Thursday, March 20, 2008


Ok so after waiting that agonising 4 weeks it was off for a hearing test at Australian Hearing. Remember the dog barking incident? Based on that experience, we were pretty convinced we were dealing with a hearing loss!

So off we went with our beloved 2 year old to find out just what was going on. Have you ever seen them test a 2 year old for hearing loss? It is usually done as behavioural testing. The whole gang (audiologist included) file into this large room that is actually a sound proof booth. In it she has a table and a computer and a range of other gadgets used to test hearing. On one side of the booth there is like a smaller column booth where someone outside can access that column. The person outside is armed with a puppet and a switch to turn on a light inside the column.

Ok still with me? So the idea is you distract the child being tested with toys and games on the table. Then when there is a sound being made by the testing gear, the puppet appears in the column and a coloured light lights up the column. Sooo of course the young child needs to associate that when I hear a sound, the puppet will be there. It is supposed to make the child look for the puppet when they hear the sound. Easy enough eh? Well yeah except you as the parents can't look when you hear the sound because then your very smart little pint size will just follow your eyes to find the puppet without so much as hearing a peep.

The test begins, we play with A and distract him. The first couple of times a sound is made we direct his attention to the puppet so he knows that something is going on there. But you see here is the catch! When you can hear two tenths of bugger all and you don't know that there is a sound, and that the sound is your cue to look for the puppet, how in the hell do you know when to look? Short answer is you don't! So you just look over every now and then at random times to see if the puppet is there.

The test continues, it is clear A has no clue what is expected of him and equally clear he is hearing bugger all. And so we increase the volume of the sounds he is supposed to be listening out for. Oh my god, how loud are these sounds, it feels like I am at rock concert with my organs vibrating and the bones in my hear tap dancing on the sound vibrations - but my gorgeous little A, no reaction, nothing - nadda. After testing at a number of different volumes, and a number of different pitches, the story is the same. A is not reacting to any sounds, clearly he can not hear them and so also can not get the gist of the behaviour conditioning of when the puppet will be there.

Well we had prepared ourselves for that right? We knew from the dog barking incident he wasn't hearing right? So we were expecting this to be the case, right?


Of course we had all the logical reasoning and arguments going around in our head before this appointment. Logic doesn't come into it though really when it is your child, the one entrusted in to your care, the one you love more than life itself. No matter how rational and logical you are in real life, you can't help but cling to the hope that it is all a bad dream and you are going to go to that test and see that your child hears just fine and that the nightmare is finally over.

Of course it wasn't. The audiologist used words like "profoundly deaf", "hearing aids" and a whole lot of other stuff that I just don't recall. I tried so hard to listen to take it all in, but the words just washed over me. I wasn't in my body listening to all this information I need to know. I was numb, I was out of my body watching this happen to someone else, to someone else's child. It wasn't real, it wasn't happening - but of course it was. There was the numbness and then there was that feeling like someone had just stabbed me through the heart. This poor little boy had fought to hard to survive meningitis and survive it he did - only to be kicked when he was down and for us to discover he was left with a profound hearing loss. Why did we now have to deal with this? Hadn't we been through enough? Hadn't this gorgeous little boy with the mischevious smile suffered enough already? I don't really remember how we all got home from that appointment, it was a blur of numbness, emptiness and desolation caused by such a feeling of loss.

One thing I did recall hearing was that in order to get hearing aids fitted we needed a referral from an ear, nose and throat specialist (ENT). Of course it wasn't like we already had one of them was it? No need for us and our suburbianly normal family life. There was also a mention of a cochlear implant and that A would be an excellent candidate because he had "normal hearing" prior to meningitis. I clung to those words without really understanding what it all meant.

Lucky for us our paediatrician was truly an angel that walks on Earth and he squeezed us in for an appointment pronto. I thought no-one could have been as upset by the diagnosis of A's hearing loss as we were, but you know the paediatrican damn near was. He kept saying things like "we did the best we could do, we gave him steroids to reduce the inflammation of his brain, we managed to stop the brain swelling, he didn't even have any seizures"....he too was gutted that after all the collective efforts to save this little boy, we hadn't managed to save his hearing.

Our paedatrician would give us a referral to an ENT. We asked about this cochlear implant thing. He was a little vague not really knowing exactly what outcome A might get from one and "in any case the waiting list is like 2 years to get one"

What the hell did you just say?

In the time since meningitis I had heard what speech A did have go from being clear two year old speech, to a very slushy sounding speech that was becoming harder and harder to understand. And that was in like a month or so and now you want me to wait 2 years to give him something that might help him hear again????? I think not people!!! Clearly the paediatrician did not have any more information to give me on this one so I would have to wait to find out more.

The ENT we were referred to actually was the paediatric cochlear implant surgeon for our state. I remember calling his rooms to seek an appointment and his receptionist was adamant that there wasn't an available appointment for another 3 months taking us well into next this time we were about halfway into December.

