When K was just over 3 years old our household had another drama that proved to be a turning point for K.
My wife was 31 weeks pregnant when she decided to go into labour early one Saturday evening. Now, in most parts of the Australia this would be an inconvenience and worrying time.When you live in country Queensland it is an absolute nightmare. My first move was to call the local hospital only to be told "We don't deliver babies here.What do you expect us to do about it?".
My next thought was to ring our feeder hospital which is a further 75kms West(away from the bigger towns). The head nurse there told me to ring an ambulance because protocol dictates that the ambulance has to take you to the nearest hospital. Yes, that is right. The same one that had already told me they didn't deliver babies. Anyway, for want of a better suggestion and basic pure panic I took their advice and my wife was promptly delivered to a less than happy local hospital.
Once we arrived we were met by a nursing staff who went to put a foetal monitor on my wife but had to read the user manual (No. I am not joking) in order to connect it correctly. No doctor was to be found at the hospital so we hate to wait for a locum arrive. Within about half an hour(glad it wasn't urgent at all) in walked a attractive YOUNG doctor. She saw my wife sitting on the bed and promptly stated "OH F..K! I have never delivered a baby. With that my poor stressed wife almost fell off the bed....
It got worse though because trying to remain the calm head in an awkward situation I said to the doctor. "don't worry. I've been present for a few of these. I'll talk you through it." Unfortunately, she seemed to think I was serious....
Anyway, I digress. This is not important in K's diagnosis though it does give me a chance to show some of the stresses of living in what is now a major mining town in Queensland. The upshot was a 3 hour trip in an ambulance to a major hospital and my daughter being born 9 weeks early and with a valve that doesn't function properly in her heart.
Now the positive side of her being born with a heart problem. As a result of her heart valve problem she has to see a specialist on an ongoing basis.At her second visit to the specialist we took K with us. By some miracle when we walked into the doctor's room she spoke to K. When she received very little response from him she promptly turned to my wife and I and said "Don't worry about your daughter. I need to see him(K) far more urgently than I need to see your daughter." That ultimately led to K being diagnosed with Autism and my wife and I finally being able to put a finger on what was different about him in comparison with his brothers.
Let's Talk About Autism!!
Monday 20 September 2010
Saturday 18 September 2010
Why we know our little man as "K"
This is not as exciting or interesting as it seems. Nevertheless it does give an insight into a little bit of his early life.
When he was about 3 years old and prior to his Autism diagnosis our son whose name is Keiran recognised himself by his initial "K" rather than his name. He would not reply or take notice of being called Keiran. However, when you mentioned K he immediately paid attention.
This stemmed initially from recognising his name started with the letter K. He was too little to comprehend his name but he did realise that it started with K. Now that may seem minute but in our house his Mum's name also starts with K.
We first realised this fact by chance. We found K sitting at the home computer one morning having logged into his mum's ID on the computer. When asked why he did it he replied that it was his name(said as he was pointing to his mum's name). We actually thought it quite clever that, at 3 years of age, he had sat at the computer turned it on and logged into his mum's account. This was the time of dial up internet and he had also started up the internet account and opened internet explorer. All managed simply by having watched what we had been doing.
Hence we started referring to him as K to get his attention and basically it has stuck with him ever since though he now definitely recognises his name when spoken to.
Whenever someone says to him "Hey K" his face beams with importance.
Let's Talk About Autism!!
When he was about 3 years old and prior to his Autism diagnosis our son whose name is Keiran recognised himself by his initial "K" rather than his name. He would not reply or take notice of being called Keiran. However, when you mentioned K he immediately paid attention.
This stemmed initially from recognising his name started with the letter K. He was too little to comprehend his name but he did realise that it started with K. Now that may seem minute but in our house his Mum's name also starts with K.
