Education Summary

Individuals with Kabuki syndrome have widely varying intellectual abilities. As such the educational needs will be very different for each child. It would be unfair to provide predictions as to what an individual may be capable of. It can be said, though, that virtually all children will require some level of adaptation made to the regular school curriculum. The schooling methods vary depending on the child and location. Some children are mainstreamed in the regular classroom with an instructional assistant, others attend special education classes with some mainstreaming, others are home schooled. Speech and occupational therapies are often part of the curriculum. Better outcomes can be achieved when families, teachers, therapists and the child can communicate and work closely together to set and work towards goals.

SzymczakSome young adults have not been able to master reading, or only at very basic levels, while others are reading literature on par with their peers. However, many parents report a diminished level of understanding of content, in particular of concepts that require abstract thought.

Virtually all individuals with Kabuk syndrome have sensory processing disorders of varying degrees. Transitioning from one activity to another usually requires extra prompts and time. Occupational therapists trained in sensory therapy will often incorporate various techniques such as visual schedules, fidget objects, and weighted vests.

Fine motor delays make printing and other fine motor tasks very challenging for the child with Kabuki. Many children use computers to aid in the transcription of notes. Occupational therapists are often able to introduce therapies and adaptations that will faclitate the best outcome for the child.

Since speech delay is a common difficulty, children are usually under the direction of a speech therapist. Many children have difficulty with pronounciation - often not finishing their words (failing to say the last letter), making it seem as though their words run together. There are also a number of children who have a nasal sound to their speech because of anomalies with their palate, allowing air to escape through their nose. Gross motor delays will affect the child’s balance and coordination. Children with Kabuki syndrome usually have lax ligaments which means the muscles must take over the job their ligaments are not doing. This is further exacerbated by the fact that many also have hypotonia (low muscle tone). These combining factors may be the reason many children tend to tire more easily. Some individuals may have problems with dislocating joints. Although these are considerations to be taken into account, most children actively take part in group and individual sports.

Social development varies. Some children are very social - hugging everyone, and striking up conversations with anyone who will listen. Others have autistic tendencies, are not very social, and may have resulting behavioral issues. As the child matures, it becomes evident they have a decreased awareness of the nuances of socially acceptable behavior. It seems they take language very literal and fail to notice the visual cues we often use when speaking - sarcasm, facial expressions, etc. As a result, friendships become more difficult in the high school years. Understanding family and teachers can go a long way in helping the child remain an active participant in school activities. There are also programs such as Best Buddies that can foster friendships.

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