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Mike and Joyce speak with Laura Castillo, Executive Director of FivePMinus.org, helping families affected by Cri du Chat (Cat Cry) Syndrome (CdCs).
Babies born with CdCs are characterized at birth by a high-pitched cry, low birth weight, poor muscle tone, microcephaly, and potential medical complications. "5p-" is a term used by geneticists to describe a portion of the short arm of chromosome number five that is missing in these individuals. Some of the facial characteristics include:
Round "moon shaped" face
Small upturned nose at birth
Small or low set chin (micrognathis)
Low positioned ears
Downward slanting of the eyes
Wide spaced eyes
Extra skin fold at the inner corner of one or both eyes (epicanthal fold)
These facial features usually elongate as the child enters adulthood. Children with CdCs are often also diagnosed with autism since many of the developmental issues are similar.
There is a great deal of good information on this syndrome on their website. See especially http://www.fivepminus.org/Development
Laura shares with us the origins of the 5p- Society, the national family support group for individuals with Cri du Chat Syndrome. They group shares expeerience and provides support to individuals and families affected by CdCs, sharing strategies for managing the syndrome and supporting their children in achieving his or her maximum potential Children with Cri du Chat Syndrome can lead full and meaningful lives with love and support.
Andy Fleming, CEO & Founding Principal at Way to Grow, Inc. joins the show this month to tell us about Deliberately Developmental Organizations. We'll learn what they are, and why you'd want your organization to be one, and how to go about implementing it in your organization.
The ability for families to get services for children with developmental disabilities may increase if a new rule proposed under the Affordable Care Act becomes final.
In this "Kids News Extra" segment Dr. T reviews the article, "Proposed Rule Mandates Coverage of Habilitation" from the ASHA Leader about proposed mandate to cover habilitative services.
"Habilitation" is intervention to help a child build skills in which they are delayed or disordered. It's similar to the more familiar term of "rehabilitation" whereby an individual receives intervention to regain skills that are lost second to an accident, a disease, or the like.
The ASHA Leader is a publication of the American Speech-Language and Hearing Association which provides information for the public and governs the professions of speech-language pathology and audiology.
This proposed rule goes beyond speech-language and hearing services and regards global developmental issues. We hope it's helpful.
Send your comments and quesitons to us at info@KidsAtoZ.com
Best,The Kids AtoZ Team
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