Presentation on theme: "Parent Perspectives on the Journey: Universal Newborn Hearing Systems Janet DesGeorges Parent Consultant, Marion Downs National Center, MCH Grant, CDC."— Presentation transcript:
Parent Perspectives on the Journey: Universal Newborn Hearing Systems Janet DesGeorges Parent Consultant, Marion Downs National Center, MCH Grant, CDC Grant President, Colorado Families for Hands & Voices
Success: How you Know youve Gotten There The diverse experiences from the Familys point of view is reflected in the system. Parent Participation in systems development is effective, appropriate, and sophisticated. Support for families in the system is relevant, ongoing and is implemented from screening to detection/diagnosis through intervention
Parents as Full Partners JCIH Year 2000 position statement …the EHDI team incorporates parents as full partners in the development of individual infant and family follow-up services….respects and supports the preferences of families, traditions, and cultural values and beliefs.
Parent Involvement Research indicates that the single-most important factor in predicting successful outcomes of newly identified deaf/hh babies is the active participation of their parents (Yoshinaga-Itano, Coulter & Thomson, 2000) Benefits of Parent involvement include higher reading scores, higher grades on homework, improved attitudes towards school, improves relationships between parents and teachers (Donahoo, Saran, 2001)
Quotes from other Parents A Parent Speaks: Other parents are charting milestones, worrying about solids, and having pictures taken while we are coordinating medical visits, saving money for hearing aids, and trying to teach our child another language than the one we know. It is hard to relate, Lisa, a parent of a one year old.
A Parent Speaks: I felt as though I was holding a stranger. Suddenly I knew that all those lullabies and books had not reached her; that I had no idea how to communicate with this baby (then 14 months), and the enormity of teaching her how to talk, how to read, how to understand the abstract notion of I love you or God weighed enormously upon me. I didnt want her to sense my panic, my sadness for she was the same golden baby, named after my motherand yet I saw her so differently. I saw the needs I had to fulfill and had no idea where to start. Sara, mother of a 3 year old hard of hearing child. Quotes from other Parents
A Parent Speaks: This is a tough one. I don't believe that I will ever fully feel like her hearing loss wasn't my fault in some way. We will never know what caused it, but since I'm her mother I feel I should have protected her. We attend group therapy with other hearing impaired parents and realize we aren't the only ones with all these feelings. - Franky, mother of a daughter who is deaf Quotes from other Parents
Quotes from Other Parents A Parent Speaks: We don't see our son's hearing loss as a disability or as a special need, but rather an opportunity. He will face some other challenges in life because of his hearing loss, but he will also get to experience many things that children with normal hearing will not. So we are not sure we have ever grieved, or maybe we have in our own way. -Brian, Father of a son who is deaf
Parent Support/Leadership Colorado Resource Guide Baby Mine Book Newly Identified Family Luncheon/Picnics Parent to Parent Support Representation in the State Newsletter 0-3 section Social Activities Parent Directory
The need and right to communicate is the most fundamental of human rights. To deny it is to harm the human spirit; to foster communication is to reveal all the possibilities of life. National Deaf Education Project, 2000