AND RAISING THEIR VOICES: INSPIRATIONAL EXPERIENCES IN DEAFNESS
Friday, May 14, 2010
Coming Soon...NHS 2010!! Preparations Underway:-D
NHS 2010 is coming soon...things are crazy here in Jordan and Sofia's house.
My life is becoming an acronym.
Currently working on this:
Global Coalition of Parents of Deaf/Hard of Hearing Children (GPOD)
Position Statement and Recommendations for Family Support in the Development
of Newborn Hearing Screening Systems (NHS)/Early Hearing Detection and
Intervention Systems (EHDI) Worldwide
And this:
The establishment of the Italian Pediatric Federation Newborn Hearing Screening Network is the result of an international collaboration between Parents and Medical Professionals in order to promote an effective model in developing Early Hearing Detection Intervention Programs that recognize the role of parents as partners in the process.
Among other factors, one important component frequently underestimated in most early intervention programs, both in the USA and other countries, involves the role of parental involvement within the Early Hearing Detection Intervention (EHDI) process. When a parent receives the news of their child’s hearing loss, reactions may include, but are not limited to denial, grief, guilt, shame, fear and impotency. A parent may begin to ask certain questions: How do we know if the professionals in our children’s lives are capable, educated, trained, up to date in their chosen fields of expertise? Do they respect our children and us as parents? Do they understand the needs of children who are deaf or hard of hearing? A life-long health professional - parental collaboration begins at the moment of the diagnosis of that child.
When analyzing the habilitation process of a deaf child, the relationship between health professionals and the crucial role of parents in raising that child is a 50-50shared responsibility. An objective of EHDI programs must be to empower parents by providing support from the beginning of the process. Distributing informative literature regarding the newborn hearing screening process and providing parents with access to resources such as parental support groups upon diagnosis equips parents with the tools necessary to immediately begin advocating for their children. As the American Society for Deaf Children states: Parents have the right and responsibility to be primary decision-makers and advocates. For this role, parents need education, access to information, and support.
The Italian Federation Pediatric Newborn Hearing Screening Network was created by combining the parental perspective and medical protocols in order to establish the roots for stronger EHDI programs beginning from the concept of the pediatric medical home.
Struggling to get the new blog organized...Born in the USA...Made In Tuscany
Praying we'll find a way to get to Baltimore this summer, but it doesn't look good.
The important thing is that even if we get lost every now and then, we find ourselves over three scoops of gelato and a nutella milkshake!!
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