It is funny when you look back in hindsight, what is it that makes you add in some extra information, that at the time really seems insignifcant to you but in the situation you are in makes the most amazing difference, even though you don't know it? I told this lovely lady that I needed to see the ENT because I needed to get hearing aids for my son so that he could hear again. Meningitis had stolen his hearing and I had to do something to at least try to get it back.

Next thing I knew I was on hold and she was speaking to the doctor. In a flash she came back with an appointment for a couple of days later, would be available? Hell yes, ain't no where else that was more important that we needed to be!

At that appointment we met the most amazing man. This was a surgeon soooo before his time. Before people wrote text books and ran courses on bedside manner, on treating the whole family, on making sure family members had all the information they needed in order to make informed decisions - this guy was so ahead of the game he was already doing it.

I remember writing the address down, it was in a fancy part of town - hmmm megabucks doctor I thought to myself. Well I don't think I could have been any more wrong. We arrived at the surgery to see an old 70's style reception desk and older filing cabinets stuffed to overflowing. The furniture in the waiting room was comfortable enough but its style gave away its age and the years of love it had already had.

Finally we were called and in we went to meet this most amazing man. We were to learn a lot about meningitis that day. You see meningitis attacks the little cells in the cochlea, called hair cells. You see hearing is a pretty complex, pretty amazing process. For more information about how our hearing works check out this site!

So A's hair cells had been trashed by the meningitis. That meant no matter how loud the sound was or how much we amplified it with hearing aids, the hair cells weren't going to transmit that message to the auditory nerve of the brain. Another big nastie with meningitis is that the fluid in the cochlear that is usually very water-like is also effected by meningitis. Meningitis makes this fluid change to the consistency of toothpaste and then ultimately a hard bone like subtance.

Given that a cochlear implant goes right into this area, there is a need to get it in there before this happens. This hardening process can take years for some patients but only months for others so we were not going to be waiting around. It was now clear to me why we had jumped the appointment queue. I had mentioned the word meningitis to the receptionist when I called, lady luck and fate were surely smiling on us that day.

Are you one of those folks that complains about the cost of health insurance and how you are sure it owes you more than it has given you? Well we used to think that too! At our visit to the ENT we discovered that a number of cochlear implant surgeries are covered by government each year but the year that A needed it, they had already been allocated. It was possible to try to get funding from a charity like Variety for urgent cases like A if need be, but we were blessed to have private health insurance to cover the lot. At that point in time it was such a godsend, we just had to worry about our beautiful baby boy, not how the heck we were going to pay for his implant and associated surgery costs.

Before any of that though we needed to confirm the level of his hearing loss. This was to be done by Automated Auditory Brainstem Response (AABR). The key to this test is that the child needs to be sleeping. In the case of newborns a good feed and into a settled sleep will do fine, but not so for the 2 year old toddler with attitude.

Ah no for that we have a drug for sedating them so that we can test them. Any parent who has had their child sedated for this test will tell you it is a living nightmare actually getting them to the sedated part. The drug does ultimately sedate them and off to the land of Z they go, but not before turning your world and everything in the immediate area upside down!

They want to get off the bed - ah no, you might fall and hurt yourself.

They whine and grizzle to be cuddled - only to smack your loving arms away and if they are really good, sideways slapping you in the face in the process.

And so it goes on, this continual battle of wills until they finally collapse into sleep. BUT of course this is different for every child so you really don't know just what side of the lottery you are on until you take on the challenge. I can't remember the exact time but I reckon we went close to an hour, and after all that he slept for maybe 20 minutes - 20 minutes!!!! Yep that was it but fortunately it was enough to complete the test.

The test comprises putting a kind of shower cap on their little heads with sensors that touch different parts of their little heads. A set of headphones are put on their ears and sounds sent through the headphones. At first a baseline brainwave pattern is determined in the absence of any sound. Once a baseline has been established a series of sounds are pumped through the headphones and brain wave pattern recorded. Clearly when a child hears a sound they register that sound and that can be seen as a change in the brain wave pattern. We kind of knew a bit about it at that time, not as much as we know now, but we knew enough to know that we should have been seeing something but we weren't. I'm not sure you would call it "flatline!" like the doctors shout when the patient's heart stops and the ECG flatlines, but it was flat enough that we knew this test was just confirming what we already knew - this poor little bugger could hear jack shit!

Back to the ENT we went, yes this had confirmed his level of loss. Realistically he was unlikely to gain any real benefit from hearing aids and if and when his cochleas ossified (turned into that boney substances) hearing aids would be useless. Total no-brainer for us his parents - whatever was the best option for this little boy to hear again, we were on it, where do we sign! If his implant didn't work, we would have lost nothing, but just suppose, what if, what if it actually did work????

