Sunday, July 22, 2007

Deaf or deaf?

One of the many questions I ask myself about Ethan’s future is whether or not he will call himself Deaf (with a capital D) or deaf (with a small d). Essentially, will he be able to embrace his deafness in a culturally meaningful way, or will he just assimilate into the hearing world? Maybe he won’t call himself deaf at all. What we do now will to a large extent determine the answer to that question.

I’ve learned quite a bit about Deaf culture in the past 2 years, oddly enough without actually meeting or knowing a single Deaf adult. You might wonder how much I truly know about this topic without having made any actual human contacts, and to that I say that there is definitely a very human aspect to reading blogs, especially those that include video footage of the person signing rather than speaking. If I’m lucky, they include a transcript at the bottom of the page, otherwise it's a chance to fail an ASL quiz.

I’ve also read message boards and books and watched documentaries along the way. There are no shortage of opinions in the Deaf community about the cochlear implant, and specifically the decision parents like us make to implant very young children. I’ve seen arguments on all sides of the spectrum, ranging from total understanding and support to raging anger bordering on lunacy. The dictionary meaning for the term implant should start with the word “controversial” if you ask me.

I’m sure there are parents like us who have an implanted child who do not view it quite that way. They might be coming at it from a purely medical and technological perspective, which is where I come from on most days. But I have days where I understand the sentiment of the Deaf community, that deafness is not something that needs to be fixed, it is not a disability. In fact, most deaf adults I’ve read online would find the phrase “hearing impaired” highly offensive. And to think the hearing world finds that phrase to be compassionate and politically correct. It shows the lack of crossover between the two worlds.

Ideally, Ethan will be able to live in both worlds. I feel very strongly (and this IS controversial) that all deaf people have the right to learn their “native” language, which in this country is ASL. Whether or not he hears with an implant and speaks like the hearing world is not the point. He was born deaf and has the right to join that community if he so chooses and will only be able to do so if he learns the language. And what a beautiful opportunity that would be for him!

Believe it or not, as strongly as I feel about this, I really don’t hold judgement against parents who have different beliefs. If I’ve learned anything along this journey, it’s that we ALL have to make tough decisions on behalf of our kids and we need not waste time judging others, but look to others choices as a way to support and learn from one another.

So the question now becomes, how can we do the best job teaching Ethan to speak our language and sign another language, one that we do not even know? All comments are welcome.

(Ethan currently understands and can sign about 50 words)

18 comments:

jen said...

hi there,
i wish i had something meaningful to contribute, but what i was struck by is the concept of native language, and for Ethan it will be ASL. and essentially you are giving him two languages from the beginning which seems so terrific in and of itself.

what a lovely mom you are.

Heather said...

Jen-

Thanks so much for saying that last phrase "what a lovely mom you are". All of us moms out there need to hear that sometimes. It feels really good,almost as good as a foot massage!

I think what is also interesting about the concept of this being "native" for Ethan is that he babbles with his hands right now, not his voice.

I've asked deaf parents (online)who have raised deaf children about this behavior and it is very normal for deaf children to do this.

That's pretty amazing.

Jennifer said...

I didn't lose my hearing until I was four, and had good speech patterns, so my parents just fitted me with hearing aids and shipped me off to kindergarten. I have just recently (in the past 18 months) lost the rest of my hearing and been implanted with a cochlear implant that I don't hear well with. I am in the process now of trying to learn ASL so that I can communicate with more deaf and culturally Deaf people, because I have found that nobody can support me and encourage me quite so well as the people that have been there and understand. I wish I already knew it...it would have been a big help. I think you're doing an excellent job, allowing Ethan to be both hearing and deaf...teaching him that there's nothing wrong with deafness, but offering him tools to help him communicate with the world around him.
As for HOW to teach it? I don't have the foggiest...there are classes offered in Nashville that I am planning to take...you might want to look up the HLAA chapters in your state...someone there might be able to help you out! :)

Heather said...

