Milestones, Mountain-ranges and views

Milestones....
They happen all the time, and like I have said on the blog.. sometimes they fly by, and sometimes they stand up in your face... (well, I said something to that effect..)

Last Thursday was the yearly checkup for Lotte. A great day out since we (actually, this was the first time I couldn't be there..) have to fly to Oslo, then take a train & tram to the hospital where the center for the check-up is located. One of Lotte's teachers joined Lotte and her mum.

This time, for the first time, it was Lotte who was in charge. She has grown so much lately, that my wife had no problem just sitting back and let Lotte do all the talking. And the specialists were excellent at directing everything to Lotte.
It must have been a wonderful day for Lotte because she was 100% focused the hole time. While adjusting the settings on the CI/BTE's, when finding the noises that she doesn't like (flushing the toilet) and trying to do something with that, she got it, and gave excellent feedback.. While doing speech tests in noisy environments and while doing comprehension tests. she did great. Her teacher was very impressed with Lotte..
But it's a great day out. She loves to go there and thrives on the attention, but this time, at the same time she realises the importance of the day.

In all, this day marks a beginning of Lotte taking over the "CI business" from us. She can accurately give feedback about how and what she hears. She understands the tests they are doing. She understands that there are different programs on her BTE she can use, because she was mentally there when they made them.
Of course life goes back to normal for her as soon as she was back at school, and she won't be playing with the different proframs, but she knows they are there.
Also, with one of her teachers being there, there is someone at school that will recognise difficult situations and can tell Lotte to switch to another program.. or, she might identify that Lotte forgot to switch back to the default setting.

Anyway.. It's a huge milestone. It didn't fly by. We didn't bump into it. It was like the mountain range in the distance that we finally reached.. We knew it was there, and were cruising along towards it. Now, having reached it, we can enjoy the view forward, and back...
It's a great view...

(btw.. Lotes mom promised to post an account of the day as well.... so stay tuned..)

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.)

Another big step...

Just came back from a trip to Holland. A little vacation packed with activities.
Flying to the birthdayparty of grandma on friday, birthdayparty of a great friend in a castle on saturday, visiting other great friends & kids on sunday... recovering on monday and tuesday, back wednesday..
We have never been in Holland with the kids this time of the year. Stavanger was cold and white with lots of snow and ice. (Not normal for Stavanger. Should be rainy and grey) Holland was rainy and grey with patches of snow.... Like Stavanger should have been..
Anyway.... for children being used to Holland in the summer, there was a little shock..
But, chocolate, sausages, chocolate-drinks etc make up for a lot.. and they had a great time.
Reconnecting with their friends and family. Being the center of attention...

Normally we see changes in Lotte due to being on holiday and around Dutch language only, compared to speaking and hearing Dutch AND Norwegioan all day.
This time we noticed a change that had developed during her absence in Norway... She grew - mentally, socially.

There are 3 girls right next door of the house in Holland. One was 2, one 4 and one 6.
Previously she would play with the 4-year old most of the time. For Lotte, communicating with the 6-year old was difficult and at times frustrating. Also for the other child I'm sure.
Playing with the 4-year old was much easier, and therefore the favorite friend.
But, Lotte got a bit older, the 6-year old became 7, and now they understand each other.
BINGO.. instand friends....

The parents of the girl noticed that Lotte speech is more understandable now. They also noticed that their daughter is adjusting to communicate better with Lotte. Shorter sentences for example..
So, in half a year, these girls grew enough to become great friends. Inseperable. Beautiful to watch.

The visits to Holland of course bring these developments to the surface. One has an image of the situation 1/2 year ago, and easily spots the changes. But the basis for these developments lies in Lotte's school situation. The second year mainstram, making friends, learning to adjust, learning to interpret situations all makes for good communication.

Lotte started with 2 years delay, due to her deafness, and started catching up 5 years ago.

She's not there yet.. But she is adjusting wonderfully and for us who see her every day, and in the same situation, it can be difficult to notice the changes.
Only when the situation changes, one can spot the differences. We can see them when we see her in a new situation, others can see them because they haven't seen Lotte for a while.

So, make sure to create those new situations, and enjoy the progress...

Just joking around...

Driving around, groceries... and Lotte is joining us..