We first realised this fact by chance. We found K sitting at the home computer one morning having logged into his mum's ID on the computer. When asked why he did it he replied that it was his name(said as he was pointing to his mum's name). We actually thought it quite clever that, at 3 years of age, he had sat at the computer turned it on and logged into his mum's account. This was the time of dial up internet and he had also started up the internet account and opened internet explorer. All managed simply by having watched what we had been doing.
Hence we started referring to him as K to get his attention and basically it has stuck with him ever since though he now definitely recognises his name when spoken to.
Whenever someone says to him "Hey K" his face beams with importance.
Let's Talk About Autism!!
Thursday 16 September 2010
Early Autistic Childhood Development
When K was first born and was still in hospital there were several signs that he was different from others though at the time we had no idea what that difference was.
Firstly, he was very lacklustre and reluctant to take to the breast to be fed. This of course led to it's own problems with him having to remain in hospital care for longer and him having to be fed via a tube down his throat. We were on constant watch as he lay in his humidi crib. During this time we found in his nappy on more than one occasion blood after he had emptied his bowels. This was extremely worrying when the doctors were unable to enlighten us as to why this was happening.
Once our precious little man arrived home we discovered he was very different to his brothers. Firstly, he would tire very easily when feeding. Thus he was putting on insufficient weight and was constantly having to be woken to try and finish feeding.
During this period he was also very restless and cried a lot. Probably from being continuously hungry we presumed given his sleeping during feeding tendencies.
As he grew older a few things became very apparent:
* We could not get him to sit upright at all;
* He never crawled but made what became known as a seal movement. Basically worming his way across the floor;
* He learnt to walk very late;
* He developed very little speech;
* He showed very little concentration for anything we tried to do with him;
* Any effort to feed him anything but breast milk was basically a waste of time;
At the age of 3 he contracted a very serious case of gastric. It took a lot out of him physically but most disturbing to us was that he basically laid on the lounge and waited for it to happen. Not once did he tell us he needed to go to the toilet. He just continuously dirtied his jocks. Added to this was his refusal to lift his head and take a drink of any kind. Thus he became very dehydrated and lost a good deal of weight.
At the time it was very worrying but as we know now he probably had absolutely no idea what was happening to him and we were obviously unable to communicate with him to alleviate his uncertainty.
None of these factors would be definitive in determining Autism but what it does do is enable us to look back on it and least now understand what was happening with him in these less than perfect times.
Let's Talk About Autism!!
Firstly, he was very lacklustre and reluctant to take to the breast to be fed. This of course led to it's own problems with him having to remain in hospital care for longer and him having to be fed via a tube down his throat. We were on constant watch as he lay in his humidi crib. During this time we found in his nappy on more than one occasion blood after he had emptied his bowels. This was extremely worrying when the doctors were unable to enlighten us as to why this was happening.
Once our precious little man arrived home we discovered he was very different to his brothers. Firstly, he would tire very easily when feeding. Thus he was putting on insufficient weight and was constantly having to be woken to try and finish feeding.
During this period he was also very restless and cried a lot. Probably from being continuously hungry we presumed given his sleeping during feeding tendencies.
As he grew older a few things became very apparent:
* We could not get him to sit upright at all;
* He never crawled but made what became known as a seal movement. Basically worming his way across the floor;
* He learnt to walk very late;
* He developed very little speech;
* He showed very little concentration for anything we tried to do with him;
* Any effort to feed him anything but breast milk was basically a waste of time;
At the age of 3 he contracted a very serious case of gastric. It took a lot out of him physically but most disturbing to us was that he basically laid on the lounge and waited for it to happen. Not once did he tell us he needed to go to the toilet. He just continuously dirtied his jocks. Added to this was his refusal to lift his head and take a drink of any kind. Thus he became very dehydrated and lost a good deal of weight.
At the time it was very worrying but as we know now he probably had absolutely no idea what was happening to him and we were obviously unable to communicate with him to alleviate his uncertainty.
None of these factors would be definitive in determining Autism but what it does do is enable us to look back on it and least now understand what was happening with him in these less than perfect times.
Let's Talk About Autism!!
