Filed Under (CMV & Special Needs, Cochlear Implants) by Kel on 23-09-2010

I’m a big believer in words. Of course I am – I like to read and I like to write. I think there is a lot of power in words, and unfortunately, I think a lot of the time people choose the wrong ones. How something is phrased is incredibly important, and though well-meaning, I’ve read and been told a lot of things over the years that, looking back, I wish I’d never heard.

“CMV is easily prevented if the mother practices good hygiene.”

Now, there is some truth at the root of this statement: hygiene helps in preventing many illnesses, and CMV is one of them. However, what that basically says is that those of us with cCMV babies don’t practice good hygiene. What? Wait a second. Maybe I’m not the cleanest person on the face of the earth, but I’m not a slob. I wash my hands. I shower frequently. Especially when I’m pregnant, I make sure I’m aware of things I need to be aware of. What I didn’t do was stop being a mom: finishing my one year old’s leftover chicken nuggets and giving him sips out of my drink to teach him to use a straw. For quite a while, I was particularly angry that I didn’t know about CMV, that no one told me that I should stop sharing drinks with my son. They certainly told me plenty of other things to stop doing – eating cold deli meat, scooping the kitty litter, coloring my hair, sitting in the hot tub. And you know what? I did all those things. Just like I washed my hands and avoided the flu during a bad flu season. Hygiene wasn’t my problem, awareness was.

“The success of young kids with cochlear implants if 10% technology and 90% parental effort.”

When I was first researching cochlear implants, and when we were going through the implant process, I heard so many variations on this theme. I heard it on listservs. I heard it from doctors. I heard it on sites promoting Deaf culture and naysaying cochlear implants. I heard it on sites debunking sites naysaying cochlear implants. I think the only place I didn’t hear it was the deaf school, where they phrased it more around parental involvement being an important piece; most everywhere else stressed that the success of implanted kids was proportionate to the amount of effort the parents and caregivers put in. Now, there’s something positive about that, and it can make you feel great. “I’ll do everything the therapists tell me to, and my child will succeed!” Isn’t that a shiny concept? If you do what you’re supposed to, it works! …But what about when it doesn’t? What if it’s slow, or if it doesn’t work? Then you think back to that shiny gold ring and see that it’s now tarnished, and it’s now turned on you. If the success is 10% technology and 90% parental effort, and the technology is working, then where does the blame fall? Yep, you guessed it: the parent.

“The saddest thing is a child that can’t communicate.”

I had someone say this to my face. In fact, it was coupled with something along the lines of, “If he doesn’t make a lot of progress in the next 6 months, you should probably start exploring other opportunities [than teaching your son to listen and speak].” I dwelled on this for a long, long, long time after it was said to me. Honestly, I’m still sort of dwelling, though I’m moving past it (slowly). This was easily the most harmful thing ever said to me, I think, because in one fell swoop it made me question every decision I’ve made about Danny’s hearing, challenges whether he would ever be successful, and implied that I am currently doing him great disservice that make others pity him.

Words have power – a lot of it. I had a conversation today about how lately people having been using the word “try” a lot in relation to Danny, and how it makes me feel like there is an option of failure, like people are starting to question how successful we – and he – will be. Maybe I’m nitpicking the words, but there is a big difference between “John and I are teaching Danny to use his cochlear implants to listen and speak” and “John and I are trying to help Danny learn.” Do or do not. There is no try… Right?

One of my best pieces of advice to pretty much anyone suffering some parental guilt is: don’t listen to them. You know your family and what’s best for you. If you know that you did your best with what you know at the time … Good.

Don’t let the words have power over you. They’re just words.

     

 

Comments

deafa on 23 September, 2010 at 2:07 pm #

It is more of 75% to 80% parents. If not, they could neglect mapping, therapy, IEP, etc. The rest rely on the child himself and other teamworks. But he won’t be like hearing children who naturally pick up sounds and language without mapping, adjusting volume controls or program, FM, etc. It involve efforts from somebody’s part, either the child, parents, or teachers.

a deaf child fall extremely behind without their parent’s efforts. I’ve seen it. And if a child don’t have a language by preschool, he is far more likely to play catch up for the rest of his life.


George's Mom on 23 September, 2010 at 4:52 pm #

This post came at just the right time for me. We have had a bunch of setbacks with George, not in the hearing/speaking department, but in other physical developmental areas and it amazes me what can come out of people’s mouths before their brains kick in. Thanks for reminding me that it doesn’t matter what others say. I needed that.


Nat on 23 September, 2010 at 7:30 pm #

I’ve noticed this with a lot of things, especially in my life with infertility and loss. How people phrase things has a HUGE impact and can leave me stewing over a word choice for weeks. It’s so hard, because people don’t really intend to have that effect, but… things like this are just so incredibly sensitive on the parents’ part.


karen on 25 September, 2010 at 10:13 am #

You are right. People need to remember that they have only one mouth and 2 ears and to use them accordinlgy, otherwise the foot fits firmly in one of them,. Be brave…I told you that you are the right mom for Danny.Somebody up there knew what he/she was doing. I love you. MOM


Tammy Kenny on 29 September, 2010 at 6:59 pm #

amen. excellent post Kel. Hugs to you! Tammy


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