I had the chance to spend a little time with K and the other kids on Sunday and it gave me the chance to experience the positives and the negatives of autism development in K.
I have titled this "You Win Some You Lose Some". That is incorrect. you win some and you keep fighting damn hard to help your autistic kids with the rest is my motto. You never give up on trying to help them in any situation.
Firstly, to the positive. On Sunday we took K and his siblings shopping in a big shopping centre. Getting him in the centre was a major positive in itself. There was a time when we would not even attempt it. The mere thought of a shopping centre was so daunting for him. We know that because when K is stressed he "flaps his wings" as we call it. That is, he stands or runs around with his hands flapping up and down like a bird trying to take off. When it came to shopping centres that used to be more like the Concorde flying out of Heathrow. I can't even imagine how stressed he must have been.
After many a time taking him into the centre when it is almost deserted late at night or first thing in the morning and by constantly chatting with him and keeping him occupied constantly we have managed to get him to the stage where it now a far less daunting prospect.
First he progressed to walking around sticking to my side like glue with a vice grip a blacksmith would have been proud of on my hand. As he has got older he has progressed to walking close to you though we no longer hold hands very often. K likes to walk almost touching you side by side. I think far enough away yet close enough to you that should something unexpected happen safety is at hand.
On Sunday shopping in the centre was a very pleasant experience. Well as pleasant as shopping with 5 kids in tow can be..lol
K informed me that he is getting older. His way of saying it is my sister's birthday next week but don't forget me but also I think his way of letting me know he was coping. he is well aware of some of the things like the head banging etc that he used to do and now hardly does at all.He often says to me "I don't so that any more" in acknowledgement of what he has grown out of or learnt to adjust to. He is only 11 but I never cease learning from him. I think in a lot of ways he copes with his autism far better than I do.
Sunday produced only a couple of negatives and they were relatively mild. KFC was the chosen lunch destination(Yes, I know. Stop feeding the kids fatty foods but I think a treat never hurts every now and then)..K announces that he is coming to help me at the counter. That is because he is getting bigger and can do these things. I took the opportunity to suggest that he take the money and pay the girl for lunch. No real harm there I figured unless of course the girl gives us the wrong change in which case maths whiz K would probably have no problem pointing out(very vocally of course) her error. The girl needn't of feared though because there was no way he was taking the money and having to communicate on any level with that strange little girl in the Red KFC uniform. "No Dad. You pay. I don't know her"... no amount of cajoling on my part would make a speck of difference.
With adventure number 1 at the KFC counter averted successfully we sat down to lunch. K again tells me he is getting bigger. In fact "I am going to be 12 this year. I am nearly a teenager"..very proud of himself. I weighed in again, testing for a reaction this time.
"That is right mate. You are getting big. When you get to be a teenager you will get to go to high school like your big brothers. Won't that be cool?" I got pretty much the response I expected.. "No! I don't think I will like it there."
As the day was going quite well I chose to cut my losses and not fear upsetting him. So I said to him that is OK Dad will help you when it comes time for high school. To which he replied "Cool!". Which loosely translated means..."Good. Let's change the subject."
Thankfully I have 2 years to solve that problem.
LET'S TALK ABOUT AUTISM!!
Tuesday 25 January 2011
"School was awesome Dad"
Today marked the beginning of the 2011 school year for 489000 State School Students. Now on current ratios amongst those students would be approximately 4500 students with Autism. So let's spare a thought for the parents of all those autism children today as they hope that 2011 will be as stress free as possible for their kids.
Amongst those numbers are 60000 Prep school students starting their very first exciting adventure into the big wide world without Mum and Dad for the first time. Let's especially spare a thought for the approximate 450 of those children who(again on today's ratios) are autistic. I am sparing a moment for those amongst that 450 children who have not yet been diagnosed with autism and who are probably already finding school a very daunting and scary place. My thoughts go out to these kids because this day 6 years ago K walked through the school gates for the very first time. he was one of those 450 autistic children and, more importantly, he was one of those that at that stage were yet to be diagnosed.
6 years on and his mother and I are far more wise about autism but at that time we had no idea what it meant let alone that our beautiful boy had it.
This morning K walked boldly through those same gates again. this time he was going into Year 6. WOW! My little man isn't so little anymore. In fact he is big enough to look his mum squarely in the eye though as most autism parents would understand that doesn't happen very often.
He told me on the weekend that he was excited. I like school Dad. That is a great relief at least because, as followers of this page would know, K had a few issues at school towards the end of last school year.
Anyway, off he went with his little sister, who after her own early life battles of being 9 weeks premature and having a non functioning valve in her heart(see "An Accidental Diagnosis" earlier in this blog) walked boldly through those same gates into Year 3. Daddy's little princess turns 8 next Thursday.
