Time for an update.

Well... it just goes fast.... learning to read and write, drawing has exploded.. From stars and hearts, she's now drawing towns, cars, and this morning a carwash with lots of stuff around it. Signs which way to go in, cars that have to wait. A store next door, the road, pavement. Everything she learned recently and some time ago is now integrated in new drawings.

She loves to go to school. Actually, she wants to go by herself. Seeing herself as a "big girl" she knows she can do this. We feel differently, so we have to compromise.
She is allowed to walk by herself.... with her sister.... Not a popular option for Lotte.
Sometimes she is allowed to walk the last 100 meters.. That option is popular. She starts demanding to be "released" from the car, and after a kiss, off she goes. To school alone.
She makes sure we pass her, (..driving behind her is definitely not allowed) and 2 minutes later she arrives.... she did it HER way... Have to admire the little lion.!

Some time ago, I allowed her to go by herself. Kept her sister in the house a bit longer, so she would not catch up with Lotte, but she did anyway.
Lotte was deeply offended. Turned around, and came back home to tell me that "She wanted to go to school by HERSELF.!!"
So.. told her to go asap, otherwise she would be late... and off she went..

Don't mess with these little lions.!

Found it... The rhymes...

It's all about "10 little indians" and catching fish.. 

School is GREAT !!!

Music school

"I want to go to the music-school"... Lotte said..
My wife wasn't sure she heard it correctly, so ask Lotte what she said..
"I want to go to the music-school" ..not so loud and clear. (We are working on talking with a soft voice..)
Many of the children in her class are signed up for this. Playing with instruments, singing. All in order to create a basis for music.
Still not sure if Lotte understood what happened in the music-class, my wife asked her "What do they do ther.?.
"Singing" Lotte replied. She is totally aware what's happening there, and wants to be part of it. (We're not really surprised.)

Of course she will go there. She loves singing and playing on her piano. She sees her brother playing guitar and her sister sings in a choir. Of course she must follow.

We never signed her up because we wanted to see how she would handle the transition from kindergarten to school.
As said before, that went without a problem. (Seems it happened overnight..) so there's no reason to keep her away from the music class. Just have to prepare the music-teacher about Lotte.)

So, another milestone. Our deaf daughter wants to make music.
And it is very touching to see her sing along with the music. It goes too fast for her most of the times, but now and again she suddenly hits the right note.
It's wonderful....
Still... lots of work to do in that area.!..

Telephone

For the most, this blog is for us to log how Lotte is doing. Keeping a record that will allow us to look back regarding when things happened. Another big part is sharing our experiences with other people. Parents that are in the same situation, or getting there, and other people that are interested. But documenting Lotte's progress is definitely an important motive for the blog.
of those things to document is Lotte using the telephone. It shows her understanding of other people's speech without the ability to read lips.

Lotte has been using the telephone for some time. (See here for some posts.) From her side it always went without problems... The other side probably had another idea of it. (And I have been there plenty of times.) Understanding her is difficult sometimes, but her pronunciation is improving all the time. Also, she is more and more capable of telling a story, or experience, in a coherent way.

The video below is one of those moments where she is very exited and wants to tell everything at the same time. She slows down later, and basically, when she is finished with her story, she puts the phone down.

It's in Dutch, sorry about that. A Norwegian version could have been possible but will have to wait until later. We are working on the English versions of Lotte's telephone conversations... it will come.. :-) (reminds me... she learned some English rhymes.... time to post them as well. Have to find them first.... Found it!)

Sad news....

We just heard that the surgeon that operated on Lotte - Dr. Sten Harris - has died. He died on the 8th of may, after being sick for some time. (See here.)
That we only now heard about it shows how little contact we have with that part of the "system".

When we met him, he was the person that would make it possible for Lotte to hear. We had many conversations with him about how a CI works, the procedure, and he was the one that told us that we were the first in Norway to be offered bilateral CI for Lotte, in 1 operation. We knew he had fought hard to get this the standard in Norway. We couldn't believe our ears. A wonderful gift.
Lotte's mum wrote a poem for him on the morning before the operation, and we remember how the situation made him a little uncomfortable. As if there was even more responsibility on his shoulders. (The poem is elsewhere in the blog... here.)

