Friday, June 26, 2009

For DianRez...

Hi. I mentioned in the comment section of another post that I would have responded to Dianrez' blogpost: Enough with blogs about CI surgery! that I almost missed. K.L.'s response to this post generated an interesting and intelligent discussion.

The aspect of DianRez' post that I wanted to highlight was this:

Far more interesting is if they revealed who they are, what they are doing, their opinions, and their life-fulfilling experiences apart from their surgeries. In the case of parents writing about children, there is an emotional aspect that makes one uncomfortable to read about...because of the expense, time, emotional investment and parental uncertainity in them and leaves one wondering if they are missing something. Even at two or three years old, children are individual personalities with varied characteristics.

People, not scars!

I waited about five days and wrote three other blogposts to present the type of revelations that Dianrez requested. I found her post interesting and when she writes, I tend to listen because her perspective is that of a person who has lived her life as a Deaf woman, but who is genuinely curious as to the experiences lived by a new generation of deaf children who have access to sound by means of the cochlear implant. Her comments are always insightful and encouraging and have helped me on a personal level many times.

I will say this: people who blog write a personal diary of their experiences. Surgery, activation, anticipation, fear and uncertainty are all part of the cochlear implant experience. Posting the surgery may be a way of confronting the most terrifying part of choosing a ci for one's child. I believe that ci activation, more than a confirmation and exuberation that "Oh my God, my child hears!" is more of an affirmation- "Thank you God, the implant works"..after suffering through the operation to give your child the opportunity to hear.

Scars are not always visible and tangible, the cochlear implant blogs reflect this reality.

There are the parents just beginning...I received a text message from the mother of a newly diagnosed deaf baby who I spoke to for about forty minutes yesterday. She called me because she was living a difficult moment and needed to talk to someone. She wrote:
One of my biggest fears is that my child will not be able to live a normal life- find a job, get married. Am I ridiculous? Some moments my head is overwhelmed by these types of thoughts and I think I'm going crazy... (I sent her the picture of Jordan with the rose in his mouth and she calmed down)

It's useless to become indignant, pissed off or outraged at this mother's comment. This is the reality, this is a typical parental reaction. And so we must inform parents. If their child is a candidate for a cochlear implant, they need resources. They need to see the surgery and the activation.


As Dianrez says...they need to see that our deaf kids are doing okay socially.

There are the parents who have reached an equilibrium...I'm getting there, so now I can tell our story through the words of Jordan.

The other night just before we went to sleep, he said, "Mom, my friend scares me."
I said, "Why?"
He replied, "Because she uses really bad language, wears too much make up and isn't nice to her parents."
I said, "She is growing. Little girls who become middle school students want to be older than they are so they start cursing and being disrespectful to their parents- obviously something you will never do...or you will be thrown out of the house."
He thought for a second..."Yeah, I guess that's true. She thinks she's older than she really is."

Jordan is immature for his age at times...then again, sometimes he is wise beyond his years.



VBnBama said...

I love that you are posting more pictures of y'all! lookin' hot mama....

Dianrez said...

Thanks, Jodi, for the pat and the little anecdote about kids growing up in middle school.

Parents do need to know that their child will be fine with or without the CI, just because of the qualities the KID has going for him. That's the biggest part of it.

The more tools, the better, and that includes family backing, hearing devices, education, language(s) and social support of the childs peers and community.

Parents will find out as their child grows that it's more important to nurture his intellect and his talents than to worry about his hearing and that it's not all that hard to do so.

Keep up the lovely stories! Hugs!

K.L. said...

Hi Jodi,
Thanks for your post. You hit the nail on the head. People need to work through their journeys, and if the implant is part of that, then that is part of the things they need to talk about. But that is just part of the journey, and they need see the other parts of the journey too. I just felt that it was not fair to invalidate their implant surgery/activation posts just because it was not interesting to other people.

Our kids are just getting old enough to start occasionally posting their own thoughts and experiences. I just hope the Blog World will treat them well.

kim said...

Hi Jodi,
I just wanted you to know that I enjoy reading about your family life too, even though I'm not panicking over having a deaf child. As a late-deafened adult, it does the heart good to see deaf children growing up happily and participating socially in ways not possible years ago. I guess what I'm saying is I think you bring hope to more than just parents of young deaf children.

Still I think Dianrez made a good point about wanting to know more about the child rather than his or her implant.

All Deaf people are multidimensional. I wish some of the parents of Deaf kids without CI's' would blog more about their kids too. Perhaps that would enlighten us.

Unknown said...

Val...thank you. You can use my photos if you want. Hahahaha
Dianrez- my pleasure:)and thank you.
K.L...very well said.
Kim- love you!

Paula Rosenthal said...

Loved the part about how you're reaching an equilibrium. I was just reflecting on that the other day. At diagnosis, I went into Mom-mode overdrive, rushing to get things done quickly and to find good professionals and programs. Then, it was all about keeping on top of everyone and also Julie's rapidly deteriorating hearing. Now that she's in middle school, I find that everything is about the typical middle school drama stuff, most of it completely unrelated to hearing. It is a sigh of relief to know that I helped give her a great foundation and now she can concentrate on being a typical kid. It's time for me to get back to being a typical mother! :) Thanks, as always, for an insightful post. Hugs!

Michelle said...

You're such a great role model for other parents and what a priceless conversation with Jordan...way to keep 'em in check! LOL!... :-) Cute story.