By this time Christmas was rapidly closing in and after several months of appointments and the crazy life of two kids under 3 years old, C and and I were starting to run out of steam. I was thinking to myself, yay last appoinment til Christmas at least then we could catch our breath.

Well so I thought!

We needed a CT scan of A's inner ear to make sure there was no unknown malformations that may impact on his implantation or in the decision of which ear to implant. At that time only one ear was implanted, partly because of cost, partly because outcomes were not so well researched, and there was a thought to preserve the other ear for future technology. Now children who have had meningitis are routinely implanted with both sides at the same time in that early surgery.

So it was another day stay at the hospital for a CT scan however we did manage to avoid the sedative from hell. For this they put them under a light general. I was able to carry A into the room and hold him as the anaesthetist put him under for his CT.

One final pre-Christmas appointment with the ENT to go!! Everything was looking good, and A was scheduled for his surgery on January 25th, the day after Australia Day.

At that last appointment, his ENT showed me just why we were in the presence of the most truly, amazing human being and surgeon. He had explained to us the need to move quickly on A's surgery but he also felt a sense that he was rushing us and he wanted to make sure that we were totally at ease with our decision for A to have implant surgery.

He was holidaying interstate over Christmas but was most concerned that we should not be out of touch with him during this time. He gave us his mobile phone number with the words "Any question you have as A's parents is not a silly questions but rather a question that needs to be answered. Ring me anytime over the break if you need to ask me anything, I want you to have all the answers you need to be comfortable with this. If at any point you are not comfortable you say STOP and we will stop. And that is right up until we wheel him into surgery, at any point up til then you can say STOP and we will stop".

Can you believe that? How many surgeons give you their mobile number and tell you to call them while they are on a family holiday? How many surgeons truly empower the parents that this is their decision for their child and at any point they are able to change their mind about that decision? Like I said a total ace in the pack, this ENT. I would later learn that this was just the tip of the iceberg with this particular ENT and his generosity of spirit.

By now I think it was about the 23rd of December and we were totally exhausted. We had a host of appointments after New Years with service providers, including getting hearing aids to trial for the time leading up to surgery.

However for now, we needed some down time. We needed some time just to be together, to reconnect as a family. This was so true for B who had to be baby sat so C and I could go to the appointments together to support each other through this process. It would be our first Christmas together with A not hearing, and also our last Christmas together with A not hearing (well he would be hearing with his cochlear implant by the time the next Christmas rolled around!).

Friday, March 14, 2008

Why did this happen?

In the heat of the moment and reality of all this happening around me, I don't suppose I really had much time to contemplate "why me?", "why him?", "why us?". Even if I did have time to spend contemplating my navel and the meaning of life, I'm not sure that I would have really had an answer at that time.

Some nearly 14 years later, I have the benefit of hindsight, of life experience and one would hope the gaining of some wisdom to add to the contemplation process.

It is kind of funny really when you reflect on life, well some call if reflection, others call it over thinking....yep I have been offered the title of an over thinker on more than one occasion!

As a kid growing up, I was much like any other kid I suppose. I like to think that I was always pretty friendly and compassionate to those in need. I was of course a total tomboy, far more likely to find me half way up a tree, than sitting delicately in sea of ribbon and lace.....bah humbug, you can't do nothing wearing those things! To this day, I am a jeans and T-shirt girl through and through.

Of course on hitting those teen years, I followed in the path of those before me in to the "self absorbed" zone! The place where it is all about me, me, me. To hell with other people and their problems, I'm alright mate.

I guess I did grow up a little bit as I emerged out of my teens but I don't think that I really captured "generosity of spirit". Sure I was nice enough to the people I met, loving to my family and friends and all, but I was guilty of not really thinking outside the square or realm of my own life. It wasn't that I didn't care, it was more that I just didn't think about it, consider what went on in the lives of others.

Well that was how it was B.A. that is before A!

A, and the journey we have been on with him, has brought so many amazing gifts into my life. How many parents take forgranted the development of their child's speech? Just assuming it will go like clockwork, according to the plan? How many parents just sit back anticipating each milestone, acknowledging each one as they fly by on the pathway they had planned for themselves and their kids?

When your child has a significant hearing loss and you choose the auditory verbal therapy method (AVT), it is a pathway of love, commitment and damn hard work! For those that don't know about AVT, it is an approach that works on the priniciple of having the child use the hearing they have to learn to listen and speak. In our case we were already boosted along the path because A had heard before. For those kids who are born deaf, they need to learn to listen, to learn to understand that when a dog barks, he doesn't just prick up his ears and bounce off the floor, levitating off all four paws. When he levitates, he is actually making a noise that sounds like a bark. Same thing when the phone rings, or someone hits the door bell, the toilet flushing, it is a world filled with a myriad of sound, a myriad that many children born with a hearing loss have never heard until such time as they get hearing aids or a cochlear implant.

