Friday, November 26, 2010

Speech and Communication Therapy in Rett Syndrome

Speech and Communication therapy is sometimes a hard one for parents of children with Rett Syndrome to grasp.
I can remember my daughter being 3 years old and not understanding why speech therapy was necessary. She couldn't talk after all and more than likely wasn't going to be able to. Speech therapy isn't what you would think of. When I was a kid I had to go to speech therapy because my R's were W's. Water was Rater and Rain was Wain.
Speech therapy is more like Communication therapy. It's very easy to give up on your girl. Please don't. We practice at home as well as school. We have a book of choices for her to slap at as well as video flashcards,books and more.
Here are two videos taken about a year or so ago. I tried to take video of her the last few days and she absolutely will not cooperate if it is just me and her so I have to take a back seat role. You will have to pay attention to HOW your own daughter communicates. Abby will sometimes hit a picture right away..sometimes she looks at it at sometimes she will face point.
For you newbies I highly recommend you checking into literature by Linda Burkhart to understand your child.
You can find an excellent paper at and clicking on Resources at the top. It will take you to a wealth of information.
Click on
Multi-Modal Communication Strategies for
Children Who have Rett Syndrome
Linda J. Burkhart

I sometimes struggled to believe my own child could communicate until I read this paper and it was like she was talking about my Abby. It's 10 pages long and you wont be able to put it down. I honestly believe no teacher or therapist should work with a Rett Girl without reading it. Here is page 1 only..

Adopt these Beliefs:
• Everyone Communicates
• Communication Begins with Intent
• Getting from Intent to Action is What is Difficult for Girls with Rett
• The result of the effort, must be worth the effort
• Girls with Rett Syndrome’s most profound disability is Apraxia or Dyspraxia
• Apraxia is the inability to carry out a cognitive intent - The child intends to
move a particular way, but the neurological signal doesn’t reliably get to the
right muscles to move them consistently
• Some motor skills remain intact - but only when triggered with an automatic
event that doesn’t require forethought or cortical intent. This can be
confusing and may be interpreted by others as stubbornness, because it
seems that the child can perform a task some of the time. However, the
harder the child tries, the harder it is for her to perform it on demand.
• Sometimes the child seems to need to move away before moving toward what
she intends. If you don’t wait for the child to finish the intent, it may
appear that she is rejecting or responding incorrectly, when in reality she
hasn’t finished her movement yet
• Delayed processing from intent to movement is typical for these girls
• Apraxia also affects muscles that control speech
• Apraxia affects other communication skills - including ability to use some
non-verbal social signals and sustained eye contact
• May make it difficult to maintain eye gaze and move eyes between a desired
object and a person who might be able to retrieve the object
• Waiting for a response with patient anticipation is critical to success. The
child learns which people will likely take the time to wait for her, so she can
decide if it is worth her effort
• Sometimes talking the girl through the motor movements and /or modeling
them can be helpful.
Linda J. Burkhart p. 1

Enjoy the videos and let me know if you have any questions.

Reading and identifying

Colors and Shapes

1 comment:

Tuška said...

It´s amazing! Abby is such a lovely and smart girl! I love your blog.