Damn, the head in the sand strategy can't work forever...Was going along fairly well in the shadowy realm of non-diagnosis.
Maybe autism, maybe rett. Then one casual expert visitor drops the bombshell... 'You know you'll have to keep an eye on her for pneumonia.' Because of swallowing difficulties, rett girls often inhale what they're meant to drink.
It shouldn't feel like a bombshell because I've suspected it all along, from day one. (Damn google, it's so easy to diagnose, especially when the doctor says 'dunno, look it up'.) But so far the therapists have shrugged and said, 'All kids with autism are different.' Autism is her official diagnosis. Many times we raised rett syndrome with her paediatrician, but he didn't think it was likely.
Rett has a more troubling prognosis and it seems fairly common for rett kids to die of pneumonia or cardiac arrest in their teens.
The 'scientific' difference is that rett is seen as provably genetic (with autism they're still hunting for genes). But genetic tests don't pick up all rett cases, and just recently a second genetic mutation has been found, which implies that it's not a simple one-to-one relationship. Differences in syndrome severity are explained by which X chromosome controls neurons (one X chromosome being rett-affected) rather than by environmental contributions.
Researchers seem to work backwards from a belief in genetic causes to locate the genes 'responsible'. In the case of rett syndrome they have manufactured a similar (or, as they believe, identical) illness in rodents by mutating a particular gene. I can't help wondering what they used as a mutagen.
There may well be genetic predispositions and causes for various syndromes; I'm not arguing against that. However it may also be true that under conditions of non-exposure to particular agents the genetic mutations involved may never actually cause disease. Under the genetic model, we'll never know for sure.
Our girl underwent a massive improvement within 2 days of chelation. That's all I know.
Something causes autism.
Monday, April 12, 2010
Tuesday, March 16, 2010
Not Drowning: Waving!
Another setback for parents trying to gain recognition that their children may have been harmed by adjuvants and/or preservatives in vaccines.
Apparently their case for compensation has been thrown out.
Well, that's predictable... Here's what I wrote under the list of comments (many of which were scathing about the horrible people who refuse to vaccinate, thereby spreading disease):
"Not Drowning: Waving...
"Parents seeking to increase public awareness of the causes of autism are not 'anti vaccine' but pro-prevention. They're not scrabbling for personal profit, they're alerting others to a situation of government and industry complicity.
The studies that proved thimerosal safe were unconvincing and poorly done. It's time to lift the cone of silence that surrounds environmental factors like heavy metals, vaccines and pesticides.
While autism continues to be called 'genetic', parents who have seen good results using chelation (removal of heavy metals such as the mercury in Thimerosal) will continue to press for change."
No doubt I'll get a barrage of nasty emails, as I included my email address in the post... But maybe someone will hear the word 'chelation' and do some research?
Meanwhile my girl is still in her happy phase, so we can get on with life.
Apparently their case for compensation has been thrown out.
Well, that's predictable... Here's what I wrote under the list of comments (many of which were scathing about the horrible people who refuse to vaccinate, thereby spreading disease):
"Not Drowning: Waving...
"Parents seeking to increase public awareness of the causes of autism are not 'anti vaccine' but pro-prevention. They're not scrabbling for personal profit, they're alerting others to a situation of government and industry complicity.
The studies that proved thimerosal safe were unconvincing and poorly done. It's time to lift the cone of silence that surrounds environmental factors like heavy metals, vaccines and pesticides.
While autism continues to be called 'genetic', parents who have seen good results using chelation (removal of heavy metals such as the mercury in Thimerosal) will continue to press for change."
No doubt I'll get a barrage of nasty emails, as I included my email address in the post... But maybe someone will hear the word 'chelation' and do some research?
Meanwhile my girl is still in her happy phase, so we can get on with life.
Friday, February 26, 2010
Medico with influence joins the dots!
Wow. The New York Times is running an article about a senior paediatrician calling environmental toxins to account for autism and other increasingly prevalent disorders...