The thing about AVT isn't that you go to visit the therapist once a week with your child and that is it! The therapist's job is to teach you, as your child's parent, so that you can go home and "work" with your child. I use the word "work" but to the kids, it isn't work! It is just mum mucking about, playing, having fun with them all day every day. Perhaps one of the best descriptions that I have heard is likening it to "narrating your life". Children with a hearing loss tend not to asborb language automatically in those very young years like hearing children do (though this landscape is changing with Universal Newborn Hearing Screening and early intervention). So where other kids might have just heard it and incorporated it, kids with a hearing loss need to hear the words many more times to incorporate it into their language.

To ensure you maintain the interest of your child you make it into a game, and use changes of tone to keep them interested. The funniest thing is that in a room of parents interacting with a baby (hearing or with a hearing loss) you can spot the AV parents a mile away! You can tell by the way they interact with that child, if they are an AV parent. As far as the baby is concerned this is a very interesting adult, who makes everything so much fun : - )

Sorting laundry becomes conversations about colours, Daddy's, Mummy's, B's...going up, up, up into the washing machine, down, down, down into the get the picture.

There is a whole of controversy around deafness, hearing aids, cochlear implants, sign language and AVT. I don't know but some of my readers, may get an insight into that depending who comments on this blog entry, but I will cover that another day, another blog topic.

Ok where were we? So part of AVT is becoming your child's teacher and being very involved and supportive of your child in those early years. Inevitably you become an advocate for your child.

For me this whole process was the intiation of a significant period of personal growth. I was well educated, articulate and very passionate about my child. In fact so determined was I that I might continue to advocate effectively for my child, I completed a Graduate Diploma in Special Education, while A was at preschool, so that I would know the lingo, be able to talk the talk and match the bureacrats with their jargon! I was very lucky too, to have such a supportive husband who involved himself in all this and our boys, so that I had the time to study and pursue advocacy.

During that time though, I saw many parents that had been dealt an even tougher deal in life. Not only did their child have a hearing loss but they had other issues in their lives to deal with. Somtimes other children with additional needs, sometimes English wasn't their first language or they were new immigrants, others had just been worn done by the continual struggles of life and it was all the energy that they could muster just to put one foot in front of the other. They had nothing left to give to advocate for their child. BUT their child deserved an advocate too, their child deserved every chance to meet his/her potential to be the best that they could be. No child can help to whose family they are born, it is the responsibility of us all to make sure they all get their chance to shine.

So began my foray into advocacy, something so I discovered along the way, I'm not half bad at! First it was the management committee of the kindergarten, then in a blink of an eye I was president of that committee. During my presidency there were more than a few clashes of horns with the state education department concerning the children with a hearing loss at the kindergarten and the program they had access to.

That led me to the state parent group which provides support and advocacy for parents of children with a hearing loss irrespective of their chosen mode of communication! Yep and then onto presidency of that group too....many years on I am still part of this group and still as passionate today as I was then about the rights of every child with a hearing loss, and the absolute responsibilty government and service providers have in ensuring these kids have every opportunity to achieve their true potential.

In that mix too was a stint on the board of a service provider organisation that my son recieved support from, and of course some time as president of the board...well of course you are saying : - )

Ten years ago this year, together with another mum in the USA, I also started an internet forum for parents of children who are considering a cochlear implant for their child, or whose child already has an implant. The hows, whys and wheres of that one are worthy of a blog in their own right, so you will have to wait til I write that one to find out more.

As much as I have advocated for my child and other children with a hearing loss, my compassion, passion and desire for social justice goes well beyond that! There are so many areas of unmet need in our society today. Too many who are of the "I'm right jack, so stuff you!" mentality. Is it any wonder really that we see so much evidence of social breakdown when so many people are so selfish and deliberately closed off from the problems of others?

This journey has taught me so much about myself and what I have that I can offer to others. My journey with my son has been made easier by those that blazed the trail before me. So it is, that it is incumbent on me to continue to blaze those trails for the future generations of kids to come. Many of those earlier trail blazers are those it is my privilege to now call my friends, those that have inspired me to be a better person and to give back in the way that they gave so that things would be easier for me and my son. So in many ways the dark cloud has had the most glorious of silver linings, and I truly believe that these things do happen for a reason.

I guess the most amazing thing about taking the time to give is that you are rewarded a thousand fold. A bit like positive karma I guess some might believe. I have many emails, personal messages and notes that have been given to me over the years thanking me for being there for that person or for being part of a group that made a difference in the life of that parent or that child. Of course the whole notion of generosity of spirit is that you do it not for the rewards or the accolades, you do it because you can, you do it because it is right and you do it because someone has to.

So to those that know me through A, may you too consider taking up the mantle to make a difference, although the vast majority of you already have! For those that know me from other perspectives or those that don't know me at all and just happened to turn up at my blog for a read, perhaps this post may make you think about how you can contribute to those around you, how you can make an impact for the better on someone who is struggling putting one foot in front of the other.

