Our daughter with CdLS is seven years old. She has been experiencing such behaviors as peeling off the wallpaper in her room and smearing her feces. We are not sure how to address this behavior. Do you have any suggestions?
Your daughter sounds like she has some of the typical "compulsive" behaviors that all children with CdLS have -- picking and disassembling things, flipping things, and other repeated actions. Her smearing is usually a "phase," but could reflect some behavior learned, sometimes for its effect on the other people in the house as much as for her own gratification. Does the smearing behavior generate a reaction from you or other "grown-ups"-- such as might be something she enjoys making happen? Similarly, children with CdLS often learn to interact with their world in unusual ways because of their particular sensibilities (limb abnormalities, speech delay, neurological changes, etc.) so that they "enjoy" things that stimulate these senses even though the overall effect seems to us a BIG negative.
Behavioral: Try simple "shaping" techniques. Reward her for periods of "positive behaviors" (i.e. not peeling or smearing) with a favorite treat and lots of enthusiasm and whatever behavior of yours she responds to the most favorably.
Distraction: Provide alternative substances for her to smear, peel etc. Shape this into (eventually) a child's sense of the "right" and "wrong" things to play with. Try easier-to-clean things with potent (but more pleasing) smells.
Look at the medical: Is she distracting herself from some noxious inner sensations? Any behavior at this age is suspect for a manifestation of some internal discomfort. It is possible that she is experiencing pain related to a medical problem. Consider a visit to her pediatrician to rule this out.
DS/ TK 7-13-10
Legal Disclaimer: Please take note that the CdLS Foundation's Ask the Expert service is comprised of volunteer professionals in various areas of focus. Response times may vary and a response is not guaranteed. Answers are not considered a medical, behavioral, or educational consultation. Ask the Expert is not a substitute for the care and attention your child's personal physician, psychologist, educational consultant, or social worker can deliver.