Friday, April 4, 2008

Christmas and a Brighter New Year





I don't actually remember much about that Christmas, it was all really just a blur.


I think as much as we must have celebrated Christmas with the family, if for nothing else than for those beautiful boys, I just don't really remember that much of it.



We were all just trying to stay a float at that point I think...it had been such an amazing roller coaster - almost losing A, him surviving but then discovering his hearing loss, then the hope of an implant, oh my goodness no wonder we were just emotionally wrung inside out!


At this point I guess we were in much the same position as most hearing parents who find out their child has a hearing loss. Initially we thought because A was so deaf he would not benefit from hearing aids and would need to learn Australian Sign Language or Auslan.


The thing is that for most of us, if you have never had any exposure to someone who is deaf, then really what do you know about deafness? If you were like us, not a whole hell of a lot.


So during the very difficult times we were guided by the professionals around us and we listened to what they told us and made decisions based on that.


For many people who are not connected to deafness or hearing loss, they are completely ignorant of the divide between members of the Deaf Community and hearing parents of deaf children when it comes to cochlear implants and young children and babies.


To be fair it is not all members of the Deaf Community that feel this way, there are some very warm, very welcoming members who are genuinely interested in how are kids are going with the cochlear implants and how they do at school etc. However it has to be said there are some members who are down right abusive to parents who decide to implant their children. Only in recent weeks, a friend and fellow blogger, was referred to as a child abuser because her son had been implanted when he was too young to have a choice! This is not an isolated case, sadly many parents, myself included have been labelled as child abusers for having our children implanted with a cochlear implant at such a young age.


The reasons for the oppposition are not always the same.


For some the opposition stems more from the pain and trauma of their own experiences as a young deaf child. For the past generation, there were children who were given hearing aids that really provided little or no benefit. They did not have access to the new technology hearing aids we see today or to cochlear implants. So these kids had technology that simply didn't give them enough hearing for them to be able to hear the sounds of speech, yet they were expected to hear and learn to speak. Those that had picked up some sign language, were on occasions forced to sit on their hands so that they would not use sign language. Clearly this kind of treatment of young children, where sign language was the only useable form of language for them, was barbaric and cruel. Many adults who went through these kinds of experiences are very bitter and angry about being forced to try to speak (especially if they later discovered sign language and an ability to communicate!) Some equally are resentful of their parents for forcing them to endure such treatment in the name of "oralism".




Unfortunately what they do not understand is that the experiences of our children with the newer technology is not the experience that they had. However for some no amount of blogging or trying to convince them will change their minds, they are just totally closed to the idea that being able to hear and speak is both possible and something that the children themselves want as well. I suspect that perhaps the pain of their own experiences prevents them from seeing any other alternative.





Another argument is the notion of the use of sign language. Many advocates of the Deaf Community believe all deaf children should learn to sign. In fact some will go so far as to say that they are born of Deaf Culture, and such sign language is their native language and that they should learn it in order to be with their own kind. There have been many online discussions about this notion of culture. For most people culture is defined by family, where you live, life experiences etc, so that the notion of being born into a culture does not fit with this ideal of what we believe culture to be.



In A's case he was born hearing, and heard for 2 years, then lost his hearing, so what culture does that make him then? A foot in both camps?



There is also an increasing push now for all deaf children to learn sign language, well at least that is what many members of the Deaf Community would like to see.

When A was diagnosed and we were waiting for his implant surgery, we were not that aware of all this controversy. We took our cues from the professionals we were working with. At that point in time the studies that were about concerning children with a hearing loss and their language development and levels of attainment, were consistently showing that Auditory Verbal Therapy (AVT) was producing the best outcomes for young children. Children with the benefit of the kind of hearing cochlear implants were giving them, were clearly benefitting from AVT.

In those months whilst we waited for A's surgery, we were hopeful it would work and he would hear again, but the doubts still swam around in my head. What if it doesn't work, then we will all learn to sign?

Now here's the thing - it isn't like I have anything against sign language because I don't. In the 2001 census data the number of Auslan users was around 6,500 out of a population of nearly 19 million! So clearly the numbers of people that can communicate with fellow auslan users isn't that high.


The other thing for us was that we knew spoken English, we didn't know Auslan. Whilst many proponents of Auslan suggest that we should have learnt Auslan and taught A to both speak and sign, this was near impossible under the circumstances. We had two boys under 3 years old, we were learning about deafness and what it meant and some days we were just trying to put one foot in front of the other. In essence we would have needed to learn a foreign language to us, at a fast enough rate to keep ahead of A to ensure his full language development. It wasn't that we were not willing to do whatever it took for A, because we were, but at that point we believed spoken language was the way forward for A.