I'm elated! But gee, even for me, it's tough reading...
Get yourself a cup of tea before you try!
PS You might want to copy and paste the link into your browser, as I'm not sure it will work as a direct link.
http://www.nytimes.com/2010/02/25/opinion/25kristof.html?em
I'm elated! But gee, even for me, it's tough reading...
Get yourself a cup of tea before you try!
PS You might want to copy and paste the link into your browser, as I'm not sure it will work as a direct link.
http://www.nytimes.com/2010/02/25/opinion/25kristof.html?em
Tuesday, January 26, 2010
Australia Day to cheer for
Interesting channel 10 daily news program yesterday about autism 'can it be cured'. A woman spoke very clearly and concisely about how heavy metals removal and gut health intervention turned her girl around. Exactly what happened to Milli. Naysaying didn't make her flounder. She got the message through.
Good on the Mindd foundation! Doctors still rely on government-pharmaco 'Dunno' and deride chelation.
This was a fantastic Australia Day segment!
Something causes autism.
Good on the Mindd foundation! Doctors still rely on government-pharmaco 'Dunno' and deride chelation.
This was a fantastic Australia Day segment!
Something causes autism.
Monday, January 4, 2010
one of those days
Christmas always does it to me... The house fills with people, then suddenly empties. People leave asking us what our plans are and we can't answer because we don't make plans. We just cope from day to day, so the emptiness feels loud.
Meanwhile the hottest topic on my favourite forum is someone's miscarriage. Support posts fill the page. We know what to say when a baby, even a foetus, dies. But when a baby is diagnosed with the loss of some of its brain function...
It's easy to get morbid, but it doesn't help, does it?
Something causes autism.
Meanwhile the hottest topic on my favourite forum is someone's miscarriage. Support posts fill the page. We know what to say when a baby, even a foetus, dies. But when a baby is diagnosed with the loss of some of its brain function...
It's easy to get morbid, but it doesn't help, does it?
Something causes autism.
Sunday, December 27, 2009
whose genes do you blame?
We watch each other slyly, hubby and I. We note the family issues. Got a history in the cupboard of depression? Is that aunt acting weird? When you're told it's genetic, you spend a lot of time filing all the partner's misdemeanours away in the 'autism' box.
Especially males, poor creatures -- autism parents love to trot out the 'extreme male' theory, and laugh at hubby's probable autism. Oh gee, does your husband do that? Yes, mine does too! Autism! (Like an ugly baby, everyone chucking its chin, its faults making them even fonder.) At parent get-togethers everyone seems okay with the idea that males are on the spectrum. I wonder if this is just a female bonding kind of thing? Or are the males doing the same sort of slander elsewhere? You know, I kind of hope so, because the world would be a thoroughly depressing place if the 'extreme male' theory were true.
But even if I don't engage in 'my husband is autistic' feminine bonding, I can admit to having done worse. I've secretly blamed my partner for our girl's predicament. In fact, it was so secret, I didn't even consciously admit it to myself; I just resented him quietly, without thinking it through. If we hadn't bought that pesticide ridden house (he does love the old fashioned country charm). If only he'd bothered to find out he had a nephew with autism. If only he'd been better at eye contact (not sure what that would've got me, but the unconscious mind doesn't worry about logic). If only I'd known the symptoms of mild aspergers before I'd decided to have kids.
Of course, in the light of day I saw that it made no sense to single my partner out; practically everyone we knew displayed some signs of autism, to some degree. (Though this doesn't necessarily point to genes: everyone I know is vaccinated; most people use or accept pesticides.) Trouble is, if you have a child with autism, the difference is you collate these signs. They count toward the picture of its being genetic. Because of this weight of apparent evidence, it takes a pretty rational mind to spot the conundrum that, if autism is genetic, offspring shouldn't display far worse symptoms than the parents, and numbers shouldn't be escalating (a fact you have to go to the Department of Education to find out, since the Health bureaucrats are studiously not counting).
