Pierre Robin Syndrome

[ajr@vdot.net]

Hi: I was moved by all of you parents and what you are going
through. I am a special education teacher, and thought you might
like to hear of a child with this syndrome in my class. He is 7
1/2, much older than the doctors ever said he would be. Is
profoundly retarded, but very curious about his world. He is
currently learning to walk using a specialized gait trainer. He
currently eats regular food, just cut small. He loves to drink
and can do so independently with the aid of an adapted cup. He
receives speech therapy (he is non-verbal), occupational therapy,
and physical therapy. Even with his limitations, he is a happy
boy and an integral part of his family and school. If you need
any info, don't hesitate to write.

[Nancy]

I am also a special education teacher, and I also have a child with Pierre Robin Syndrome in my preschool class. I haven't been able to find if there is any relationship between PRS and cognitive delays. Any info from anyone? Our team is now exploring various communication methods for this child, since she tries to speak but is not totally intelligible. ( I'm not saying too much to ensure confidentiality.) Any info on oral motor development and hope for better articulation? Thanks.

[Anonymous]

have association with 5yo with Pierre Robin, cognitive delay, non verbal, trach. Have you tried sign language at all? Some frustration released through sign language communication.