Thursday, July 24, 2008

On parenting a deaf child

Ethan's friend Zeva, the ultimate sweetheart, puts his cochlear implant back in place.

I was recently asked a few questions by a doctoral student in audiology; she is writing a paper for a psychosocial aspects of hearing loss class.

Q: What was your initial reaction to learning about your son's hearing loss?
A: Serious grief. I cried for 2 days straight. I was inconsolable. I had no knowledge of hearing loss and didn’t know that digital hearing aids or cochlear implants existed, so my assumption was that he would never hear and never speak and it was too much to bear. I was also a first time mother to an infant, as if that wasn’t enough pressure to be feeling on its own. Once I learned about cochlear implants I began to feel hope. I think I may have responded differently to the news if I had been living in a city with a vibrant deaf community such as D.C., or Rochester N.Y. But I’d been living in Athens for 15 years and could only imagine my son feeling lonely and isolated.

Q: How did your family react to the news? Were they supportive, overprotective....?
A: Our families were incredibly supportive. They were behind us in any decision we would have made.

Q: How did you decide on the communication strategies (signing, etc.) you would use?
A: That’s a decision that we are continuously faced with due to Ethan’s diagnosis of apraxia of speech. We’ve made all of our decisions by getting armed with information (a book called Choices in Deafness is spectacular for it’s informative yet non-biased approach to communication choices) and by following Ethan’s lead. I’ve also been in a couple of wonderful online communities comprised of parents of deaf/hoh kids and have learned so much from their experiences. It’s not easy to be in this position because you meet people who are very passionate about their own choices and sometimes will go so far as to site research to prove that their method is best. Since every situation is unique, I find myself getting really turned off by extreme points of view, from either side of the fence.

Q: Are there any situations you and/or your son find challenging because of his hearing loss?
A: Yes! Try every situation! Seriously, his hearing loss comes into play in every aspect of our lives. You can’t assume that he hears you just because you are speaking to him and even if he does, you can’t assume that he understands what you are saying. It will get easier, but the toddler years have been pretty tough for us. He is a typical 2 year old and is going to manipulate and test us every chance he gets. Throw hearing loss into the mix and you’ve found a recipe for some serious mayhem!

Q: Do you feel appropriate accommodations have been or will be made to assist your son in the classroom?
A: Well time will tell. Ethan starts preschool in late August and it looks like we’ve found a school system that is going to great lengths to support him. We had the exact opposite experience in Athens and it’s one of the chief reasons why we left town.

Q: How does his hearing loss affect the relationship between the two of you?
A: I think it brings a profound closeness to the already tight bond between parent and child. Sometimes I’m the only person who gets him, who knows what he’s signing about and who knows why he’s frustrated. I know many parents of hearing children feel this way, but I think that his reliance on me for his ability to communicate basic needs is unique. Most people who interact with us (family and friends included) know what his signs mean, but that is about to change as he grows and interacts more with the outside world. Moving to this city was a powerful step towards finding people who will easily be able to communicate with him, at least that is what we’re telling ourselves!

Q: Have there been any effects on Ethan's self-esteem and independence?
A: I don't think his self-esteem has been harmed in any way. He is too young to realize that he has differences. I don't think it would be affecting his independence either if he didn't have other medical issues that really do impact that part of his life. He has trouble with balance and has many allergies, so we are pretty over-protective of him at the moment. But he's still so little, so it's hard to say. I just don't see his hearing loss getting in the way of his accomplishments as he grows.

Q: From your experience, what do you think are some of the major misconceptions about hearing loss and cochlear implants?
A: Well there are too many to list. The one that bothers me the most is that some people see what we've chosen for Ethan as an attempt to fix him, and that's not quite correct. Of course we want him to be able to communicate in mainstream society and that generally requires hearing. But we are proud of his deafness and think that it makes him a unique person who has the best of both worlds. If he wants to embrace ASL and take the implants off, then we support that. If he wants to go to deaf schools and have all deaf friends, then we understand and support it. The important thing to us is that he has the choice.


David said...

Heather, this was great. Thank you so much for sharing this.
Say hi to my buddy for me.
Tell him I just had #2 CI put in 20 hours ago.

Hetha said...

Congrats David, you'll be hearing in stereo now! So glad you're recovering and the surgery is over!

Anonymous said...

The photo of Zeva looks like it was taken in Cinnci. I am so glad you are getting company. We miss you all so much and can not wait to visit.
Send love to the boys, Misha

Kyla said...

Great answers.

I don't know if KayTar qualifies fro the questions because she just has unilateral loss, but if she does, I'll participate.

The other day she pulled on her deaf ear and said, "Doesn't work." or something to that effect. It hit me funny, because she's never articulated that or shown that she understands the difference.

slouching mom said...

First of all, what a beautiful photo.

Second, I agree with you about it being, at root, a matter of having choices (the cochlear implant debate).

In fact, it's not all that different from the stay-at-home mom versus working mom debates. Wasn't the point to enable women to have choices? Why is that so often ignored in polarized debates?

Laurie said...

I love that sweet picture! Maybe she will be a future audiologist?

Enjoyed reading your post. . . thank you for sharing!

marylee said...

beautifully said, dear.

Aliki2006 said...

This was fascinating to read--thanks so much for sharing it with us. And the photo--beautiful.

I am Trish Marie said...

Thank you for sharing this!

It echoed a lot of how I feel and what we have faced. I think it is a hard position we are in, to never be able to fully comprehend what our children are going through. Our strategies are constantly changing. What I focus on and worry about changes constantly. Unless, someone directly asks, I tend to forget what it felt like those first couple of months. Seems like so long ago now....

La La said...

Wonderful responses. And yes, the photo is PRECIOUS!

Have I told you today that you totally ROCK!!!

Beck said...

Wonderful! ANd it really answered a lot of things I'd wondered about, too.
He's such a cutie.

Kellan said...

I know I have probably said it before, but ... Ethan is very lucky to have YOU as his mother!

I've missed you, Hetha - nice to see you on my BlogHer post recently. Thanks for coming by. Have a good weekend - Kellan

Eileen said...

I love how honest you were with your answers. As always, I continue to learn more and more from you and Ethan. This was so informative and heartfelt.

Great photo! You were born to be Ethan's Mommy, that is for sure.


Karen said...

I loved reading your responses-- thanks for sharing!