I have always been a real lover of song lyrics, those that give cause for thought or comment being my favourite. One of my all time favourite lyrics is from the song "Hands" by "Jewel" I leave you with these words:

"We'll fight, not out of spite
For someone must stand up for what's right
Coz where there's a man that has no voice
There ours shall go singing

taken from "Hands" by "Jewel"

Saturday, March 8, 2008

The wonder of the human spirit

So after 14 days in hospital we finally were able take A home, with a future hospital appointment for a hearing test in 4 weeks time. Apparently we needed to wait 4 weeks in case any residual brain swelling from the meningitis might effect the results of the hearing tests.

At that point, the smallest reason for our greatest joy at that time was having our boy home in our house, sleeping in his bed, his parents finally being able to sleep in the same bed together. His brother able to have some semblance of normality to his life - after 14 days of being looked after by relatives, picked up here, dropped off there, when all he really wanted was the normality of home, and Mum, Dad and A. It was great to be home, all 4 of us together in the same house.

For awhile at home one of us sat behind him, as you would a baby learning to sit upright, in case they topple and hurt themselves. He would still topple completely unexpectedly. He couldn't tell us what he was feeling but he always looked quite confused about how one minute he could be sitting up right, then next lying there staring at the ceiling.

Before meningitis A was the happiest, cheekiest little boy. He loved life with a capital L! The broken little boy we brought home was not the cheeky monkey he was 2 weeks before. He was one angry little monster. Prior to hospitalisation he was toilet trained, when he came home, forget it baby, I'm not doing it, you can't make me, was his attitude. That changed back again over night, and so did his behaviour, but you will have to wait for that story to find out why.

Many a time, he would lean lovingly into his younger brother's pusher, loving and cuddling him or so I thought...til I heard the blood curdling wail and loud yelling and tears, only to see a set of freshly made teeth marks imbedded in B's arm, leg or even hand.

However for all that anger, one day he made it very clear to me that this kid was a survivor and no matter what life threw at him, he was going to focus on that curveball and smack it clean back over the pitcher's head and out of the park! He was able to sit with balance and even crawl a little bit. He still couldn't walk at this point though, he just didn't have enough balance to stay upright for that amount of time.

One day I saw him playing with toys on the loungeroom floor, toys I didn't put in there for him to play with. So around the corner of the door I stood and watched him, unseen from where he was. He grabbed his ride on toy, a fire engine with a seat with that flipped up to store things inside the seat. Using the balance he had, he sat down turned it around and rode off to his room. Once in his room he went to the cupboard that held the toys he was looking for, and pulled the fire engine to a stop right next to it. Carefully he clambered off the fire engine and crawled over to the cupboard. After judiciously selecting the toys that were to be played with today, he began to pile them back into the seat of the fire engine. When it was full, he would put the seat back down, clamber back on and ride it into the next room, unloading his bounty onto the growing pile of toys. I stood there my heart breaking. On the one hand, my heart broke for the fact the he couldn't just walk in and out of his room and carry the toys like he had only 2 weeks before. The fact that he couldn't only served to remind me of how much damage one bacteria can do to the brain of a developing child, the fact that he couldn't reminded me of how unfair it was for my baby to be robbed in this way. But in amongst the hurt, the pain, the fear for the future, was the undeniable amazement of the strength of the human spirit. This not much older than 2 year old toddler was not going to have the inability to walk stop him from achieving what he wanted, and at that point in time it was TOYS! So damn it he was going to find a way around it and get those toys somehow. Which he did, completely autonomously. Through the tears I marvelled at what an amazing little guy we had been blessed with and what an amazing spirit he possessed. Our little survivor, he survived his meningitis and he was fighting back against the after effects, losing his balance for awhile was not going to stop this little guy.

Of course that 4 week wait til the hearing test seemed like a life time. So we did what any self respecting parents would do - we would sneak into his room at night and bang pots and pan lids in there trying to wake him up. Of course he didn't wake up, but again as parents it was our role and duty in life to deny the rational and the logical and cling to the hope and belief that he hadn't lost his hearing. He was just sleeping heavily, it was the brain swelling still effecting his hearing, that is what the doctor said right?

One really beautiful Spring day I decided it was just too nice for us to stay home. The boys and I were going to head off out for a walk in the sunshine, it would be so good for all of us.

So I loaded up my precious cargo into the tandem pram and we were off. It was just so gorgeous outside, the sun was shining, the birds were singing, it was just the most perfect spring weather. We walked for awhile in the sunshine, taking in the sights.

