“The therapists are all phenomenal with all the kids, not just mine. The level of patience they have is amazing, and you can tell they really care for the kids and love what they do,” Malikai’s mom Jennifer states.
Malikai is a sweet and spunky four-year-old boy who was diagnosed with spina bifida in utero, a condition that occurs when the spine and spinal cord don’t form properly. At just three months old, it was also discovered he has hip dysplasia, a condition that occurs when the hip joint doesn’t develop properly.
Malikai underwent several surgeries at a local children’s hospital. Following the surgeries, he was diagnosed with mild hydrocephalus, which is when excess cerebrospinal fluid (CSF) accumulates in the head, a condition that is strongly associated with spina bifida. To ensure this condition had a minimal effect on Malikai’s childhood development, he began early intervention services.
By age two, Malikai was referred to Children’s Specialized Hospital (CSH) in Bayonne, New Jersey, where he began outpatient therapy services.
Gaining Independence Through Occupational Therapy
Malikai has been receiving occupational therapy and speech and language therapy once a week for the past two years and physical therapy for the past year.
Malikai wears KAFO braces (knee-ankle-foot orthoses) which are leg braces that extend from the thigh to the foot to help control lower limb instability, supporting the muscles and stabilizing joints. These braces help keep Malikai’s legs in a straight position since he doesn’t have much feeling below the knees. They also help to address his clubfoot, which is a condition where the foot is twisted inward and down, with the toes pointed toward the opposite leg.
Since Malikai’s braces are bulky, CSH occupational therapist Nicole Nugent helps him work on dressing with oversized rings to rehearse the motor planning component of putting arms into holes and threading legs into pants. They also practice donning and doffing Malikai’s socks with mindfulness of his conditions since injury can occur if he pulls too hard or if the socks are too tight.
“Malikai has done an amazing job working on putting on his socks and shoes with little assistance and some cueing,” Nicole reflects.
He and Nicole work closely to improve strength, balance, and motor function through different activities. They practice tasks like picking up small items and placing them into containers to reinforce fine motor skills and coordination. This directly helps Malikai utilize adaptive fasteners on his clothes and jackets to stay attentive to dressing routines and other tasks.
Nicole also incorporates movement activities like the bouncy ball to improve control over his center of gravity, and help him engage in structured activities with a calm body and mind through improved attention and emotional regulation. Together, they practice safely using Malikai’s posterior walker to avoid injury, improve functionality, and participate in activities of daily living.
“Malikai is a super active little one who has come so far in managing his body and remaining safe in his movements!” Nicole reflects. “He is a firecracker when he enters the gym and is a joy to work with. He always keeps me laughing and, on my toes, while achieving his goals!”
Climbing Stairs with the Help of Physical Therapy
Malikai worked with CSH physical therapist Kennedy Young, where his latest accomplishment was walking independently and navigating stair-climbing with more ease. They focused on core strength movements through climbing, sit to stands, kneel to stands, and working on the treadmill and stairs. Through hard work, Malikai reached his physical therapy goals and was able to graduate from this service.
“Malikai loves to move and made my job very easy. He is an incredibly imaginative and playful kid who has not let anything get in his way when it comes to moving and playing. He has come so far and was one of the most joyful kiddos I’ve ever worked with! The day he graduated was so bittersweet, but I was proud of him!” Kennedy reflects.
Strides Through Speech and Language Therapy
In the spring of 2023, Malikai presented with expressive language disorder (ELD) and received initial speech therapy services at CSH for three months. When he started, he had a limited vocabulary and experienced difficulty using phrases and sentences to express his ideas with peers and family members.
Children with spina bifida may experience language delays, including difficulty forming words and speaking clearly, and challenges with producing complete and complex sentences. Malikai’s speech sessions focused on improving his language skills when doing activities and playing with toys that he enjoyed.
Malikai returned for additional speech therapy in the summer of 2024 with speech-language pathologist, Claire Scavone, to continue to work on improving his language skills. Currently, he is working on formulating longer sentences while using more complex information such as prepositions, pronouns, and adjectives.
“Malikai enjoys socializing and playing with his therapists and his family members! His spirit and upbeat attitude make his speech sessions fun and engaging for all,” Claire reflects.
He can now use language to explain what he wants and doesn’t want, share commentary, express joy, answer questions, and engage in simple conversations.
“The therapists are all phenomenal with all the kids, not just mine. The level of patience they have is amazing, and you can tell they really care for the kids and love what they do,” Malikai’s mom Jennifer states.
A Place for Siblings
After Malikai’s sister, Jennalize, was diagnosed with autism spectrum disorder and attention-deficit/hyperactivity disorder, she also began receiving occupational and speech and language therapy at Children’s Specialized Hospital.
“I love it. I love every minute of it. CSH is not just for Malikai, but for my daughter Jennalize,” highlighted Jennifer.
Jennalize engages in sensory-based activities with movement during sessions with occupational therapist Bridget Brummer. She is also working on her fine motor skills and bilateral coordination skills, which help her hold her pencil in school and complete scissor-crafting projects.
With speech therapist Claire Scavone, Jennalize participates in gross motor movement activities like swinging and climbing activities to facilitate language as she is more likely to communicate when engaging in these types of activities. They also talk about colors, shapes, or animals. Sessions consist of modeling language for Jennalize to provide her with opportunities to repeat and use language that is meaningful for her.
Jennalize is now able to communicate using familiar phrases to ask for what she wants, and what she doesn’t want, share joy, or make comments. She is also very expressive and thoroughly communicates her needs.
“Sessions with Jennalize are fun and it has been exciting to see her grow in her communication skills and connect with others,” highlights Claire.
“The therapists are so great – the kids are so attached and love them,” added Jennifer.
Learn more about Outpatient Programs and Services at Children’s Specialized Hospital.