Lotte.. Signing & speaking.. 2005. 12 months hearing.

Cleaning up my harddisks I found this one.

It's a long one, and she uses Norewegian signs.. (Some of them similar with ASL)

So.. Here it is...

04:12 "Er is geen speld tussen te krijgen." - "Zeg eens "Monoloog"

"Tir n'a Noir"

Always beautiful... Always a joy to listen to.. and see..

To Sign or not to Sign

First I want to say that communication is the most important goal...

With sign language or speech, or pen & paper....

As long as you establish communication..

Now.. read on...

http://jdsde.oxfordjournals.org/content/early/2012/05/09/deafed.ens018.short?rss=1

Language Planning for the 21st Century: Revisiting Bilingual Language Policy for Deaf Children

1. Harry Knoors and 
2. Marc Marschark

Abstract

For over 25 years in some countries and more recently in others, bilingual education involving sign language and the written/spoken vernacular has been considered an essential educational intervention for deaf children. With the recent growth in universal newborn hearing screening and technological advances such as digital hearing aids and cochlear implants, however, more deaf children than ever before have the potential for acquiring spoken language. As a result, the question arises as to the role of sign language and bilingual education for deaf children, particularly those who are very young. On the basis of recent research and fully recognizing the historical sensitivity of this issue, we suggest that language planning and language policy should be revisited in an effort to ensure that they are appropriate for the increasingly diverse population of deaf children.

• 
  

Wait.. I'll turn on the sound...

With the introduction of the iTouch, Iphone, IPad etc. in our house, the number of applications increased as well. One of the applications we have downloaded is a Norwegian Signlanguage Application..
We used signlanguage - well, signs, when Lotte couldn't hear, and in the time she started wearing CI. So, out of interest, we had a look at the application.
It's very good. Many words in alphabetical order with a video attached showing the sign. Obviously, it's "sign", not "signlanguage" but still good to have..
Of course, we showed it to Lotte who is interested in learning the signs... She loved it... part of "loving anything that moves on a touch-screen" but she is very interested in signing...

So.. Lotte wanted to have a go at it and loved it. Entering the words, looking at the video and repeating them to us - for us to guess what it meant... Great game..

Suddenly she say's "I'll turn the sound on so we can hear what the lady says." only to find that there was no sound with this application... She was so surprised.....
Then she smiled, looked at us and said.. "Yeh.! I can do that as well". Took off her CI's and continued playing with the application for a while..
Not too long... there's not enough sound to keep it interesting....

 

5 years ago... our view

This piece was presented on a conference (NAS 2005 in Stavanger Forum) with all Scandinavian (Iceland, Norway, Sweden, Finland and Denmark) experts on hearing/deafness.. Lotte's mother was there to give the point of view of the parent..

Reflections of a Mother

I would like to equipe my child with several different tools that give her the chance to feel being accepted and at home in more then just one language-area. What is needed of the hearing world so that my child can be met on her terms, so that one can meet in the place she is in?

I would like my child to be able to travel on two tracks on her journey through life, which are parallell. Inbetween the tracks there are invisible bridges, that make it possible to change track whenever needed, there are restingplaces on both sides, where it is lovely to stop for a while and relax.

Or may be it is easier (and cheaper?) to just follow one single track? Then however it is not so simple to jump to the other side, where it can be good to be every once in a while, to relax, to understand and to be understood.

The scenery is probably more visible from several sides. We see beautiful things on both sides, different things, sometimes it’s easier to see around a curve. The colours seem nowhere the same, and the world actually looks a bit bigger!

To be able to get to know both tracks, the child needs several guides during the journey. People that may be have been there before, who can show the way and give a security about the fact that this road is awsome and this we are going to manage really well...

Where do we buy tickets to this trip? And at what cost?

What do the guides need to know before we go on our way, and not in the least: how do we get the child to enjoy the journey?

Mother to Lotte Sofie, spring 2005

(If you want to use this, please refer to the blog or email me.)

Just some brainstorming....