It is my firm belief that parents must make what they believe to be the best choice for their child at that time. I personally know of parents whose children had more hearing than A who chose to educate their child using only Auslan. I didn't understand their decision then and I still don't, but I respect their right to make what they feel is the best decision in the best interests of their child.

So for us it a cochlear implant and AVT.


















In that month or so between setting the date for surgery and actually getting to that point, we diligently put in A's hearing aids every day. Quite clearly he could two tenths of bugger all. He never responded to sound at all, but bless his little heart, let us put these chunks of useless plastic in his ears every day.




During that time we had our first visit to the Cora Barclay Centre - WOW, now there was a light at the end of our tunnel. I can remember one of the therapists telling me if all went according to plan we could expect A to use his hearing from his implant to learn to listen and speak. Could it really be possible, did I dare to dream it might be true????

One day while visiting the Centre we met another family of a child not much older than A who already had a cochlear implant. Well there it was, as plain as the nose on my face, this little boy in front of me, turning to his mother calling his name, answering her questions, his speech quite easy to understand...oh my goodness, that light in the distance was shining a little brighter.....


Of course we had to go through the routine hearing aid trial which meant many hearing tests along the way. Same deal for A, hold the block to your ear, drop it in when you hear something...uh-ha, no problems....well except for the fact I can't hear the instructions and I can't hear the damn noise to know when to drop the bloody block into the damn bucket! It sure was a frustrating time, most of all for A, he was only 2 and 1/2 years old with the patience to match!


Before we knew it surgery day had rolled around, we were basket cases by then. Were we doing the right thing, how would he go with surgery????

Funny thing happened just before that though. I told you before about the most amazing, wonderful man who was our ENT and the surgeon that did A's cochlear implant surgery. Well he believes that parents of kids with a hearing loss have enough to deal with, without heaps of bills, so in essence whatever Medicare or private health rebate to parents paid, is what he charged. Yep not a cent more! Truly this man (though now retired) is an angel that walks amongst us.

Well clearly one of the more unscrupulous, money grabbing private hospitals didn't feel that this doctor was making enough surplus money for the hospitals ever gorging coffers. So in a nutshell they removed his license to operate in their hospital and gave it to an orthopedic surgeon instead - heaven help those orth patients, they would have been paying big bickies then!


So by the time A's surgery had come round we were going to a different hospital, one his surgeon hadn't done an implant surgery at. True to form though, our doctor had been in explaining things to the nurses that would assist him, showing them videos of the surgery, talking them through the whole procedure.

We didn't really have a lot of time to worry about the new hospital setting, A was having a cochlear implant that was all that mattered! Plus I respected and trusted his surgeon, so I knew he wouldn't let the change of hospital have any impact on A.


Well we felt like royalty when we arrived, the first paediatric cochear implant patient at the hospital. None less than the Director of Nursing herself met us as we entered the hospital entrance, with a bright colourful helium balloon in hand. She personally escorted us to A's room and introduced us to members of the staff. It was all very sweet, very welcoming and certainly put us at ease.

Before long A was ready to go and was called into surgery.....that wonderful surgeon, yes he let us walk all the way down carrying A and holding him until the anaesthetist had put him under. Next came the longest four and a half hours of our lives. "Go for a walk, grab a coffee, some lunch or something"...oh yeah right, while our baby is in there with you???? We made ourselves go out and walk into the city centre....not that either of us ate anything, that rolled up tight ball in our stomachs went half way up our throats, there was no food going down there - a coffee at a squeeze and that was it! We did however buy out almost all the Thomas the Tank Engine merchandise in the city shops because they were As favourites and nothing was too much for him then!





Back at the hospital the surgeon emerged, wearing a big smile that put us instantly at ease.."everything is fine, he is fine, the surgery went really well, he will be up in a short while....."



Well in came this dear little man with his head wrapped up in a bandage like a wee turban. There is something about children in hospital when they are wheeled back to their rooms on a full size gurney. They look so small, so vulnerable, so helpless. For the rest of that day he slept on and off, waking with a bit of a grizzle and a moan, and then after some liquid panadol for the pain, back to sleep he went.