Too "normal" yet too Autistic!!
I have chosen to jump ahead here a little because of a fairly major event that has transpired in the past week or so concerning K and an "altercation" that happened at school.
A little over a week ago my wife received a phone call from the principal of the school which K attends telling her that K had been in a fight at school. Obviously alarm bells immediately go off as although K is big for his age he is in no way capable of defending himself from a physical attack.
Luckily K was not injured at all. The problem for us arose from the differing reports we received from the school principal. When he phoned my wife he told her that K had retaliated to being sworn at and pushed around. However, when I rang the school I was informed that K had started the "fight" by grabbing a much older boy around the throat and leaving some very serious marks but "not to worry as the other boy's parents do not want to push the matter any further"....two entirely different stories from the very same principal. the man responsible for the welfare and education of my autistic son.
As a result of the fact we couldn't really get to the bottom of the facts as K didn't want to talk about it and from the conflicting stories from the principal we decided best to leave the situation rest. However, we asked the principal to contact us immediately if there were anymore issues or indeed if K's behaviour continued to deteriorate.
As of this morning neither my wife or I had received any calls.
As an aside to all these events K's class had been preparing for a camp to a nearby place where there are dinosaur fossils/tracks. Dinosaurs are K's "autistic obsession" and he was exceedingly excited at the prospect of the camp.
Unfortunately he will not get to experience that camp as his class teacher chose this evening, outside of school hours to phone home and inform us that K could no longer go on camp as his behaviour was so poor that the school could not cater for him on the trip. Strangely enough though the school had told my wife that he would be no problem on the trip and neither her or I have received any phone call from the school in the interim, as promised, outlining any deterioration in behaviour. Therefore we are left to wonder what has happened in these past 7 days that changed their minds??
Now, let me first say that this school has been exceptional to this point in their handling of Keiran and his current teacher the most understanding and helpful of all. We are also well aware of the challenges an autistic child can put on other people. That is why we spoke with the school when the camp was first brought up as we doubted whether it might be suitable for K being away from his family on such a potentially stimulating trip. They assured us he would be fine and they were comfortable with him attending. We gave them every opportunity to take the easy road out and not let him go on the trip. Instead they chose to allow him to get excited and then chop down his dream at the final hurdle.
At times like these there is no reasoning with him though I am so proud of him because in days gone by he would have thrown himself on the floor and banged his head as hard as possible. Tonight he had a little cry and then turned to his Mum and I and said "it's ok".
K is not going to school tomorrow. I have decided for one day at least the school does not deserve to have his presence. It is school holidays next week and K and Dad are off to those very same dinosaur tracks for probably a far better experience than he would have had with the school.
Let's Talk About Autism!!
A little over a week ago my wife received a phone call from the principal of the school which K attends telling her that K had been in a fight at school. Obviously alarm bells immediately go off as although K is big for his age he is in no way capable of defending himself from a physical attack.
Luckily K was not injured at all. The problem for us arose from the differing reports we received from the school principal. When he phoned my wife he told her that K had retaliated to being sworn at and pushed around. However, when I rang the school I was informed that K had started the "fight" by grabbing a much older boy around the throat and leaving some very serious marks but "not to worry as the other boy's parents do not want to push the matter any further"....two entirely different stories from the very same principal. the man responsible for the welfare and education of my autistic son.
As a result of the fact we couldn't really get to the bottom of the facts as K didn't want to talk about it and from the conflicting stories from the principal we decided best to leave the situation rest. However, we asked the principal to contact us immediately if there were anymore issues or indeed if K's behaviour continued to deteriorate.
As of this morning neither my wife or I had received any calls.
As an aside to all these events K's class had been preparing for a camp to a nearby place where there are dinosaur fossils/tracks. Dinosaurs are K's "autistic obsession" and he was exceedingly excited at the prospect of the camp.
