I'm working on a booklet in Italy to be distributed to the parents of newly diagnosed deaf children, so I posed the question: Looking back on your experience as a parent, what would you include in this booklet to empower new parents upon recieving the diagnosis?
I received various responses:
Parent 1: I only hope they find Docs who don't brush it off and crack jokes as they give you the diagnosis...only another parent really understands the feelings involved and some of them are not pretty.
Parent 2: What would have been very beneficial for us would have been a resource that told us what to do next. It really felt like we were told and then dropped like a hot rock. No one had any idea what to tell us when we asked "so what do we do now?". We knew time was ticking away, but people just didn't have answers.
Parent 3: Something - a brochure, a website, a list of resources I could track down -that listed ALL the communication modalities, studies with educational outcomes for each one, and community/medical resources. When my son was diagnosed, that was it. He's deaf, he'll need to be fitted for hearing aids, end of story. NO ONE said anything about Early Childhood Intervention (I found out that preschoolers qualified for Special Ed services through a chance conversation with a former public health nurse I met at a yard sale!!!). No one offered any information, not even about sign language. I quite literally had to track down any and all information on my own. And this was before the internet. I felt like time was rushing past and my process was ever so slow because of the trial and error aspect of it and all the ordering of books and studies and mail time and reading at 2am.
Parent 4: It would have been helpful if the original ENT that diagnosed my daughter would have immediately referred me to a group of doctors who knew what to do next. We were also told very nonchalantly, during her second ABR, that she was deaf and would always be deaf. Very cold, very matter-of-factly. I didn't find the CI Circle until after she received her first implant; would have been wonderful if I knew about it before hand. When you have dark moments it is very comforting to be able to read those comments even if you don't participate in the conversations. I have severe hearing loss newly diagnosed and am generally extremely shy, parents on the CI circle inspire me to help people. I've met so many people locally that I've been able to share my story with and never realized how helpful that could be.
Parent 5: A DVD handed WITH a brochure - that interviews deaf children and deaf adults who are accomplished. Because when you hear the news it feels like a death sentence - reality just didn't come into play for us. All I could think was "my baby is DEAF and will never hear music, never hear me say I love you? No WAY!" and then I burst into tears as I'm driving along back home. It would have been nice to SEE successful deaf children interacting...it would have given me hope. Reading material was nice - but I needed to SEE it. When I did, everything changed.
Parent 6: I think that talking to other parents that have already been through it is one of the main things. I also had someone tell me that no matter what it would all be o.k. And guess what it is!!!!! I wish I would have taken that to heart much earlier. Now I want to talk to every parent that just finds out so I can tell them it will be all o.k.
And you? What would you include to help other parents?