We were passing a house with a painted galvanised iron fence. Why is it that people paint a big piece of rippled metal in colours like green or beige? Do they honestly think it makes a hunk of metal look more natural, or part of nature? Anyway we approached this house, my little unit of 3 out together having fun. Of course behind this fence lived a dog, but of course we did not know that, did we? From nowhere it ran at the fence, hidden from our view but the panacea of beige metal, and it loudly barked its disapproval that we should be passing its house. Well as you can imagine, this came as quite an unexpected shock. Lucky for B he was still in nappies, no-one would ever know, me on the hand well it was lucky that control had not entirely deserted me! B and I jumped out of our skins, literally levitating from our positions, as we were taken by surprise by the nosiy canine on the other side of the fence, barking right along side where we were standing. A didn't even flinch, didn't turn his head, didn't react, nothing, nadda, nil! My heart sank, oh sure I could right off the unconventional pot banging hearing test, I could right of the fact he was soundly asleep.....but here before my eyes this really loud noise was going on less than a metre from his head, and nothing, no reaction, nada. My precious boy, he had beaten the odds and survived meningitis (which the strain he had, has around a 20% mortality rate did you know?) Yeah right great let's celebrate his survival of meningitis and then when you think you might be out of the woods lets just kick you in the guts again because hey folks it looks like he has a hearing loss. I couldn't stop the tears that flowed down my face the rest of the way home. It wasn't a blood curdling wail, it was just the silent flood of tears, of soul destroying reality.

However somewhere inside, that human spirit kicked in when I walked through the door. If this was what we were dealing with now, I needed to know. I needed to have this confirmed so we could start sorting out the what happens next bit. I rang our paediatrician, we were on first name basis by now! I asked if we could move the hearing test forward because I was absolutely sure this little guy couldn't hear. I will never forget his next question; "What ear do you think he can't hear out of?" With all the self control I had to muster and to this day I brim with pride that not a single "f" word did I utter in response (yeah yeah I know you are shocked, because I am not adverse to dropping it every now and then) response "Ah how can I tell what ear he is not hearing out of, if he isn't responding to a single sound?" The paedatrician said we needed to wait the last week or so out and do the testing at 4 weeks. So great we had another week or so in which our imaginations could run wild with the worst thoughts and then again the false hope ridiculously daring to believe that maybe the hearing loss was temporary and in a weeks time all would be fine.

As we waited out that time, I found I had to become a different parent to A. I had seen him not react to the sound of a man eating monster of epic proportions barking less than a metre from where he was sitting. If he couldn't hear that, then what could he hear? Me talking to him, me calling him, me asking him not to continue that inappropriate behaviour? What if he was naughty and I thought he had heard me tell him not to and then I told him off. What if this little guy had no idea that I had spoken to him and then the next thing he sees is this angry mummy face and suddenly he is being punished and he has absolutely no idea why? I had seen that look of terror and confusion when his parents allowed those nurses to stick a horse size needle in his tiny chicken leg thighs. I couldn't risk having him experience that fear and confusion again. I made a commitment that unless I caught him in the act red handed where he could see my face right then and there when he was up to no good, then there would be no telling off, no discipline. I couldn't risk hurting this little boy anymore than what he had already suffered. That is the way it would be until we knew exactly what we were up against and what the future would hold.

Til then it was a slow and agonising wait, til we could see the audiologist and find out exactly what he could hear, and what, if anything, we could do about it.

The Pick of the Bunch

So with "Welcome to Holland" on my mind, I started thinking about the things about Holland...not as they 13 years ago, but in more recent years.

Perhaps it is because I am 13 years older and wiser?? Some might dispute that, they marvel about my adult capacity for immaturity, not sure how they would deal with the thought of the coming of wisdom for a grown adult regularly reprimanded by her hubby for starting a hacky sack fight with one of the kids right on bed time!

Maybe it is more about 13 years of life experience, life experiences and encounters from which I have learned many lessons, so in part very much lessons learned from A. Then again 13 years ago when all this happened, part of me still had a very strong belief that things happened for a reason. Not necessarily a faith of biblical basis, but just a strong fundamental belief that there was a reason things happened.

Prior to his illness, A was just starting to take one to two turn conversations with adults. He was the consumate master at mimicking me as he saw me when I was speaking on the phone. He even had my spontaneous burst of laughter down to a fine art, complete with the laugh out loud kind of laugh I have when I find something really really funny! Many times people had tears running down their faces watching him impersonate me. All in all even then he was showing us just how much of a bright little cookie he was.

Not long after we discovered that he had a hearing loss (more another day on that one!) and that he would have his fair share of challenges to meet in this deal, I actually said to my hubby that I was right things happened for a reason. Many kids who are really bright get accelerated through educational programs and so they don't quite fit anywhere, making those teen years really tough. I was convinced that A had met with these challenges in order to "bring him back to the pack", not to limit what was possible for him, but rather to slow the phenomenal progress to those possibilities that he had already demonstrated.