Unfortunately he will not get to experience that camp as his class teacher chose this evening, outside of school hours to phone home and inform us that K could no longer go on camp as his behaviour was so poor that the school could not cater for him on the trip. Strangely enough though the school had told my wife that he would be no problem on the trip and neither her or I have received any phone call from the school in the interim, as promised, outlining any deterioration in behaviour. Therefore we are left to wonder what has happened in these past 7 days that changed their minds??
Now, let me first say that this school has been exceptional to this point in their handling of Keiran and his current teacher the most understanding and helpful of all. We are also well aware of the challenges an autistic child can put on other people. That is why we spoke with the school when the camp was first brought up as we doubted whether it might be suitable for K being away from his family on such a potentially stimulating trip. They assured us he would be fine and they were comfortable with him attending. We gave them every opportunity to take the easy road out and not let him go on the trip. Instead they chose to allow him to get excited and then chop down his dream at the final hurdle.
At times like these there is no reasoning with him though I am so proud of him because in days gone by he would have thrown himself on the floor and banged his head as hard as possible. Tonight he had a little cry and then turned to his Mum and I and said "it's ok".
K is not going to school tomorrow. I have decided for one day at least the school does not deserve to have his presence. It is school holidays next week and K and Dad are off to those very same dinosaur tracks for probably a far better experience than he would have had with the school.
Let's Talk About Autism!!
Tuesday 14 September 2010
A not so typical birth...
K was born in October 1999..
It was anything but a typical birth. He is my second wife and Is 3rd child. The previous two were boys and both deliveries went quite smoothly. In fact our second son almost arrived in the hospital car park he was that keen to come into the world.
K was very different. To begin with he was almost a week overdue and my poor wife was as "big as a house". She had suffered very badly from fluid retention around the ankles and had had gestational diabetes during the pregnancy.
When it finally came time for K to arrive he was far more stubborn than his older brothers. Firstly the sac surrounding him refused to break. The pressure of him trying to arrive before the sac had broken caused it to blow up in a bubble that eventually burst like a pricked water balloon spraying all over the bed as it did. My wife I think nearly feinted. She said later that the force had been that great she thought that K may have came out with the sac.
At this stage the midwife had a foetal monitor permanently attached around my wife's stomach. I am guessing that, though they were not telling us, they may have been a little concerned and what they were seeing on the monitors as they kept it in place right through the delivery. K's heart appeared to beat strongly throughout. Even as I could see his head coming into the world. Then I saw every parent's worst nightmare. He was as black as the ace of spades. He had entered the world but looked like nothing more than a dark bowl of jelly. He had stopped breathing.
It was a chaotic scene. My wife was yelling out "is he ok?" because she couldn't hear him crying. I am standing there reassuring her that he is fine. "Everything is great" I am telling her while watching the mid wife working frantically trying to breathe life into him and thinking that it looked like a lost cause. Miraculously after what was probably a few seconds but seemed to be about 5 hours he let out a scream. I can tell you that I have never been so relieved to hear a baby cry in my life. The midwife had just saved a life and spare a thought for the poor trainee she had with her. This was Michelle's first birthing experience. We ran into her about a month later in the shopping centre and when she saw how healthy K looked she just stood there and cried. She could not believe he had survived.
K went off to a humidy crib for the next month. I think the doctors told us about every second day that he wasn't showing any positive signs and that we should prepare ourselves for the prospect of him never going home. We now believe that he wasn't showing any visible improvement because of what we now know is Autism. 11 Years later he is the biggest kid in his class.
For mine. I to this day believe that his dying at birth is what caused his Autism but maybe that is just me wanting something to blame for what he has to go through.
Let's Talk About Autism!!
It was anything but a typical birth. He is my second wife and Is 3rd child. The previous two were boys and both deliveries went quite smoothly. In fact our second son almost arrived in the hospital car park he was that keen to come into the world.
K was very different. To begin with he was almost a week overdue and my poor wife was as "big as a house". She had suffered very badly from fluid retention around the ankles and had had gestational diabetes during the pregnancy.
