Thursday, 18 January 2007

Hard-of-hearing or Language-deprived ?

A thought that crossed my mind - actually, it didn't cross, it got caught, is that the way we look at children with CI might be wrong. Wrong in the sense of what kind of support we give compared to the support they need.

Historically, CI's were the next step from HA's. And with that, CI's are many times still regarded as such. A hearing aid. Working in a different way, but still, an aid to hear.
People with CI are therefore still regarded as Hard-of-hearing since "obviously" they use an aid to hear.

This might very well be true in many cases, but a new generation CI-users is emerging. Children that are implanted (often on two sides) before the age of three that do not conciously grow up deaf. CI is giving them sound that enables them to speak and understand language.
The "problem" these children have is not lack of hearing. They hear very soft sounds, they understand and reply with whisper. In that sence they are not hearing impaired. (Keep in mind... I have Lotte in mind. I know results can be different.)

They ARE however behind in language and therefore cognitive thinking. The older the child, (1, 2, 3 years old) the more this is true. This is where the supportsystem should focus! On gaining on the lost language. Because language defines us.

Obviously, the situation depends from child to child. 1 CI will make undrestanding in noisy environment much more difficult, and with that, there is a hearing impairement. But think of children that do well with bi-lateral CI. These children need language, speech and above all, comprehension.

Lotte is now in an all-hearing kindergarten, and with the language she has, she is behind compared to other 4-year olds. (We are not worried about that. She only has two years of sound, so obviously she's behind - and catching up nicely...) She is not able to master communication with children that otherwise would be her "equal" because the others do not understand her. The result is that she will look for other children that either ar younger but at her speech level, or children that are more fysical that communicative. (e.g. boys, playing outside... where screaming and actions goes a long way.)
Focus should be on making sure Lotte is understand. (And this is being done in her kindergarden..)

It seems that for the children, focus is actually on communication and speech.
But what about the parents...
In Norway, the parents are offered sign-laguage classes free of charge. BUT, the focus is only on that. Sign. WE, Lotte's parents, do not have a need for that. Lotte does not use it any more. We need information in speech and language development. How does it work. What are the milestones... What to look for, how to play, what to do, what NOT to do.
BUT since children with CI are still looked at through "DEAF" glasses instead of "Language deprived" glasses, that support is not available. Only "DEAF" therefore "Sign" support...

How is that elsewhere..??
Is the support sysem different.
Like, AV-therapy. It's not available here in Norway, but I have a feeling that there the focus is on educating the parent.... Correction, it's not available where we live..
Anyway... have to do some more research on it.


Mom to Toes said...

Cloggy, this is an amazing post. We share your same frustrations. I would love to cut and paste and post it on Erin's blog if that is OK with you. Giving you credit, of course. ;)

Yes, AV Therapy in the early years does focus on educating the parents. My husband and I trade off taking Erin to her speech therapy appointments, because they are mainly training sessions for us.

Yet, this is still just a weekly event. We take what we have learned there and adapt it to our daily lives. But it doesn't feel like enough sometimes.

We are also often frustrated to find that Erin is missing out in some areas because there just aren't enough options available to us.

My hope is that in time, all of these various methods of working with CI children will be blended into a consistent and functional curriculum.

Cloggy said...

Sure feel free to post it there as well. Remember, this is just brainstorming.....

Laurie said...

Another interesting post. The Webster dictionary will have to come up with a new definition for the new CI-generation one of these days.

I've had a severe/profound loss ALL of my life. My parents focused on an oral program for me and I did not learn to sign. Have you tried the John Tracy Clinic? They have a correspondence program to educate and support parents and families of deaf children.

I'd like to put a link to Lotte's blog on my website. May I have your permission?

Good luck with Lotte. Just take one day at a time.

Laurie in TN

Cloggy said...

I'd be honoured to have Lotte's blog on your website

Regarding the John Tracy Clinic.. I'll do some browsing there.
But in a way we are very well taken care off. I do a lot of research myself, my wife is doing her masters in special education, and we have friends that are specialists in the hoh/deaf/ci field..

But thanks for that piece of info. I hope others that will read the comment will also go to the John Tracy Clinic and get info there.

Laurie said...

Thanks! I'm glad you have a great support system. Lotte sounds like she is progressing very well!

Laurie in TN

Pål said...

Hi Cloggy, just found your great blog, following links from other CI-blogs. My daughter is 16 months old and has bilateral CIs - they were activated in january this year (she has been hearing 5 months now and everything is way past expectations).
The problems you describe, sound all too familiar from a danish perspective. We've had to fight to get our daughter in an all hearing day nursery, have had to fight to get AVT-guidance etc etc.
We are also constantly met with the position that our daughter is deaf allthough she has never been introduced to sign language and is 95% op to speed with her hearing friends in day nursery.

(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
--- Google Analytics