The blog is a strange thing in some ways .... it's a public diary. Unlike a diary though, I can't be completely free because the purpose is to inform the followers about Kaylia and her impact in our lives. The content also has to filtered because it's open to public scrutiny .... Big Brother Is Watching (apols to 1984) ... and I don't mean you Pete!
Saturday, February 25, 2012
Friday, February 24, 2012
#522 Friday 24 February
Ugh .... it's 6:30am and she's wet the bed. It doesn't happen often but it's not pleasant.
Yesterday my car (the car that Tina gave us when she went home to Germany) decided to have an immediate terminal illness! The brakes wore out .... metal on metal! The car had some other serious diseases and surgery wasn't an option .... So ... bye bye Nissan ... hello Holden. I haven't had a Holden since I had the FJ in 1971!
Those of you who have experienced Kaylia in the past will be really pleased to see her progress with speech. She works hard to get the sound of the words correct ..... she is reading well ... she isn't up to her age ability level yet but I feel as though it will come.
When she arrives at school, she is very happy and she knows all the staff so she hugs whoever happens to be there!
Yesterday my car (the car that Tina gave us when she went home to Germany) decided to have an immediate terminal illness! The brakes wore out .... metal on metal! The car had some other serious diseases and surgery wasn't an option .... So ... bye bye Nissan ... hello Holden. I haven't had a Holden since I had the FJ in 1971!
Those of you who have experienced Kaylia in the past will be really pleased to see her progress with speech. She works hard to get the sound of the words correct ..... she is reading well ... she isn't up to her age ability level yet but I feel as though it will come.
When she arrives at school, she is very happy and she knows all the staff so she hugs whoever happens to be there!
Thursday, February 23, 2012
#521 Thursday 23 February
Interesting night last night ..... Not!
Naomi was very late home after uni and I had a torrid time trying to settle Kaylia to sleep. Then she was out like a light as soon as Naomi arrived home! Traitor!
Kaylia had also given Kat a hard time in the afternoon. After a de-brief it sounded more like a temper tantrum than a melt-down. The two situations need to be handled very differently. ... it can be hard!
Today? Kaylia is to have an ECG at midday .... it's a routine check for kids on the medication regime she's on.
She was perfect! (as usual)
Naomi was very late home after uni and I had a torrid time trying to settle Kaylia to sleep. Then she was out like a light as soon as Naomi arrived home! Traitor!
Kaylia had also given Kat a hard time in the afternoon. After a de-brief it sounded more like a temper tantrum than a melt-down. The two situations need to be handled very differently. ... it can be hard!
Today? Kaylia is to have an ECG at midday .... it's a routine check for kids on the medication regime she's on.
She was perfect! (as usual)
Wednesday, February 22, 2012
#520 Wednesday 22 February
Yesterday (during therapy) Kaylia had quite a bad melt-down. This is quite unsual these days (.... thank goodness!) I don't think she has had anything as bad since sometime last year. I think it was partly triggered by stress from the room being too warm. (The a/c was off.)
A top up of Lovan .... and a trip in the car soon had her right again.
This .... and some other things .... have reminded us just how much life has improved for us compared with a couple of years ago.
We're currently battling a routine that we have allowed to creep in ..... After therapy we have been having tea at Nandos. Now that (very pleasant) habit has become a big thing with Kaylia and she is wanting Nandos at other times as well! So we're trying to find some different ways of breaking the routine.
Today I made a mistake at work .... it was very pleasant! I had previous calculated the tax due to be paid .... and when it came time to lodge the BAS online, I discovered that I had made an arithmetic error and the actual tax due was half the tax I had calculated. A very welcome mistake!
A top up of Lovan .... and a trip in the car soon had her right again.
This .... and some other things .... have reminded us just how much life has improved for us compared with a couple of years ago.
We're currently battling a routine that we have allowed to creep in ..... After therapy we have been having tea at Nandos. Now that (very pleasant) habit has become a big thing with Kaylia and she is wanting Nandos at other times as well! So we're trying to find some different ways of breaking the routine.
Today I made a mistake at work .... it was very pleasant! I had previous calculated the tax due to be paid .... and when it came time to lodge the BAS online, I discovered that I had made an arithmetic error and the actual tax due was half the tax I had calculated. A very welcome mistake!
Tuesday, February 21, 2012
#519 Tuesday 21 February
This article is pasted from
http://www.dailylife.com.au/
For parents or other people who are concerned about autism treatment in Australia, this is a very worrying development.
-------------------------------------------------------------------------------------------------------
A year from now, my six-year-old son will no longer have autism. But
I have not discovered a miracle cure - nor do I feel like jumping for
joy.
