Sunday, January 27, 2008

The 5 Stages of Grief....did you experience this?

I received a phone call from my mother-in-law that has just made my mind spin. While I am NEVER one to second-guess anyone's decisions when it comes to raising their children (hearing, non-hearing, Cochlear Implant, ASL, etc.), this one really has made me think about our whole experience when we found out Delaney was HOH/deaf. My MIL called me about 6-8 months ago, and said she had an associate who has a child who was just diagnosed with hearing loss, and they were really struggling with the whole idea. She had no idea if her doctors were doing what they should do, and she was very sad and depressed. She asked if I would mind talking to this woman, to see if I could answer any questions, etc. I said, of course. A week later I called her, and told her of my situation, and let her know what we went through with Delaney: How we found out, what tests they did, what tests we probably SHOULD have asked for, etc. She said her ENT had not done some of the testing that we had done, so I urged her to push them a bit, just so they would have a good handle on whether there are any structural issues which made lead to further loss, and talked to her a bit about all the options out there (we discussed Oral/AVT, Total Communication, ASL). Anyway- I ended the call by letting her know how well-adjusted and just 'normal' the kids are, and that while it is overwhelming in the beginning, I could safely assure her that no matter what they choose to do, her family would look back on this in a few years and feel much better about it all. It just takes time.

Fast-forward to now. My MIL called me again to thank me for taking the time to talk to her friend, but told me the woman confided to her the other day that they were still having problems facing the reality that their child can't hear, so they were doing nothing at the time. It really made me feel for the child (who has a pretty significant loss- not profound, but moderate to severe). It also made me think back to how we felt when we learned that our only child (at the time) had a moderate-profound hearing loss, that was most likely progressive. I remember being sad in the beginning, and for a very brief moment wondering if my beautiful daughter would ever love music as much as me, and if she'd have a prom date- I know, shallow aren't I :) But, we instantly went into research mode. We called every expert we could think of, read many a book, and talked to a bunch of parents who were in our position. We looked at the Oral program at out local School for the Deaf, and looked at the Total Communication class. A few years later, we also went and looked at the charter school that had just opened that was an ASL school.

We had AVT experts work with our daughter, but also had a Deaf mentor come to the house and teach the family ASL (until we moved out of state, and no longer had access to the program). I guess for us, action was what got us through those early years. By the time we had child 2,3, & 4, and found out they too had hearing problems, it was just not that big of a deal.

I guess the reason for this post was just to comment that all parents handle hearing the news differently, and that some of us get 'stuck' in different stages of the grief process. This parent made the comment that we were just in a totally different place than they were, and they couldn't fathom getting there. To that parent and any others that are overwhelmed, and sad or scared. Just know that we were right where you are, and even though we are fine now. What you are feeling is completely normal.

My first-born baby is now 11. We found out when she was 2. That's a lot of time to work through all the things you are feeling. The one thing we did do right away, was accept the fact that she was in fact deaf/HOH. We faced the fact that we did need to make certain decisions and choices, so that our daughter could begin to communicate with people (whether it be through verbal communication, ASL, Cued speech, etc.) I hope that this parent can get to the acceptance stage at some point.

Sorry, so long.


leahlefler said...

I think everyone does handle the news in a different fashion. My response was to google anything and everything related to hearing loss, lol. I think some parents have a harder time believing the diagnosis. I think (for me), the hardest thing is knowing what the diagnosis MEANS. After finding blogs and the group, I realized that it means there might be some difficulties, but that the kids do wonderfully and grow into great people. And, as parents, you find a whole new world of great people, who are sensitive and intelligent- people you might never have met otherwise. I think everyone has to get to the point where they stop focusing on what is lost and focus on what they do have. And in my case, it is two amazing, beautiful, wonderful little boys.

Loudest Mom said...

Great perspective- I love the comment, focus on what you have, rather than what you've lost.

MB said...

It is interesting how people handle it differently. I remember one parents' support group I was at a mom saying she cried every day for the first 6 months. I didn't have time for that! I was too busy bugging doctors and learning as much as I could.

I feel for that child. Hopefully the pediatrician and others will nag and nag until the mother realizes it isn't going to magically go away.

Anonymous said...

I sobbed for 2 days, then put myself to work and never looked back. The crux of the issue is that time is of the essence! You can't be in denial for too long without depriving your child of valuable language (whether manual or spoken)and communication skills. You wait, they the price.

I've given my name and number to our regional infant hearing program coordinator so that she could refer new families to me as a support person. I've never received one call. When I asked her about this recently she said that most families just sit on the news frozen and don't have the gumption to take action. It's very sad.