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Unread 05-08-2012, 04:58 AM   #1 (permalink)
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Hi Im new

My son who is 2 at the end of the month has recently been diagnosed with sensorineural hearing loss and we have been told he is a prime candidate for CI.
I just wanted to speak to other parents really and find out hoe they dealt with it and wondered if they saw a big improvement and how quickly.
As you can imagine I have go so many questions I dont know really where to begin!
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Unread 05-08-2012, 09:43 AM   #2 (permalink)
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Unread 05-08-2012, 09:54 AM   #3 (permalink)
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Welcome! We have a handful of parents here of children with CI's. Are you guys using sign with him? Regardless of whether or not you go the CI route, sign would be incredibly beneficial for him.

Maybe some other parents will chime in with their experience with the CI...
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Unread 05-08-2012, 10:04 AM   #4 (permalink)
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Quote:
Originally Posted by louandjack View Post
Hi Im new

My son who is 2 at the end of the month has recently been diagnosed with sensorineural hearing loss and we have been told he is a prime candidate for CI.
I just wanted to speak to other parents really and find out hoe they dealt with it and wondered if they saw a big improvement and how quickly.
As you can imagine I have go so many questions I dont know really where to begin!
Wow, diagnosed at almost 2! Was it a progressive loss or do you think he has not been hearing all along? How have you been communicating with each other thus far?

When you ask about big improvement, do you mean how quickly have our little ones picked up language? Or did their hearing levels improve? Or did their behavior improve over time? Or did hearing aids / CIs help?

Uh oh, I'm asking more questions than answering, so please go right ahead and fire those questions in! I've got a bilingual (ASL/English) 6 year old with profound hearing loss whose first language was ASL, she tried HAs for 6 months without any response to sound/benefit, she then acquired English rapidly after receiving the 1st of 2 CIs at nearly 2YO, and got the 2nd at nearly 3YO. I'm happy to elaborate on her development. Look forward to chatting with you here!
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Unread 05-09-2012, 03:23 AM   #5 (permalink)
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Well where do I begin...
He had his screening test as a new born as was OK. We beleive this has been something that has happened over the last 4-5 months as everyone that has ever been around him has said they do not believe this has been deaf for much longer then this. He said 'mum' and then his speech just did not approve. Its pretty much...'umma, umma, mumma' for everything.
After several visits to doctors we finally got to have an ABR test which showed is severity of hearing loss. (I will just add now that I'm from England but live in Cyprus so some of the way things are done may be differnt to where you are).
This was only diagnosed 2 weeks ago and we are booked in at the end of May for MRI and CT scan.
I always know what he wants and commnication between us is fine. If im completly honest I just thought that his lack of speech was due to lazyness.
Since this diagnosis I have been looking on you tube etc to try to learn some basic signs and help him further.
Im begining to stuggle with this as he just thinks its a game and we are dancing with our hands lol.....How do you get a 2 yr old to understand what signs mean?? and would it be best to just try one at a time until he understands what that means??
I'm trying so hard but as you can imagine and I feel like I (sorry should say we..me and my husband) have been put under a lot of pressure and i'm not sure im dealing with it very well?! One minute I want to burst into tears and the next I look at him and think that it doesnt make a difference. We also have a 6 month old and I am begining now to wonder how this is going to effect her.
I do think that CI's are the way to go with him and I am pleased to hear that your little girl has had such benifit from them...
so...once he has the implants done (from what I understand from my doctor) he is goig to have both done at the same time. Did your little girl pick up speech quite quickly then? and how often do you have to remove them? is it just near water etc and do you sign with her when she hasnt got them in?
We will know more after the MRI and CT scan as the doc said this may pick up as to why this has happend.
Ive still have about a 100 questions and some may sound silly but I think the bast people to ask about this kind of thing is not my doctor but people like you guys who have 1st hand experiance.
Thank you for listening and helping me :-) x
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Unread 05-09-2012, 08:28 PM   #6 (permalink)
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My daughter made that umma, mumma sound, or something like a mamamamamamama sound, but aside from that, her vocalizations were mostly very high-pitched squeals -- we thought she was part dolphin .