When it finally came time for K to arrive he was far more stubborn than his older brothers. Firstly the sac surrounding him refused to break. The pressure of him trying to arrive before the sac had broken caused it to blow up in a bubble that eventually burst like a pricked water balloon spraying all over the bed as it did. My wife I think nearly feinted. She said later that the force had been that great she thought that K may have came out with the sac.
At this stage the midwife had a foetal monitor permanently attached around my wife's stomach. I am guessing that, though they were not telling us, they may have been a little concerned and what they were seeing on the monitors as they kept it in place right through the delivery. K's heart appeared to beat strongly throughout. Even as I could see his head coming into the world. Then I saw every parent's worst nightmare. He was as black as the ace of spades. He had entered the world but looked like nothing more than a dark bowl of jelly. He had stopped breathing.
It was a chaotic scene. My wife was yelling out "is he ok?" because she couldn't hear him crying. I am standing there reassuring her that he is fine. "Everything is great" I am telling her while watching the mid wife working frantically trying to breathe life into him and thinking that it looked like a lost cause. Miraculously after what was probably a few seconds but seemed to be about 5 hours he let out a scream. I can tell you that I have never been so relieved to hear a baby cry in my life. The midwife had just saved a life and spare a thought for the poor trainee she had with her. This was Michelle's first birthing experience. We ran into her about a month later in the shopping centre and when she saw how healthy K looked she just stood there and cried. She could not believe he had survived.
K went off to a humidy crib for the next month. I think the doctors told us about every second day that he wasn't showing any positive signs and that we should prepare ourselves for the prospect of him never going home. We now believe that he wasn't showing any visible improvement because of what we now know is Autism. 11 Years later he is the biggest kid in his class.
For mine. I to this day believe that his dying at birth is what caused his Autism but maybe that is just me wanting something to blame for what he has to go through.
Let's Talk About Autism!!
Autism and my son "K"
11 years ago a very special young boy was born in the Gold Coast hospital in Queensland, Australia. He is our middle son and he has Autism. His name is Keiran but I know him as "K" for reasons that I will outline along the way.
I have decided to take the time to write this blog in the hope that it helps the general public learn a little more about Autism and how it effects not only those diagnosed with Autism but also the extended family. It also maybe useful to others with a family member that is autistic.
The blog will outline events along the road in K's life. How we handled those events. Some well and some not so well.
K is high functioning autistic. His main problem in life, apart from the obvious , is his inability to interact well with others. Something that is most prevalent in autistic children. He is currently in Grade 5 at school and has 2 years before he has to leave primary(junior) school and go to the totally new environs of high school. That day frightens the hell out of me. I know in my heart that my little man will simply not cope with a "normal" high school at all no matter how well prepared we have him and unfortunately, in "the lucky country" that is Australia, there is no such thing as a high school for Autistic children. There are some great organisations and in later posts I will take the time to outline a few so that others may benefit from their help if needed.
From reading other people's Autism stories and blogs I know that, as far as having a child effected by autism goes, we are very lucky. K in a lot of respects would appear to be very "normal" for want of a better word.
Until K was diagnosed with Autism we knew nothing about it. Though that swiftly changed. What we did find though, and have continued to notice, is the genuine lack of understanding of Autism in our country. As well as the lack of a pathway for parents who find themselves with a child diagnosed with Autism. If your child has cancer or diabetes or any of the more common or widely acknowledged illnesses your local doctor can usually point you in the right direction of assistance.
On a personal note I am quite lucky in that I work for myself so am able to take the necessary time to assist K when needed. In the past few months K has become quite irritable and is constantly complaining of being unloved and hating everyone. That is most definitely not the case. He is quite possibly the most beautiful and precious human being on this planet, but it breaks my heart to not be able to snap my fingers and fix this autism problem for him.
What I can do for him though, and other parents and sufferers of Autism in this country, is to jump up and down until Autism has a very loud voice in this country and politicians and media take notice of Autism. I have a firm belief that Autism lags behind other illnesses with respect to support because it isn't a killer(thankfully). Everyone, myself included is horrified by childhood cancer and the like yet Autism appears to be a safer disease so garners less "respect" as an illness.
