Deaf shame...

Found an interesting post in this blog....

Sure Lotte will experience this as well... not sure to what degree though.... Up to us parents to keep an eye on it.

Yesterday Lotte commented that the children in the first grae (age 6-7) were asking her (Lotte is now in second grade) what "it" is, the BTE's on the shoulders and the coils on her head.

Lotte has no answer for them.....

Lotte explained to us that she did not like being asked all the time. Actually, I have never experienced Lotte explaining her CI to anyone. I think that there is no real explanation to her. It's how it is. I'm sure the questions will come later, but for now, she hears with CI... end of (her) story.

So, we contacted the school, and asked if the teachers in the first grade could do something about it. In itself, this is difficult. Putting focus on it could be a bad thing. In a way, the children just ask what it is. A simple "I need it to hear" would be enough explanation.. We noticed that last year, with Lotte's class-mates. None of them is interested in a 5-minute explanation on CI.... A straightforward explanation is enough to cure the curiosity..

But of course it will be a matter of time before Lotte will start ask questions herself. Will we be ready for it...??? I guess not.... How do you prepare for that... .really..

We notice how she is thriving on sound, but also how there's sometimes a part she's missing. She has her own strategies to cope with it. Guessing answers, ignoring questions, making sure she's the one doing the talking.... Many different strategies....

The best one is of course how she answers a question that ends with ".... , isn't that right?"... Can you guess the answer to that question ....????

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btw.... followup on that site...

Very nice little film....

Hardly anything to do with Lotte, but wanted to share it with you all.... :-)

Perfect That Way

I posted the lyrics below in a post on a messageboard. The lyrics are very touching, and even though I do not see Lotte in this way, it is good to realise that there are many different people in this world.

On Hands & Voices, I found the link to the actual singer and a story about her. And, almost as a bonus, there's a MP3 there with the song.. all the way on the bottom.... or click here.

(Get your hankies out!)

Perfect That Way She was born a little less than perfect at least in that doctor's eyes he said that she'll be different much more than you ever realized that girl grew up not knowing the sound of her mama's voice God's gift to her was silence in a world so full of noise and she sings with her smile and talks with her hands she listens with her heart so she always understands she believes there's more to life than the sounds that it makes she's perfect that way shes got a sign for the thunder one for the wind and the rain she's the kind that keeps you laughing and the first to see your pain and she sings with her smile and talks with her hands she listens with her heart so she always understands she believes there's more to life than the sounds that it makes she's perfect that way she believes there's more to life than the sounds that it makes she's perfect that way she was born a little less than perfect at least in that doctor's eyes.

A reaction came on my post, saying:

"Cloggy - I am confused.... you brought up this poem which say that a deaf child is perfect that way. (I really related to that poem) Yet, you had your daughter implanted bilaterally."

My reply was:

"Fair question... My daughter is perfect, like everyone else.

And before we knew about CI, we accepted how this child was going to learn us something. A new language, a new way to "travel"

When we heard about CI, we investigated, and found out that this perfect girl would be able to join us in our hearing world. Would that make her more perfect - NO. (How can one improve on perfect?)

It would however give her more connection to her family, friends, people around her.

Would she be less perfect had she not had CI.. NO.. She would still be her.

We made it possible for her to hear. As parents, we made that choice because she was too smal to do it herself. With making the decision for her, we made sure that the possibilities that are there, are used to the maximum..

Again, she was perfect when she was born. She still is..

Perhaps you have to look at it this way... We didn't fix anything. We gave her someting."

Listning in before bedtime..

Bedtime again,

Lotte got orders to get upstairs and put on her pyjama's. We remove the little BTE-bags from her shoulders so that she can take her sweater etc. off, and up she goes.
Up she goes, and - after a while - down she comes down stark-naked. Talking on the stairs to us about reading. (remember, she cannot hear anything now)
We tell her to go back upstairs and get dressed... of course she comes down and comes to us... what parent can resist their little (naked) angel.... we can't..