We had decided prior to that I would go home and collect B from whoever's place he was that day (B's story is a whole nother blog!) while hubby would stay with A. So at the end of a long day, I kissed my sleeping angel good bye and gave hubby a kiss and a hug and headed home. We were both so exhausted, not so much because of anything we had done but because of the stress of worrying, of wondering, of waiting.....

I don't know why it is, but when you have important things to do like go see your little guy in hospital again the next day, suddenly all these unforseen things appear that just have to be done....like where were they last week or the week before? Why do I have to do them today, can't they wait a week? Ah no, it appeared not! So B and I ran around doing all these stupid errands before making it back to the hospital around mid-morning.

Now remember I had left young grumpy bum dozing on and off and not really being that happy with the world at large the night before. I approached his hospital ward with trepidation....


Before he went into hospital we had made sure we had some button up shirts so they wouldn't need to go over his head - it was summer, it was boys wear, they were loud and colourful (quite appropriate in the future it would seem!).

So I am approaching the ward, trying not to sprint the last 100 metres down the ward to collect that angel into my arms and smother him with kisses. Well I look up to see this multi-coloured 2 foot nothing tornado barrelling down the hallway at a million miles an hour throwing bodies behind him (well ok not throwing bodies but the rest was true)! He tore down the corridor towards me, his face a beaming smile, eager to see me and of course to see his little brother. The change in him from the night before took my breath away!

Oh it is so true what they say, we parents suffer the anxiety, the sleep deprivation, the worry and for what? So we may look like death warmed up to those that see us, while the cause of our worries, our dear sweet child, no he is as fresh as a daisy and raring to go. Not that I minded of course, it was wonderful to see him so happy and so unaffected by his surgery.

Mind you his hospital stay was not without its moments, more on that in the next blog....so you will have to keep checking into find out more....











2 comments:

Cate said...

Hi Naomi

Looks like you have had a busy start to the year :)

Hope you don't mind, I just wanted to comment on a few things?

"For the past generation, there were children who were given hearing aids that really provided little or no benefit... Unfortunately what they do not understand is that the experiences of our children with the newer technology is not the experience that they had."

That is true - but at the same time, you know, it doesn't take much of a hearing loss to interfere with hearing or speaking. I have many friends with only a moderate hearing loss, who need interpreters in class, and many who cannot lip read and understand spoken speech, even with that level of hearing. Hearing levels alone is not a good determiner of ability to perceive speech. One of my daughters has a moderate loss, and is for all intents and purposes hearing ... the other one has a moderate to severe loss, and cannot perceive speech even with her hearing aids. I am looking into other issues, like auditory processing disorders, and the audiologist said that basically once there is a hearing loss, there is automatically processing disorders, and it can be hard to know what more to do than a hearing aid.

The other thing is, even when CIs and hearing aids are working well, they are still limited in group and class situations. My husband and another friend of ours were raised orally (as in fact most Deaf in Australia have been for the past 50 years), have perfect speech, can communicate like hearing people in a one on one situation (my husband less-so, but still is assumed to be hearing), and they both have no chance in a group situation. Neither do my friends with CIs. Neither can my moderately deaf and moderate-severely deaf children...Nor my oral deaf friends with hearing aids ... they simply cannot hear in a group or noisy environment. And these guys HAVE the latest technology.

"For most people culture is defined by family, where you live, life experiences etc, so that the notion of being born into a culture does not fit with this ideal of what we believe culture to be."

The anthropologist in me wanted to try to explain this ... culture is largely a mental construct that we all have that unifies us with a group. Language, values and habits that are common are used to identify with another person, and culture is the label we put on it. Because people with a hearing loss, whether they use sign or not, tend to need visual cues (lights flashing), have the same struggles with hearing events, like Christmas, relate to similar experiences, this is causes them to identify with each other. Add the sign language, and you start to get a really cohesive group.

"In A's case he was born hearing, and heard for 2 years, then lost his hearing, so what culture does that make him then? A foot in both camps?"

Yeah :) it does really. And that's cool, because that is the place that 90% of Deaf people find themselves in ... I mean, most have hearing families, communicate in spoken (if broken) English at home, many are mainstreamed. But it is still great to have a "home" place (by which I mean the Deaf community), where everyone is the same, and communication is not an effort all the time ... especially in groups.

"the studies ...were consistently showing that Auditory Verbal Therapy (AVT) was producing the best outcomes for young children."

Do you mean of speech? Because, yes, of course, a program that focuses on developing speech will do it much better than one that does not :) If you are talking language acquisition/learning (and they are different), and educational outcomes, Sweden's bilingual approach is undoubtedly the most predictably positive.