She loves to go to the store...

On the way to the store she got a chewing-gum.... It's a treat as the kids hardly get one.... Only on long journeys... and when they are lucky, like today. At the end of the trip the chewing-gum is thrown away.... Part of the deal. No smacking, no swallowing and out of your mouth when we get out of the car. (We don't like to see them go around looking like goldfish on dry land... I know, we're terrible parents.... poor kids..)

Anyway, on the way back, Lotte quickly requested a chewing gum, and again she was lucky.... and happily started chewing..

While driving we told her a couple of times to close her mouth while chewing.... and suddenly.. she said.... 

"I swallowed it"... 

That's a real no-no... and we started explain to her that if she swollows it, she will get a tummy-ache, and she will not get any more chewing-gum.....

It didn't make an impression on her.... No panic reaction due to the vision of never having chewing gum again.... she just took the warning without problems.... No panic whatsoever.... something was not right....

.....and then she smiled and showed us the gum.... In her mouth the whole time...

Laughing out loud because she got us!!

A great joke, perfectly planned and peformed.... 

... something she would not have been able to do 6 months ago. She's growing up fast... 

Before we couldn't shut her up....

Now, our little girl can't stop talking, but how was it in the "early years"...
Here two videos, both on the way to kindergarten....
Saying nothing in the first one... vocalising in the second...





It's good to have these video's because one forgets the phases - and when the child went through it... So, make regular videos.
And take the same "subject".. we video'd Lotte a couple of times singing a childrens' song. This way we could see the progress...

So, for those that just started the journey... be patience.. it WILL happen..

Confidence

Time for an update on Lotte.
It's great to see how her development is going fast. In spurs. Perhaps having guests in the house in December (Lotte's grandma) and January (friends from Holland) really show the changes.
After all, they have not seen Lotte for a while and will notice differences easier.

The differences in the last couple of months have been in the way she pronounces words ( the "R" and "L" have really improved) and the length of the sentences.
These changes we notice ourself as well, but not as profound as the guests that are visting us.

But yesterday another important milestone appeared.
A couple of days ago, when I picked Lotte up from the kindergarten, she "complained" about a boy that had hit her and poured water over her. She wasn't crying. Just upset about what the boy had done. And explaining that he shouldn't have done this. All this in Norwegian, since we use that language when in the Norwegian setting.
In the evening, she explained the same again to her mother. This time in Dutch - the "home- language"...
Then yesterday, in the kindergarten, something had happened and a "meeting" was called.
All the children around the table, and the adults explained to the children what happened, and discussed it with the children.
When Lotte got the word, she stood up, and explained to all children about other children "mistreating" her in the last couple of days and why this should not be done.
All children listened to her, and when she was finished, agreed with her!

How about that! She feels so comfortable over there that she did this.
It shows how secure she feels. And this is a result of the kindergarten as a whole, the teachers that work there and of course Lotte herself.
And she will need it..... going to school, she will "lose" that secure feeling in the new environment. There are some idea's to have one of the teachers accompanying her, and of course, we will be able to assist her at school.
But the secure feeling she has at the moment at the kindergarten.... it's just fantastic..

A big THANK YOU to all the teachers over there....

Update.... 3 years with sound...!!

Lotte is moving on fast, catching up every day.
Lately her sentences became longer, more clear. Discovered rhymes, and more and more singing. Putting on CD's by herself (as in her own choice) with songs and/or stories..
Also writing new words is getting more and more her attention. She can write all the names she knows, but that's just remembering the order of the characters. Now she starts to figure out how to write words she hears.
It's a great adventure.!!

She had her yearly checkup in Oslo where they checked her equipment and tested her for hearing, sound discrimination, sentences etc. Everything was excellent.!!
In order not to waist time (and attention from Lotte), they skipped most of the easy tests in order to move on quickly.
She's at 92% on the scale of hearing / understanding. Whatever it means, and however it is calculated, it shows she's doing great.
In a way, we know, but it's nice to get it "officially"..... (why is that so important.?)

She is using longer sentenses, understanding more and more of the world.
More able to explain her wishes, and, recently, more able to explain what happened during the day, or previous day.

