved physically and I believe a lot of this has to do with physical therapy,” Jennifer says. He continues to develop stability in physical therapy sessions that are now focused on helping him to walk longer distances with one hand held for assistance. “He is mostly walking independently with a Kaye walker,” she says. Speech therapy has helped him to strengthen chewing, swallowing, and self-feeding skills that have led to improved weight. “At this point, he is able to eat a few soft solid foods and is running ~10-20% for weight,” says Jennifer. “I know a lot of kiddos with his genetic diagnosis had to start tube feedings, but we were able to avoid this, and I think a lot of this is due to speech interventions.”
Jennifer notes that, in addition to physical and speech therapy provided through Rainbows, “We were lucky enough to be able to bring Eden to outpatient therapy services.” Family Service Coordination provided Jennifer and Spencer with information to support his development. “Rainbows really helped us, as parents, in answering questions and guiding us with a child with special needs. We had no exposure to atypical children and the needs present before Eden. Rainbows really helps answer all questions.”
Jennifer and Spencer’s biggest concern now is “ensuring that Eden is able to connect with kids his age and be able to play with his older brother. That is one of our goals with therapy, and I think just working on his mobility has helped him to make connections.” His physical therapist notes that his improved mobility has also led to increased communication: “when we take walks, he will point to the places he wants to go.” He is also shaking his head for yes and no, and “he can sign when he is all done with an activity. Eden is an amazing little boy.”
