October is Rett Syndrome Awareness Month

October is Rett Syndrome Awareness Month!

What is Rett Syndrome? Rett Syndrome is genetic, neurologic disorder caused by a mutation on the X chromosome.  Rett Syndrome primarily affects girls, but it can affect boys as well. ¹

Rett Syndrome was once thought to be a diagnosis impacting cognition.  However, it is now considered a motor disorder, affecting walking, talking and functional use of hands.  Apraxia is one of the major characteristics that impact people.  Apraxia affects an individuals ability to carry out their intent.  They know what they want to do, but their bodies do not always cooperate.  It is crucial to keep in mind that this does not equate to cognitive delays.  There are other ways our kids can access communication and learning.  Individuals with Rett Syndrome are very expressive with their eyes.  Eye gaze is very much a strength, and many use this as their access to communication!

Years ago, Rett Syndrome was thought of as a degenerative disease, however we now know this is not true.¹ While there are periods of regression, skills can be recouped and individuals continue to learn and gain skills throughout their lifespan.  We presume potential in all those that we work with, and always strive to help those we work with continue to learn communication and literacy!

 

References
¹ https://www.rettsyndrome.org/