Have you heard of Rett Syndrome? Rett Syndrome is a rare developmental disorder caused by a specific type of genetic mutation which results in a range of difficulties including speech, communication, and swallowing. Each October, the International Rett Syndrome Foundation conducts a campaign to raise awareness of this disorder. In support of Rett Syndrome Awareness Month, this week we’ll provide some basic information about Rett Syndrome and how a speech-language pathologist can help.
Rett Syndrome is rare, occurring in only one out of every 23,000 live births, and only affects girls. A child with Rett Syndrome typically experiences normal or near-normal development in early infancy, up through about six to eighteen months of age. This is followed by a period of regression in which many skills are lost. Brain function is disrupted, causing issues with cognitive, sensory, emotional, and motor function. Breathing, sleeping, and swallowing patterns are typically affected as well. Although the type and extent of disability can range widely between individuals, the deficits caused by Rett syndrome are significant, making even simple day-to-day tasks a challenge.
Professional intervention and therapy can help significantly increase the quality of life of a child with Rett syndrome. Although most children with Rett syndrome lose the ability to speak, a speech-language pathologist is often involved in therapy. Rather than targeting speech itself, the speech-language pathologist will often help the child and family to devise other forms of communication and helping them to learn to use it effectively. This may include assistive technology, such as a communication device or even simple picture boards or flash cards. The speech-language pathologist will also help assess the child for breathing and swallowing difficulties which may affect their nutritional intake.
Has your child been diagnosed with Rett Syndrome? Share your story in the comments section below!
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