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"

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.)

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..

Wear on the coils..

With the way Lotte is wearing her CI, the BTE's on her shoulders, there's quite some stretching involved when she puts them on herself when they fall off. (Have to make a video of it... here it is)

Here are some pictures of the damage that is done to the coils. Mind you, they last
quite long. What you see is the result of 4 to 6 months.

The first picture shows a torn outer "casing" that protects the wires running inside. The second picture shows twisting due to the constant handling by Lotte. (This actually doesn't happen any more. It was from quite some time ago.)

BTW.. the coils shown still work fine. We only replaced them to make sure Lotte will not "lose sound" because the coil would fail during the day. I think this happened only once or twice in the time Lotte used CI. (3 years almost.)

BTE or Bodyworn...??

This will allways be a question when the child starts with CI, and even more so when the child has bilateral CI.

When Lotte was one of the first to be implanted bilaterally, the Freedom had just been developed and even though she got "Freedom" on the inside, the outside was the old Nucleus. So the only bodyworns available to us (Lotte) were the "big" cases, and two of them would have been massive.

(I believe the one on the right is the bodyworn at the time....)

So, the Ci-team proposed to use the BTE's, but after picking them up 15 times an hour (per ear...), we decided that on the ear would not work. 2 coils and 2 BTE's that can loosen and fall off is too much to handle....

(Also, Lotte allways pulled off the HA's and we were not looking forward to a similar behaviour with the CI's'. In retrospect, she has never taken off the CI's. We have been fortunate with that..)

Being the engineer in the family, I clipped off the fingers of an old wollen glove, put the BTE's in the fingers, a safetypin through it and pinned them on the shoulders of Lotte...

That worked fine, without too much falling off of the coils. Plus, no need to hang the BTE on the ear.... That is allways secured (and can allways be found..)

We tried a couple of time times to put it behind the ear, but the combination of earsize and BTE-size is not compatible. Doublesided tape etc. could work, but Lotte really disliked that solution. After all, she is used to the ears on the shoulder, so why bother?

To give an impression of the difference, here are two pictures. One with the bodyworn, one with the BTE's on the shoulder..

....... vs .......

Coil+Earhanger+Bodyworn ....... vs ....... Coil+BTE (click to enlarge)

So, for the last 2-1/2 years she has worn them on her shoulders and without any problems. This includes playing outside in the sand 50% of the time when she's at the kindergarten, and the BTE never failed and was never lost. Also, the staff there can just put the coil on when Lotte for some reason cannot do it herself or simply forgets (in the beginning she would just not bother. Nowaday, she immediately puts them on..). There's no hastle with tape, glue, ear-hangers that go in the ear or caps.

As mentioned, the only thing that can fall off is the coil-piece, but soon she figured out how to put that back. Actually, that is a small disadvantage. By putting them back herself, she is putting some tension on the coil-cable, but the are pretty strong.

Remember, there's nothing on her ear, nothing in the ear, nothing on the head, except for the coil. The BTE's are safe on her shoulders.

We were worried about the BTE's under the coat for example (scratching sounds), but she has no problems with hearing when they are under the coat. Guess the coat id holding the BTE's steady so there is no scratching.)

Advantages:

* You will never loose the BTE. It's secured,

* Only the coil can fall off. The child can put it back her/him-self,

* Much lighter than the bodyworn,

* Still accessable (sp?) for the parent to change programs,

* BTE's are spaced out wider than the ears, so (I think) perception where sound comes from is better,

* We use a safetypin to attach it to the clothes so it can easily be changed from one piece to another,

* No need to buy/make special pockets in clothing, just 2 little bags with safetypins,

* When raining the BTE's will be under the clothes. (and as said, she'll still hear without problems), when there's much wind, it will also be protected from that, not causing weird sounds,

* ...... I'll think of some more - to be added later
* ...... You'll think of some more - Put it in a comment, and I'll add it.

Disadvantages:

* Possibly: Sound has to be picked up from the shoulders, (but that does not seem to affect her hearing capability. She hears a pin drop on the table... literally!),

* Possibly: Scratching sound when a coat is worn over the BTE's but we have not seen any problems,

* Cannot use rechargable batteries,

WRONG! - got info (See comments) that they are available.... only in Canada and USA??? Not here, but we will be working on it !!

