Physical Intervention for Children with Down Syndrome By: Joan Katz, DPT

• January 21, 2025
• 12 Min Read

By: Joan R. Katz, DPT

I was so proud of Kayleigh Williamson when she crossed the finish line of the New York City Marathon on November 5, 2023. Kayleigh is a young lady with the diagnosis of Down Syndrome (DS). It’s thrilling to watch anyone demonstrating their power and stamina. As a physical therapist (PT) working with children for 37 years, I specialize in facilitating movement in children with special needs. Working at Eis Laasois/Step-by-Step with other team members, I have used many approaches to assist my clients, including Neuro-Developmental Treatment (NDT), The Schroth Method, manual therapy, and other evidence-based treatments. My background as a certified Yoga Instructor and as an avid runner myself informs my helping every person reach their maximum skill level.

We all know that every child is special and no two children are alike. Children with DS have distinct and diverse abilities. Yes, there are certain common characteristics and often delays of various magnitudes in their sensory-motor development. The Early Intervention Program (EIP) begins services in infancy, addressing the effects of hypotonia and ligamentous laxity. 1- Excessive joint flexibility requires focusing on strengthening so that control of mobility can be attained. Difficulty with hypermobility of the joints can lead to lower levels of physical activity throughout the lifespan. 2- Our goal when working with a child with DS is not to achieve milestones earlier but to improve alignment and control through the developmental sequence to prevent future musculoskeletal issues, such as pain. As children become stronger and practice more controlled patterns of movement, milestones are reached, at their own pace. During this period of improving strength, graded control, balance, coordination, and stamina, the desire and joy of movement exploration blossoms. Children perform best when they feel safe and are engaged in age appropriate activities, with support, while learning to become independent.

Some other factors that clinicians evaluate and address with children with DS include ligamentous laxity which can be a cause of cervical spine instability. 3 Recent research has shown that only a small percentage of children had these symptoms, and, there was a low correlation between radiological findings and symptoms of instability. Cervical films are no longer recommended for every child with DS except when an infant or child presents with atypical head posture, torticollis, deterioration of walking and/or frequent falls. Any increase in fatigue after walking or deterioration of manipulation skills require medical attention and a referral to a pediatric orthopedist.

Foot/ankle deformities are common in children with DS, including pes planus (flat feet) which occurs in 91% of those evaluated. Children who have pes planus should be assessed for orthotics which promotes improved alignment in standing and during walking. Appropriate alignment and distribution of weight through the foot improves one-legged standing and other higher level gross motor skills such as running and jumping. Normal foot alignment is beneficial for overall posture and quality of life.6

When I begin working with a child with a diagnosis of DS I perform a comprehensive assessment, obtaining a full medical and developmental history. Concurrent issues such as seizures, visual and hearing deficits, cardiac anomalies, and issues with feeding and swallowing are important to consider. We are not only providing treatment, but make appropriate referrals when concerns arise. Creating a trusting relationship with a child and their family enables parental education for carry-over at home. The greatest successes I’ve had are with parents and siblings who participate in sessions. Some examples: Rachel’s sister Goldy advocated and gave her attention and enough time to show her abilities. Pinny’s sister Fraidy engaged with him daily with love and consistency. Yiddy’s’ cheerleading squad “kvelled” over her progress and made sure to provide adequate tummy time for prone exploration.

The question of whether to “enhance” basic services provided through EIP is often asked of PTs. Parents want to know whether they should try the Feldenkrais Method, Cranial-Sacral therapy, chiropractic, and other approaches. They want to know if they should go to “this” provider or “that” provider. They hear about other children and wonder if they are doing everything they could for their child. I remind the families I work with to focus on their child. Respond to your child’s needs and capabilities – be aware and compassionate of their present status, knowing that they are continuing to grow and change. More is not always better in movement. More can be over-challenging, over-burdening and lead to therapy burn-out. Children, at all ages, are children and need room to breathe. Children with special needs are like all other children in this respect – and we need to add activities carefully, watching closely that our child is responding positively. We need to ask questions and get answers that we understand when someone makes a suggestion.

Often parents look for more —an approach that may promise “better” results. PTs promote the highest level of development in the children we work with and join our families in the successes we achieved, all together, step-by-step. PTs use evidence based treatment to facilitate sensory-motor development focusing on alignment and control. PTs do not change muscle tone! Through appropriate hands-on facilitation and setting up of the environment we provide opportunities for strengthening and movement acquisition leading to milestones while maintaining alignment, and improving endurance and stamina to manage hypotonia and ligamentous laxity. We assist with appropriate orthotic management, encouraging pain-free movement through a lifetime. With high expectations for participation there are now more young people with DS who are physically active and, even, run the NYC Marathon!

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7. Ferrario C, Condoluci C, Tarabini M, Manzia CM, Di Girolamo G, Pau M, Galli M. Influence of Foot Morphology on the Center of Pressure Pattern in Patients with Down Syndrome. Int J Environ Res Public Health. 2023 Feb 4;20(4):2769. doi: 10.3390/ijerph20042769. PMID: 36833467; PMCID: PMC9957500.