So, we explain again what she should do. She tries to read our lips but realises she's missing too much.
Then, she picks up the CI (BTE in the bag and the coil) that we left on the table after we took it off, and puts it on. Now she can hear again.. !!
Imagine this... this little angel with the coil on her head, and the BTE dangling from it on a 6" wire. It was great and she enjoyed it as well. Picked up the second one and there she was, with a big smile...

It is the first time she has done this. Normally, in the morning, she cannot reach the BTE's and even if she does, someone has to pin them on her colothes.
Now, she just took them and "put them on"....

Self-help.... with CI....

When Lotte started with her CI, it was obvious that even though she liked wearing them, putting them on was not a necessity. She could be walking around without sound, not being bothered about the silence. After all, it's part of her life....

Gradually, she became more aware of this, and she would be quick to put them on..
(I recall an episode where she had a tantrum, let herself fall on the floor, crying, and when the CI came off, she made sure it was put on again.... I guess part of crying is hearing yourself...) But she could still go around a while with dead batteries without telling us. We use to normally change them every 3 days. But it seemed that if the sound was gone, and the coils were still there.... Ah, well, she just continued in silence....

About a month ago the next phase started. She notices when the batteries are dead. She'll alert us, and we will change them. Not long after that, she showed that she couldn't wait for us... ....
I was sitting at the table, and Lotte indicated that the "ears" didn't work. I wanted to check the display, and told her to come to me. First with my voice - she refused..., then voice and sign, but she had still no intention of coming to me. She wanted to go upstairs and get the batteries herself.... No time to loose!!!

I love to see her enjoying the CI, enjoying the sounds around her. And I also enjoy how she is perfectly comfortable without the sound. Sure, during the day, she wants to hear and will insist on new batteries. There's too much to miss I guess.
But when we take her to bed, take off the CI (pinned to her cloths on her shoulder..) she continues as if nothing happened.
And I guess she's lucky that she has absolutely no negative experience with putting them on either. She just does it and is up and running...

Hard-of-hearing or Language-deprived ?

A thought that crossed my mind - actually, it didn't cross, it got caught, is that the way we look at children with CI might be wrong. Wrong in the sense of what kind of support we give compared to the support they need.

Historically, CI's were the next step from HA's. And with that, CI's are many times still regarded as such. A hearing aid. Working in a different way, but still, an aid to hear.
People with CI are therefore still regarded as Hard-of-hearing since "obviously" they use an aid to hear.

This might very well be true in many cases, but a new generation CI-users is emerging. Children that are implanted (often on two sides) before the age of three that do not conciously grow up deaf. CI is giving them sound that enables them to speak and understand language.
The "problem" these children have is not lack of hearing. They hear very soft sounds, they understand and reply with whisper. In that sence they are not hearing impaired. (Keep in mind... I have Lotte in mind. I know results can be different.)

They ARE however behind in language and therefore cognitive thinking. The older the child, (1, 2, 3 years old) the more this is true. This is where the supportsystem should focus! On gaining on the lost language. Because language defines us.

Obviously, the situation depends from child to child. 1 CI will make undrestanding in noisy environment much more difficult, and with that, there is a hearing impairement. But think of children that do well with bi-lateral CI. These children need language, speech and above all, comprehension.

Example,
Lotte is now in an all-hearing kindergarten, and with the language she has, she is behind compared to other 4-year olds. (We are not worried about that. She only has two years of sound, so obviously she's behind - and catching up nicely...) She is not able to master communication with children that otherwise would be her "equal" because the others do not understand her. The result is that she will look for other children that either ar younger but at her speech level, or children that are more fysical that communicative. (e.g. boys, playing outside... where screaming and actions goes a long way.)
Focus should be on making sure Lotte is understand. (And this is being done in her kindergarden..)

