After writing that I have a disabled son, I thought I should clarify... most of my friends and family would be likely to say - no, that's not disabled... he is able bodied, and smart as a tack.
Which is true - he is. His dexterity and love of climbing has been the cause of concern on many an occasion - 2 storey house are very interesting.. but we worked on that, he has trees he can climb in the yard, and we made a tree house, as well as a baby gate on the outside of the stairs going to the balcony, and some netting under the edge of those stairs - it all helps :)
And - he is smart, he knows exactly what you are talking about most times... you can tell, by his behaviour, and that cheeky smirk that often develops when he knows he's pushing the boundaries, he also has great interest is stars, the universe, words, and other things.
However, what I am referring to, is the fact that he will need assistance, probably for most of his life. Assistance in getting ready for a day, in achieveing, having direction and focus. I know a lot of that could be for any child, but let me explain. He is currently at prep, the year before grade 1 at school. The first term of school her had one teacher assisting him get into routine, so I wasn't really aware of how involved it is. At the end of the first term, I was asked to come and help as that teacher won't be available for the hours she was previously doing. Because, for example, he has trouble in the routine of sitting and listening to a teacher... if it's not directed directly to him, he would prefer to get up and pace, which disrupts the rest of the class, and he has tanty's about not being allowed to do what he wants... coz at home, there was no rigid defined structure.. he has lots of freedom to do whta he wants when he wants.
For him to do a simple activity, like a collage... he needs someone sitting next to him, to help him cutting, to show him gluing, to help him focus, and to help him stick the things down. I did this at home the other day - his 3 yr old sister was fine... he needed the assistance, because he was more fascinated with how the glue had little bubbles in it when you squeezed it onto the paper, then actually putting something onto the glue to stick it down. Now really - it was interesting what he was doing, but not the object of the exercise... and so it will be that way at school, and so he needs assistance, and so he is not capable... and so disabled (or perhaps unable would be better?)
Whatever the case... it has really brought home to me that he has extra needs, and we as his parents need to seek ways to assist him to get those fulfilled, without impacting too much on us, on our capacity emotionally, on our capacity of time for each other, and for the other children... and you know what... I think we will likely get the balance right 1/100th of the time.. the rest of the time, it's purely grace assisting our family along.
Friday, April 21, 2006
Monday, April 17, 2006
Some of the 'facts'
Well, after finding out we had Autism in our family... we went 'researching'.. and very quickly got overloaded, there is LOTS of information about this condition.
I always boil it down to simply, a lack of ability to socialise. Of course - it's a heck of a lot more involved than that.. but that's the nutshell I tell people. In that nutshell come behaviours, things people may think are rude.. yet to someone with autism, it makes sense - why do I have to look you in the eyes? I can hear your voice without that - yet 85% of our communication is by body language, and facial imagery.
I recently came across a story of people researching human faces and gestures - they came up with approx 3,000,000 various faces - most of them non-descript / silly / pulling-a- face, and boiled it down to 3,000 definitive expressions that show emotions and what the other person may really be feeling - including the 'micro' expressions that are on someone's face for 1/10th of a second, but show how someone really feels... scared when trying to be brave... 'poker-face' when trying to lie.. etc.
So, to someone who can't 'read' faces... and doesn't want to necessarily look you in the eyes all the time - how much are they missing out in communication? Tonnes! No wonder they have issues socialising.
From another site "Autism is a neurobiological disorder that affects social connection and intellectual comprehension, becoming apparent by age three, although many people are diagnosed years later. People with autism have unusual and repetitive behaviors, and absent or peculiar speech. They’re often plagued by sensory overload, during which competing streams of thoughts, sounds, lights and noises flash simultaneously through the brain. It can be like living in a casino, multiplied by fifty. It has no known cause, and no cure. Autism is a spectrum disorder, ranging from mild to profound disability."
This word has only hit home in the past few days. For the past 3 years, I've been living a life of someone who has a child who is fairly normal.. just a little delayed (he's 5.. and we have yet to hear a full setence from his lips... he can just put 2 words together comfortably... only recently do I have any idea of what his voice may be like... for up until now, it's been mostly babble, and the occasional favourite phrase 'To infinity and beyond', thankyou the makers of Toy Story - we have a common ground for our son.
So... I have a disabled child - brought home more clearly to me from the fact that he isn't coping with a full day at pre-school, and they have asked me to either cut his days, or come and be a support person for him in the school grounds. At first, the 'I will do anything for my child' came out - of course I will support him, he needs to be here for the best chances for him for socialisation. Then came the 'I need as well' - I need my space, I need my time for me, I need some time without my children... I am swamped and overwhelmed.
