I work with a 19-year-old man with CdLS. How does the Foundation advise parents and caregivers to teach appropriate expression of personal sexuality and addressing these needs?
Sexuality is a difficult area for families with older individuals with CdLS. Unfortunately, to my knowledge, there are no specific articles or brochures about this topic. We have held several workshops and open discussions about the topic in general and, anecdotally, some excellent suggestions have been brought up by other parents. This might be a good question to pose to other parents whose children have CdLS.
I will share some of the suggestions that I know about, keeping in mind that I do not know the developmental age of the young man:
- Allow personal touching only in the bedroom and/or bathroom. Discuss privacy and that touching is not wrong,
- Consider having the individual wear overalls or other clothes that make it difficult to reach the genital area.
- Consider that other people can take advantage of your child, and be cautious about supervision whenever leaving him. Consider birth control for females if in a potentially vulnerable situation.
- Do not allow your child to be aggressive sexually with other individuals. Tell him that it is wrong and use time out, or removal of privileges, or whatever disciplinary action usually works.
- Do the same with inappropriate use of words.
- Use calm music and quiet time in his room to help calm him down if needed.
- Avoid caffeine.
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