Cloggy2000's Weblog

Just some brainstorming….

cloggy2000 — Sat, 12 Sep 2009 11:59:00 +0000

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 – gramaticvally. (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..

Bilateral CI..

cloggy2000 — Fri, 11 Sep 2009 14:12:00 +0000

Lots of information can be found here, at the Binaural Hearing and Speech Laboratory

May articles can be found, that can be used to argue for bi-lateral CI, if needed..

TAg For En SE i

cloggy2000 — Wed, 02 Sep 2009 11:19:00 +0000

(For the non-Norwegians…. It should be “Takk for en CI”… “Thank you for a CI”.)

Lotte made a drawing for the two persons she knows from the Oslo Hospital, that

do the technical- & speech- checking..

Her right processor was damaged (fell to the floor..), so Medisan (provider for the Freedom system), sent a new one.. For Lotte, anything regarding CI comes from Tove and Ole. The two of them will get the credits..

The drawing will be in the box being returned to Medisan….. Perhaps it will make it to the hospital, but I hope the people from Medisan will find a nice place for it….

Here it says

“Til Ole og Tove”

“TAg For E” & “n SE i”

Eg har lagtteteg teinn

og TAG for en Sei

Se på en lagentent teinn te teg

Deaf shame…

cloggy2000 — Wed, 02 Sep 2009 08:41:00 +0000

Found an interesting post in this blog….

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

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

Lotte has no answer for them…..

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

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

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

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

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

==========================

btw…. followup on that site…

Hearing… with the shoulders, and the ears…

cloggy2000 — Tue, 25 Aug 2009 07:12:00 +0000

Lotte is doing great.
As previously, a vacation with 1 language is doing her good. Not that there are problems with her speaking Norwegian and Dutch when at school and home (besides… she loves to speak English as well..) but having people around her – especially children – that only speak Dutch helps her by focusing on 1 language.
The vacation went well. She understands much more, which gives her more security regarding upcoming events. Life makes sense when it’s 7 days and then the plane, 10 days and then to Italy, 8 days and then a birthday.
The pictures here show Lotte in “Openluchtmuseum Arnhem”, the outdoor museum in Arnhem. Lots of historical Dutch houses, trams, cars etc. A peek view into the past. One of the exhibitions was about the history of Holland and the “Molukken” in the second part of the 20th century. (1950′s sounds closer by … btw… A sad, badly handled piece of Dutch history.)

Lotte wanted to listen to some information, and as you can see, she hears with the shoulders.
It was nice to see that for her it was an automatic, natural way to do it. With the phone we tend to put the BTE on the ear, and she can speak freely. Here, she went her own way, and put the speaker straight at the shoulders…

Even though we can see that Lotte is doing well with the BTE’s on the shoulders, on her back, we were wondering what the real difference is between the that position and on the ears.
The Norwegian support group has alway been pushing for it, like anywhere else in the world, and supplied us with baby-worn stuff.

Clips to keep the BTE on the clothes. Worthless in our opinion. Far too bulky. Not an option to start using that. The pouches we are using now, with their different ways of attaching (clips or safety-pin) is working far too well.

In order to put the BTE on the ear, a clip (snugfit) is provided that holds the processor, and of which the end can be bent around the bottom of the ear. Since we have no desire to start using earplugs to secure the BTE, this seemed like a good thing…….

The batteries can be on the back due to a special cable… So, the weight of the battery is removed from the ears… but there is still a cable down the back… or front, wherever preferred…. (armpit.. Hmm..) .

We were still not convinced, or motivated…. so we thought about finding someone to experiment for us… To see how much difference there was..
The idea was that we would send long coils (We understand they are very expensive..) and two little bags to a Bi-lateral Freedom CI -user that would be willing to try it out and give us feedback about the difference between the BTE on the ears and on the shoulders…
Via some people from messageboards we came across Laurie Pullins. (See her blog entry here..) She was very willing to give it a try, so we send her Lottes old “bags” (we have plenty of them thanks to Kylie) and some used coils that we keep as spare.

This was before the holidays, and the result was in when we came back..

Laurie indicated that there was a difference. Here’s part of her experience..

===============================

…. …..I did notice that when I put my CI’s on my shoulders with the little pouches you gave me, that my voice sounded distant and “nasal” like I was in a swimming pool. This did not change after a few days. But, the brain is amazing and would probably have adjusted just fine over time if I kept them that way.

When I was Lotte’s age, I wore a body aid and my microphones were on my chest. I never knew anything different until I went to the BTE’s (Behind the Ear) in my 20′s. And I adjusted.
Also, I am an adult and the distance from my ears to my shoulders and the pouches between my shoulders is probably greater than a child like Lotte. Her CI’s are probably closer to her ears from her shoulders than mine were.
Because I use the phone and have to change my batteries regularly, it was not easy having my CI’s on my shoulders. I had to hang the CI on my ear so I could use the phone and take them off (out of the pouches) to change the batteries. You probably do all that for your daughter.
As for “surround sound” with the bilaterals, no difference.

That is all I can think of. If I think of anything else, I will let you know. ………

===============================

Needless to say, this was great information, and we decided that we would start testing the BTE on the ear.
Our main worry is if the BTE stays on. We never needed to worry about losing it.
So, last weekend we did the test.

Converted the BTE+AccuLong Coil to Earhook+BTE+Short Coil+Accu. Required the magnets to be moved between the coils.. but OK…
Then for putting it on the ears.
We realised…. Lotte doesn’t have an indentation on the bottom of the ear. No earlobe…. Whatever it’s called, the hook has nothing to hook around. (Take a peek..)
Lotte’s mom doesn’t have it either. I do, and Lotte’s brother and sister both do… without ever using it..