Social or academic... ? .. Where to put the focus...???
Lotte needs a lot of support in order to keep up with school-work. Reading is going well, and improves with the amount of time we spend on it. Math, adding and substracting so far, requires help as well. Fortunately, she loves doing homework. She loves reading and she's OK with being corrected - gramatically. (That said.. the sentence "I know that.!" is used often by her.. :-) )
BUT.... she loves to get the bike and just go back to school... interact with the other children that are still there. Cycling from one place to another... Being with others....
How to combine this.??
An advantage is that.. this is Norway. We have no problem with her cycling off. She has a watch, and even though she can't tell time, she understands how the dials have to be for her to be home. She's very punctual...
A disadvantage is that.. this is Norway. Days are getting shorter quickly, and cycling in the dark is a No-No for Lotte. Also dusk is too dangerous.... so this leaves little time between getting home from school, and being back inside.

So... there's the dilemma. She needs exposure to both social interaction and the academic... The social part is obvious when friends come home with her. To her it's great, because she can interact 1 on 1. Put another 7-year old in the equation, and Lotte will not be able to keep up.
A couple of days ago this happened when she had a friend over, and the two played along fine. When a third child came at the scene the interaction, or attention is not distributely equally. Lotte will fall behind in the conversation and games, and will get frustrated about that. Lotte came to us and informed us that the latter had to go. She wanted the friend to herself.
For us it's interesting to watch the difference between a 7-year old that has heard all her life, and Lotte, who has been deaf for the first 2 years.
We can see that there is still a lot to catch up.
Lotte is doing really well, but she is only slowly catching up on the 2 years lost. It seems as if she caught up 1 year since she got CI, meaning that she's mentally a year behind the rest of the class..
Realising that can hurt.... or you can look at the other side... CI helped her to catch up.
Because, when she had had signlanguage from the start and because of that had not had a delay in cognitive development, she would still not be able to interact with all the children she's interacting with right now. She would have had just a couple of other friends that would speak sign. And they would only see each other during schooltime, and sporadic visits.
Now, CI has made her in a very social girl, attending the school as her brother and sister - close to home, outgoing, determined to say what she wants to say. Sure.... she could be that deaf/Deaf as well, but not in the hearing world.
She would not have been able to communicate with her grandparents. Even thought they could have learned sign, they would have been surpassed by Lotte in no time. Now, she talks to them on the phone when in Norway, directly when in Holland.
In a way we cannot imagine how Lotte's, and for that matter, ours, and our other childrens life would have looked like had Lotte not been able to hear...
It would have been completely different. Can't say if it would have been better, or worse... but very different.

Btw... she's allowed to cycle to school for 1/2 an hour.. then homework.. :-)

Very nice little film....

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

Back to the past...

Yesterday, Sunday, Lotte suddenly remembered one of the teachers (U.) of her previous kindergarten. This is one of the deaf teachers there, who can speak very well. Lotte asked if she could go to the kindergarten and meet her.. (The picture on the right is from the last days there.... march 2006)
So today, we called the kindergarten and asked if Lotte could visit. She was very welcome!

Arriving at the school, she remembered where she had played and walked. After all, it is only 1-1/2 years ago, but for Lotte, that is quite a lifetime.
We went inside, and she recognised the school. There are only a few teachers there from the time she has been there, so she was very shy.
But, when U. appeared, she lightened up.
But, even though U. speaks well, she uses sign all the time. It was obvious that Lotte did not follow it. She listened to the speech.
This was even more obvious when another teacher arrived on the scene. This teacher, M. is also deaf, but her speech is very distorted. Difficult to understand for us, but for Lotte is was very strange. She kept her distance from this teacher.

But it was good to see them again. Lotte had obviously grown a lot, and everyone was glad to see her. They still had a book that Lotte "forgot" when she left there, so U. and Lotte went to get it. It didn't leave Lotte's side from then on...

Going out, it was funny to see that Lotte was looking for her coat in the "usual" place from when she went to that school. Straight back into the old habits....

For us, we could see how good our decision has been to have Lotte in an all-hearing kindergarten. The contrast between the two schools are quite big. Obviously, it is difficult to predict where Lotte would have been had she still been going to the deaf/hoh/ci/hearing kindergarten.... but there is a strong feeling that the move was for the best.

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"....

Communication

Soo many beautiful pictures....
Came across this one, and just had to put it here....

August 2006

She's grown....

----

2005-01 ----------- 2006-12

Rain-clothing..

Today, Lotte desparately wanted to go to the kindergarten and eat there.
So, packed the bread, dressed her up and off we went.. or so we thought.

Before leaving the house, Lotte kept asking for something, but we couldn't understand it. She kept repeating the word, but to no avail.
We tried to get past it by saying "yes - tomorrow" but this did not have the effect we anticipated. Finally, unwillingly she accepted and went out.

