It's funny how many days I don't really think about the fact that Lily is deaf that much anymore. Obviously I think about it every morning when I put her CIs on and each evening when I take them off for bath and bed. However, most of everyday she is wearing her CIs and with them on she seems to be hearing and speaking as well as, or better, than other hearing children her age. So it can be easy to forget that she has a disability.
In the past few weeks though, I've been thinking a lot about Lily being deaf. First I read this blog post about a little girl wishing she weren't deaf and it made my heart ache. What will I say when/if Lily tells me she wishes she weren't deaf?
Then yesterday I had an experience with a child who has a different disability, but it made me think of Lily immediately. A little girl in a wheelchair was crying because she couldn't get in one of those big blow-up bouncy obstacle course things. Through her tears, she was telling her dad that she wished her legs were as strong as all the other kids' so she could play with them. It made me think of a time in the future when Lily might wish her ears worked like all the other kids she will know. Will she wish she could hear while going down the plastic slide on the playground? She has to take her CIs off to go down plastic slides because the static electricity could scramble her programs. Will she wish she could hear in the swimming pool and in the bathtub? At slumber parties will she be afraid she'll miss something if she takes off her CIs to go to sleep?
And then today I read this blog post that directed me to a video of some teen CI users. The teens in the video are advocating for themselves and telling the world how they hear. It touched me. I hope that Lily will have as good an attitude about her hearing loss as the teenagers in this video. You should watch it.
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You have to remember, those girls have a deaf mom. Every deaf need a deaf mentor to have a positive attitude. It can be imitatidating among hearing people because you feel they do better than you. I'm deaf who was surrounded by hearing people all my life, and I have always felt "handicapped" around them.
ReplyDeleteIf you want your daughter have a positive outlook of life, find a deaf mentor.
I've had to push these thoughts aside, but think of them often myself. I hope he never feels inferior or "different"; I hope we can teach him and give him the confidence to know he's just as unique as the hearing person next to him; I hope we can teach him to advocate for himself and teach others it's not something to be "scared" of.
ReplyDeleteBeen thinking of you all and hoping to meet up soon. Maybe once school is out we can plan a playdate!
oh, and I can't believe how big she's getting! What a princess!
ReplyDeleteNot easy to do because most deaf people feel like they are going against the grain. The way they think, their worries, how they act, etc. A deaf adult mentor help alot. Telling them they can do just as well as hearing people are just words to them because They have not seen a single deaf person. Once they have a deaf mentor they can look up to, they know they will be alright. It doesn't hurt if the deaf mentor know sign language.. Sometimes it is good because they know if this person can survive and be successful with sign language, I can survive with CI.
ReplyDeleteJust always be totally open about it. Make sure she meets lots of other deaf kids and adults that have CI's too. My daughter is turning 7 and she is totally fine with her deafness. We continue to point out other deaf people and make sure she sees that she is not alone, but at this point she just says "I know, I know.."!
ReplyDeleteWe have always told her that her CI helps her hear, and Mommy wears glasses to see better. If we see someone in a wheelchair, we talk about how his legs don't work like ours, so the wheelchair helps him move. We all have different bodies. (Stuff like that)
I use to think about it all the time, especially when Allison was 1st implanted, but now it is a way of life for us and she is doing amazingly well that those times are fewer and fewer. One of our thoughts when deciding to implant her was, what if we don't do it and 15 years down the road, she finds out that she could have heard and talked and we denied her that chance, would she say to us, "why didn't you do this for me?"
ReplyDeleteI am just so thankful that we have the CI's for our kids, imagine life without them, how different things would be.
Lily will be a great advocate for herself because she has such great parents that advocate for her daily. :-)
ReplyDeleteYou will let her cry and be sad and wish she didn't have hearing loss. Then together you will stubbornly determine, "Will we let this hearing loss stop you?" NO!! "Will the hearing loss keep you from making friends?" NO!! "Will the hearing loss keep you from your dreams?" NO WAY!!
ReplyDeleteYou and she will make it past this obstacle. Just be honest and straightforward and when she says, "Why?" you say, "I don't know." Then you ask, "What now?" and you go do life.
HOpe this helps.
Glad I found your blog. I also have a daughter with cochlear implants. Please check out my blog at www.rowefamilyadventures.blogspot.com
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