* There's strain on the coil-wire when the child puts it back her/him-self, (but in the last 2-1/2 year only 1 failed.),

* There will be holes in the clothes when the fabric is thin, (but how long do these cloths last anyway..),

* ...... I'll think of some more - to be added later* Possibly: Localising sound after hearing it, initially cannot be done by turning head. The shoulders would need to turn. But like with us, we allready know where it comes from when we turn our head...

* ...... You'll think of some more - Put it in a comment, and I'll add it.

Do want to mention, that recently we started to use the BTE on the ear.

We have a feeling, call it a hunch, that Lotte wouldn't like to have the BTE's pinned on her bare skin, so at bedtime, straight out of the bath-tub or from the shower, we put the coils with the short wires on the BTE and hang them on the ears. She's OK with that but still prefers to wear them on the shoulders. But she needs to get used to it anyway.

What does Lotte feel, what does she hear...??

One problem for parents with young children that have CI is to grasp what the actual experience of CI is like. Obviously, these children have no previous experience of sound, so there is nothing to compare it with. Their experience is as it is. For them it's normal.

In a previous post, there was focus on how we as parents of young children with CI go through the same experiences and how this makes an invisible bond.
But also the older people that actually have CI in the messageboards are close to us. This because they can give us an insight in our childrens world.

One example, discussed before, is the feeling of the CI or coil being put on or taken off.

I have copied part of the posts (that I copied into the comments) below, but a couple of experiences I have put down here. It's a wonderful insight about how it might be for Lotte; even thought every experience might be different. (As said, more info in the comments...)

AllDeaf, september 2006

Its more like a whine - its the complete *absence* of sound -like severe tinitus that lasts about 30 seconds. I think its the auditory nerve getting used to going from a state of high stimulation to nothing.

whoosh or whine, well stand in the room where your tv is with sound on. blow a whistle to yourself then suddenly stop, notice it is quiet for a second the sound start hitting your ear eh.

AllDeaf, november 2006

When I attach the coil I hear whatever is in the vincinity - be it voices, music, whatever- there's no "waiting period" or needing to get used to it - [...] However, when I take the coil OFF, I get what is like a high pitched "whine" sound - [...]

I always get that weird sensation when I take my coil off, it lasts about 2 seconds. [...] As for putting on the CI, I get like loud beeps [...] for 3-4 seconds...not too loud, but is noticable.

Bags for the BTE

How to practically carry the BTE or bodyworn processor and coil ??

Our experience with the HA's was not good. She accepted having them behind the ear in the deaf pre-school, but as soon as she was leaving there, the HA's would come off. Which is no fun, driving the car, having your 2-year-old pulling the HA off, whistling everywhere, and the HA's in several pieces.......

So, with the CI, we decided to find another solution...
The BTE's of Cochlear are a bit thick. They fall off easily and we didn't like attatching it with wires around the ear, plugs in the ear, double-sided tape, etc. Especially when there are two that can fall off.



We very quickly chose to put them on her shoulders. At first I cut of fingers of a glove and attatched them with a safetypin. The providers of the Cochlear system - Medisan - quickly made sturdy bags, with a little flap that closed with velcro.


Another advantage of having the BTE's on the shoulder is that the BTE's don't show with the hair done up as shown here.... (Often we put the coil under the hair to make it harder to fall off.)













A couple of months ago, I sewed the safetypin on the bag. On the picture the flap of the bag goes through it. (Flap secures with velcro.) The microphone is sticking out.
As can be seen below, there is quite some wear on the bags, but for something used every day, 10-14 hours a day, they last quite long.

Some detail pictures of "our" system.... (Like with all pictures, just click to enlarge.)

(Here's some more info and comments in the blog regarding the BTE-bags.)

Lotte's gastenboek...

Hier wat informatie uit het gastenboek van Lotte dat een tijdje in gebruik is geweest. (2005)
De entries heb ik erin gezet via de "comments"...

Meeste informatie is in het Nederlands, soms in het Noors

Reacties & Feedback

Velen hebben nu een link naar deze Blog gekregen..... dus ik dacht dat het passend zou zij om hier ook een reactie te geven.

Gewoon op ".. comments" klikken, en vertel maar wat je er van vind.
Persoonlijke ervaringen wat betreft Lotte zou ook gaaf zijn!