However, in the garage, I found out what she ment. On a shelf there was a rain-suit.
She told us that she needed to take her "rain-clothing" with her.!!
It's so heartbreaking - and warming at the same time, this little girl thinking about the bad weather outside, and informing us what to take. .... and we did't get it.

Another interesting twist here, is that we know that she knows the sign for "Rain-clothing.." but she either forgot that she could use it or decided not to. Either way, she accepted the fact that we didn't understand.

But these kind of episodes bring along many feelings. Being proud of her to accept that she cannot explain, feeling the frustration of the incapability to understand her, and more..
Sometimes it all works, then suddenly one is stopped in the tracks..

And that's OK.
A reality-check now and then is VERY good...

Visiting the preschool. Communication.

One of Lotte's best friends, Tone, visited her at her kindergarten. Tone was Lotte's speech therapist for 2 years in the "deaf" preschool/kindergarten and they really bonded. Then she started working elsewhere, and Lotte went to the new kindergarten.
We still have good contact since we all became good friends. Also, she now works close to the university, where Marieke now studies.

In her new job, Tone is still connected to Lotte, but in another setting.
This allows her to get involved, and this happened last week.

Lotte was allready informed and she was very excited to see Tone.
Tone lead a "gathering" where all the children are together and everyone is involved.
She explained sign, the colours, and as allways, the children loved it. (I still have to meet a child that is not entrigued by sign) She used sign throughout the whole gathering.
And this showed the gap between Lotte and the rest of the children.
Lotte was 100% focused and got everything. This is not the case when only spech is used. She still has to get more exposure so in a normal gathering she loses focus quickly due to the lack of understanding. Not when sign is used together with speech.

In a know situation she will be fine. When it's lunchtime, she knows the routine and has more control over what's happening. Outside these standard situations she will be less secure because she will have more problems understanding what's going on.
The "problem" is likely to be due to a lack of understanding speech, but a large part is comprehension. She does not have the capacity to think like a 4-5 year old child.

But it will come. With speech the comprehension will follow.

Reading list... Literature.

Thought it would be a good idea to gather books here that we read... (AllDeaf)
If you make a comment with some new books, make sure you add a publishing date because for CI-related books, 3-year old books are allready OLD!

Books & films regarding deafness, deaf culture, history
Research
* "Seeing Voices" by Oliver Sachs - 1990
* "Mask of Benevolence" by Harlan Lane - 1993 (The CI-part of the book is really out of date and really not valid any more.)
* "A Journey into the Deaf-World" by Harlan L. Lane, et al - 1996
* "When the mind Hears" by Harlan Lane - 1989
* "Everyone Here Spoke Sign Language: Hereditary Deafness in Martha's Vineyard" by Nora Groce - 1988
* "Laurent Clerc - The Story of His Early Years" by Cathryn Carroll - 1991
* "The History of Deaf People" by Per Eriksson - 1993
* "Laurant Clerc: The Story of His Early Years" by Cathryn Carroll - 2002
* "Deaf World - A Historical Reader and Primary Sourcebook" - Edited by Lois Bragg - 2001
* "Når noen ikke hører" by Sissel Marit Grønlie - 1995
* "Spelend leren horen" by Gisela Batliner - 2003 (Translated from German)
* "Norske Døves Tegnspråk" by Marit Vogt-Svendsen - 1997
* "The History of Deaf People - A Source book " by Per Eriksson - 1993
* "Att växa som döv. - En antologi" - Åsa Hammar & Bo Andersson - 1988
* "Innføring i lingvistikk" - Endresen, Simonsen og Sveen -1996

(Non-)Fiction
* "The Heart is a Lonely Hunter" by Carson Cullers - 2004
* "Deafening" by Frances Itani - 2003
* "In This Sign" by Joanne Greenberg - 1984

Movies
* "Sound and Fury" by Josh Aronson and Scott Davidson (Documentary)
* "Mr. Holland's Opus" Hal Leonard Publishing Corporation - 1996 (Film)
* "Children Of A Lesser God" Paramount Home Entertainment - 1986 (Film)