So, even though we haven't had contact with him since Lotte was dismissed from the "Rikshospitalet" in Oslo, hearing about his death really struck us. Why would this be, since we didn't have any contact? We didn't know that when budget-cuts were done in the Rikshospital he resigned out of protest. We didn't know he was sick. It seemed that our connection stopped after Lottte was operated.
Perhaps it is such a shock because he is such an important part of Lotte's life. Of Lotte's current situation. The personification of one of Lotte's milestones.
Of course there are many other surgeons that could have done this, but in Lotte's case, it was Sten Harris. He made it all possible for Lotte, and for us.

And perhaps the poem says it all...

Take this child

Give her wings
to hear
the sound of my smile

Give her wings
to hear
the radiance of my eyes

Never the same again
after today
Blessed
with an exceptional gift

To hear light
To see sound
gives wings to the soul
.

.

.

(To Dr. Sten Harris, Lotte's Mum, October 4th, 2004 )

..." The Future's So Bright, I Gotta Wear Shades "

Lotte is doing very well at school. She enjoys going there, staying there. Dropping her off does not require any more crying from her side. She happily goes in by herself.... "Bye-bye mummy.!" to indicate that she goes into the classroom. Progress!

Something that was clear from the beginning is that she is treating school as a totally new phase. She is taking liberties that she wouldn't have 2 months ago.. all because " .. she's a big girl now.. ".
For us it's sometimes a problem drawing the line. We want to let her take more control, but she didn't "grow" as much as she thinks.
So, we are steering that new feeling of self-confidence carefully, making sure it is not bruised.
But we see that she uses it herself in order to cope with situations.
Like when the children were called to the stage on the first day. (See earlier post.) With all the children up there without parents, she took that feeling of self confidence and went up the stage to be with the other children. Something she would not have done before, but that day, SHE made it happen! WOW!.

She loves her teachers (yes... multiple.. life is good in Norway.), getting to know the children, playing with them.... just as it should be.

Obviously there are indications that there is still much to do.
Copying the other children is a very obvious one. It's inevitable, but also a good indicator that she does not understand everything. Important for us and the teachers to realize that, and take action when needed.

We also warned the teachers that answering correctly to a question does not mean Lotte understood the question. Let's be realistic... guess what the correct answer is to a question that ends with "... don't you think so..?" or "... you shouldn't do that, should you.?".
Lotte - and I'm sure many other children - will sometime just answer the question in the way that is expected, just to be done with it.
"No need to understand, just give the right answer." is sometimes the motto... ;-)

She is getting better with the songs that are sung at the start of the day. Repetition is the key word of course, and it is obvious that Lotte needs to hear it more often that the other kids. But fortunately, the same songs are still being sung at the beginning of the day. Changing to another song would mean Lotte would have to start again from scratch. But actually, that's part of life. We cannot expect that the children sing the same song for 6 weeks until Lotte can do it as well. That's up to us, to sing that song at home.

In a way, being Dutch at home and Norwegian outside reduces the amount of Norwegian children-songs sung by us. Many we don't know - we used the Dutch ones, but we realize that we need to speak more Norwegian with Lotte at home. When she's doing homework, it's better at times to use Norwegian. It's good to have Lotte connect Norwegian with school and Dutch with home.

But it's very important that people around her that look at her with the right focus, report the positive AND the negative, and act accordingly. That's one of the most important things to ensure the best possible outcome.
And the school is totally committed to that. Having that support is very, very important and we feel blessed with this.

English lessons!

School started for Lotte with English homework already from the second week.
Kids with cochlear implants tend to have problems with their working memory, due to a lack of language interactions at an early age. That means that new words usually do not linger after hearing it once. It has to be repeated many times. I actually compare it with a computer hard disc that is not yet formatted.

Well, formatting for Lotte has begun. Can't remember how many times we now have counted from 1 to 10 in English, but she thinks it's great fun, she understands what it means (probably because of her own understanding of two languages, that the same thing can have different names). Saying "three" is probably difficult for all children, but the lack of two front teeth really doesn't help! Otherwise she seems to pick it up, and remembers more quickly now (after a week) what the numbers are called.

Until now she thinks it is a great game, so we hope it will continue that way :-)

--- Mous ---

And to all readers out there.... just be patient.... Lotte will one day start writing to you all...
How cool would that be !!
--- Cloggy ---

Slipping Through My Fingers

Well,
Yesterday we went to the movie "Mamma Mia" - with all the ABBA songs.
Great movie, can recommend it.
Almost all the songs were known to both of us, except two.
This one was one that we didn't knew... and while listning to it we both had to make sure not to look at each other... we forgot to bring tissues :-)

But, it's amazing how a song suddenly can come so close to your life....