"Children with the benefit of the kind of hearing cochlear implants were giving them, were clearly benefitting from AVT."

Absolutely - no doubt about it, the CI is an extremely powerful hearing aid that, with training, *can* help kids learn to use their residual hearing and develop speech - especially as in the case of your son, who heard speech for a couple of years.

"In the 2001 census data the number of Auslan users was around 6,500 out of a population of nearly 19 million! So clearly the numbers of people that can communicate with fellow auslan users isn't that high."

Those census figures are not accurate, because they asked the wrong question. They asked "what language do you use at home" ... and most Deaf people living with their hearing families speak English at home. There are people in the community working with the ABS to change the question to get a more accurate picture.

In New Zealand, for example, in a country of 3 million, 21,000 people responded that they use New Zealand Sign Language (7,000 of whom were Deaf).

Now, that would extrapolate out to 140,000 in Australia, and I don't think our population of sign users is that high, but it is definitely more than 6,000. Minimum guestimates from within the community are usually about the 20,000 signing Deaf, plus families and friends.

"The other thing for us was that we knew spoken English, we didn't know Auslan...some days we were just trying to put one foot in front of the other. In essence we would have needed to learn a foreign language to us, at a fast enough rate to keep ahead of A to ensure his full language development."

Yes, its a lot to ask of parents who are not only dealing with young children, but then one's with a diagnosis like deafness.

That is why Deaf Children Australia has Deaf mentors for Deaf kids - people who can come out and be friends with both the children and the parents, introduce them all to sign language, or at least to Deaf adults who can be a positive role model for the young children.

As you can tell, I am one of those who likes the use of sign language... but I am not a radical. I am not one who believes that children should not have implants, or speech therapy, or any of those things ... my husband and children both want to speak clearly, and like learning to read lips, so they do. I like the concept of ALL our kids with hearing losses (well, all kids really :) ) knowing Auslan because it adds so much to their lives. They are able to interact with hearing AND deaf, they are able to go between communities. And if, like my husband, and I expect like my moderate-severely deaf child, they struggle in group (and that unfortunately includes extended family) situations, they have a group of people where they can go to enjoy group activities, socialise with a lot of people at the same time, like in sports teams or whatever, and can easily find friends there too.

When you have a chance to draw breath, I hope you have a chance to learn Auslan as WELL as have your son in AVT. I have never heard anyone express their regret over learning Auslan.

Naomi said...

Cate thanks for your thoughtful and articulate post, it was very clear from reading what you wrote that you are not a radical : - )

Maybe it wasn't that clear from that one post, as it is part of an going series of blogs I plan to write, but A is now almost 16 years old and was implanted in 1994.

You are right about group situations being more difficult than one on ones and that different individuals speech perception is very different regardless of level of loss or the technology that they use.

It interesting hearing your comments with regards to culture and the cohesive group that forms where communication is easier.A hasn't learned Auslan growing up, though we have discussed it with him should he wish to. At this point in time, the interest just isn't there. Interestingly where there is the opportunity to network with other kids who may have the same experiences with cochlear implants, hearing loss etc, quite honestly he is not interested at all "mum I'd rather spend time hanging out with my mates".

At this point he is right into school friends, soccer team mates and starting learning Italian mid year.

Never say never, perhaps one day he will decide to learn Auslan but for now at least he doesn't want to.

Increasingly I am hearing more arguments that learning Auslan (ie bilingualism) doesn't impact on spoken language development or written English development. I find that quite interesting since it was my understanding that it is not possible to do a direct translation between ASL and written English but rather paraphrasing is used, is that correct?

I'm a bit of a "science nerd" at heart and like to see the published results of studies so I can really get a handle on things. Do you have some links I can go to, so I can check out the studies you know of that show the outcomes of bilingualism? I'd really like to be able to have a read of them.

A no longer has any classroom support or other services, apart from audiology for implant mapping. I don't want to sound like I'm nitpicking : - ) but it is not possible to have a child learn Auslan and be in AVT. They can learn Auslan and learn to use their hearing to develop spoken language, but it is not AVT in that instance. AVT as a method and a philosophy in which the child only uses their hearing to learn spoken language, so the addition of sign would mean it is no longer using the AVT philosophy. As I say that is not to say that parents can't use similar techniques to work on hearing and speech, just that strictly speaking that is not AVT.

Thanks for posting here and for your thoughtful and informative input.