Well, after our third visit to the audiologist, for the hearing portion of meeting CI credentials, it is confirmed that Mikaela - audiologically - is a cochlear implant candidate. (I think she is in all the other criteria as well but have to receive confirmation from the CI team.) As you may recall, the last time she was too tired to respond consistently and the time prior to that, she had a fever and wasn't responding consistently. The hearing aids just don't give her access to speech. This news is bittersweet for me. Those of you who know me know I am struggling with the decision to implant or not. I was really hoping against hope that the hearing aids would miraculously give her enough benefit.
Only because I am a hearing individual with no experience in the Deaf community, do I want her to hear. In my view, having access to speech will give my daughter more opportunities than if she didn't have access to speech. Because I only know one Deaf man (whom I actually met just once) and his hearing wife and beautiful daughter can I say I have any exposure at all to anyone who is deaf. They are a great family and willing to help me and Mikaela in any way we need with our questions and connections about the Deaf community and Deaf culture. I am very interested in learning. I want to get involved and stay involved for Mikaela's benefit. Again, I am learning ASL and teaching Juliana. Mikaela's receptive sign language is showing growth. I am working on being more consistent with all I know to make sure Mikaela is shown early and often! Yet, I am not signing everything I say (because I don't know how and I haven't made it a habit yet) so Mikaela is left out of a lot of family conversations. Even if I did sign what I am saying, it wouldn't be true ASL because I'd be signing in English word order. I am working on making a concerted effort to deepen my knowledge and demonstrate more for her.
In favor of a CI: It is my belief that it will be 'easier' for her in everyday life if she can hear. Let's take the example I have noted before. Let's play.... Let's say Mikaela doesn't get an implant. In my little story, she is a minor and she requires an interpreter (me) where ever we go. Stores, play dates, even ChuckECheese for Pete's sake! We may be at a playground and how will she interact with a little friend? ....Let's say we are with family, everything will have to be interpreted by me for our hearing relatives. Sure, they may learn some phrases, but will they really be able to learn the language enough to sign as they speak so Mikaela can be part of every conversation? Let's say she wants to go play with her cousins, they definitely don't know ASL and how will they play? I mean fully play. Let's say she's older, a teen perhaps...she's annoyed with me or even her sister and really wants to confide in a cousin...how can she? Maybe she's having boy trouble or friend trouble, who can she confide in? Sure, she will have great friends in the Deaf community from her school, and other Deaf connections....but she will not be as bonded with her own family. I believe blood is thicker than water by far. I have had friends whom I believed we would be close as sisters forever, simply walk out of my life without looking back. Family won't do that. My daughter deserves to be as connected and bonded with her family as she possibly can be. I read a blog from one deaf individual who is now in his later years. He originally was opposed to CIs in children. After reading the account of his life, he sees the benefits now and is in favor of them. The chord that struck me most as he recounted the years, was that he was sent to a residential school for the deaf, and while he was away, his family learned ASL a bit, but never really well. When he came home, he said he felt like the family dog. Watching everything, but included in very little. I never want Mikaela to feel that way.
Now, my hesitations on the CI....IT'S SURGERY AND NOT MEDICALLY NECESSARY! Yes, it is medically necessary if she wants to HEAR. But it is not a life threatening situation. Would she have a wonderful life without hearing - yes! Although I don't know from personal experience, I know that many Deaf people are thrilled with their life just as it is. God sent me a perfect baby. I don't want to do anything to interfere with her perfection. There is more emotional turmoil going on, but I just can't seem to voice it. Not concisely or clearly.
Anyhow. I am moving forward with YES, we want the surgery. Kurt and I will make a list of questions for the doctor. ...and maybe some for my friend involved in the Deaf community.
6 comments:
Wow! How wonderfully written and clearly thought out. I am a teacher consultant for little ones with hearing impairments. I counsel parents such as yourself daily and I know what you are facing.
It is a challenge to know what to do but my advise is to make the choice as quickly as you can. A delay in getting a CI is a delay in speech.
Even with a CI keep in mind, your child will have a slight hearing loss and how that will impact her is an unknown. You may do all that a CI entails and still she could have some speech issues.
That is just a consideration. From all that I have seen and I've been doing this a very long time, I believe that having a CI is a very good option. It is the best chance at being an integral part of a neighborhood school, of a family, of the hearing world at large.
Speech training takes a long time and requires a lot of work on the parents' part. A lot.
But then, as you are leaning, so does ASL.
I advocate doing both though. I know that using ASL, even though you are not using it 'fluently', is providing her with a super language base. Language is fundemental. Speech can be acquired later. Language, if not experienced early, never catches up.
I wish you well. What a beautiful little girl.
more on my blog - if you wish:
www.babysigns4all.com
Congratulations Faith! I can tell how difficult it was for you to write this but you are making the best decision for your little girl.
We are so very happy for you all and especially Mikaela. I know this has been a long process to determine candidacy.
I look forward to hearing/reading about how Mikaela is doing.
Kim
I appreciate you sharing the struggle, Faith. You're taking some good steps-- connecting with others and seeking out an answer that will be right for your child.
I've started a new social networking site to connect with other parents-- you may want to start a discussion over here:
http://deafandhardofhearingkids.ning.com/
Hi Faith,
I came across your blog, and just wanted you to know that my family and I went through the same struggle and questions when deciding to implant my little guy. I totally applaud you for wanting to connect more with the deaf community. Meeting and chatting with other Deaf/deaf families has helped me with a total other perspective.
I think it IS possible to give your child the best of both worlds. We use ASL in our house as a second language, in hopes that Christian will be able to have access to the Deaf community if he chooses. I see ASL as part of Christian's culture, just as he is Greek and Irish. I wouldn't ever want to deprive him of something so essential to who he is.
You're doing a great job---good luck through the candidacy process!
Tina
Christian's Mommy
www.livelaughlovefamily.blogspot.com
What a great post! I really appreciate your post and echo many of your sentiments. We're also in the midst of that same candidacy process, and it's not an easy decision. We just had Lucas in booth again for testing, and he's getting nothing from his hearing aids, and is only responding at 105 db unaided. Right now I feel like it's our only choice. We're also signing with him, and he signed milk for the first time about 3 weeks ago. It was the most rewarding milestone he's had to date. And it's motivation to keep signing too! We're really using Sim Com (simultaneous communication). I learned that term from his TOD! It's signing (using ASL signs) and speaking at the same time - I guess pure ASL makes that difficult because of its grammar and word order. We think that it's also really important for Lucas to appreciate deaf culture. We want that to be a part of him. I don't know anyone around here though other than our TOD. I'd love to meet up with you sometime, maybe even at CHOP. When do you typically go? We'll be there again the Monday after Thanksgiving. Take care and good luck to you!!!!
My daughter is Deaf and uses ASL. She is able to play with her cousins (they communicate very well inspite of them only knowing a little ASL from Signing Time videos). When we got to a restaurant she orders her own food, she is great at communicating with hearing people. I do interpret for her when she needs it, but the vast majority of the time she is able to figure things out herself.
That being said, we are also seeking a CI for our daughter.
I just wanted you to know that non-oral kids have great lives and are able to interact just fine!
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