Tuesday, April 22, 2008

Point of Perspective

This week provided me with an opportunity to see just how we have come in the 12 years since A lost his hearing after battling meningitis as a 2 year old. Perhaps more accurately how far I personally have come.

As part of trying to help parents, our parent group is reaching out to parents at that time of diagnosis to support them in a way that can only be done by another parent who has been there.

The implementation of screening of the hearing of newborn babies is a great thing. The sooner their hearing loss is identified, the sooner decisions can be made with regard to hearing aids and method or methods of communication to be used with the child. However it seems to me that is also very much a double edged sword. How difficult is it to be the mother of a newborn baby being so unsure of yourself and what to do and questioning whether in fact you can even do it right? Add to this then the news that your child has a hearing loss! In the majority of cases children born with a hearing loss are in fact the children born of hearing parents, parents who by and large have had no exposure to deafness before the birth of their own child.

This week saw me call a parent to see how she was going. Her child was diagnosed as a newborn and she had struggled with that diagnosis. In what seems to be the true characteristic of motherhood she had agonised over what she had done differently in this pregnancy compared to her first, what had she done differently this time "to make her child deaf". Despite the fact it had been some months since that diagnosis, her voice cracked and I could feel her silent tears as she tried to hold it together for my benefit during our call. I tried to reassure that she had done nothing wrong, these things just happen.

As someone who is so much further down this road, it was a real point of perspective to be able to hear her pain and whilst really empathising with her, equally not be swamped by that wave emotion but rather be that shoulder for her to unburden on. I shared with her that it was ok for her to grieve. That is not in anyway to suggest that her child was less than perfect because of his deafness but rather grieve for her plans for her future, she hadn't planned to parent a deaf child. As a hearing person with no prior knowledge of deafness, she sees her son's loss of hearing as a loss and so feels a great sadness at his loss. It wasn't part of her plans for her future or his that she would find herself answering questions from other kids in the playground about hearing aids and what they were for. This notion of grief and the need to allow yourself to feel it, is touched on in that wonderful piece "Welcome to Holland".

Perhaps what struck me most were her assertions that she just wasn't a strong person. I tried to share with her that most of us weren't until faced with raising a child with a hearing loss. It is not that we suddenly had our hearts turned to stone in a sea of bitterness that made us go out into the world strong bitches that would fight the world as soon as look at it. Quite the opposite in fact!

We started this journey but one step at a time. We looked at each decision we had to make by gathering as much information as we could and making our best shot at an informed decision for our kids. Not all of them were going to be right and we might change our minds along the way but none the less they were made with love for our beautiful kids. Around us we found the most amazing support - from caring professionals, from other parents of deaf kids, from our partners, our families, our friends. It didn't make that grief any less, it just helped us gain some perspective.

With each decision we made, or hurdled we climbed over, we grew from the inside out. We took back control and we made it our part in life to support our kids in the best way that we could and that we would be our kid's advocates, for despite the best intentions of the professionals entrusted with the care of kids, they were not necessarily going to be there for the long haul, we as their parents sure were.

For many of us the journey made our hearts softer, more open to the suffering of others. We have become greater champions of social justice, either just in deafness or even in the wider field of special needs. Many too feel a strong sense of the need to give back to others who find themselves where we have walked before them.

My call with this parent, brought back many memories about what an awful place it was that she was in right now. The place of darkness, guilt, fear of the unknown and mostly fear for the future. Oh she loved her son, just as much today as she did on the day he was born, but what she needed to know most was "would he be ok?" Her head had filled with fears about him being teased at school for his hearing aids, or what if his speech wasn't normal, would people tease him, what if he never found a partner, got married?

From my point of perspective 12 years further down the track, it was my privilege to hold out that warm glowing light at the end of the tunnel. Despite her fears for herself and her son, they were both going to be alright. They were both going to grow and learn from this experience and her son was going to be ok. It wasn't going to be an easy, quick fix - no matter what choices they made for him in the future, it was going to require a commitment from them to support their son, but it was a commitment in which they were not alone - there were so many people there to offer them a hand, to help them up on the tough days, to share the greatest of joys on the good days.

I am going to call her again in a short while to touch base and see how she is doing. The thing is right now she doesn't really have a clue of just how strong she is and what she is capable of doing. She has no idea how this experience will change her and her perception of herself and what she can do. So how am I so sure that she will experience and be all these things - because I have also walked that path before too. I have walked the path from fear of the unknown to a quiet strength and resilience in the knowledge that we did make it through the tough times and have come out the other side, not only stronger but much much better human beings, with a real sense of commitment to humanity and supporting all its members.

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....