Thanks Jennifer for sharing that, I guess I do "know" some deaf adults after all :-)

I have long thought that even though Ethan might hear with his implant, he is always still going to be deaf and that he'll probably benefit a great deal from having peers who understand his experience. It's finding those peers that presents a challenge in this small town, but who knows what the future will hold him.

Anonymous said...

Hi Heather
That is great that Ethan knows 50 or more signs. I have exactly the same thoughts about Tom, I want him to be proud of being deaf and not to see it as a tragedy that he lost his hearing. Sometimes I still feel incredibly sad about his hearing loss but I think that is more to do with the fact that it is a constant reminder of the horrible time in hospital with meningitis. During the period prior to his implant we did use some signing, it was very basic and mainly relating to his favourite things - I know the signs for cars, trains, buses, tractors etc....Then he started picking up language again very soon after switch on so we dropped the signs. This was because (from reading your blog I think you'll understand where I'm coming from here!) we have so many appointments - physio, AV, OT, teacher of the deaf, counselling etc... I also got pushed into going back to work way before I was ready so it all seemed like too much. Now things seem alot quieter and I would like to learn sign. I don't know whether I should learn and teach Tom or if we should do something together or a combination of both?!

Anyway, I also wanted to say I love your blog. Jason writes about our little Tom - who DOES look very like Ethan!! but I love reading about others experiences and especially how well Ethan is doing. I remember how happy I was when Tom started walking unaided again so I can imagine how great it must be for you that Ethan is walking.

This is turning into a ramble so I'm going now.

Nicky (Tom's mum) xx

Heather said...

Hi Nicky! I love Tom's blog as well, Jason is such an articulate and eloquent writer. I teased him once that I have to have dictionary.com open to understand some of his posts, which if you ask me is a good thing!

Tom and Ethan look like brothers or cousins. It's pretty neat considering they both have a unique/original look.

You guys have had such a crazy back-drop to Tom's deafness that it is no wonder you find yourselves pausing and feeling sadness on occasion. We've had some traumatic experiences with E-boy too, but nothing compares with the fear that accompanies meningitis.

I would highly recommend that you try the videos called Signing Times. They are available on signingtimes.com or just look on ebay and save some money. Ethan (and his hearing peers) LOVE these videos and you would be amazed by how quick and easy they make learning sign language. They are filled with music and songs that are great for the Ci too!

-Heather

slouching mom said...

What a wise mama! It seems to me that you are doing everything right. That you are giving him exposure to all of it so that someday he will be able to make an informed choice about which path to take.

Kudos to you for rising above the controversy.

(And thank you for the lovely comment you left on my site.)

Heather said...

Hi Slouch,

Thanks for stopping by!

*Have been shyly reading your blog for awhile*

:-)

cheryl said...

Heather,
I had no idea about all these complex issues! When I first read your post, I felt I could not comment. So I have been doing lots and lots of reading on the subject and have learned so much, and I have such a deep respect for you and the difficult choices you must make, each step of the journey. I love how you put it thou, how each individual should make their own choice and support the right to be able to make their own choice without the negatives.

I think you are an amazing mother and I know you are immersing (spell) him in a very language rich environment that is rich in both ASL and speaking language. He is at the age where he can learn and integrate both, and seems to be doing just that. I know you, and I know you are learning ASL as we speak.

This is defiantely the type of journey where you will keep learning more and more as you go, with Ethan leading the way. What you must focus on is how well he is doing and how much progress he is made and how much he will continue to make.

Love You.
Cheryl

Heather said...

HI Cheryl,

What a great way to wake up today, to read your sweet commment before even having a cup of coffee.

One thing that many people don't realize about getting a Ci is that there is a lot of hard work (speech therapy) to be done in the years following getting a cochlear implant, at least for most people. Perhaps not for the little wee ones (like Drew) who get bilaterally implanted as babes. He may not have much therapy to go through at all, especially since he has such wenderfully intelligent and dedicated parents.

In the speech community there are some therapists (Auditory Verbal) that feel that while working on audition and acquiring language, sign language detracts from the ability to make as much progress. There is even research supporting these claims. I'm not refuting them here.