Slipping Through My Fingers (ABBA - The Visitors - 1981)

Schoolbag in hand, she leaves home in the early morning
Waving goodbye with an absent-minded smile
I watch her go with a surge of that well-known sadness
And I have to sit down for a while
The feeling that I'm losing her forever
And without really entering her world
I'm glad whenever I can share her laughter
That funny little girl

Slipping through my fingers all the time
I try to capture every minute
The feeling in it
Slipping through my fingers all the time
Do I really see what's in her mind
Each time I think I'm close to knowing
She keeps on growing
Slipping through my fingers all the time

Sleep in our eyes, her and me at the breakfast table
Barely awake, I let precious time go by
Then when she's gone there's that odd melancholy feeling
And a sense of guilt I can't deny
What happened to the wonderful adventures
The places I had planned for us to go
(Slipping through my fingers all the time)
Well, some of that we did but most we didn't
And why I just don't know

Slipping through my fingers all the time
I try to capture every minute
The feeling in it
Slipping through my fingers all the time
Do I really see what's in her mind
Each time I think I'm close to knowing
She keeps on growing
Slipping through my fingers all the time

Sometimes I wish that I could freeze the picture
And save it from the funny tricks of time
Slipping through my fingers

Slipping through my fingers all the time

Schoolbag in hand she leaves home in the early morning
Waving goodbye with an absent-minded smile

Original version here and here or ...

OO

Homework..

Lotte is doing well at school.
Still not eager to go into the classroom by herself, but a good 10-second cry to ensure she knows that we know that she misses us is enough.
Singing is not easy, as expected. Remembering the words is difficult for her. But otherwise it is going well. Also thanks to the great job the teachers are doing.

Also, no holding back from the school's side. Straight away there's homework.
Even an English song that has to be learned. (1 little, 2 little, 3 little, Indians.. ) That's too difficult at the moment, but it shows us to practice the new rhymes, songs and new words.

But she loves going to school, loves coming home. She enjoys seeing her brother and sister there, and when possible playing with them.

There's a lot to do, but with the way things are going now, with the support from the school and the teachers we can see it is going to be a wonderful journey..

End of the bags....??? Not yet..

Typical !
I'm explaining to people about Lotte's CI-bags, how she doesn't want them any other way, and then it happens..

She comes to me and says "Daddy, can the CI on the ears? I want to have a fat tummy."
She means - "a naked tummy" - no shirt. It's warm outside, and her sister goes without shirt, so obviously, Lotte wants to go like that as well.
However, she realizes the BTE's cannot be on her shoulders. But, being shirtless is an OK excuse to allow the BTE's on the ears.

So, to prevent changing the long for short cables, I made a pony-tail and put the cables through the elastic band as well... This way, they will not just fall off...

We'll see how Lotte likes it. Seems to be OK... Putting them back herself is not working for her. She has to ask someone else. No surprise there, she's never had them on the ears for more than 5 minutes, if that much at all.

And now no hassle with calling anymore on the phone. With the BTE's on the shoulder, when she wanted to use the telephone, we would transfer the BTE to her ear - with her permission of course.

Update:
She wore them continuously in the house, until we had to go out to the store. Then, she wanted to get a shirt on and hence, BTE's on the shoulder..

Oh boy..... what to do with little girls that know what they want ??

Lotte's CI-bags - A dissection !

Many people who see the bag Lotte has on her shoulders, and obviously like the idea, ask where to get them.

Well, we used to get them for free from our supplier... that is, until Lotte had been using CI for 3 years. Batteries and the bags were no longer free. So we changed to accu's (and loving it) and made plans to make our own CI-bags, since the asking price from the supplier is ridiculous.

So, I have dissected one of the old bags, and here they are for you all to copy them.

As can been seen, there is one piece of Denim, which folded together makes the bag. Another piece is attached to make the "lid". (Must be a nice way to make this 1 piece instead of two... ) Velcro is on the lid and the bag in order to keep it closed.

We then sew a safety-pin on the top of the bag, and "voila".. no more lost or fallen BTE's..

Have fun...

To our brave Lotte

Today was a special day. Today you went to school, a school where you will be like all the other children, and yet, not quite..
Despite the difficult start in your life you got the opportunity to live "hearing" between other hearing people.