Meanwhile Dad spent the day on tender hooks waiting and hoping that the phone wouldn't ring on Day 1 saying we had a problem. the phone never rang...PHEW!!
At 3.15(yes, barely enough time for them to get home) I rang to see how the first day of their new adventure had been. Caitlyn comes on first and tells me all about her new teacher and her new friend and how cool the "Barbie" pencils Dad had bought her were.
Then on comes K and me with the obvious question:
"How was school K?"
The response....
"SCHOOL WAS AWESOME DAD!!"
Now K's "AWESOME" is the equivalent of me not getting a parking ticket but to to him it means he had a stress free day and that is all I and a lot of autism parents are asking for when it comes to school...
That was day 1. It was a great day. Only 39 weeks and 4 more days to go....but who is counting?
To all parents of autism students going off to school in the next week or so, and especially for those doing it for the first time. I hope you all have a great year and I echo that for their parents. My hat is off to each and every one of you!!
LET'S TALK ABOUT AUTISM!!
Amongst those numbers are 60000 Prep school students starting their very first exciting adventure into the big wide world without Mum and Dad for the first time. Let's especially spare a thought for the approximate 450 of those children who(again on today's ratios) are autistic. I am sparing a moment for those amongst that 450 children who have not yet been diagnosed with autism and who are probably already finding school a very daunting and scary place. My thoughts go out to these kids because this day 6 years ago K walked through the school gates for the very first time. he was one of those 450 autistic children and, more importantly, he was one of those that at that stage were yet to be diagnosed.
6 years on and his mother and I are far more wise about autism but at that time we had no idea what it meant let alone that our beautiful boy had it.
This morning K walked boldly through those same gates again. this time he was going into Year 6. WOW! My little man isn't so little anymore. In fact he is big enough to look his mum squarely in the eye though as most autism parents would understand that doesn't happen very often.
He told me on the weekend that he was excited. I like school Dad. That is a great relief at least because, as followers of this page would know, K had a few issues at school towards the end of last school year.
Anyway, off he went with his little sister, who after her own early life battles of being 9 weeks premature and having a non functioning valve in her heart(see "An Accidental Diagnosis" earlier in this blog) walked boldly through those same gates into Year 3. Daddy's little princess turns 8 next Thursday.
Meanwhile Dad spent the day on tender hooks waiting and hoping that the phone wouldn't ring on Day 1 saying we had a problem. the phone never rang...PHEW!!
At 3.15(yes, barely enough time for them to get home) I rang to see how the first day of their new adventure had been. Caitlyn comes on first and tells me all about her new teacher and her new friend and how cool the "Barbie" pencils Dad had bought her were.
Then on comes K and me with the obvious question:
"How was school K?"
The response....
"SCHOOL WAS AWESOME DAD!!"
Now K's "AWESOME" is the equivalent of me not getting a parking ticket but to to him it means he had a stress free day and that is all I and a lot of autism parents are asking for when it comes to school...
That was day 1. It was a great day. Only 39 weeks and 4 more days to go....but who is counting?
To all parents of autism students going off to school in the next week or so, and especially for those doing it for the first time. I hope you all have a great year and I echo that for their parents. My hat is off to each and every one of you!!
LET'S TALK ABOUT AUTISM!!
Autism in Australia blog back in action!
Hi Guys
It has been a while since I have posted anything on the blog...
Firstly, let me apologise for that.
The reason I haven't posted for some time is, as some of you are aware, my wife and I are divorced. Well suffice to say that the past couple of months have not exactly been cordial with regards to children etc. Divorce and separation puts different stresses on different people and we all act differently. This is not the time or place for that.
Put simply, due to the above situation, up until last weekend I had not seen K for a few months. I was lucky enough to see him and my other children at the weekend briefly and look forward to a great 2011.
So, I am back bigger and better than ever to sprout about the cause dearest to all our hearts here...AUTISM.
So.... Let's Talk About Autism!!
It has been a while since I have posted anything on the blog...
Firstly, let me apologise for that.
The reason I haven't posted for some time is, as some of you are aware, my wife and I are divorced. Well suffice to say that the past couple of months have not exactly been cordial with regards to children etc. Divorce and separation puts different stresses on different people and we all act differently. This is not the time or place for that.
Put simply, due to the above situation, up until last weekend I had not seen K for a few months. I was lucky enough to see him and my other children at the weekend briefly and look forward to a great 2011.
So, I am back bigger and better than ever to sprout about the cause dearest to all our hearts here...AUTISM.
So.... Let's Talk About Autism!!
Monday 20 September 2010
Autism - An accidental diagnosis
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!!
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!!
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!!
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