Wednesday, May 13, 2009

Help: Booklet for Parents of Newly Diagnosed Deaf Children

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 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?


Anne said...

Hi Jodi! I tried to answer on CICircle about 6 hours ago, but for some reason it hasn't come up. Has that ever happened to you?

Anyway, I think it's a good idea to list one or two good English-language websites on the Italian brochure for a couple of reasons. First, because the English sites are better and frequently updated, and second, because most Italians speak a little English or know someone who does. Maybe you could include and since they are aimed especially for parents?

You know, I really agree with the parent who said it's important to know that your child will be ok, no matter what. I think that's the messagae I got from the book, Choices in Deafness, that I took to heart the most, that comforted me.

Dianrez said...

I'm with Parent 3. All possible links to all possible choices. The DVD mentioned later sounds great, with the same interest in showing examples of all modalities as children and as adults.

Somewhere in there should be the advice that the parent also learn ASL and expect to be fascinated by the Deaf community.

You're right, parents don't know the future and can only see a black hole if they know nothing about d/Deaf people. Show them! All kinds! From the ASL to the Hearing-integrated deaf person, from the blue collar worker to the professional, from the non-speaking to the speaking in all categories. Only when the parent sees that there are a great variety of well-functioning deaf people will they feel they know us as they know their own families.

Susannah said...

These are really great- I would also add that when you are first shell shocked, you have no ability to know how to respond to sometimes well meaning, sometimes just stupid comments from other family members, friends and strangers. It might be helpful to include a section on the reality that in your nearest and dearest may spiritualize things, minimize your grief, and say very hurtful things to you. although you find ways to respond over time, it would have helped me to know that it is common to experience comments like this & maybe had a few comments that could be mantras to respond with. you feel so raw, alone, and sensitive in those first moments. (at least i did)

Christian and Lily's Mommy said...

Hi Jodi,
For whatever reason, my post on CI circle didn't post. I definitely would include parent testimonials. I also would highlight the various therapy options. I think compiling a list of sites and links (especially to our CICircle blog) would be helpful.

I'm so proud of you that you are doing this!

Anonymous said...

Great thing you're doing here...since I'm not parent of a deaf child I won't comment here. However, you want to be sure to cover all range of options. One of the options is to encourage parents to incorporate sign language from the beginning to facilitate communication. If this has been mentioned...then I apoligize for being redundant.


Rachel @ Cochlear Implant Online said...

Dianrez and Sharon, you canNOT tell what methodology parents should try. What you're saying is like as if I were saying "I would encourage parents to try the AV approach" in the unbiased booklet that Jodi is creating. Yes, she should certainly mention sign language as one of the options as some parents do find it to be a viable option for their children, but she can't encourage them to use it over the other methods. Baby Hearing website is a good example because they don't explain which method is better. They just provide the explanation of each methods. Anyways, as always, Jodi, please let me know if you need any help. Good luck with your project!

Rachel @ Cochlear Implant Online said...

Another thing, Jodi. Many visitors of my website have told me that one of the reasons they enjoy visiting the site is that the stories written by other CI users and the video clips of other CI users give them so much hope and encouragement that their children will be OK. So having stories from a diverse background of deaf people, both CI users and non CI users and people who hear and speak and/or use sign language.

Dianrez said...

It is interesting that when one person says "include ASL" another will interpret that as "choosing a method over others".

ASL is not a method, it is just a language like any others. It is not a commitment, but one tool in an already varied toolbox.

Some people regard ASL as if it has the power to cause bad things to happen. Hey, it's just a useful skill akin to speaking French.

Rachel @ Cochlear Implant Online said...

Hey Jodi,

I just posted a blog entry about something that might be a help for your booklet -

Unknown said...

Thank youuuuuuuuuuuuuuuu!
Working, sweating, and all that good stuff!
Hugs to all
(Susannah- thank you for sharing that...)
Parent testimonials and resources are fundamental...