In our state when a child is diagnosed with a hearing loss, the Education Department sends a guidance officer (GO) to visit you at home. The role of the GO is to come and discuss the range of educational options with you and to ask you to contact each service provider and have them visit you, to help you make that choice.

Interestingly one of the people from one of the service providers was to meet me just that once, because we didn't choose the provider that she worked for then, but our paths would cross again many years later.

In fact she was in a particularly interesting position, not only was she a teacher of the deaf but she was also mother to a child with a profound hearing loss, Big A.

Later I was to see more of her, big A and big A's Dad. In fact, in keeping with the title it could also be lessons learned from big A - he has brought his share of lessons into my life too.

OK so fast forward to kindergarten, are you keeping up here people? I never said that I was going to write a cohesive, easy to read piece now did I?

So when A was at kindergarten, I joined and later became president of the kindergarten management committee. The kindergarten had a special program for deaf children being raised orally. By that time I was pretty outspoken about making sure that all deaf kids in that program had their chance to be the best that they could be. The kindergarten worked on reverse integration where a small number of deaf kids attend the kindergarten with hearing children. The hearing children provide wonderful speech and social skills role models for the deaf kids.

My A finished kindergarten that year, ready for his transition to school. Imagine my surprise when I discovered our state education department was about to reduce some services to these deaf kids at the kindergarten - not closing the program, just reducing the number of sessions these kids could access. Hmmm if you have a pain in the arse president of the management committee at the kindergarten where you want to change things, one would think you would do a little homework before jumping in announcing reductions, wouldn't you? Ah sadly not for these guys.

Of course A and B are only 15 months apart so when A was leaving heading off to school, B was just starting out his time at the same kindergarten! Da Dah yep ongoing president of the management committee was still around the place! In true government shenanigans, these changes were announced as close to the end of year closure as possible, in order to thwart any attempts to make some noise to get these things changed! We managed a few meetings with departmental heavy weights, and actually got one to come down to the kindy to speak to the committee. Well all the words were not worth the paper they weren't written on!

I was furious, so it was off to the computer to put my maddest thoughts on paper, the continual refusal to answer a direct questions, is truly a bureaucratic artform. Someone at the time suggested I contact an organisation called Parents of the Hearing Impaired of SA (PHISA). Time was short in getting my poison pen letter into the department so I had to take the punt to send the letter off and send a copy later to the president of PHISA at the time, with a copy of my contact details should he wish to discuss this issue with me.

Sometime later the president of PHISA at that time contacted me to discuss that letter and to offer to help myself and the management committee take on the department on this issue. The president at that time was Big A's Dad!

As part of my involvement in this fight with the department (we had a big win on that one!) and PHISA's involvement supporting the process, I became more involved in PHISA, eventually taking over from Big A's Dad. It was through this organisation I got to meet Big A, and meet Big A's mum, that same person that came to see a a few years before to talk about the service she worked for.

We had social activities and a family camp every 2 years for PHISA so we got to know many families with kids with a hearing loss. They were and still are part of the many great things about Holland.

However it was different with Big A and his family. Big A is about 5 years older than my A and he too had a cochlear implant, so he was like my glimpse into the future of just what might be possible for my A. Oh and what a glimpse it was, talk about the poster child of success. He was articulate, he was confident, he was just fact he is still all those things and more today!

His parents - hmmm- trying to put them into words is not easy. You know there are lots of great people in the world and you meet them and you think to yourself - hmm lovely people I like them and you become friends etc etc.....

But then there are a small handful of very special people. What is it that separates these people from the "run of the mill" nice people. The only way I can find to describe it is their spirit. There is something about these very special people, a spirit of warmth, of generosity of spirit - shown by a willingness to help out other people without hesitation. A genuine caring about other people and a desire to make the world a better place when they leave it, than it was when they came in.

That in a nutshell is Big A's parents. So it should come as no surprise then that Big A is turning out to be an amazing young man, very much in the mould of his parents. He too is a very warm, caring, young man with an awesome sense of humour and a quick mind. He continues to impress me with his achievements and he is already volunteering his time to help younger deaf kids in their more difficult teen years at school. Yep another one on the road to making this place better than it was when he came in!

So in the bunch of tulips here in Holland, these guys are my pick of the bunch! With the crazy selfish nature that seems to pervade much of the world today, there is truly such a need for the special people. It is incumbent on all of those that have come to this a little later on the path that we continue to improve on things and make things better than they were when we came in.