The criteria for an autism diagnosis, as defined by the
authors of the Diagnostic and Statistical Manual of Mental Disorders
(DSM), is about to change so dramatically that parents across the world
are fearful children classified as having high-functioning autism,
Asperger's syndrome or pervasive development disorder are likely to lose
their diagnosis - and with it, their therapy and educational
entitlements.
It is teachers who should be complaining the loudest.
They will be the ones left to manage untreated children with less help
from special needs staff because fewer children will be classified as
special needs.
Parents and psychologists fear the changes to the
diagnostic criteria are driven by an American government wanting to
reduce the rate at which autism is diagnosed - now one in 100 - so as to
reduce the cost of supporting services which help children with an
autism spectrum disorder (ASD) fit into society, and the classroom.
The clinicians on the DSM taskforce claim changes to the
manual will not change the rate of diagnosis. They argue they are simply
trying to reduce the subcategories and cover all afflicted children
with one blanket label, autism spectrum disorder, to achieve better
clarity on diagnosis.
But the devil lies in the detail of the changes between
the present manual and the proposed new manual, to come into effect next
year, and experts fear a large drop in the number of diagnoses.
A diagnosis of ASD, which can include the subcategories
such as Asperger's, is given if a child ticks enough boxes across three
categories of impairment - social interaction, speech and language, and
behaviour. Each category has four ''boxes''.
Now, a diagnosis of ASD is allowed if six of the 12
impairments are present, two of which must be impairments in social
interaction. Under the proposed changes, a child will need to have all
four social interaction deficiencies before a diagnosis is given. In the
second category, communication, a diagnosis now requires one
deficiency; under the changes, it will require two.
According to Professor Allen Francis, the chairman of the
taskforce responsible for the present manual, to gain a diagnosis,
there are 2688 possible combinations of the 12 deficiencies. However,
under the changes, there will be only six possible combinations. ''The
method of deriving the new DSM-5 criteria is suspect and its claim to be
rate neutral seems simply absurd,'' Frances wrote in the Huffington
Post.
And he is dead right. Diagnosis rates, especially for
high-functioning and Asperger's children, will fall dramatically. I
know my son ticks six of those 12 boxes, but under DSM-5, he will not
tick the right six boxes. He will be reclassified as having a ''social
disorder'', not an autism spectrum disorder. It won't change his
life; he has used his funding and successfully made the transition to
mainstream school.
But what will it do to an equally afflicted child who
fails to get a diagnosis in future? Will he learn to say ''mum'' and
look her in the eye? Will he learn to use his nice voice when talking to
his friends? Will he learn to share toys? Will he learn to cope with a
routine being thrown out? Will he be able to sit still in class, listen
and learn? Without therapy, probably not.
In Australia, a child diagnosed with any ASD is entitled
to funding of $12,000 over two years up to age six, paid directly to
service providers of multidisciplinary therapy. Such therapy may include
applied behaviour analysis (ABA) therapy, occupational therapy, and
speech therapy. It doesn't cover the cost, but it helps. The result of
the therapy, especially ABA, is priceless, often getting autistic
children across the line into mainstream schooling.
This funding means children are getting help when it
helps them most - ages two to five, when the brain is described as being
more ''plastic'' and thus more influenced by therapy. By the time they
get to school, provided they have their two years of therapy, a child
with autism but a normal IQ is often able to function in a normal
classroom environment (as long as no one moves his pencils out of
place). ABA teaches children to behave appropriately through the
consistent and exhaustive reinforcement of good behaviour over a
sustained period. It works.
Take therapy away, and Kindy Blue turns into Kindy Beirut pretty quickly.
Teachers and all parents should picture this: in 2018, a
teacher could be dealing with a child with untreated ''social disorder''
rolling around the floor and refusing to sit at his desk, not teaching
the other 19 neurologically normal children in the room.
The time to speak up is now.
---------------------
Ian again ...
My little bit of research says that Australia can either follow the US (as above) .... or use the European standards. These are more rational.
The decision is a political one .... so it is indeed the time to speak up!
http://www.dailylife.com.au/
For parents or other people who are concerned about autism treatment in Australia, this is a very worrying development.
-------------------------------------------------------------------------------------------------------
A year from now, my six-year-old son will no longer have autism. But
I have not discovered a miracle cure - nor do I feel like jumping for
joy.
The criteria for an autism diagnosis, as defined by the
authors of the Diagnostic and Statistical Manual of Mental Disorders
(DSM), is about to change so dramatically that parents across the world
are fearful children classified as having high-functioning autism,
Asperger's syndrome or pervasive development disorder are likely to lose
their diagnosis - and with it, their therapy and educational
entitlements.
It is teachers who should be complaining the loudest.
They will be the ones left to manage untreated children with less help
from special needs staff because fewer children will be classified as
special needs.
Parents and psychologists fear the changes to the
diagnostic criteria are driven by an American government wanting to
reduce the rate at which autism is diagnosed - now one in 100 - so as to
reduce the cost of supporting services which help children with an
autism spectrum disorder (ASD) fit into society, and the classroom.