Some days ago, we had friends visiting us that we hadn't seen for almost a year, and when these kind of visits happen, people are amazed about how well they can understand her now, compared to a year ago. For us, it's a confirmation that she improves. Sometimes, improvements are so slow (like with any child growing up) that we don't notice, and it takes "outsiders" to give a sort of reality-check.

She's not deaf ?

It's official.. another milestone... Today... breakfast.

Lotte's sister is putting butter on her bread.. and of course, Lotte also wants to have the butter, and is "demanding" it...
So, her sister says "Patience Lotte, do you hear me? You need to have patience!"
Whereupon Lotte says "Ja-Haaaa.., Lotte are not deaf !"

So, we have it from a reliable source!

I missed it at first.. especially since we hardly use the word in our daily conversation with her. The closest we come to it when we put the CI on, and are asking if she can hear. Or when we suspect that one of the CI's is not working. But even then we use "hear" - never "deaf".
I thought she said "dead", since for Lotte, all meat and fish that is presented she asks "chicken is dead?" or "fish is dead?"
So, when my wife said - "Did you hear that.?", I realised that she did say "deaf"...

Her language (and cognitive skills) is developing so fast now. Like other summers, it seems to be triggered by being exposed to only 1 language for an extended period of time.
In Norway, more than 50% of the time she will use Norwegian (in the "Barnehage") and the rest is spent on Dutch at home. In Holland, it is 100% Dutch.
It is not that 2 languages is slowing down her development, as far as we can see. Obviously, it is first of all difficult to compare her language with what it should be. Secondly, we do not hear her speak Norwegian a lot, since we use Dutch. Only with friends visiting, we will switch to Norwegian, and she has no problem with that either. She will happily continue chatting in Norwegian.
But, the full exposure to 1 language does seem to speed up development, or perhaps just vocabulary.
So I guess...... more vacations!..... I can live with that..

BTW.... she's deaf. It's just that she can hear... Could be confusing in the future..
Ah well, she'll figure it out some day, and we'll be there to help her.

A new friend.. continuing story..

Today Lotte went to her new friend.
It's wonderful to see her take the initiative to get all dressed up and trodd out of the house, along the road, and to the neighbours hour......
And they were not at home.
Lotte checked all around the house. A little troll with a big blue "hat" on...

Later on, her friend was at home and they picked up where they left it yesterday.
Playing over there, over here, showing oof their rooms, sharing candy. It was just magic.

---SON---SOL---SUN---ZON---

This happened today, when we came home around 17:00, and got the mail from the mailbox.
The mailbox was wet, and this turned out to be a wonderful opportunity to write with her finger, so Lotte started: "L-O-T-T-E”. While she wrote her name she pronounced the letters as out loud: "L-O-T-T-E”.

Then..... came the dutch variant of the word SUN, she wrote "SON" (should be ZON). This was a true breakthrough, and had I not have the knowledge that I have gained in the last months, I would not have perceived how big a breaktrhough this was.

Increadable... think this deaf girl that at the age of 4 after only two years with sound manages to break the reading code.....

----SON----SOL----SUN----ZON----

Det som skjedde i dag, var at når vi kom hjem i 17-tiden, gikk vi for å hente posten i postkassen. Postkassen var våt, og den viste seg å være et ypperlig middel å skrive på med fingeren, og Lotte satt i gang: ”L-O-T-T-E”. Mens hun skrev navnet sitt sa hun lydene til bokstavene høyt: L-O-T-T-E.

Så....... kom det en nederlandsk variant av ordet SOL, hun skrev ”SON” (skal være ZON). Dette var et sannelig gjennombrudd, og hadde jeg ikke hatt den kunnskapen jeg har fått inne de siste månedene, hadde jeg ikke skjønt på samme måten hvor stor denne begivenheten egentlig var!!!

Helt utrolig.... tenk den døve jenta som ved 4-årsalderen og etter bare to år med lyd holder på å knekke lesekoden....

Argumentation starts....

Yesterday, Lotte had cleared up her room but had left some clothes lying around.
When her mother came in, she mumbled about the clothes, and then Lotte said

"But mommy, look - cleaned up!!"

One of the first times she has argued in her defense.

Other things pop up. How simple tasks are now interpreted. Her mom asked her to get a bag for the needles of the christmas tree. She normally would use plastic shopping-bags and knows where they are. But for bio-degradable waist we use special bag. Located on a slightly different place...