Bedankt

---

Many people have been given a link to this Blog.... so I thought that this post might be appropriate to give comment on it here.
Just click in the ".. comments" area below and give me some feedback.
Personal anecdotes regarding Lotte would be great as well!!!

Thanks

2005-08 to 11 (August, October and November)

2005-08 (August)
Another update on our CI-borg.
In july my wife went with the kids to The Netherlands, I joined a week later - someone had to work - and we spend two weeks with good friends in a house in the south of Holland. (OK, not Holland, The Netherlands...)

For Lotte this meant 3 to 4 weeks with only Dutch language around her. Most people don't know sign, so she was submerged in language.
She did great. Learning to say all the names and much more.
I think she made a mental change as well. I really clicked now. She sees the connection between words and actions, objects etc. It's great to watch.

One thing to mention.. she whispers. It's so great that when we start whispering to her, she lowers her voice as well. And of course, being the sceptic engineer I put my hand in front of my mouth just to make sure she wouldn't read my lips, but no problem, she understood it all. It's such a "miracle" and we're with her on the stage witnessing it. WOW.

A couple of days ago, I thought that whispering might be something unknow to deaf people. How is that. Obviously, when becoming deaf at later age, whispering is known, but how is that for HOH or deaf people? Whispering to someone with a HA seems pointless to me.
(AllDeaf)

2005-10 (October)
Email to the hospital, before the 1-year control..
Heisann!

Siden vi skal til deg neste uke, tenkte jeg det at det var hensiktsfullt å sende deg en liste over ting som Lotte kan, slik at du er noe informert på forhånd. Det går i stormfullt tempo, hun later til å forstå både Norsk og Nederlandsk like bra.

Lotte
- bruker det verbale språket mer og mer, også uten tegn
- prater absolutt hele veien
- bruker 2-ordssetninger (det har kommet en 3-ordssetning én gang)
- roper: "Mamma, hvor er du?" på nederlandsk
- sier tydelig "schoenen aan" og "jas aan" (ta på sko, ta på jakke), når vi skal ut av døra
- forstår veldig mye uten tegn
- "Skal mamma hjelpe deg?" "Nei, Jelle hjelpe!" (Jelle er storebroren)
- leser bokstavene S, A, O, M, U, I
- Hermer etter vokalene
- hermer etter Bibi, Baba, Bobo, Bebe
- lar seg trøste med sang når hun gråter
- hermer egentlig etter alt mulig. Morsomt! Hun har en helt egen drivkraft til å ville kunne
- kjenner igjen pappa sin stemme i telefonen når den er satt på høytaler (Når dette skjedde hadde pappa vært i nordsjøen i over en uke)

Enda et lite eksempel på hvordan hun hører:
Jeg kjørte bilen mens Lotte satt i baksetet. Jeg snakket til henne og hun plukket opp ord og hermet mens musikken sto på!

Vi gleder oss til å treffe dere igjen. Får Lotte forresten de nye prosessorene nå?
Hilsen,

2005-11 (November)
Email to CI-team after 1-year control
Vi erfarer atter en gang at Lotte hører enda bedre etter vi har vært hos dere. Mikrofonene fester vi som før på skuldrene. Vi har prøvd på forskjellige måter i fire dager å henge dem på ørene, men ørene er rett og slett for myke, og mikrofonene faller av hele tiden, til og med Lotte ble frustrert. Så går hun rundt og tygger på de forskjellige delene, og vi leter etter spolene gjennom hele huset.... Ikke bra, altså. Hun er fortsatt for liten. Funker heller ikke med batteriene på ryggen. Aner ikke hvorfor dett fungerer hos andre, men ikke hos henne.
Nå har vi fått to lange ledninger igjen fra Jörgen og er de festet på "gammelt" vis, og alle er fornøyd.
Det kom noen tre-ordssetninger denne uken, på nederlandsk sa hun "Mamma blir her!", for jeg skulle ikke være med på biltur. Ellers så hermer hun etter absolutt alt hele tiden, og begynner å synge(!) med på noen sanger som hun kjenner godt fra før, fordi vi har "sunget" dem på tegn ved leggetid........