Then came the acceptance 'I have a disabled child'... me... I personally have a child who is not able to do things other children do, who cannot manage a regular routine, who cannot focus, who needs assistance to get through a day. Then... gratitude 'How many other parents get asked to come and spend more time with their child by their school?' Seriously.. its a responsability and a thrill. Of course.. if I hadn't been retrenched in the beginning of the year, and allready working from home part-time, we would also be faced with the 'one of us needs to be at home full time for this child special needs'... another thing for me to be grateful about.
Ahhhh so many emotions about a simple thing - I'm convinced it's genetic, 2 generations back, my Great Uncle was known for beiing a tinkerer - always in the back shed making things - not socialising... invented some amazing things. Autistic traits... from what little I have heard about him - yet who really knows, they weren't diagnosing such things back then. My Aunt, has Bi-polar.. thought originally they thought it was Asperger's - the speaking cousin of Austism. My son, diagnosed a year ago, and my nephew - also diagnosed, yet his parents are still in denial, he recently turned 8.
I think one of the hardest things about Autism is the not knowing - we don't know exactly why it happens, and it's so easy to look at ourselves and say - am I defective? There is no 'cure' its' genes, and it's not up to us to manipulate these things. There is also so much guilt by association, it's hard to look at this child each day and rejoice in them, yet rejoice we do.. in every little word, little phrase, in every beautiful light-up-the-whole-face smile. Tonight, after dinner... we had friends over for a bbq, we were just sitting and chatting, and this boy sitting beside me just started singing - twinkle, twinkle.. and sang pretty much the whole song, with all the words... the first time I've heard it from him so clearly... and that was a moment of rejoicing.
I always boil it down to simply, a lack of ability to socialise. Of course - it's a heck of a lot more involved than that.. but that's the nutshell I tell people. In that nutshell come behaviours, things people may think are rude.. yet to someone with autism, it makes sense - why do I have to look you in the eyes? I can hear your voice without that - yet 85% of our communication is by body language, and facial imagery.
I recently came across a story of people researching human faces and gestures - they came up with approx 3,000,000 various faces - most of them non-descript / silly / pulling-a- face, and boiled it down to 3,000 definitive expressions that show emotions and what the other person may really be feeling - including the 'micro' expressions that are on someone's face for 1/10th of a second, but show how someone really feels... scared when trying to be brave... 'poker-face' when trying to lie.. etc.
So, to someone who can't 'read' faces... and doesn't want to necessarily look you in the eyes all the time - how much are they missing out in communication? Tonnes! No wonder they have issues socialising.
From another site "Autism is a neurobiological disorder that affects social connection and intellectual comprehension, becoming apparent by age three, although many people are diagnosed years later. People with autism have unusual and repetitive behaviors, and absent or peculiar speech. They’re often plagued by sensory overload, during which competing streams of thoughts, sounds, lights and noises flash simultaneously through the brain. It can be like living in a casino, multiplied by fifty. It has no known cause, and no cure. Autism is a spectrum disorder, ranging from mild to profound disability."
This word has only hit home in the past few days. For the past 3 years, I've been living a life of someone who has a child who is fairly normal.. just a little delayed (he's 5.. and we have yet to hear a full setence from his lips... he can just put 2 words together comfortably... only recently do I have any idea of what his voice may be like... for up until now, it's been mostly babble, and the occasional favourite phrase 'To infinity and beyond', thankyou the makers of Toy Story - we have a common ground for our son.
So... I have a disabled child - brought home more clearly to me from the fact that he isn't coping with a full day at pre-school, and they have asked me to either cut his days, or come and be a support person for him in the school grounds. At first, the 'I will do anything for my child' came out - of course I will support him, he needs to be here for the best chances for him for socialisation. Then came the 'I need as well' - I need my space, I need my time for me, I need some time without my children... I am swamped and overwhelmed.
Then came the acceptance 'I have a disabled child'... me... I personally have a child who is not able to do things other children do, who cannot manage a regular routine, who cannot focus, who needs assistance to get through a day. Then... gratitude 'How many other parents get asked to come and spend more time with their child by their school?' Seriously.. its a responsability and a thrill. Of course.. if I hadn't been retrenched in the beginning of the year, and allready working from home part-time, we would also be faced with the 'one of us needs to be at home full time for this child special needs'... another thing for me to be grateful about.
Ahhhh so many emotions about a simple thing - I'm convinced it's genetic, 2 generations back, my Great Uncle was known for beiing a tinkerer - always in the back shed making things - not socialising... invented some amazing things. Autistic traits... from what little I have heard about him - yet who really knows, they weren't diagnosing such things back then. My Aunt, has Bi-polar.. thought originally they thought it was Asperger's - the speaking cousin of Austism. My son, diagnosed a year ago, and my nephew - also diagnosed, yet his parents are still in denial, he recently turned 8.