She drew her own conclusion, and brought back the correct bag.

Later on her mom asked for bags to put the christmas-tree lights in. She asked for 3, and Lotte brought back the correct bags AND the right amount.

In a way, this is not remarkable for a 4½ year old, but we have allways noticed that compared to other children of her age, she understood less. Not directly because a lack of communication, even though that has allways been there, but more because "normal" hearing children will pick up so much more information by just listning, by being part of the situation, that they "mature" quicker.

This maturing is now happening in Lotte as well, and it is directly linked to understanding speech. She is making good progres. Much to do with the (all-hearing) kindergarted she is in now.

Reading with Lotte.

One of the most important things to do with children is to read to them.
It will give them a feeling for words, for rhytm, rhyme, pronounciation etc. There's a direct link between the amount of reading a child gets (read to or reading themselves) and the performance at school.

Today Lotte's mum was reading from the "Mijn eerste Van Dale", a book with rhymes for little children, going through the whole ABC...
Lotte loves to do this. Loves to learn new words.

The book is obviously for all 3 children, but for the others we also bought the "Junior Spreekwoordenboek" a dictionairy with uhh. (cannot recall the english word.....) proverbs. (Thanks to this website)
It's great for them. Stimulates them to read, search for info elsewhere than on the internet.
They love it and read with grandma (who's staying with us), learning all kinds of new proverbs.


In addition... (the ease of the internet allows you to click on yet another item to buy) we bought the "Van Dale Praktijkgids voor Spelling". Not living in Holland, we have to make sure the kids can write proper Dutch.

Writing skills...

Today it's official - to us anyway.
Lotte can write her own name. And she's just as proud as we are.

Before, she would identify allmost all characters in the alphabet, but based on persons she new. So "L" would be "Lotte", "S" would be "Sanne", "T" would be "Tone" etc.
But today, she wrote her name and pronounced just the character.... "L", "o", "t" and "t" and "e"....
The connections have been made. Not bad for a 4½ year old with only 2 years of sound.








Another "task" she manages now is controlling the computer mouse. A year ago, we would have to click for her, but now she has the fine skills to control the position of the mouse. To us it seems so natural, but when one looks at a child that doesn't get it, one realises that it requires some synapses.

Otherwise, as the picture shows... not really X-mas weather. It's still 10º celcius outside. Unheared of... but it's the same in the rest of Europe.. Records everywhere.
I'm sure a small change in wind-direction will throw us straight into winter.

Prelude to "Shut Up"

Yesterday, saturdag, lying in bed, sleeping in.... suddenly a knock on the door.
Lotte, getting bored watching TV with her brother and sister, insisted on chatting with us.
And there was lot's to chat about. Not going to the kindergarten, grandma coming today, after the theater-play, etc.

So she's chatting away, explaining about stuff... most we understand.

But then, when I tried to say something to her, the reply I got was "Quiet, daddy.... I'm talking to mommy"!!!

Well, there's the prelude to "shut up" for you.....

But we had to laugh soo hard, and Lotte with us. She loves the attention and is happy to play the act..

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...

Lotte using the telephone...

Well, by using the speaker. With her CI's on the back, understanding via the horn might be a stretch.
But she loves to use it, and at times will ask to talk to "oma" (grandma).

Yesterday we had grandma on the line and so that all three kids can get involved, the speaker was used. The effect of this being that Lotte will start babbling continously. She just wants to get her story across to her grandmother.

Problem is, when one doesn't know what has happened with Lotte the last days, understanding her is very difficult. So, normally we will tell in advance what happened. But Lotte is happy with some "yes'" and "no's" and will keep on explaining.... and explaining.... and singing...

Yesterday we actually relieved one of the grandmothers by stopping the conversations, and ringing the other one. Fortunately, she had time as well to speak - make that listen - to Lotte.
Lotte sang her songs, and listened to the songs from her oma.
It was great to watch this special time with her grandmother....

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.

Singing

Lotte never sang in tune. She loves singing and can sing the melody but mostly out of tune...

Yesterday however she started to sing in tune.
She was sitting in the back of the car with her brother - (who's 5 years older) and together they continously sang the same song..