It seems that for the children, focus is actually on communication and speech.
But what about the parents...
In Norway, the parents are offered sign-laguage classes free of charge. BUT, the focus is only on that. Sign. WE, Lotte's parents, do not have a need for that. Lotte does not use it any more. We need information in speech and language development. How does it work. What are the milestones... What to look for, how to play, what to do, what NOT to do.
BUT since children with CI are still looked at through "DEAF" glasses instead of "Language deprived" glasses, that support is not available. Only "DEAF" therefore "Sign" support...

How is that elsewhere..??
Is the support sysem different.
Like, AV-therapy. It's not available here in Norway, but I have a feeling that there the focus is on educating the parent.... Correction, it's not available where we live..
Anyway... have to do some more research on it.

Lotte's Morning Ritual....

The mornings have become a bit better. (Have a look here for the previous experience.)
Lotte is still waking up very early, but has gotten in the rhythm of going to the toilet to pee, then back to her room and starts playing.
During this time she will not be wearing her CI's, and it is therefore amazing that she still talks to herself. In a normal voice, she will babble along while playing.
After some time she will go back to the toilet for the bigger job. This will result in a loud cry "Daddy !! Poep" which is OK since not complying to this "distress signal" might result in additional cleaning.....
After this, she will go back to her room and continue playing. Still without her CI.
In addition, she will put on her clothes....


When we all need to get up, we go to her as well, say good morning... and that is for her the sign to put on the CI.
It's wonderful to watch how she goes straight for the CI's. They are hanging on the medicine cabinet, and she can reach it with the help of a little chair.

But interestingly, she will not take them before it's clear that people are finished sleeping.
We made that very clear, that when everybody is sleeping, she has to be quiet and remain in her room. Not wearing CI's is appearently also part of it.

Today, she started playing outside her room. I went out of bed... she didn't see me (Nor did she hear me) so I turned the light off/on to alert her.
I looked at her, pointed to her room and she said "Sorry Daddy!!" and went to her room.... turned the light on (she had turned it off, showing her intention not to return :-)

Ah... so cute!!!

Quotes regarding deafness

Sometimes quotes, being used in signatures of posts on messageboards, can give a beautiful insight in the world of the deaf. Positive and negative.

"Tell the mothers I said, "Don't try to change your child; you are the adult, you bear the burden of change" "
- Harlan Lane"

This one is about parents that find out that the child is deaf. It was first used in a time where CI's were not common yet and/or results were lower compared to today. The argument is in my opinion true in case the child remains deaf. In that case I do feel it is important that the parent makes sure that communication with the child is established. In the case of a deaf child, this is sign language. Sign would be th natural choice, and parents will need to adapt and learn this means of communication.
The quote is sometimes used to support the feelings of many Deaf people that feel that the child is the one that has to make the choice.
I feel that it is the parent who has that responsibility. Making the choice that the child has to make the choice lay's down another starting position for the deaf child.
To me, the quote is more correct when it is transformed to this:

"Tell the parents I said, "Help your child; you are the adult, you bear the burden of responsibility to give the child all the possibilities life can give" "

I found another one related to the Harlan Lane quote by CiPop on DeafNotes, who said:

"Parents, continue acting in the best interests of your children for Harlan Lane has been proven wrong!" - CiPop

And CiPop has good right to say that. His daughter has had CI for the last 17 years. He has been a pioneer far more than we ever will be..
And I can say that Lotte has also proven Harlan Lane wrong.
(Proven wrong based on the book "Mask of Benevolence" by Harlan Lane - 1993 (The CI-part of the book is really out of date and really not valid any more.) )


Other quotes regarding deafnes, picked from the internet:

"What matters deafness of the ear, when the mind hears. The one true deafness- the incurable deafness- is that of the mind."
- Victor Hugo

"One and the same thing can at the same time be good, bad, and indifferent, e.g., music is good to the melancholy, bad to those who mourn, and neither good nor bad to the deaf."
- Baruch Spinoza

"But people who think they can project themselves into deafness are mistaken because you can't.
And I'm not talking about imagining what a deaf person's whole life is like. I even mean just realizing what it is like for an instant."
- Richard Masur