Thursday, March 20, 2008
Friday, March 14, 2008
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 basket...you 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"....so 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
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.
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)....my 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.
Friday, March 7, 2008
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.