(We said it before.. she is so fortunate with 2 older siblings....!!)

So this is coming into place as well.
Sometimes one feels one cannot ask for more, since the whole technology is allready giving soo much, and then this happens.
Another milestone.

Pressing the little button and Yes .... Sound !!

Over the last two years, since the activation of Lotte's CI, Lotte has gradually realised that her working ears are on her shoulder... or at least, they need to be attatched above her ear.
This realisation has slowly grown.
In the beginning she would be happy to run around with her coils loose on her back . A BTE that stopped functioning (e.g. low batteries) would not be a problem. A soundless environment has never bothered her, and it still doesn't.
Later on, especially the last half year, the lack of sound, or perhaps better said, communication with her surroundings, does bother her, and we never see her with 2 loose coils. Sometimes one falls off and she won't notice, but normally she puts them on herself quickly.

IN the last month, in the morning (Lotte being awake before us... ), she will pluck them from the medicine-cabinet (which is steel, so the CI's stick on it due to the magnets in the coils) and comes to us to have them put on.
The way to do this was to switch them on, check the program, then the "volume" and then pin them on her shoulders (don't worry, by that time she wears some sort of clothing. :-) and finally attach the coil on her head. Only then sound would come in.

This weekend I changed that routine, and actually showed her for the first time that her CI gave her sound.
I first attatched the coil, and she realised that that did not help.... no sound.
Then I showed her how I pushed the button to turn the BTE on... and her face lit up..

YES !!! sound !

Only then I put the BTE in the bag on her shoulder, after checking the program and volume.

The other BTE, I had her turn it on herself, and again it was great to see her face light up with excitement. The realisation that it was her, by pushing that little button, that gave her sound...

In a way this is a new era, where Lotte realises that sound is something that comes through a thing that needs to be turned on.

Lotte's own will.....

Having a bright young lady in the family (2 actually) that knows what she wants and is not afraid to demand it is wonderful.... It is helping her tremendously now and she will have great benefit of it later in life....

But obviously it has it's downsides.
She has a very good idea about what she wants to wear. And most of the times it is something not chosen by her mother. (allmost by default ?)
We allready made the concession that when clean clothes are to be chosen, she can pick from two sets. This will give her enough feeling that it is her choice that she will agree.
However, yesterday she was told to wear the same clothes today (poor child... ). However, she managed to dive into the closet and find a clean pair of pants. Since this would be the first hurdle of the day - we chose to look the other way. And as expected, the second hurdle was no problem. This is "how to wear her hair".

When hurdle one (cloths) has finally been taken (this can take some time, unlike today) hurdle two grows proportionally.

Today... it went smoothly. (see picture above)

Her stubburness can have something to do with her intelligence. Even though she hears a lot, there must still be a lot of moments that she realises that she doesn't understand what's going on. She knows she's missing something.
Her way to handle this is to have very fixed ways of behaving and any deviation from this can cause a demand in returning to HER way of things.

An example was today in the pre-school. Marieke brought her and instead of leaving the normal way, she left via another door. (She had to go to the admin to talk with the leader of the school) For Lotte, this was totally "out of the normal" and she reacted strongly to that. Refusing to let her mother go.
After calming her down, leaving through the "correct" door, Marieke entered the school through another door.

But it indicates Lottes strong sense to have everything in order.

Obviously, there could be another reason than a "feeling of missing something". But if this is the case, what if she had been deaf without CI.
She would have had even more the feeling of missing something. She would be able to communicate fine with us - her parents - and her siblings. Also with the other children in the kindergarten that know sign.
But she would have missed out in communication with her grandparents, with our friends, and with her siblings when the three of them watch television or a DVD.
With more activities than now from which she would have the feeling she's missing out, would she have reacted in the same way. Would she have been earlier with these kind of responses? We will never know.

What we do know is that we have a deaf girl that has no problem explaining to strangers what happened today, what she ate, the drawings she made ect. (For the strangers, understanding might have been a challenge..)
This happened yesterday as well, on the school where her siblings go. There was a celebration and Lotte chatted with everyone willing to listen.. She enjoyed herself the whole evening..
Below, she's helping her brother and sister with making a collage. She just jumped in with all these other - elder - children and started working. Chatting away..
(AllDeaf)