How Water Transforms Life for Individuals with Rett Syndrome

How can the aquatic environment enhance the quality of life for individuals with Rett Syndrome? We will take a deep dive into what Rett Syndrome is, explaining how it affects both physical and cognitive development, and how we adjust our teaching strategies to meet the individual needs of every swimmer, regardless of their challenges.

By understanding the condition and the swimmer’s unique needs, we can create a more effective and compassionate approach to aquatic therapy and adaptive swim.

What is Rett Syndrome?

Rett syndrome is a rare condition that is caused by a mutation on the X chromosome, in the MECP2 gene, primarily affecting girls, but can also affect boys.

It is characterized by a period of normal development and then severe regression by 18 months of age, in motor, language, cognitive, social and breathing function. There can be complications such as seizures and spinal deformities such as scoliosis.

The progression of Rett syndrome varies among individuals and while there is no cure currently, there are huge advances being made in experimental treatments.

To learn more about this condition and the research being done for treatment please visit The International Rett Syndrome Foundation.

Benefits of the Water for Rett Syndrome

Aquatic Therapy and adaptive swim lessons are incredibly beneficial for children and young adults with Rett Syndrome.

For anyone that has ever worked with a client with this condition you know how impactful and joyful being in the water can be for them. From the deep soulful gaze into your eyes, and radiant smiles, you can feel the magic of the water helping with so many things.

Let’s talk about three key therapeutic properties of the water and why they are particularly helpful for individuals with Rett Syndrome:

  • Buoyancy
    The gravity eliminated environment of the water makes movements that are effortful out of the water, easier and fully supported. Because individuals with Rett Syndrome often have underlying low muscle tone and weakness, buoyancy helps make movement feel effortless.

    TIP: To help with upright activities like standing and walking, adjust the amount of weight bearing by changing your depth in the water. This allows you to adjust the amount of buoyancy support as needed.

  • Viscosity
    The thickness of the water surrounding and supporting the body helps to slow movement down. Since decreased motor planning and slower processing are characteristics of Rett Syndrome, this property is vital.

    TIP: The viscosity allows for the slower processing time so that motor planning a balance reaction can be more successful.

  • Hydrostatic Pressure
    The pressure surrounding the body increases as the swimmer goes under water. Physically able and sensory seeking children with Rett Syndrome especially love the input of water; it surrounds their bodies like a 360-degree blanket of deep pressure. This is very regulating.

    TIP: It’s also helpful to move in and out of the water with specific therapeutic handling to assist with regulating breathing and encouraging deep breaths. This allows you to use the water to assist and resist the respiratory muscles as needed.

Characteristic Behaviors Seen in Rett Syndrome

To meet each swimmer’s needs, we must understand the unique presentation of Rett Syndrome and tailor aquatic therapy interventions accordingly.

  • Repetitive and Involuntary Hand Movements

    • Hand-wringing, squeezing, or clasping.
    • Hand-to-mouth movements (mouthing).
    • Rubbing or hand washing motions.

  • Communication and Social Behaviors

    • Loss of verbal speech.
    • Reduced social engagement.
    • Eye contact and tracking: individuals may have intense eye communication and use their eyes to point or communicate nonverbally.
    • They may have augmentative communication devices that they use.

  • Mood and Emotional Behaviors

    • Increased irritability and agitation.
    • Laughing or screaming spells.
    • Anxiety and fear.

  • Breathing & Other Symptoms

    • Irregular breathing patterns.
    • Air swallowing which can cause uncomfortable abdominal bloating.
    • Grinding or clenching of the teeth.
    • Poor circulation can cause small hands and feet to be cold and appear purplish or bluish.

  • Movement and Motor Behaviors

    • Gait abnormalities.
    • Apraxia/Dyspraxia: The impaired ability to perform purposeful, skilled movements, which affects speech and eye control.
    • Low muscle tone (hypotonia).
    • Toe walking.
    • Body rocking.
    • Spinal deformity.

Case Study: Using Sensory Input to Unlock Balance Reactions in Rett Syndrome

For our swimmers with Rett Syndrome, common motor patterns like hand wringing and hands-in-mouth can interrupt aquatic therapy progress.