The first step for me is, through my own company if necessary, to ensure that when the 2013 school year rolls around my son has a specialist Autism high school to attend. Even if I do have to build it and fund it myself. That is a promise I make to him this very day.
I, in fact, hope to have it up and running for the 2012 school year. With any luck I will have a parcel of land secured by the end of January 2011. I will use this blog to keep everyone updated.
This first post has been a little rambling and I apologise for that. I will endeavour to be more succinct in future. However, I do find that I have so much to say that I just want to spit it all out at once.
Perhaps this blog helps me as much as it helps anyone else in getting things off my chest.
Please feel free at anytime to offer suggestions or criticisms. I have very broad shoulders and most definitely do not claim to have all the answers. What I do have is a determination to make this country a better place for sufferers of Autism.
Let's force people to pay attention.
"Let's Talk About Autism"
I
I have decided to take the time to write this blog in the hope that it helps the general public learn a little more about Autism and how it effects not only those diagnosed with Autism but also the extended family. It also maybe useful to others with a family member that is autistic.
The blog will outline events along the road in K's life. How we handled those events. Some well and some not so well.
K is high functioning autistic. His main problem in life, apart from the obvious , is his inability to interact well with others. Something that is most prevalent in autistic children. He is currently in Grade 5 at school and has 2 years before he has to leave primary(junior) school and go to the totally new environs of high school. That day frightens the hell out of me. I know in my heart that my little man will simply not cope with a "normal" high school at all no matter how well prepared we have him and unfortunately, in "the lucky country" that is Australia, there is no such thing as a high school for Autistic children. There are some great organisations and in later posts I will take the time to outline a few so that others may benefit from their help if needed.
From reading other people's Autism stories and blogs I know that, as far as having a child effected by autism goes, we are very lucky. K in a lot of respects would appear to be very "normal" for want of a better word.
Until K was diagnosed with Autism we knew nothing about it. Though that swiftly changed. What we did find though, and have continued to notice, is the genuine lack of understanding of Autism in our country. As well as the lack of a pathway for parents who find themselves with a child diagnosed with Autism. If your child has cancer or diabetes or any of the more common or widely acknowledged illnesses your local doctor can usually point you in the right direction of assistance.
On a personal note I am quite lucky in that I work for myself so am able to take the necessary time to assist K when needed. In the past few months K has become quite irritable and is constantly complaining of being unloved and hating everyone. That is most definitely not the case. He is quite possibly the most beautiful and precious human being on this planet, but it breaks my heart to not be able to snap my fingers and fix this autism problem for him.
What I can do for him though, and other parents and sufferers of Autism in this country, is to jump up and down until Autism has a very loud voice in this country and politicians and media take notice of Autism. I have a firm belief that Autism lags behind other illnesses with respect to support because it isn't a killer(thankfully). Everyone, myself included is horrified by childhood cancer and the like yet Autism appears to be a safer disease so garners less "respect" as an illness.
The first step for me is, through my own company if necessary, to ensure that when the 2013 school year rolls around my son has a specialist Autism high school to attend. Even if I do have to build it and fund it myself. That is a promise I make to him this very day.
I, in fact, hope to have it up and running for the 2012 school year. With any luck I will have a parcel of land secured by the end of January 2011. I will use this blog to keep everyone updated.
This first post has been a little rambling and I apologise for that. I will endeavour to be more succinct in future. However, I do find that I have so much to say that I just want to spit it all out at once.
Perhaps this blog helps me as much as it helps anyone else in getting things off my chest.
Please feel free at anytime to offer suggestions or criticisms. I have very broad shoulders and most definitely do not claim to have all the answers. What I do have is a determination to make this country a better place for sufferers of Autism.
Let's force people to pay attention.
"Let's Talk About Autism"
I
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