i knew this moment would come, but i thought it would be when m was a little older for some reason.a few weeks ago m and i were sitting on the couch hanging out, and she was staring at my ears intently. finally she said, "mommy, why no put on ears? roro put on ears." matt and i knew that at some point she would ask why she wears implants and not everyone else does. after all, she has a set of toy cochlear implants that came with a stuffed animal when she got her implants, and she often plays with them by trying to put them on me. they look identical in scale and color to hers, so they look like the real thing. she notices when people have hearing aids. she'll point behind our ears sometimes, but when she actually asked me why she had them and i didn't, it took me off guard.
i've used the word deaf with her, and explained that she is deaf, and that's why when her ears are off she doesn't hear, but i don't think she totally understands it yet. i think she assumes we all stop heraing once we take baths or showers, or when we take naps or go to bed. i think she thinks it is normal to attach a device to one's head with wig tape, and to lose sound every so often when the implants coil falls off.
so i began a conversation that will last a very long time-throughout our lives i imagine, about what it means to be deaf, and to have implants, why she has them and we don't. it was short, and i tried to use words she would understand. for now i said her implants were special ears that helped her listen and speak, and that when she was born her ears couldn't hear, but when mommy and daddy were born our ears could hear, so we didn't have special ears. moments later she moved on to playing, and that was it.
then the other day i was changing ruby's diaper. m was laying on the bed next to her, snuggling up to her sister as she likes to do. m pointed at her head and said, "mommy, ruby no have special ears. roro, special ears."
so i guess she remembered at least a snippet of what i said.
part b:
this is how you know you have a deaf child with implants-multiple times when i have been holding ruby i check her head to make sure her implant coils haven't fallen off. then i remember-oh wait. she doesn't have implants.
it's funny what becomes normal. every time ruby startles to a sound it startles me. i often forget that she can hear at this age. it became so normal to us that m couldn't hear (even with her hearing aids) until she had her implants that whenever ruby responds to sound it kind of surprises me.
We call them "special ears" too. Peas has not yet asked WHY, but he does often comment that he has special ears and the other members of his family don't. "I have a special ears. Mommy, no special ears." :)
ReplyDeleteWe love the Moses books by Isaac Millman. They're about a school-aged Deaf boy who uses sign (which is fun because it reinforces some of the signs we've taught Ben), and they paint a beautifully normal, positive portrait of deafness. Ben loves them and frequently quotes from them. Also, we got a great VHS tape (used, from the 80's) of Linda Bove (Sesame Street fame) and others acting out a couple of fairy tales in ASL. In the introduction, Linda and a friend are explaining why they use sign. Linda says (in sign), "I use sign because I'm deaf and I can't hear." For some reason, Ben became really fixated with this line and quotes it frequently. His version now is, "I am sometimes deaf." And he'll often say, "I'm deaf in the bath." The other day, his hearing aid stopped working (temporarily, due to sweat) right during potty time, when he doesn't wear his CI, just aid. And he looked at us funny and said, "This is a time when I'm supposed to hear you!" (That's how we knew the aid had failed.) So he clearly is getting pretty comfortable with the on-off nature of his hearing. (Sorry for the long comment!)
ReplyDeleteplease call them CI. When my brother was little, We picked on him and told him that we were going to throw his nose out the car window. So we pretended to throw an imaginary nose out the window, and he cried and cried because he really thought his nose went out the window. Mom had to turn her car around (he was old enough to know where we threw it out) and pretended to get it for him.
ReplyDeleteYou want them to know that their ears is part of their body and not something that can attach and deattach. Just saying.
@ julia- yes- love the moses books too! (& i like long comments :))
ReplyDelete@anon
yes- my husband and i have talked about whether and how long to call them special ears. you make a valid point. thanks for sharing your thoughts.
i will say that she does know the difference between her ears and her "ears." and we don't always call them special ears; we call them implants too. i guess it seems like just a part of the longer conversation too-over time as she is able to talk with us more about the nature of being deaf and having implants, we will learn what she wants to call them. i imagine that will be something that on some level she owns. but we def. have reservations about calling them "special ears" for a number of reasons- in the moment it just seemed like the easiest way to explain it, when we usually just call them her ears.
of course, re: the attachable/detachable nature of her "ears"- obviously your brother's nose wasn't *really* detachable either like a CI/"ear" is, but in that moment you guys convinced him that it was detachable...so don't know if calling her ci's special ears would avoid that scenario. not sure how much i am concerned about her thinking her body parts can come off. our reservations about using that term are more about the inappropriate use of the word special in regards to her deafness/implants, etc.
I think the terms you use will evolve as she gets older. "Special ears" probably is easier for a two year old to understand than other, more specific terms. I think it covers the spectrum well for now. At some point, you'll probably change and either be more specific or just change the words. It might be "unique" or "different" or "extra help" or whatever you determine is appropriate. I'm sure there are lots of opinions on what to say and when and you'll have to figure out the piece that fits your puzzle.
ReplyDeleteIt is amazing how I similar the discussion is compared to just about any other kid. They ask a tough question about themselves or the world and the parent has to determine how to answer. Monrovia is just asking a question that most people don't have experience with so finding the "right" answer is murkier.
Actually, it probably isn't murkier, just new territory for you as a human being.
However, when Ruby and Monrovia start asking the hard (but expected) questions, you probably figured out how to answer them a while ago, possibly long before you hads (not necessarily, though). But, for those common questions, there is often way more information and opinion to wade through. Or, in hearing terms, lots of static.
Not sure what happened in that last paragraph but it should say:
ReplyDelete...possibly long before you had kids.
thanks for sharing this moment with us...your daughter is one smart cookie!
ReplyDeletei think it is okay to have your own name for Roro's implants. We call Delia's BTE or her CI but usually BTE and refer to her coil as her magnet. Kids are smart and figuring out the world is part of growing up and awareness. There is of course no shame in deafness and therefore in the names we call implants. Just wait for the day when Roro figures out she can attach metal stuff to her coils! Fun times and party tricks. Also, 2 nights ago Delia said "please don't take my BTE off when I am sleepy, ask me first."
ReplyDeleteCan relate with but with the adoption discussion. A & J are very aware of pregnant moms/teachers in their life these days and have been asking LOTS of questions about babies origins in the last several months. The first time J asked it surprised me but we too are trying to"normalize" the language as much as possible early on. Part of "their" story after all, learning about who they are, differences/similarities with others, etc.
ReplyDelete