CHARGE Syndrome Canada
Newsletter
Winter 2007
Vol. 1 No.13
Dr. Blake's presentation brief from the National CHARGE syndrome workshop
Research studies need participation
Developing an auditory training program
Past Edition of the Newsletter
BEHAVIOUR TIP
Our last issue featured an article by Ann Gloyn, Education Specialist on "Behaviour in CHARGE syndrome". We promised to include "Behaviour Tips" in future editions of the CHARGE Syndrome Canada newsletter that parents, professionals or individuals with CHARGE may have found useful.
In this edition, we begins with a vary important tip regarding developing communication around the issue of pain.
Children with CHARGE syndrome suffer from pain from a potential variety of sources: gastrointestinal reflux, ear infections, headaches and migranes, abdominal migranes, as well as muscle pain from scoliosis or missing tissue in various areas of the body.
Having a "PAIN CHAIR" designated in your home or program is an idea that may serve to reduce the frustration in trying to communicate what is wrong. The "PAIN CHAIR" can be the location where the individual will consistantly recieve medication. Langauge and communication booklets and signs that designate what the location is about are developed with support so that there is a whole experience about "THE CHAIR" and what its purpose will be.
It is hoped that the child will begin to develop a representational connection between "PAIN" and the object "THE CHAIR" so that when the child experiences "PAIN", he can let the care-giver know by moving to "THE CHAIR" to get medication. It is hoped that this will reduce the frustration of being unable to communicate what is wrong, or even to identify the often confusing sensory input that pain may bring. The connection can be also developed with the experience of getting medication to ease pain and "THE CHAIR", may begin to serve aslo a comforting function in the future.
~ ann gloyn, education specialist
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