The clinicians on the DSM taskforce claim changes to the
manual will not change the rate of diagnosis. They argue they are simply
trying to reduce the subcategories and cover all afflicted children
with one blanket label, autism spectrum disorder, to achieve better
clarity on diagnosis.
But the devil lies in the detail of the changes between
the present manual and the proposed new manual, to come into effect next
year, and experts fear a large drop in the number of diagnoses.
A diagnosis of ASD, which can include the subcategories
such as Asperger's, is given if a child ticks enough boxes across three
categories of impairment - social interaction, speech and language, and
behaviour. Each category has four ''boxes''.
Now, a diagnosis of ASD is allowed if six of the 12
impairments are present, two of which must be impairments in social
interaction. Under the proposed changes, a child will need to have all
four social interaction deficiencies before a diagnosis is given. In the
second category, communication, a diagnosis now requires one
deficiency; under the changes, it will require two.
According to Professor Allen Francis, the chairman of the
taskforce responsible for the present manual, to gain a diagnosis,
there are 2688 possible combinations of the 12 deficiencies. However,
under the changes, there will be only six possible combinations. ''The
method of deriving the new DSM-5 criteria is suspect and its claim to be
rate neutral seems simply absurd,'' Frances wrote in the Huffington
Post.
And he is dead right. Diagnosis rates, especially for
high-functioning and Asperger's children, will fall dramatically. I
know my son ticks six of those 12 boxes, but under DSM-5, he will not
tick the right six boxes. He will be reclassified as having a ''social
disorder'', not an autism spectrum disorder. It won't change his
life; he has used his funding and successfully made the transition to
mainstream school.
But what will it do to an equally afflicted child who
fails to get a diagnosis in future? Will he learn to say ''mum'' and
look her in the eye? Will he learn to use his nice voice when talking to
his friends? Will he learn to share toys? Will he learn to cope with a
routine being thrown out? Will he be able to sit still in class, listen
and learn? Without therapy, probably not.
In Australia, a child diagnosed with any ASD is entitled
to funding of $12,000 over two years up to age six, paid directly to
service providers of multidisciplinary therapy. Such therapy may include
applied behaviour analysis (ABA) therapy, occupational therapy, and
speech therapy. It doesn't cover the cost, but it helps. The result of
the therapy, especially ABA, is priceless, often getting autistic
children across the line into mainstream schooling.
This funding means children are getting help when it
helps them most - ages two to five, when the brain is described as being
more ''plastic'' and thus more influenced by therapy. By the time they
get to school, provided they have their two years of therapy, a child
with autism but a normal IQ is often able to function in a normal
classroom environment (as long as no one moves his pencils out of
place). ABA teaches children to behave appropriately through the
consistent and exhaustive reinforcement of good behaviour over a
sustained period. It works.
Take therapy away, and Kindy Blue turns into Kindy Beirut pretty quickly.
Teachers and all parents should picture this: in 2018, a
teacher could be dealing with a child with untreated ''social disorder''
rolling around the floor and refusing to sit at his desk, not teaching
the other 19 neurologically normal children in the room.
The time to speak up is now.
---------------------
Ian again ...
My little bit of research says that Australia can either follow the US (as above) .... or use the European standards. These are more rational.
The decision is a political one .... so it is indeed the time to speak up!
Monday, February 20, 2012
#518 Monday 20 February
Both Naomi and I are suffering sleep deprivation today .... Kaylia has a healing scratch on her foot .... and it's at the itchy stage. So from 4am on she tried to scratch it in her sleep ... and while doing so managed to prod and poke us ... and we had to prevent her scratching it too much. (the auty problem of lack of sensation means that she can injure herself while scratching)
By 3:30 I was asleep at my desk!
By 3:30 I was asleep at my desk!
Sunday, February 19, 2012
#517 Sunday 19 February
Midday .... back from the lake. Kaylia swam like a fish as usual. She delights in doing underwater somersaults.
While in the water, Kaylia saw some people with a BBQ ... quite a distance away. So she was soon asking for "sausages". Now this may seem quite normal .... that's my point! It's not that long ago that she would have been so enmeshed in her internal world that she wouldn't have noticed the sights or smells. Now she does. Yay!
Now I'm resting to recover energy so I can do an afternoon stint with her .... probably a trip to the Bunnings playground.
While in the water, Kaylia saw some people with a BBQ ... quite a distance away. So she was soon asking for "sausages". Now this may seem quite normal .... that's my point! It's not that long ago that she would have been so enmeshed in her internal world that she wouldn't have noticed the sights or smells. Now she does. Yay!
Now I'm resting to recover energy so I can do an afternoon stint with her .... probably a trip to the Bunnings playground.
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