International Cri du Chat Awareness Week
Today’s post is in honor of the first ever International Cri du Chat Awareness Week and the lovely young lady pictured here (as well as in the brochure linked below).
Cri Du Chat Syndrome (CdCS, also called Lejeune’s syndrome and 5p deletion) is a low incidence genetic disorder caused by a deletion on the short arm of chromosome 5 (5p-). Most children with CCS experience general developmental and communication delays, some of which are quite significant. They tend to have strengths in receptive language. Their speech is often marked by frequent articulation errors, small phonetic inventories, and restricted syllable shapes. Many infants and children with CdCS also have feeding and swallowing difficulties. Children with CdCS have a higher co-occurrence of cleft lip/palate.
1. 5p- Society (US) and the Annual Conference: Positive Attitude, Reaching New Heights (July, 26-29 in Denver, CO). This group also has a network of Family Support Services.
2. Cri du Chat Support (UK) and link to their DVD on Understanding and Changing Challenging Behaviour in Cri du Chat Syndrome.
3. 5p-/Cri du Chat Support Group (Australia) and their video to promote awareness of CdCS
4. Cri du Chat Facebook Group (primarily in Spanish)
5. Cri du Chat Syndrome blog
6. Article on the use of manual signs in children with Cri du Chat Syndrome
– Erlenkamp, S., & Kristoffersen K.E. (2010). Sign communication in Cri du chat syndrome. Journal of Communication Disorders, 43,3, 225-251.
7. Brochure on Cri du Chat
8. Article on communicative development of children with Cri du Chat
– Kristofferson, K.E. (2008). Speech and language development in cri du chat syndrome: A critical review. Clinical Linguistics and Phonetics, 22, 6, 443-457.
9. Cri du Chat Blog: Anything is Possible with Hope and Love
Many people with CdCS use AAC successfully. Siobhan is a great example of a young lady who uses a full range of AAC, including visual schedules, PECS, and SGDs. If you run into any non-believers, share these videos of Siobhan using AAC in school, feeding her dog, going out to eat, and talking about things she likes to do.
Please help spread the word about CdCS, which goes undiagnosed in far too many children, and the use of multimodal AAC approaches to help these youngsters communicate as effectively as possible.
Thanks, Dana! And Happy Mother’s Day!
Filed under: PrAACtical Thinking
This post was written by Carole Zangari