Today was a day with many, many challenges and for us, your parents, a day with a lot of symbolism. You had to keep yourself up in a situation that you cannot control. Where you do not have the overview, where you do not understand all the information that is provided.
You were in a strange environment with new people. Until recently being in such a situation, without mummy and daddy, a situation like that would have been a problem. However, during the last summer holiday you have grown mentally with huge steps.
It goes together with understanding the world better. Exploring the world around you more freely. Being able to cope better with the situation like the one of today.
Today has put you in a situation that was difficult. A new social environment with new rules, new expectations. A situation where not everything is clear to you, and you will have to deal with it. Your intelligence helped you to deal with it... you are great in assessing a situation and anticipating it.

We will not forget this morning. Again you surprised us. We think we have some idea about how exiting this must be for you. For example, before the summer holiday, visiting the school you didn't want to let go of mummies hand and we were not allowed to go further than two meters from you.
But today you showed us how much you have grown.

You were on our lap, and when the children who were starting school were called to the front to the teacher, you asked mummy if she would join you. Of course she would...

Children were called up, and lined up on the stage.
Then, when it was apparent that you would be called, your body got tense and filled with determination. Your name was called and you jumped from your mothers lap, climbed on the stage, gave the teacher a hand, and lined up next to all the other children. No chance - and no need - for mummy to join you.
You did not even look back. You already decided that this was something YOU were going to do. Finished with kindergarten, you turned 6, and this was part of it. YOUR part. Going to school.

And then you were there.. proudly on the stage, smiling at us.

"Look mum - dad - I can do it myself.."

WOW!

After that you joined the other children to the classroom, and cherished your newly found independence. You found the table with your name and joined in with the other children, taking in your new environment.

You have shown us your courage. You showed us how you can make things happen by just wanting it.
You left us in awe while taking the new road to your new and exiting world. A world you are making your own using pure will-power, determination and trust.



We watch you with pride, with joy, admiration, and the wonderful feeling that all is well... that all is as it should be..!

--- Mous ---

Vacation Time

... and as we expected Lotte is moving on in the world.
Totally ready to go to the mainstream school. The same school as where her brother and sister are going... nice and safe.
But at the moment, end of July, she's in Holland. Making Dutch friends, speaking dutch 24/7 and growing fast mentally. (Still not eating vegetables and fruit though..)

If it has to do with using 1 language at the moment, or just the relaxation, or a combination of both, we are not sure, but there is improvement.

Spend a week in the UK, Northumberland, and visited the castle where part of Harry Potter was filmed. (The first flying lessons - amongst other things). Not that Lotte has any knowledge of HP, but the other two have. And well, let's face it, running around in medieval clothing is every childes dream....

2 B continued..

Beer en Egel...

Lotte and I (Lottes mum) were reading the touching story of Bear and Hedgehog, where Bear wants to water the little flowers outside his cave, because they're thirsty. However, he doesn't have anything but a bucket with a hole in it, to carry the water in. Hedgehog has the answers to this problem: Bear has to repair the hole with hay. But one needs scissors in order to cut the hay in the right length. Bear's scissors need sharpening. Hedgehog suggests they need a stone for that. After a long search, they find a stone, but they need water as well for sharpening the scissors. "How do I get that?", asks Bear. "In the bucket, of course", says Hedgehog.
Lotte and I had read the story once before, a few weeks earlier. From time to time it might be difficult to get an idea about how much she really understands of a story. Well, our story continues like this....

Bear and Hedgehog's story ends with Bear thanking his little friend for being such a good help (even though they have accomplished virtually nothing), and Bear hands him som flowers to put in to a vase. Bear asks his friend whether he has something to put them in. I asked Lotte whether she knew the answer to that question, whereupon she says: "Yes, Hedgehog has a bucket himself!!!!"
She remembered, and what's more, Lotte had understood the humour in the plot.
Our little rascal never stops surprising us; these are small everyday gifts that we appreciate enormously!

Another milestone..

So many milestones that will be reached when raising a child. And, even though we know they should appear, we never know when they come... and then, suddenly, after a long straight stretch of road they appear around the next corner... Suddenly, unexpected... but clearly visible...



With a child born deaf there are also milestones, some the same, some different. And with Lotte, born deaf, and implanted with bi-lateral CI in november 2004, the milestones might be the same as for a hearing child... they just are a bit further up the road... or did we just get on the road a bit later?

Anyway.... today we turned one of those corners...

