Friday, June 13, 2008

Whole New World

I went and had dinner & drinks last night with one of my "bestest" friends, she's actually my sister I've never had. We always have the best conversations. I was telling her about my newest discovery with Aiden's world - the deaf community. After learning about Aiden's deafness, all I could think of was, he WILL hear and speak one day, and that's that, he will be a part of our hearing world. And hopefully he will (we still need to wait for the MRI to tell us if he is a true candidate for cochlear implants), but he is deaf and could also be part of a community that seems to have their own culture and I want him to know this part as well. As Aiden's family, we need to have a respect for this "culture" in a way we would respect the culture when visiting any foreign country. I'm still learning so much about this, so my big question now is, if Aiden is a candidate and successful with his implants and hearing/speaking, do we still teach ourselves and Aiden to sign or not?

Of course I have always known about sign language, but just that it was out there. What I've come to learn is there are different types of communication for deaf people. Sign language - American Sign Language (ASL) is not easy to learn and when translated word for word is completely different than spoken English, it's like learning a foreign language. I also didn't realize there is another type of sign, called SEE, which is more in tune with spoken English and is another option to teach Aiden and our family. There is an option to cue, which I don't know a lot about yet either since we have decided from day one that we want Aiden to hear and speak - this is the auditory verbal route. I'm still learning, so I'll fill in more about it later.

Before Aiden was born we discussed using baby signs with him for easier communication as a toddler. We saw our niece using these signs at 1 years old and were amazed at all the signs she knew and decided we would use it too. Little did we know that our child would be born with profound hearing loss and now we actually question the use of teacing him even basic signs. We question this because we are praying our child will be able to hear using cochlear implants and combined with the hard work of auditory-verbal therapy, he will be able to speak and listen. This therapy does not include any type of signing. In fact, it's suggested not to teach signing, so the sole focus is learning to communicate through listening and speaking, not signing (the implants don't just turn on a "hearing switch", it is very hard work to teach a deaf/hoh child with an implant to hear and speak and takes a lot of time and dedication, it's very different than teaching a hearing baby to speak, but the outcome is tremendous!).

Again, we are choosing for Aiden to get cochlear implants so he has the chance to speak and hear, that is our choice as his parents; we want our son to be a part of the hearing world ... but Aiden will always be deaf, there is no changing that and we have to ask ourselves how will we communicate with him when his "ears are off" or not working or if he chooses one day not to use them? We don't want to completely take away this "culture", this "community" even though we choose to (hopefully) have him implanted. As he gets older, we want to teach him all about the deaf community and the options he has and respect the decisions he makes, whether it's to communicate through hearing/speaking or through sign or both. At least we are lucky enough to give him the choice in how he communicates.

So for now, we will continue to work hard at our auditory-verbal therapy and pray that Aiden will one day speak and hear. But we will also continue to learn about this new world that has become part of our journey.


Bill and Shelly said...

We chose to teach Allison some basic sign language before she was implanted, so as you said, she could communicate with us. Once she was hearing and communicating with the implant, she stopped using the signs herself. We never pushed her to stop. It was just easier for her to talk.
We are always aware that she is deaf, but she is "hearing" too.
By the way, what city did your husband grow up in? I was raised in Wickliffe and my Dad and Step-Mom live in Mentor. The beach pictures were taken at Mentor Headlands State Park.

Loudest Mom said...

I think in a perfect world, there is a place for both. I know when we're at the pool, or the beach, etc., it's sometimes faster to use basic signs to tell them to SLOW down, or get out of the water, etc. Two of my kids are fantastic lip readers, the others? Not so much. But, I am so happy they were implanted and able to talk, sing, listen, and 'debate' (a.k.a. argue).

My kids also rarely sign, even when I'm signing to them because their equipment is off- it's kind of interesting. It's like they know I can hear, so they don't even bother :)

MKChaikof said...

I have two daughters who were born profoundly deaf. We used the Auditory-Verbal approach with both, and they were both very successful with it. My daughters have always been very much a part of the entire world, not just the deaf culture that is such a small portion of the entire world. They are happy and thriving at ages 21 and 13. They could certainly learn sign today if they chose, but, like most their ages, their lives are too busy with school, friends and other activities to so that right now, and, because they hear so well and so have their community, they don't feel a need to seek out the deaf community.

Being born deaf does not automatically mean that your child is a part of another culture or another community. That is a choice that you and only you as his parents can make for him. Over the years, we attended many CI and A-V conventions. My daughters found their own "deaf community" through these conventions with friendships with other kids and teens who, like them, had CIs and hear and speak and attend mainstream schools. They were all deaf, but they'd sit up until late at night in one of their hotel rooms TALKING to each other for hours.

Whatever your goals and expectations were for your son before his deafness was diagnosed should be what they still are now. With CIs and AV, today deafness doesn't need to be a sharp turn in the road, only a little curve along the way.

tammy said...

Shelly - my husband grew up in Avon Lake, west of Cleveland. Most of his family still lives in Ohio. I love it up there!

Loudest Mom (love it!) - Just think how boring our world would be if it were perfect ... I can't wait to hear Aiden "debate" : ) with his brother and sister!

Melissa - Thank you for your comments. I have heard great success stories with the AV approach, and we too, want Aiden to hear and speak and that's why we chose the AV route as well. But if, for some reason, AV does not work out for Aiden, he is not a candidate for CIs, or whatever it may be, we will ALWAYS do what is best for him, just like we would our other children. That's what amazes me about - there are all these options for communication, but what I'm confused about is the prejudices out there with which communication method one may choose and why there is judgement over which method is chosen. Aiden is deaf with CI's or without them. I don't have the answer yet and probably never will, we're only two months into this unexpected journey, but I do know I want my son to be exposed to both worlds, hearing and deaf, and I don't want him to be judged for whatever choices we make for him OR whatever choices he makes for himself one day. I just want him to know he has choices and as his parent it is up to me to teach him about them.

Our goals and dreams are the same for all three of our children ... each with their own uniqueness, their own personalities, their own choices as we teach them all the options they have out there in this vast world of ours! You're right, Aiden's deafness is a curve in our journey, and hopefully it will be a smooth one.

PS - I would love to chat with you about the vestibular system and sensory integration sometime!

MKChaikof said...

Tammy Jean,

Feel free to email me about the vestibular issues. I'd be happy to talk more with you.

Anonymous said...

Hi! You don't know me, my name is Diane and I am one of Pickle's friends over on Multiply. He has told us about you and your little one. I work with special needs children in elementary school. I just wanted to tell you that, from a school stand point, not teaching him sign language is the best if you do want him to talk one day. And absolutely do not teach him the sign for 'more'. Children who learn this sign early tend to ONLY use that sign because no matter what they are doing if they sign 'more' you automatically know what they want, so they don't HAVE to learn to communicate other words.
But on the other hand, a few basic signs may make your life and his easier until he can communicate verbally, but only signs that he may NEED to use to communicate in a hurry without getting frustrated, like 'bathroom', 'drink', etc.
Of course, my "in put" is based completely on the kids I have encountered in my school. But I just wanted to tell you the stumbling blocks that our kids have encountered by knowing how to sign 'more'. I hope that you don't mind.
Best of luck with the MRI and I hope that Aiden is a candidate! Blessings to you and your family! :)