Rett syndrome is a genetic condition with early symptoms similar to autism. However, unlike autism, it is a degenerative condition and has a specific progression. The activities that are beneficial to people with Rett syndrome are different for each stage. This article talks about the four stages of Rett syndrome and suggests activities for every stage.
Stage 1: Early Onset
This is the first stage of Retts syndrome where the child may show a delay in achieving motor milestones. Here are some examples of activities for Rett syndrome at this stage:
The child is encouraged to participate in fun, motor activities. Some examples are obstacle course, running, walking, rolling, climbing stairs, climbing bars, trampolines etc.
Educational activities that aim at teaching vocabulary, improving attention and self care skills can be introduced to the child. Some activities that you can use are songs, stories, simple puzzles and preschool educational toys.
Children with Rett syndrome will enjoy and benefit from activities that provide sensory stimulation. These include swings, slides, rocking horses, swiss balls and also tactile activities like sand play, water play and finger painting. Here are some more ideas for sensory activities that you can use.
Stage 2: Rapid Destructive Stage
At this stage the child will start losing their motor, cognitive and social skills. Activities for this stage will be the same as the activities employed in the previous stage. At this stage it is important to maintain a routine for physical activities and ensure that the child is participating in things like walking every day, which will help to decrease the rate of deterioration of motor skills.
Stage 3: Plateau Stage
At this stage the deterioration of the child will plateau. The child must be engaged in simple structured activities that he or she is able to do. Verbal communication is usually lost by this stage and activities will have to incorporate other methods of communication.
Physical activities at this stage aim at maintaining the available physical skills and preventing further deformities. Activities like throwing a ball and reaching for objects kept at a higher level can help to maintain the upper limb strength and range of motion. Similarly, crawling, rolling, standing and walking with support can help maintain skills of the lower limbs. When the client is not able to voluntarily control movements, the therapist or caregiver may help the client to passively do these activities, to prevent deformities.
Sensory activities are very important at this stage. The client must be given opportunities to experience all sensations including movement and positions, touch or feel, hearing, vision, taste and smell. As the client may not be able to actively participate in activities that provide these experiences, the various sensations need to be brought to the client. While helping the client do such activities, we need to give them time to respond to each sensation, and a break between each activity.
Stage 4: Late Motor Deterioration
At this stage, a client may not be able to control their body, and may be fully dependent on a caregiver. However, it is said that people with Retts syndrome are able to engage socially at this stage. Activities for Rett syndrome here will be similar to the previous stage. In addition, the client is encouraged to be a part of regular social and community life.
A, S. (n.d.). Rett Syndrome: Characteristics, Causes, and Treatment. Retrieved from https://www.lynchburg.edu/Documents/GraduateStudies/Journal/ScruggsA.doc
Sarojini Budden, M. M. (1990). Communication and Oral Motor Function in Rett Syndrome. Developmental Medicine and Child Neurology , 51-55.