I think one of the hardest things about Autism is the not knowing - we don't know exactly why it happens, and it's so easy to look at ourselves and say - am I defective? There is no 'cure' its' genes, and it's not up to us to manipulate these things. There is also so much guilt by association, it's hard to look at this child each day and rejoice in them, yet rejoice we do.. in every little word, little phrase, in every beautiful light-up-the-whole-face smile. Tonight, after dinner... we had friends over for a bbq, we were just sitting and chatting, and this boy sitting beside me just started singing - twinkle, twinkle.. and sang pretty much the whole song, with all the words... the first time I've heard it from him so clearly... and that was a moment of rejoicing.
Friday, April 14, 2006
Reality Strikes
Firstly a little background, we have had knowledge of autism in our family for almost 3 yrs now... life before knowledge and life after are very different.
At the time of the realization... we were married almost 10 yrs, had 2 beautiful boys, 2yrs old and 4 yrs ... and our 5 month old girl. Our 2 yr old we had been questioning his behaviour for some time... he seemed to not hear very well - so we went through a battery of hearing tests, with all clear being the results every time.
We had also been to speech therapists, and a variety of other experts with no answers... he just seemed a little delayed in speech and in learning. He also had little capacity for social skills, and didn't look us in the eye much, didn't desire to talk, couldn't point at things to express his interest or desire, he was very happy... just off in his own world.
Finally a peadatrition suggested we attend a university project workshop which was addressing children with delays in learning and social skills. The first day of the workshop didn't mean a great deal for our family... just information about what it means to communicate, and how we go about doing it.
Day 2 of the workshop started the same as the last day... not much that I felt was really relevant for us. Then we saw some videos of Autistic Children and how they interacted and played. The shock was immense - we saw our son in these videos... this is what we had in our family.
We did lots of research into different hings in those early days and months - to the point of oversaturation. One thing I definitely hold to and will for all his life is food... gluten and dairy make a HUGE HUGE HUGE difference for his capacity to learn, socialise, and understand, but I'll go into that more later.
I think we went really well for about 3 months... then fell over, and now we are 3 yrs down the track... and finally coming to terms with what we are really facing, what needs, desires, expectations, and abilities our child has... from speech, to social interaction, to crowds, to events, to schooling.. its an on-going adventure... but I think I am finally ready for the next step.
We have just celebrated our 13yr Anniversary and our kids are now 7, 5 and 3 years old.
I've never written a blog before, and I have no idea how often I will update this, but I'm writing this blog... for 2 reasons.
1 is for me - to have an outlet, and a chance to get some of these thoughts I'm dealing with out of my head.
2 is for you - the other families who have autism in them somewhere.. and just want to know you are not alone, esp on those days where you feel it the worst.
At the time of the realization... we were married almost 10 yrs, had 2 beautiful boys, 2yrs old and 4 yrs ... and our 5 month old girl. Our 2 yr old we had been questioning his behaviour for some time... he seemed to not hear very well - so we went through a battery of hearing tests, with all clear being the results every time.
We had also been to speech therapists, and a variety of other experts with no answers... he just seemed a little delayed in speech and in learning. He also had little capacity for social skills, and didn't look us in the eye much, didn't desire to talk, couldn't point at things to express his interest or desire, he was very happy... just off in his own world.
Finally a peadatrition suggested we attend a university project workshop which was addressing children with delays in learning and social skills. The first day of the workshop didn't mean a great deal for our family... just information about what it means to communicate, and how we go about doing it.
Day 2 of the workshop started the same as the last day... not much that I felt was really relevant for us. Then we saw some videos of Autistic Children and how they interacted and played. The shock was immense - we saw our son in these videos... this is what we had in our family.
We did lots of research into different hings in those early days and months - to the point of oversaturation. One thing I definitely hold to and will for all his life is food... gluten and dairy make a HUGE HUGE HUGE difference for his capacity to learn, socialise, and understand, but I'll go into that more later.
I think we went really well for about 3 months... then fell over, and now we are 3 yrs down the track... and finally coming to terms with what we are really facing, what needs, desires, expectations, and abilities our child has... from speech, to social interaction, to crowds, to events, to schooling.. its an on-going adventure... but I think I am finally ready for the next step.
We have just celebrated our 13yr Anniversary and our kids are now 7, 5 and 3 years old.
I've never written a blog before, and I have no idea how often I will update this, but I'm writing this blog... for 2 reasons.
1 is for me - to have an outlet, and a chance to get some of these thoughts I'm dealing with out of my head.
2 is for you - the other families who have autism in them somewhere.. and just want to know you are not alone, esp on those days where you feel it the worst.
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