“It’s a great place to be. I love the fact that they’re caring, knowing my child can fracture a bone at any given moment. They treat her like she’s one of theirs – I don’t have to lift a finger. I would definitely recommend CSH because you feel like you’re home when you’re there.”

Autumn, a six-year-old girl with a sunny and sweet disposition, was diagnosed in utero with osteogenesis imperfecta Type 8, also known as brittle bone disease, a genetic disorder that causes bones to fracture and break easily. Her earliest fracture happened in utero, and throughout her short lifetime, Autumn has already experienced between 70 and 100 fractures.
In 2022, Autumn bravely underwent rodding surgery, which involved inserting metal rods into her tibias and fibulas to help with leg strengthening and the prevention of fractures. As part of her recovery, Autumn was referred to Children’s Specialized Hospital’s (CSH) outpatient facility in Bayonne for occupational and physical therapy services. She has been working on strengthening exercises and endurance with her physical therapist Kennedy Young and occupational therapist Nicole Nugent.
Outpatient Physical Therapy
In their physical therapy sessions, Kennedy leads with the approach of, “What we can’t change, we adapt to.” Together, they use creativity to support Autumn in completing activities of daily living or ADLs. Kennedy carefully considers everything Autumn does throughout her day, what she can do on her own, the things she needs help with, and how they can adapt her environment to help her complete activities autonomously.
During physical therapy, they primarily focus on mobility and strengthening in a way that allows for functional participation. Autumn struggles with hand dexterity when completing typical ADLs, such as getting dressed, eating, cooking, and even holding a hot lunch tray at school. To help improve these skills, Kennedy incorporates pushing and pulling activities, using grabber and hook tools, and trialing various adaptive techniques, including utilizing a lasso to work on opening doors, grabbing clothes off of hangers, and reaching for things on shelves.
These motions emphasize core and upper extremity strengthening to limit back pain and enable Autumn to continue scooting and propelling her manual wheelchair independently. “Autumn and I also love playing bakery and coffee shop. We practice pouring milk into cups to hone in on shoulder strength and precision to avoid spilling on the ‘customers.’ Autumn has come a very long way in respect to her core strength, trunk balance, and endurance since I began treating her,” reflects Kennedy.
Osteogenesis imperfecta often causes persistent anxiety and fear of getting hurt. For Autumn, trying new things is a constant analysis of ‘will this hurt me?’ When Autumn initially started therapy, she was terrified by the thought of scooting over a crease in the blue floor mats because in the past she had hurt herself easily during minor movements.
“Sometimes during a session, Autumn needs more encouragement than others. Despite this, she stares her fear in the face and goes for it,” Kennedy reflects. Nowadays, Autumn loves to slide up and down the ramps, transfer from uneven surfaces with no assistance, and can be found (to the dismay of her mother) rolling and riding on scooters to get around.
“It’s patients like Autumn who remind me why I started in this profession. She is so, so inspiring, brave, and resilient. Her progress is certainly made easier by the trust she and her mother have placed in her therapy team, a responsibility none of us take lightly,” Kennedy expresses.
“The therapy is really paying off. Autumn is more aware of her body and has experienced fewer fractures. We are grateful for the services Autumn is receiving at CSH,” Autumn’s mom, Dominique reflects.
Outpatient Occupational Therapy
In occupational therapy, Autumn works with her occupational therapist Nicole on improving her overall self-care skills by using adaptive equipment and clothing for dressing including button-up shirts or jackets with zippers. They are also practicing using fasteners so Autumn can limit reaching over her head, and utilizing shirts with buttons and snaps around the neck area to make it easier to dress herself independently.
“Autumn has made such amazing progress in using buttons and fasteners with some adaptations. We are working on enhancing her wardrobe to make her overhead dressing more independent,” Nicole highlighted.
Nicole even incorporated Autumn’s love for jewelry making into their sessions by making bracelets to help improve her fine motor coordination and strength.
“She makes every session so much fun, even when the clothes we have for practice don’t suit her style. She is truly a pleasure to work with and she takes every challenge head on, working with her team to make a solution possible,” added Nicole.
“I love the dedication. Both of her therapists were not afraid to do things that other people are scared to do, like pick Autumn up. They take their time. If Autumn feels like she has fractured a bone, her therapists handle it with care through immediate appropriate medical intervention,” Dominique explains.
Strengthening at Home
Autumn is very bubbly and talkative, and loves to do her nails and put makeup on her mom. She also enjoys attending her swim classes. Autumn is a Buddy Baseball player within the Bayonne Recreation Department, a program designed to help individuals of all abilities enjoy the full benefits of baseball participation in an athletic environment structured to their abilities.
During her time in therapy at CSH, Autumn’s most noteworthy accomplishment has been learning how to reach over her head and her overall increased strength. She’s taking everything she’s learned in therapy to continuously improve at home.
At home, Autumn is currently learning how to pick things up with chopsticks and tweezers to tailor her fine motor strength. She has a customized activity chair to support her overall mobility, which is suited to manage her scoliosis, or curvature of the spine, by preventing her from leaning back too far and her feet from hanging. The chair is specifically designed for her to do everything in. Additionally, Autumn’s parents, with input from PT Kennedy and OT Nicole, worked on creating modifications to her home environment like adding a sliding door and ramp attachment to her bed to allow Autumn to get up independently, as well as special chairs for increased accessibility to vanity needs like brushing her teeth and washing her face.
Autumn continues to make progress and increase her strength and independence alongside the guidance of her treatment team and parents.
“She’s been gaining the courage to do more things that seemed impossible before. Patience is a virtue and her therapists have so much of it,” Dominique shared.
Learn more about Pediatric Physical Therapy and Occupational Therapy at Children’s Specialized Hospital.