Books and films regarding CI
* "Cochlear Implants in Children - Ethics and Choices" by John B. Christiansen Irene and W. Leigh - 2002
* "Sound and Fury" by Josh Aronson and Scott Davidson (Documentary)
* "Sound and Fury - Six years later" (Documentary)
* "Cecilia's Story Introduction" and "Hearing Your Life " available from by Advance Bionics (Documentary)
* "Jacobs journey" available from Cochlear (Documentary)
* "A høre til.... - Samtaler med foreldre" - Liv Strand - 2003
* "Se mitt språk! - Språkbok - en innføring i norsk tegnspråk " - Nora Edwardsen Mosand & Ann Kristin Malmquist - 1996

Experience with CI
* "Rebuilt: How Becoming Part Computer Made Me More Human" by Michael Chorost - 2006
* "Wired for Sound: A Journey into Hearing" by Beverly Biderman - 1999

Cough Medicine

Yesterday evening,
Lotte was caughing a lot while asleep. When we went to bed we decided to give her some cough-medicine in order have her sleep more comfortably.
Normally, when her CI is off, we would use sign in order to talk to her, but now she was somewhat asleep, with her eyes closed. It seemed a pitty to wake her up so much that she would notice us....

So we put on the CI and talked to her. She was sleepy, but she got the message. She could keep her eyes closed as we gave her the medicine and let her on the toilet...
It was so good for her, since when she hit the sheets again, she was sleeping allready.....

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

New kindergarten / Preschool

As mentionned before, Lotte "grew" a lot during the holidays. A lot can be contributed to being in an all-dutch environment with little to no signs.

2 Weeks ago she went to an all-hearing kindergarten for 3 days in the week. This went very well. No problems adjusting. She's enjoying it tremendously.

It was funny that on the second day, one of the teachers said that Lotte used sign which - off course - they don't understand. There was no frustration from Lottes side that se was not understood.
I asked them what she signed, and it was "home". Then I turned to Lotte, and asked her... what is "this" - making the sign for home, and she immediately replied - for the teacher to hear - "home"... This showed that she was just tired and didn't want to speak. And it showed in a nutshell that she's at the right place. In the other kindergarten people would have understood her. Here, Lotte will have to speak in order to be understood.

In two weeks we can see the improvement in her speech. It's difficult to determine if it's due to more hearing-environment, but the progress is there.
(AllDeaf)

Mapping

Update regarding Lotte,

Yesterday we - my wife and me - went to Oslo to get a new mapping for Lotte. The new processors were not yet available so that was postponed. Too high demand and not enough new processors. So we'll continue with the "old" ones.

I asked then to go up on the power. Actually, Lotte never has felt any discomfort so I told them to feel free to "turn up the volume".
Went quite a bit higher than before and one of the programmes was set for listning to music. That went fine. No discomfort at all. (I decided no to push them to go higher...)
Only when she had both CI's activated simultaniously she reacted strongly. More surprise than discomfort but the technician wanted to go just a little lower.

After the first mapping, which took 1-1/2 hours, we went out and it seemed that she talked more clearly, repeated words more accurately. Kind of strange after such a short time, so we regarded it as luck. But there were some other words that were more clearly. It's amazing.
On a test they did, copied from German - English tests she allready scored 32 out of 35. Not sure if it is MAIS or ACS-R or simular. (Does anyone have those tests available so I can try them?)

The second mapping went fine as well. No big changes. The "music" program was set as "loud" as the "speech" program. (It was set a bit lower initially)

She was great to travel with. Quite a change from 3 months ago when she had trouble sitting still. (Who can blame her, 50 minutes plane, 30 minutes train, 15 minutes taxi, quite a long time for a three-year old.)

________________________________________________

Here some where she's signing with my wife. Note the BTE's in little bags on the back. She has them on both sides.








Here's another view of the bags with BTE's on her schoulders...

(AllDeaf)

Signs

Funny thing happened yesterday

Lotte is using less sign as her vocabulary grows. Same with us. We speak to her but we'll sign when she doesn't understand and if she understands the sign, we'll say the word/sentence again.

But Lotte is doing the same!
My wife didn't understand what she was saying and this time it was Lotte who used sign to explain what she meant.

It's great to be able to use sign. We feel that it helped her stay secure with communication while learning to hear, to listen and speak.
Obviously we have no referance if her progress would be faster when we would not have used sign, but that doesn't matter. We know we did the right thing.

We actually realised today that Lotte has still been deaf longer then hearing. She got CI when she was 2¼ years old. She has only had CI for 1¾ years....
Amazing! 

(From AllDeaf messageboard.)

Lotte zingt - "Poesje mauw"