Support Services For Parents of Newly Diagnosed Children
NOAH provides special support to parents with newly diagnosed children. Receiving a diagnosis of albinism can be shocking and frightening to many families, which is why NOAH has made great efforts to reach out to new families and make accurate information readily available to them and the medical professionals who work with them. NOAH's Rapid Responder Program connects new parents with other parents of children with albinism to share concerns and reassurance. Rapid Responders, who are specially trained, have strong knowledge of the medical, social and biological aspects of albinism and attend semiannual teleconference training sessions to sharpen skills and knowledge. For many new families, a conversation with a Rapid Responder is their first opportunity to receive honest, accurate information about albinism and to connect with someone in the albinism community who is willing to listen and offer support.
In 2008, NOAH announced the release of its first full-length book, titled Raising a Child with Albinism: A Guide to the Early Years. The book is a comprehensive resource guide for a family with a young child with albinism. Everything from the types of specialists you may encounter, early intervention services, self-esteem and sports are covered in detail. It’s full of practical advice and caring insights from experienced parents and adults with albinism. While the focus is on children from birth through first grade, there is a great deal of information and advice for parents of older children, too. Children and teens with albinism can also benefit from having a book full of pictures of children like themselves to look at and share with others.
Read more about this topic: National Organization For Albinism And Hypopigmentation
Famous quotes containing the words support, services, parents, newly, diagnosed and/or children:
“Science is intimately integrated with the whole social structure and cultural tradition. They mutually support one otheronly in certain types of society can science flourish, and conversely without a continuous and healthy development and application of science such a society cannot function properly.”
—Talcott Parsons (19021979)
“Civil servants and priests, soldiers and ballet-dancers, schoolmasters and police constables, Greek museums and Gothic steeples, civil list and services listthe common seed within which all these fabulous beings slumber in embryo is taxation.”
—Karl Marx (18181883)
“Preschoolers sound much brighter and more knowledgeable than they really are, which is why so many parents and grandparents are so sure their progeny are gifted and super-bright. Because childrens questions sound so mature and sophisticated, we are tempted to answer them at a level of abstraction far beyond the childs level of comprehension. That is a temptation we should resist.”
—David Elkind (20th century)
“An ancient estate should always go to males. It is mighty foolish to let a stranger have it because he marries your daughter, and takes your name. As for an estate newly acquired by trade, you may give it, if you will, to the dog Towser, and let him keep his own name.”
—Samuel Johnson (17091784)
“The poverty from which I have suffered could be diagnosed as Soho poverty. It comes from having the airs and graces of a genius and no talent.”
—Quentin Crisp (b. 1908)
“No one ever promised me it would be easy and its not. But I also get many rewards from seeing my children grow, make strong decisions for themselves, and set out on their own as independent, strong, likeable human beings. And I like who I am becoming, too. Having teenagers has made me more human, more flexible, more humble, more questioningand, finally its given me a better sense of humor!”
—Anonymous Father. Ourselves and Our Children, by Boston Womens Health Book Collective, ch. 4 (1978)