If you can get your hands on Signing Time videos, they are a fun way to introduce vocabulary, very playful, featuring little kids signing. It's ASL, though, so you may want to find BSL if most of your family is in the UK or something with the most common SL in Cyprus. We started in an immersion situation at about 14 months, and she was using sign extensively by the time she hit 2 years, no language frustration. I know a little guy from a Deaf family who refused to sign until his family took away his HAs and TV, a year later, he now signs like a pro, and loves it and the HAs are back in play. Sometimes you have to find ways to motivate them to move along the learning curve, provide some immersion .

Sounds like you are moving quickly on the medical front, which is really good. I'm convinced, based on many other little kids I've met, that there's a huge difference in how easy it is to acquire spoken language if implanted prior to 2-3 than later. I went in with really low expectations, and I think that works well: I figured that if she could hear any pleasant environmental sounds, we'd consider it a raving success, and anything else was a gift. But we were lucky: she reacted positively to voices the day she was activated: first surprised, then whirling around with delight at the sound of her dad calling her name, at my voice, and laughing at her own voice! Within a few weeks she was understanding and speaking her first ever words, and from that point she has never stopped talking . Her hearing level went from ~95-105 db to ~15 in a booth, and after getting the 2nd CI, although her hearing seemed the same in a booth, we found an enormous difference in the real world.

She prefers to wear her processors all her waking hours now, although back when she had only one she would tire of it in the late afternoon, and go without sometimes on weekends. We let her wear them kayaking, in the pool or bath if she insists (and she often does) -- because they are water resistant to 30 feet down for a half our of immersion (and what 6 YO stays underwater that far and that long ). But I don't let her wear them at the beach if she goes into the waves. I pop them off after story time at night or wait until she falls asleep, which is often her preference as she likes to chatter with me about her day or sing as she falls asleep in the dark.

We were worried initially, bc she had been language-deprived her entire first year -- she is adopted and was in an institutional environment where they didn't know she was deaf. But by the time she hit 5 years old she was at an age appropriate level both in sign and spoken language, and she's since surpassed the average for hearing kids her age in verbal testing, so we're confident that although taking a bilingual approach slowed her language development initially, it hasn't resulted in any long term delays and we think she has benefitted greatly from having both modalities available. We speak a bit more than sign at home because she's in an ASL immersion environment all day, but she shifts back and forth, and we follow suit.

We've never done traditional speech therapies or AVT, so she doesn't have the perfect diction we commonly see from early-implanted kids nowadays, but still, she doesn't sound too different from a lot of 6 year olds. It may partly be that she's at a school for the deaf all day where she has very few spoken language models and ASL is the primary method of instruction/ interaction, it may be that it's just typical of her age. She's very active in the Deaf community. And she participates in extracurricular activities in big groups of hearing kids and adults as comfortably as she engages with Deaf peers and adults.

One thing I found terribly helpful when making decisions was to meet many kids with CIs and families, and see the range of outcomes. It can really vary depending upon age at implantation and all sorts of things. I know children you'd never guess were deaf who wear cis. I've chatted with a child who got an implant as toddler (and his mom) and never put it on again after activation. I know a child who likes her CIs on for environmental sounds, but prefers to sign instead of speaking. I think the possibilities are amazing, but always keep in mind that each child is different. I'm also keenly aware that this technology is a very tenuous link to sound: a dead battery, broken cord, or fallen magnet away from no sound at all. An infection away from no sound. It's very important to remember that your child remains deaf, he doesn't change. He just may have a tool to use to access sound to varying degrees in specific circumstances sometimes.