So with that in mind, I sometimes go back and forth mentally second guessing myself. What we are doing now is employing all the same strategies of an AV approach, but supplementing with sign. We've definitely taken the emphasis off sign and put it squarely on the verbal aspect.

Ethan has a developmental pediatrician who we adore (she's on the implant team) and a very experienced speech therapist as well as audiologist (and they are ALL amazing) who all support our use of sign. This helps on the days where I'm doing tons of second and third guessing.

So what I guess I'm saying is that in this journey there are an amazing amount of tough choices to consider and they are all uniquely personal decisions based on individual families. I can't stand it when adults engage in juvenile antics such as judging one another or trying to convince parents like me that we are going in the wrong direction. We are all in the same boat and should be giving each other a hand, not brow beating.

I rambled, but there is so much to say!

xoxo

Colette said...

Heather~

This is beautiful. I wish every child had a mother like you: Someone thoughtful and wise to advocate for them (you are quite an 'entourage').

Heather said...

Thanks Colette...I am becoming quite the force to be reckoned with. Just wait till he's in school, those teachers will see me coming and duck for cover!

Stepping Over the Junk said...

I love that he signs so much at his age. I feel that anything to make things safer and enrich their experience is a good one and to have a variety of ways to communicate has great value. Gosh, I wish I could sign! I can read lips and I can hear but need my hearing aids about 85 percent of the time (depending on where I am and who I am communicating with). Learn sign along with him, but there is great value to him hearing and I would think that over time, both would be natural for him. He is little, it is an easier time to adjust. (like when I "learned" to ski at 23, would have been much easier if I learned when i was 4!) (I know, totally random and not related but I just think youngin's adjust better and quicker and have less frustration)

Drew's Mom said...

As you said, the decisions we have to make are so difficult and the frustrating thing is that only time will tell if we are making the right decisions.

I think you are doing a wonderful job with Ethan. He is very lucky to have a strong, passionate and supportavie Mom (and Dad) that is educating herself to make the best decisions for him and for your family.

It's so hard because there is no set answer... I have often said that this journey would be so easy if there were steps 1, 2 and 3 and once complete your child would communicate! Wouldn't that be nice?

As far as therapy for Drew, he is receiving extensive therapy. He has to learn to listen, become aware to sound, etc., just as all children who receive CI's need. The extent to which he needs therapy or for how long is still to be determined. I would think that he wouldn't need it as long as those who are implanted later in life, but one never knows. Everyone performs differently with their CI.

Ethan is very luck to have you for a Mom!

MP said...

I wanted to tell you a little story:
My step-son's kindergarten teacher taught the class sign language, for no reason except it was a great idea, there were no deaf students or anything. I have to tell you he was SO excited. It brought an awareness to the class that there were deaf children and that they talk different. Just like Spanish or French I think it should be an optional class for hearing students.

Heather said...

Stepping over the junk,

Nice to "meet you" and thanks for commenting. I agree with you completely! This is a great time in his brain development to be cramming in as much as we can! (insert evil laugh).

Drew's Mom,

Thanks so much for the kudos. I really respect and admire the job you are doing with both of your children and value your opinion on this stuff so much.

MP,

Some high schools actually offer ASL as one of the language choices! So cool. It's really trendy right now to sign with babies and toddlers, which is fantastic for us since that makes for more communication among peers for Ethan.

Kauan Tyler's Mom! said...

Heather!!
thank you for your message.
we are very excited about the bilateral implant, it's going to be in september and I can't wait!!
I'm very happy for Ethan!! Great news that he's having a second implant soon too!!
I agree with Drew's mom, he's very, very lucky to have you as a mom, and I'm very happy for you!!
Keep in touch!!
Isabelle and Kauan!

Jeannette said...

Dude, it's SO NICE to meet someone else who signs with their CI kid. Like you said, every deaf kid has a right to learn their native language, ASL.
*high-five*
You have a lot on your plate, but it looks you're handling it admirably.