Still…. it was “hanging in there”… and Lotte didn’t mind the change.
It was pretty obvious that having the Accu’s on the back is no real improvement compared to the BTE’s on the back.
So….. the complete BTE on the ear. Again, same problem, but the weight actually helps pinning it down. So…. forward with that contraption..
It was great to see her use it immediately… Picking up a phone at will (without us needing to adjust the BTE from the back to the ear), and when asked if the sound was different, she acknowledged that. However…. I’m not sure if she understood the question…. I think it’s one of the moments that she guesses the right answer….
All well, until the next morning…. She came to us, crying, upset, because her “ear” was broken.
Turned out it dropped from her ear, and the connection between the Battery/Accu-holder and the processor was damaged. (A bayonet-type connection where three lips hook into the other side. 2 lips were broken off)
Some tape keeping the two pieces together fixed the problem until the new processor arrives…

So…. we went back to the BTE on the shoulder… We do keep it up much higher, and closer to the neck instead of low on the back. This is a bit more awkward when carrying the schoolbag, but who knows, perhaps it makes a difference.

What we did find out is that any reduction in sound Lotte is perceiving does not weigh up to the ease of using the BTE on the shoulders. Not worrying about losing it, getting sand in it etc.
We also found out that for Lotte it makes no difference.
Another thing is – which we realised when we put the BTE’s on the front instead on the back, is that when people see Lotte, they see her first, and then they will see a BTE or a coil. Not the other way around.
With girls, a BTE is easily covered by long hair, but with boys, a BTE on the ears is very obvious… Not a reason to remove it from the ears, but when we were experimenting, this was one of the realisations..

So, we’re requesting a new processor, and continue with the BTE’s on the shoulders. A bit more conscious about where on the shoulders, but still…. on the shoulders..

Very nice little film….

cloggy2000 — Mon, 24 Aug 2009 09:30:00 +0000

Hardly anything to do with Lotte, but wanted to share it with you all….

One on one…

cloggy2000 — Wed, 01 Jul 2009 18:25:00 +0000

Today, Lotte has been with a friend from school almost the entire day.. Away from our house..

It went well. She’s been with friends before, but never this long. At the end of the day she was tired…

And that’s no surprise.

Think of it.. In a situation with many children, it is easy for her to camouflage that she doesn’t understand. She watches the other children and whatever she hasn’t understood will be filled in by the action of other children.

Playing 1 on 1 – like today – changes that completely. Any communication from her friend is towards her. So, Lotte will have to be more alert. Will have to focus if she doesn’t want to ask too often to have a question repeated.

Apparently, it went very well. They played for a very long time, and at the end of the day they were still friends.

Lotte’ s mum called the girl’s house, and got the girl on the phone.

On my wife’s question as to how it was going, the girl said “It is going very well. But we did fight a bit just now, but that is over now..”

Lovely !!!

Rhyming

cloggy2000 — Wed, 01 Jul 2009 00:20:00 +0000

Christmas time, with very, very good friends visiting us.. Family realy…

Lotte showing her skills.

( And proud father showing Lotte showing her skills )

New way..

cloggy2000 — Mon, 29 Jun 2009 21:31:00 +0000

With the pouches on the shoulders, it can be awkward when the straps are thin.

The red elastic band with two clips on the end is actually used to clip winter-gloves on the manchettes of coats… But this is much more practical.

Here I used the safety-pin to put it on the elastic band and the straps… but since then I sewed pouches all the way at the end.. no more safetypins..

Swimming….

cloggy2000 — Fri, 26 Jun 2009 20:56:00 +0000

…. that has been the thing this week.

School is finished, and the “After-school organisation” (No idea how I had to translate the Norwegianterm “SFO” ) send the children that enlisted to a 2 hour per day swimming course during the week. For free, payed by a fund that wants to make sure more kids know how to swim. A wonderful initiative

Having Lotte in a structured environment in order to teach her to swim has not been succesfull, up to now. (See this post.)

She didn’t want to have the CI on. We have used the CI while swimming by putting it in a sealed plastic bag (which worked well..) but Lotte made clear that she did not want it. After some asking she indicated there was too much noise. And I can imagine that in an inside swimmin

g-pool the sound must be horrible. I dislike it with two ears, with 1 ear (we only gave her 1 ear under the swimming cap) it must be awful..

So.. No CI.

After the first day she said something like “It was nice. Not going back..“.. And that even with her being proud to be on Norwegian (local) TV in the pool..

But we told her she had to. The following day she was in tears…. but she did go, and it went fine.

The promise of a bikini (A “Hello Kitty” bikini.. ) at the end of the week might have had something to do with it, but even so…. she did go.

And still enjoyed it. Mind you, 2 hours of swimming every day is quite a task for a 7-year old.. (OK.. quarter to 7)

The end result…. She did all 5 days, all 10 hours and got a bikini. (Picture will come later.. sorry)

No big information when her mom asked how it was… Just an OK…

That is, until dinner. The she suddenly stopped eating. Crossed her arms and said “I can swim.! I can swim to the other side without the floaters on my arm..“

Wonderful…. !!!! Now we still have to confirm this.. but knowing Lotte…..

Update:

(btw.. It was Lotte’s idea to wear the swimming-cap and inflatable tube… we had nothing to do with that. )