Tuesday, May 14, 2013

PWS Awareness Day #14: Speech Difficulties, Including Apraxia

Speech difficulties are incredibly common in PWS, mostly resulting from low muscle tone (there's that muscle tone issue again). Babies who might lack a sucking reflex and the ability to move their mouths appropriately are set up for difficulties with speech. Low muscle tone makes it difficult for weak muscles to move with the precision that is needed for intelligible speech. 

Another common cause of speech difficulties is childhood apraxia of speech (CAS). Today is actually ALSO Apraxia Awareness Day! Apraxia is a not-well-understood neurological disorder affecting expressive speech. The issue is with motor planning, or basically the brain being able to tell the muscles what to do. The content for communication is in the child's brain, but the message between the brain and the mouth gets interrupted. Children with CAS have good receptive language (what they understand), but are extremely limited in what they can express). Therapy involves frequent (ideally, daily) sessions of drilling and repetition after repetition to "grease" that neural pathway and get the words out. Progress with children with CAS is varied. Most will learn to speak intelligibly, but much later than their typical peers. Approximately 40% of children with PWS have CAS.

This has been one of the most difficult, if not the most difficult, aspects of PWS for us. I'm trying not to cry just writing this. Dean's vocabulary is limited, and although he "talks" a lot, it's largely unintelligible. Apraxia is just so very frustrating. Dean is currently in speech therapy 5 times a week and progress is still so slow. I watch other kids his age chat away about all sorts of things and I wonder what Dean would say to us if he could. I wish I could ask more than yes or no questions on the way home from school. I wish he could tell me about his favorite part of the day. Dean is able to get his point across in one way or another when he needs to. Sign language is largely unhelpful because of Dean's fine motor skill deficits. Dean has a speech device like those you might have seen on the iPad, and he can communicate in entire sentences with it (you push buttons to say what you want and the machine speaks those words), so I know there is a lot in his head. He tries hard and yet gets really frustrated and discouraged if he can't say what he wants to or if we can't understand him. I long to hear him talk to me and say, "I love you" or to tell me in words how he feels. My heart hurts. This part of PWS definitely sucks.



1 comment:

Brendon Hudgins said...

To hear your child tell you that he or she loves you is probably one of the best memories you can ever have. I wish that every parent of a child with Apraxia can experience being told by their precious ones that they are loved. Thank you for such an eye-opening post. Good day!

Brendon Hudgins @ MedCarePediatric