Lotte was sitting at the table, waiting for dinner.. Suddenly, she said.... "Mammaaaa.... " (standard start of an important message :-) ... and continued "kniv - mes" (knife), "hus - huis" (house) etc... A switch has closed and she got the idea of two languages... And not only that... Different words is one thing, but she went further and did the same with the names of her siblings... the "Norwegian pronunciation - Dutch pronunciation"..

Something really clicked. And to repeat the slight change in pronunciation of the names of her brother and sister is another amazing feat.

Remember how people sometimes want to know how CI sounds... there are computer-simulations that will reproduce a sentence simulating 4, 8 or 12 "electrodes" and it sounds mechanical, distorted etc... I am always skeptical of these simulations because they ignore a major aspect... the brain.

And this shows it... The simulation of the same name with a different "dialect / language" would very likely produce the same "sound" when run through only 12 electrodes... The differences are small, but Lotte has no problem reproducing them... (Reminds me when she repeated the word "Aubergine" perfectly...)

Anyway... To all those out there that are inpatient... (like we still are), and who look at their children when they play with children their own age and compare them... (like we do), I would just like to say that with CI, we put our children on the same road as the hearing children. They will follow the same road, and they will have the same milestones as the rest... but still, they got on the road a little later... with a different vehicle.

And the milestones... they are not fixed. For every child - deaf or hearing - they are at different places... but they will all meet them.... and they will meet them all.

The difficult part is... being patient..

How we are raising Lotte... ???

Sometimes the question arises... how do we raise Lotte - communication wise....

Oral, Sign, both....

perhaps this gives an idea :-)

One for the record....

Lotte explaining golf to her mom...
I know.... in a way nothing special about this.. a 6-year old telling mommy how to play golf.
......... and that's exactly what makes it special!

Favorite sound

Was informed about a website - raiseyourhand.info - with info on hearing impairment, where there's a section with quotes of "favorite sounds" made by parents and children..
Had to add mine of course...

"My favorite sound is when I whisper a question to Lotte and she whispers the answer back to to me.
(Lotte, born aug 2002, bi-lateral CI since nov 2004)"

Have a look and read more about the survey done by Cochlear (a powerpoint/pdf with / without caption), and watch the (captioned or non-captioned) video of J.Q. DePaiva. (Son of Emmy award-winning actress-singer, Kassie DePaiva of "One Life to Live")

Have fun

FM-equipment

Lotte is getting close to going to school - in august.
One of the things we never considered is FM equipment. Lotte is hearing very well, and we are actually afraid that using the FM equipment would drop her focus..

But, we were invited to try one, and took Lotte with us (duh... obviously the best way to try..). After a brief introduction, the FM was added to the BTE. (See pictures) and I went out of the room to test it.
Lotte loved it.!! No problems with her father being in her head without being seen. (Then again... that happens often as we often call her from other rooms... But then, she can talk back.)
To her it's a great game.

For us, it's mixed. Obviously, it really is working well, and Lotte will benefit from it in some cases. In fact, my wife said that she needed two more... for the other kids..
But, there's something unethical to just get inside someones head un-announced.
Also, we don't want Lotte to change from the rechargeable batteries, to FM and back during the day. (The FM-part is using the cell-batteries..)

So, we know it works, we know Lotte has no problem with using it - on the contrairy - and we just need to find a way to test them out for real...

There was a great opportunity when Lotte was cycling and my wife was following her by foot. She did great. Stopped at intersections, waiting for her mom, could hear her at a good distance etc....
FM would have been ideal to instruct Lotte.
Only problem was - we forgot the FM-equipment..
Maybe next time...

We'll keep you all posted...



ps.. (09-2008)

Lotte showed that even in traffic, she can hear us. It shows she's tuned in on listening to us.
Having FM-equipment would make that unnecessary. She would not have to filter out the traffic-noise in order to hear us, and perhaps lose that ability.
Better to make her use the ears that she has.

Rechargeable batteries

In July 2007 we discovered from other parents that there were rechargeable batteries available.... just not in Norway.
We did find them in Holland and ordered them. We have been using them since they arrived, about january.

The way we do it:
Lotte can use them the whole day. When she goes to sleep, we start recharging the batteries and when we go to bed, 4-5 hours later, they are mostly recharged.
So, we put them back in the processor, ready to be used the following day.

No more counting days. ("was it 3 days ago we put in new ones, or 2 ???")

Currently, may 2008, 1 of the rechargeable batteries is not working properly and is sent to the distributor to be checked. Fortunately, we just change back to the old ones...

Reference - more info: Cochlear Freedom Battery Model: z60839