I've found it all to be such an amazing adventure, mostly wonderful things, occasionally not so wonderful (surgery -- ugh! -- can't get past that as a serious downside). Wishing you many good things in your journey!
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Unread 05-11-2012, 04:30 AM   #7 (permalink)
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Thank you so much for answering some of my questions. I hope that my little man has the success your daughter has.
I have found some dvds and books on play.com for signing so will give them a go
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Unread 05-13-2012, 06:57 PM   #8 (permalink)
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Welcome to AllDeaf...
I see GrendelQ has answered some of your questions.. I'll do the same..

Quote:
Originally Posted by louandjack View Post
Well where do I begin...
He had his screening test as a new born as was OK. We beleive this has been something that has happened over the last 4-5 months as everyone that has ever been around him has said they do not believe this has been deaf for much longer then this. He said 'mum' and then his speech just did not approve. Its pretty much...'umma, umma, mumma' for everything.
After several visits to doctors we finally got to have an ABR test which showed is severity of hearing loss. (I will just add now that I'm from England but live in Cyprus so some of the way things are done may be differnt to where you are).
This was only diagnosed 2 weeks ago and we are booked in at the end of May for MRI and CT scan.
I always know what he wants and commnication between us is fine. If im completly honest I just thought that his lack of speech was due to lazyness.
Since this diagnosis I have been looking on you tube etc to try to learn some basic signs and help him further.
Im begining to stuggle with this as he just thinks its a game and we are dancing with our hands lol.....How do you get a 2 yr old to understand what signs mean?? and would it be best to just try one at a time until he understands what that means??
Be consistent and use it all the time. Every object he asks for. Show him a sign. Wants a cookie.. show him a sign. etc..
It doesn't take long before they get it... And in the beginning it's just loose signs. We used signs (our daughter was diagnosed around 1 year, operated at 2+) but I would not call it sign language...
Here's picture of my wife playing with her, using/showing sign...

Quote:
Originally Posted by louandjack View Post
I'm trying so hard but as you can imagine and I feel like I (sorry should say we..me and my husband) have been put under a lot of pressure and i'm not sure im dealing with it very well?! One minute I want to burst into tears and the next I look at him and think that it doesnt make a difference. We also have a 6 month old and I am begining now to wonder how this is going to effect her.
I do think that CI's are the way to go with him and I am pleased to hear that your little girl has had such benifit from them...
so...once he has the implants done (from what I understand from my doctor) he is goig to have both done at the same time.
Your feelings are understandable. It's parts of a grieving process. There's more to come.. BUT you can also look at the journey you are going to take. I can tell you it will be awesome overall.. (I think GrendelQ will agree)
Having 2 CI's will be of great help to her. Lotte got them in 1 operation so we can hardly compare with 1 CI.. GrendelQ did notice a difference. In a nutshell.. is more tiring to listen with one ear than with 2.

Quote:
Originally Posted by louandjack View Post
Did your little girl pick up speech quite quickly then? and how often do you have to remove them? is it just near water etc and do you sign with her when she hasnt got them in?
She did pick up speech quickly, helped by the signs she already knew. On her blog there are some video's which are dated. Have a look there.. (And make videos from now on.. You will enjoy them in the future. It's a great way to document what's happaning..)
Quite soon she dropped sign unless we didn't understand her..
So, start signing asap. It is not waisted time. It will be of great help in many situations..
Removing them.. Never, except when she goes to sleep.. We hardly use signs any more. Nor does she. She's good at reading lips... but she prefers to hear..

Quote:
Originally Posted by louandjack View Post
We will know more after the MRI and CT scan as the doc said this may pick up as to why this has happend.
Ive still have about a 100 questions and some may sound silly but I think the bast people to ask about this kind of thing is not my doctor but people like you guys who have 1st hand experiance.
Thank you for listening and helping me :-) x
Bring on the other 90 questions... and the new ones you just thought of..
Lotte Sofie - Born august 2002, hearing since november 2004

btw.. just had a little week in Cyprus,,, and we'll be back to see more of it..
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