Cri Du Chat Support
Group of Australia
RESOURCES
Links of Interest to Parents/Carers
The UK handbook is now online at
http://www.cridchat.u-net.com/booklet/booklet.pdf
This comprehensive booklet covers all aspects of the syndrome in more detail than the information on this site. It requires Adobe Acrobat Reader which you can download by clicking on the logo if you require it.
Suggested gifts for a child with disabilities
This link is from the Autism Australia website. A great list of gifts for children with autism. Most of these are suitable for children with other disabilities.
Communication
The Hanen Centre Canada - "The Hanen Centre was founded in 1977 in an effort to develop a more effective and family-centred approach to helping young children with language delays". The programs they have developed are now taught worldwide and many Australian Speech Pathologists have trained in the Hanen Approach and are also certified to conduct a program for parents called It Takes Two to Talk. The program teaches parents to become more effective in helping their child to learn to communicate to the best of his ability.
Medical Information
Current (2001) overview of knowledge from the National Board of Health and Welfare in Sweden. A well assembled description of the syndrome, it's features, health issues and other problems in English. The best medical resource currently available on the internet on cri du chat syndrome for professionals or families.
This parent site has great suggestions and information for parents of babies with cri du chat syndrome. It needs to be posted here long-term for all new parents to find. Pages of special interest are:
- Feeding - http://criduchat.hypermart.net/feeding.htm
- Emotions Then and Now - http://criduchat.hypermart.net/emotions_then_&_now.htm
- Therapies - http://criduchat.hypermart.net/interventions_&_medical_support.htm
New Visions - a professional website with lots of information and pointers on speech, feeding and sensorimotor problems and how to improve them.
New Visions Information Papers on feeding, oral-motor problems and treatments. Papers available online or in PDF format which can be downloaded and printed using a program such as Adobe Acrobat Reader. Links of particular interest in cri du chat syndrome:
- Feeding which includes information on aspiration, feeding problems, swallowing problems (dysphagia), feeding and speech relationships, tube feeding, mouth stuffing and more - http://www.new-vis.com/fym/p-feed.htm
- Sensorimotor issues in feeding - http://www.new-vis.com/fym/p-snsmtr.htm
- Learning - provides specific suggestions and strategies to create an environment that supports maximal communication and learning
- Child with a Gift - http://www.new-vis.com/fym/papers/p-lrn9.htm
by Suzanne Evans Morris, the speech pathologist whose site this is. Thoughts about the gifts offered to adults and therapists by children with special needs.- Marvelous Mouth Music - http://www.new-vis.com/fym/papers/p-lrn10.htm describes a new recording that gives children an opportunity to develop early pre-speech abilities in the context of musical fun.
Apraxia Kids - the place to go if your child has been diagnosed with Developmental Verbal Dyspraxia or Apraxia.
Definition of Tactile Defensiveness - many children with cri du chat syndrome appear to be tactile defensive and suffer from sensory integration problems. Here is a definition of tactile defensiveness with some resources on sensory integration.
International Support on the Web
Danish Support Group Website
The US support group, the 5P Minus Society, have their website back online and looking great. Why don't you take a look.
BooksGenetics and Mental Retardation Syndromes
A New Look at Behavior and Interventions
Elisabeth M. Dykens
Robert M. Hodapp
Brenda M. Finucane
Publisher: Paul H Brookes Publishing Co.
Australian Distributor: Maclennan & Petty NSWThis book, aimed at both professionals and caregivers, is intended to provide an overview of the field of etiology-based study of the specific genetic and behavioural characteristics of genetic syndromes which result in intellectual disability. Four syndromes are examined in detail and five other less-well researched syndromes, including cri du chat syndrome, are also covered.
In Australia the book retails for around $75. It would be of most interest to those in support organisations, schools and hospitals and the many professionals in medicine, education and other fields who see children with disabilities in the course of their daily work.
Some other titles by Brookes Publishing NEW LINKS
Sleep
Sleep Better! - A Guide to Improving Sleep for Children with Special Needs By
V. Mark Durand, Ph.D. Published by Brookes Publishing.
Toilet Training and other skills
Steps to Independence - Teaching Everyday Skills to Children with Special Needs, Fourth Edition By
Bruce L. Baker, Ph.D., & Alan J. Brightman, Ph.D., with Jan B. Blacher, Ph.D., Louis J. Heifetz, Ph.D., Stephen R. Hinshaw, Ph.D., & Diane M. Murphy, R.N. Published by Brookes Publishing.
Siblings
Special Siblings - Growing Up with Someone with a Disability, Revised Edition By
"In this absorbing and candid book, Mary McHugh reveals what she experienced as the sister of a man with cerebral palsy and mental retardation — and shares what others have learned about being and having a “special sibling.” Weaving a lifetime of memories and reflections with relevant research and interviews with more than 100 other siblings and experts, McHugh explores a spectrum of feelings — from anger and guilt to love and pride — and helps readers understand the issues siblings may encounter.." (from the website)
VideoCry of the Cat Video
You can purchase a video about cri du chat syndrome
produced by one of our parent members, Helen McGrath
from Sydney, Australia.
View a short video clip
Listen to the cry of a baby from the video
Order your copy of the video in PAL or NTSC
Cri du Chat Support Group of Australia Inc.
Association number A0033602W
Address: - 104 Yarralumla Drive, Langwarrin, VIC, Australia 3910 Telephone: - 61 3 9775 9962 Facsimile: - 61 3 9775 9962 E-mail: - Margarette Christie info@criduchat.asn.au
Date created: 18 March 1999
Date modified:
14 November 2002
Created by:-
Bob Ivison
Maintained by:-