Thursday, February 14

My Love/Hate Relationship

As you have probably figured out, I have a love-hate relationship with the CI. I love that she can hear me when she is running out in front of something & I need her to stop. I love it that she can hear her cute little Valentine's teddy bear. I love that she can hear my voice when I say I love you. I can think of several occasions like those that I'm grateful for.

Then there's the other side where I feel like I'm taking away from her culture & that I'm deceiving her Deafness. We do sign and we are around Deaf people with and without CIs as much as possible. We have pens, shirts, posters & all sorts of Deaf pride items around our home. I feel like I am embracing the Deaf culture, but I still struggle with the CI. I know that Rebecca will lose her sight and I feel like being verbal and hearing would help her once she loses her sight. I know that there's tactile signing (which we will hopefully start learing soon : still looking for someone to teach us -hoping to have an update on this tomorrow) which we will definately teach Rebecca. I also don't particularly enjoy the audiologist visits and all the molds, batteries, dry packs, FM system, etc. that come along with the CI.

Part of me thinks of the CI as another tool like white cane training, braille or other tools that will will assist her with Ushers. I want to give her as many tools as I possibly can. I have a fear in the back of my head that Rebecca will grow up and say, "Why didn't you...". I guess that's a common fear of any parent, but I feel like it is amplified with her. I especially get this fear around other children with CIs that are further advanced than Rebecca. I think how much more can I be doing? Right now I do not have her in Audio Visual Therapy, but she has done this in the past. I know that this is something that we could add, but we are focusing more on giving her language than verbal skills.

I've heard people on the internet with CIs describing themselves as on the fence, not really in the Deaf world, but not in the hearing world either. I feel like that as a parent - Do I push for more verbal & hearing or more signs??? I don't like this feeling & I wish that it had been me who had chose or not chose for Rebecca to have a CI. I don't want to say that I've been forced on the CI, but I have chosen to accept a child with a CI. My plan is to let Rebecca find her own path, we are giving her tools to help her with whatever path she chooses. We are not going overally verbal, but do ask that she speaks as she signs. We do listening exercises periodically. We learn signs all the time and use total communication in our home. We will send her to an ASL camp this summer as well as a listening camp. She will also go to a camp for foster/adoptive children which will have in interpreter. There will also be VBS, Cheerleading camp, etc which will not have an interpreter for her.

I don't truly feel that either way is perfectly right & I don't know if I have that right to say what is right or what is wrong for her. She is going to have to make that decision for herself as she gets older. All that I am trying to do is give her as many opportunities as I can, so that whatever she decides she will feel comfortable with that decision.


Anonymous said...

Wow.. I know how hard it would be for you to find a way that's best for your daughter.
Let me tell you something and perhaps that will help you with your decision. My husband's distant cousin, Betty, has Ushers Syndrome and grew up in an oral school. She never learned sign language and refused to learn because of what she has learned at school that sign language was bad. Right now her vision has deteriorated and became blind. Since she's deaf and can't hear, she became very frustrated about how to communicate. Her older sister has Usher's Syndrome and she still can see did learn some sign language. She tried to encourage her to learn sign language but she refused. Her older sister was heartbroken because she doesn't know what to do about her sister, Betty.
So.. please make sure she knows sign language. What if her CI doesn't work or became not reliable when she gets older? You can just make sure that she has ALL kinds of tools ready so she'll know what to do when she becomes blind. People with Usher's Syndrome usually become blind after age of 20's. My husband's 40 years old and still have his vision. Your daughter has plenty of time and able to absorb all information she can use for her future life.
Thanks for sharing your feeling with us. Rebecca is very fortunate to have you as her mother.

Dianrez said...

You're a truly sensitive parent to be thinking of such things. As a Deaf culture participant, I'd say don't worry. Give Rebecca every tool possible and the skill to use each well, and just let her decide for herself which she will use most as she grows older. She will thank you for the range that you have given her. Trust her to make that decision, and to choose in the future whatever new tools that come along. Whatever it is, trust it to be a surprise. It's an exciting life.

mishkazena said...

You are doing your best, giving her all the tools you feel is the best for her.

Being a parent is the most difficult job on Earth. It gets more complicated when a parent must decide on using a controversial approach or not. All they can do is try their best and pray that it will come out well. Just like any other parent.

Rini said...

Let me say this, you are a dedicated parent. I am pleased to see that you are giving her every tool possible for Rebbecca. As an Usher's syndrome individual with CI and never learned to sign, I only wished that I did learn so that I can go back and forth between being able to speak and listen and being able to sign as neccessary. Trust me, _I_ think you are doing the right thing for her. Try not to worry too much because as everyone said in the past comments on other blogs and here and every other place--you are an unique parent who tries everything to include as a tool for their adoptive daughter and not let one option fall to the wayside.

If I knew how, I would totally and utterly nominate you for the Mom of the Year, or better yet, Mom of the Lifetime. So, yeah, I understand that worry is normal for any parents, but don't let it dominate your thoughts. ^_~