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)

Feb 2006

I'm Cloggy's wife and Lottes mum.
Cloggy said it was OK for me to chip in, problem is I usually don't take the time and sit down behind our PC other then checking my mail. I read some of your posts, and thought it would be nice to tell you a small anecdote from a couple of days ago (maybe Cloggy already told you, forgive me if so...).
Our two girls were playing upstairs, the oldest, Sanne, is hearing and 7 years old. From underneath the staircase I shouted: "Sanne, Lotte, dinner is ready!!!". Immediately I heard Lotte reply to her hearing sister: "Sanne, Sanne, come and eat!". Where we very often have to ask for a reply from the two hearing kids, we get it from Lotte spontaneously (wonder though how long that is going to last.....). Having called the other two kids "hearing", I must tell you that when Lotte is wearing her CI's, I do regard her as hearing too. Why, she has better hearing then my Mum!
Luckily, we can communicate through sign rather well, and we do believe that her learning sign at an early stage was an important "base" in order to learn the spoken language later on. For a long time we have used sign in addition to the spoken words, until we saw that Lotte herself started to use them less and less. Now we're at a stage where she will enthousiastically tell us something that obviously is important to her, she'll babble with no sign whatsoever, and we have no clue what she is talking about! Then we have to say, please use some sign so we know what you mean!!! To see her enjoying using her voice and communicating throug that voice, whether it is talking or singing, is a great gift.
(From AllDeaf messageboard.)

Lotte sings "Ik Zag Twee Beren"

Lotte sings "Poesje Mauw"

First sentence..

„Mamma zitte daar!“

18. augustus 2005

Lotte’s eerste zinnetje, uitgesproken in boosheid terwijl ze in bad zat – zonder CI op!!

August 2005

Another update on our CI-borg.
In july my wife went with the kids to The Netherlands, I joined a week later - someone had to work - and we spend two weeks with good friends in a house in the south of Holland. (OK, not Holland, The Netherlands...)

For Lotte this meant 3 to 4 weeks with only Dutch language around her. Most people don't know sign, so she was submerged in language.
She did great. Learning to say all the names and much more.
I think she made a mental change as well. I really clicked now. She sees the connection between words and actions, objects etc. It's great to watch.

One thing to mention.. she whispers. It's so great that when we start whispering to her, she lowers her voice as well. And of course, being the skeptic engineer I put my hand in front of my mouth just to make sure she wouldn't read my lips, but no problem, she understood it all. It's such a "miracle" and we're with her on the stage witnessing it. WOW.

A couple of days ago, I thought that whispering might be something unknown to deaf people. How is that. Obviously, when becoming deaf at later age, whispering is known, but how is that for HOH or deaf people? Whispering to someone with a HA seems pointless to me.
(From AllDeaf messageboard)

New map

Experience 2005-06-17

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 1½ 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.)

Mapping

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, 50minutes plane, 30minutes train, 15 minutes taxi, quite a long time for a three-year old.)

Just to have some idea of how the mapping-screen looks like.

Lotte has both processors mapped the same way...

First mapping was in November 2004 (Mapping # 17 and 18)

Half a year later, June 2005 (Mapping # 28 and 33)

Beautiful moment

Another beautiful moment is when she hears music and dances. She has a sister as a rolemodel, so copying that goes well.

But now she starts by herself.

Hearing alarms, recognising the telephone and so on.

She tries hard to repeat sounds and manages well at times.

She has a great speech therapists who - I think - has her as sort of a private project.

(First girl in Norway operated on both sides at the same time, plus she will have to learn Norwegian AND dutch AND continue with sign..

She enjoy's the CI. Put's it back when they fall off. At least when she notices. She's not at a stage where she misses sound.

She can go on with both CI's loose.
FYI, instead of a microphones behind the ears in combination with two bodyworn processor, we opted for 2 BTE's that she carries on her shoulders.

It's working really well.
Next mapping she will get the latest BTE's of Cochlear. She's allready got the latest electrode implanted but using the old type BTE.

Experience

Today we went to a concert where our son, 8 years, would be singing. Lotte got her own chair and enjoyed it. 

In the beginning a piece of Astero Piazzolla, beautifull South American music. (I can recommend this) and she was fully concentrated.

  

Indicating that there was a man playing, and a women. Not sure if she indicated who made the sound, I don't think so.
But these are the special moments, when you sit there with your deaf child and see her concentrated on listning. It's magic.