Friday, March 7, 2008

Welcome to Holland

byEmily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
This is one of the most beautiful poems I have ever read and really does tell the story of parenting a child with special needs.
You see the thing about parents of special needs kids is none of us actually chose to be. Not one of us stood there in the line when children were being handed out, and said, "oh no thank you, it is a special needs child for me thanks"
Heck I even managed to land my flight in Italy, with all the other folk checking out the Coliseum. Life was all going according to plan two healthy boys, ok so having them 15 months apart wasn't quite part of the plan. BUT apart from that life was pretty damn normal....well as normal as it gets when you put your body through two pregnancies so close together.
That was the way it was right up til B's first birthday. He celebrated his first birthday at the beginning of October. By the end of that month we were on a whole different flight - we didn't know it yet, but we were being transported from Italy to Holland with such speed we could have beaten Spock on the Enterprise with the teleport beam!
At the end of that month, A fell ill, he was 27 months old. At first it was like any other childhood illness, the clingy syndrome where we mothers feel that we actually have grown another lump on our bodies because our child is so permanently attached there. Well it wasn't a regular childhood illness, no it was in fact meningitis. Those taking the time to read this, are your kids up to date with all their shots, including those that protect them from meningitis? There is now a vaccine to protect against the bastard bug that sent us down this road, but at the time when A got it, there was not.
In the blink of an eye we were in hospital, this tiny toddler unconscious and very, very sick. He was diagnosed with bacterial meningitis, in his case caused by streptococcus penumoniae. This apparently innocuous bug that causes sore throats, ear infections and sometimes pneumonia. If you are really unlucky, over the final safe guard of defence, the blood/brain barrier it wanders. And voila, you get told your child has bacterial meningitis!
Excuse me, he was what??? Oh but wait these amazing medicos with the bedside manner of a cold bed pan have more news for us. "IF he survives the next 48 hours, he should make it."
"What the f'k did you just say?" my mind was screaming at them, "IF he survives? what the hell does that mean?"
I guess it was kind of lucky we didn't have too much time on our hands to contemplate that one. Instead we were working on the logistics of how this would work, one toddler hospitalised, one only just turned one year old who also needed love, care and attention. And these honchos at MI5, and Special Operations think they have logistics and planning down to a fine art, kiss my a**, they have it easy compared to the military precision of our special op!
We had relatives caring for B during the day, others making meals for the parent on "home duty" to take home so they and B at least got a decent feed. The other parent took to the overnight "sleep" (actually more like fitful snatches of shut eye in a dodgy fold up bed whilst over hearing who was doing who care of the night duty staff). For fourteen days we maintained our bedside vigil.
Oh he woke up but that was about it, there was no balance left at all. In the hospital play room we had to sit behind him lest he lose his balance and topple over on the floor. Not that I was really all that keen for him to even be in the playroom, my mind reeled at the possible cocktail of germs and bugs that no doubt lay in waiting for him on those well used, aka well slobbered on, toys!
There is nothing so soul destroying as looking into the pleading, questioning eyes of your toddler as you stand there and allow a nurse to stick a horse size needle fair into the muscle of his thigh to inject more antibiotics. You can't look away but you see it in his little face, his eyes screaming at you "why are you letting them do this to me? Aren't you the ones that are supposed to protect me?".
So with the balance loss comes this listing to one side. "Is this a normal side effect of meningitis or something we need to look further into?' muses his paediatrician...."ah hello you'd be the guy in a white coat with the initials Dr in front of your name, "what the hell do you think?". Although I have to say his paediatrician was in fact a complete blessing, without Dr M, I don't know if we would have survived this ordeal! I can remember the hospital's resident paediatrician, expressing his concern that A wasn't out of bed and walking around the room. Of course in these situations mothers must do what it is inherent in them to do...totally flip out and freak over all the possible reasons why this hasn't happened. Bless Dr M when he came in and I was climbing the wall convinced I was taking home a seriously damaged beyond repair child......on hearing the words of the resident paediatrician, he said something like "the kid has been unconcious for two days, how the f'k is he going to be walking around his room, f'n text book doctors"....ah you can see why Dr M and I got on just fine....I liked a man who said exactly what was on his mine...and his colourful language, well that just helped disguise mine!
Oh back to the listing we were not happy with that, Dr M, that is. So it was off for a general anaesthetic and an MRI, as if this poor little bugger hadn't been through enough. Well the results showed nothing abnormal, just patterns of what was assumed to be scarring on the brain due to meningitis....what the???? Scarring...what does that mean? Oh probably nothing.....
With those words ringing in our ears and of course an appointment for a hearing test in 4 weeks time, we were ready to leave hospital....oh did I mention the hearing test? Oh yes, lucky you, jackpot week for you! The bug your son has is the one that has the highest incidence of hearing loss as a result of the meningitis, hence your booking for a hearing test....oh just stab me in the heart, we have gone through 14 days of hell, we are taking home this broken little boy, who can't even sit up on his own without our being there to support him and protect him from toppling over...and now you tell me he may lose his hearing too????
Off we went home from hospital with our broken little boy.....completely unaware that at this point, we were already in our seats on our way to Holland...maybe it was just as well, we needed time to regroup at home, in Italy with all our friends and family, before we would be strong enough to realise we had landed in Holland.