The challenge: How do we provide the necessary sensory input to calm these patterns so we can focus on essential functional skills?

Our Solution: Targeted Sensory Input with Wrist Weights

We often use small wrist weights to deliver gentle, consistent input into the hands. This simple adaptation helps keep their hands down and away from the face, clearing the way for functional hand use for swim skills and therapy goals.

Adaptive Strategy: Respect Processing Time

Beyond the weights, successful aquatic therapy or swim skill acquisition requires an understanding of processing time. When working on a skill like balance reactions, you must allow enough time for your swimmer to register the change in their body position and initiate their movement response.

Remember, patience and waiting are key!

See It In Action: Vivien’s Success Story

Watch this powerful tip in action with our sweet swimmer, Vivien (age 2 1/2), who has Rett Syndrome.

Case Study: Tailoring Swim Therapy to Overcome Key Challenges in Rett Syndrome

We’re excited to introduce Maggie, one of our amazing aquatic therapy clients living with Rett Syndrome. Maggie’s journey with aquatic therapy is a powerful example of how personalized adaptive techniques can make a profound difference in the progress of children with special needs.

The Swim Angelfish team knows that while children with Rett Syndrome may not have language, they have an incredible capacity for connection and “look into your soul” like no one else.

The Challenges We Focus On

Throughout this session, we tackle specific movement and safety benchmarks that are often challenging for swimmers with Rett Syndrome.

  • 1
    Forward Weight Shift
    Maggie, like many with Rett Syndrome, has difficulty initiating this key motor skill, which affects everything from climbing to changing direction in the water.
  • 2
    Rollover
    This is a truly important swim skill benchmark for safety and independent mobility.
  • 3
    Breathing
    Maggie has a tendency to stay underwater while swimming and struggles with the motor planning required to come up for a consistent breath.

Our Adaptive Approach with Maggie

You’ll see how we tailor each activity to Maggie’s unique abilities, ensuring she feels supported, safe, and motivated in the water.

  • Promoting Forward Weight Shift
    To help Maggie initiate movement, we utilize therapy techniques based on Neuro-Developmental Treatment (NDT). This involves prompting a lean to the weight-bearing side so she can lift the opposite side. We always allow for adequate processing time to give her a chance to initiate the movement on her own.
  • Mastering the Rollover
    Maggie practices this core skill on a thick noodle for reliable support. Her instructor uses hand placements, starting at the core and moving distally, while offering prompts to encourage Maggie to motor plan the rollover independently.
  • Learning to Breathe
    To support Maggie’s work on coming up for air, we use a thicker noodle. The noodle provides the stable support needed for her to practice the motion for rhythmic breathing as she swims underwater. Watch how these personalized adaptive techniques transform Maggie’s session:

Transforming Ability: The Freedom of Movement

The water allows you to use it’s powerful therapeutic properties to unlock the freedom of movement that gets trapped inside of individuals with Rett Syndrome.

To learn more techniques for working with individuals of all abilities in the water discover our professional online training for both Adaptive Swim and Aquatic Therapy.

Ailene Tisser, MA, PT, Founder

Ailene Tisser, a pediatric Physical Therapist with over 30 years of experience and co-founder of Swim Angelfish® and the Swim Whisperers® method, specializes in aquatic therapy and adaptive swim for children with special needs. Trained in NDT, DIR/Floortime, and certified as an Autism Specialist and Primitive Reflex Specialist she fosters water safety, confidence, and independence in her young clients. Ailene is also passionate about educating aquatic professionals, setting a standard of excellence for adaptive aquatics training and professional development.

Cindy Freedman, MOTR, Founder

Cindy, MS, OTR/L is an occupational and recreational therapist with over 30 years of experience specializing in pediatrics and aquatics. Driven by a passion for helping children with special needs reach their full potential, Cindy co-founded Swim Angelfish, an organization dedicated to providing adaptive swim and aquatic therapy services as well as professional training. Her expertise in sensory integration, reflex repatterning, and aquatics, coupled with her love for water and experience as a national champion diver, has enabled her to make a profound impact on the lives of countless children. Cindy is certified as an Autism Specialist by IBCCES, and shows an unwavering commitment to improving the lives of children with special needs.