Wednesday, 15 February 2012

Another milestone... for US this time.

As parents of a child with CI, you tend to be the expert on many subjects when talking to people around your child. In Norway, there is lots of support, but in order to get it, one needs to show the different offices what CI actually means. In meetings we have to emphasise on the traps.. how children can fool you.. making you think they understood.. (I often used the example that the correct answer to any question ending with "isn't that correct" is "Yes"...

CI is still a new technology. Just a couple of years ago.. OK, couple of decades, a result where the patient would be able to perceive sound was a success. Still, professionals will not guarantee that a telephone can be used by CI-operated people..
There are some similarities with hearing aids, but many more differences. In technology, ability to hear...  but like someone said... "Nowadays, CI is not about hearing. It is about language." 

Yesterday, we had a meeting with a new - private - organisation that is going to support Lotte and Lotts's school. We have been unsatisfied with the previous (state-owned) services and requested the new - private - services. Our request was granted..
And here's the milestone: We didn't have to be the experts.!!!
We noticed that the two specialists (2..!! not 1.. ) were the experts regarding children with CI... We could relax and see how they took charge. For the first time... A wonderful feeling. And a realisation how much effort / energy it has taken to do this every time.

The professionalism was wonderful. They made clear that they wanted to observe Lotte for most of the day. (Not just a couple of hours). That they want all the teachers involved with Lotte in the discussion afterwards. (not just 1 or none of them). They want the director of the school to be present, the special education teacher. Anyone directly involved with Lotte.. they want him/her there..
They noticed how all the requirements for good hearing (and reading lips) are in place in the classroom, but how important it is for the teachers to realise that they need to check if Lotte understands. If Lotte hears..
Having an audiologist AND a speech therapist observing Lotte and giving feedback was wonderful. Getting the feedback that "all is in place and Lotte is doing well" (as the conclusion was with the other service)  is easy.. but here we get an additional "remember that", and "make sure that", "this is how you can"... etc.
(And in a smaller session, with math problems containing sentences, the teachers got to see a wonderful example how it's the understanding of language that was the problem.. not the hearing..)

Knowing that Lotte is at the same level as other kids in her class is wonderful to hear... but that doesn't mean it cannot be better. If she had been in the top of the class had she been hearing, then we need to make sure that she gets all the support to be able to get there being deaf.. with CI. 
With the statistics of children growing up deaf being so bad - (internationally speaking) having a deaf child in mainstream school, and keeping up with others is wonderful to hear. It's what was not guaranteed at the time of implanting, but what was hoped for. Seeing those hopes being exceeded makes one humble.
But these experts showed us that it's OK to expect more, to demand more. And - even more important.. they are the experts that will guide us through that process. Us, the school, the teachers and other people around Lotte.

So, it was wonderful to be Lotte's mom and dad in that meeting. Not having to explain to the teachers and other professionals what to look for, how to handle something...

And how was Lotte doing..??
She's doing great. Socially she's doing well. She is good at standing up for herself. Very independent (but.. very good at hiding her problems as well.) 
E.g. The "experts" noticed how there was a discussion in the dressing-room before gym class about 2 tragedies that happened last summer. Lotte didn't participate in that "discussion" as there was too much noise. There was probably no possibility for her to understand what was being said when 10 girls all talk at the same time,... An important observation, showing the limits of what Lotte can understand. And how she is handling the situation.. In this case, she stood somewhere else, not trying to participate. It shows that Lotte has her own strategies for coping with her lack of hearing..
Some discussions are not worth the energy, so she will stay out of it. Sometimes she realises it's important to know what's happening, and she will ask for the teacher to repeat the message. Sometimes people come over to observe Lotte and Lotte will introduce her friends to them. 
Lotte is eager to know about things.. fortunately. She is eager to do her homework, and proud to show us the results of her work. 

The latest tests in Oslo show that she can hear close to normal hearing in silent surroundings. When noise is added her ability to hear drops.. (See testresults below)
Her ability to understand sentences has grown tremendously, in sync with her grown vocabulary.. Of course.. one needs words in order to understand context. Just like we do not hear every word of a sentence, and fill in the gaps with experience...

And with language so important... we are reconsidering letting her join her sister joining the theatre course..
We know the teacher there, and with the support we got yesterday, we feel confident that this would be a tremendous help for Lotte..

(OMG... 2 actors in the house..)

1 comment:

Miss Kat's Parents said...

When we switched to Miss Kat's new oral school, it was like a burden was lifted form our shoulder. We were finally surrounded by people who UNDERSTOOD what she needed! It was like walking into heaven :)

(Some) Milestones

  • 2013-08: Grade 6
  • 2012-08: Grade 5
  • 2011-08: Grade 4
  • 2011-03: BTE's on the ear
  • 2010-08: Grade 3
  • 2009-08: Grade 2
  • 2008-08: Mainstream School (6y. old)
  • 2006-10: All-hearing Kindergarten (4y. old)
  • 2004-11-22: CI activated (27 m. old)
  • 2004-10-04: Bi-lateral CI (26 m. old)
  • 2003-08: Deaf/HOH/CI Pre-school/"DEAF" Kindergarten (12m. old)
  • 2003-07: HA's fitted (11 m. old)
  • 2003-06: Diagnosed deaf. Start sign-language (10m. old)
  • 2002-11: Suspicion loss of hearing (4 m. old)
  • 2002-08: Born - A fierce LION
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