Fortunately it's fairly easy to step off the guilt bandwagon. Even if a syndrome is largely genetic, it makes no sense to blame the ancestors. More likely, their genes worked in certain environments that no longer apply now. Unfortunately the modern western environment is a neochemical cocktail, so we'd never know to what degree these 'genetic' syndromes might never have existed.
So even if the hubby of the piece is slightly aspergersy, don't blame him (even unconsciously) for what's probably in your genes too. It may be that our environments are simply too ubiquitously affected for most of us to cope without some degree of damage.
Genes or toxins, something causes autism.
Especially males, poor creatures -- autism parents love to trot out the 'extreme male' theory, and laugh at hubby's probable autism. Oh gee, does your husband do that? Yes, mine does too! Autism! (Like an ugly baby, everyone chucking its chin, its faults making them even fonder.) At parent get-togethers everyone seems okay with the idea that males are on the spectrum. I wonder if this is just a female bonding kind of thing? Or are the males doing the same sort of slander elsewhere? You know, I kind of hope so, because the world would be a thoroughly depressing place if the 'extreme male' theory were true.
But even if I don't engage in 'my husband is autistic' feminine bonding, I can admit to having done worse. I've secretly blamed my partner for our girl's predicament. In fact, it was so secret, I didn't even consciously admit it to myself; I just resented him quietly, without thinking it through. If we hadn't bought that pesticide ridden house (he does love the old fashioned country charm). If only he'd bothered to find out he had a nephew with autism. If only he'd been better at eye contact (not sure what that would've got me, but the unconscious mind doesn't worry about logic). If only I'd known the symptoms of mild aspergers before I'd decided to have kids.
Of course, in the light of day I saw that it made no sense to single my partner out; practically everyone we knew displayed some signs of autism, to some degree. (Though this doesn't necessarily point to genes: everyone I know is vaccinated; most people use or accept pesticides.) Trouble is, if you have a child with autism, the difference is you collate these signs. They count toward the picture of its being genetic. Because of this weight of apparent evidence, it takes a pretty rational mind to spot the conundrum that, if autism is genetic, offspring shouldn't display far worse symptoms than the parents, and numbers shouldn't be escalating (a fact you have to go to the Department of Education to find out, since the Health bureaucrats are studiously not counting).
Fortunately it's fairly easy to step off the guilt bandwagon. Even if a syndrome is largely genetic, it makes no sense to blame the ancestors. More likely, their genes worked in certain environments that no longer apply now. Unfortunately the modern western environment is a neochemical cocktail, so we'd never know to what degree these 'genetic' syndromes might never have existed.
So even if the hubby of the piece is slightly aspergersy, don't blame him (even unconsciously) for what's probably in your genes too. It may be that our environments are simply too ubiquitously affected for most of us to cope without some degree of damage.
Genes or toxins, something causes autism.
Thursday, December 3, 2009
playground antics
Ha! Victory!
Of sorts...
We've been having a major tussle with a school whose special class accepted Milli. Actually they didn't accept her at all.
An hour a day was all the teacher wanted with Milli in her class. Weeks later, after pressure from us, she put it up to three and a half hours, but there was no plan to increase this to a full day.
The trouble is, this teacher's class is very 'normal' (or normalised). What a pretty little classroom! Six children sit in a neat line and watch the teacher diligently for cues. They can read and write. They can speak. Not only does Milli not speak or seem to understand language (that is, conventionally seem — there is a lot of evidence that she understands a lot but can't indicate so), she enjoys ripping up paper and destroying ornaments.
But still, it's the job of these classes to cater for all degrees of disability... Or so the policy statements pretend.
This teacher made it abundantly clear how annoyed she was by Milli's presence. Everything was phrased as being 'for Milli's benefit', but the only accommodations made for Milli were quite grudging ones, accompanied by a clicked tongue.
I kept being asked if I was thinking of toilet training her at all? On the second or third day a form was thrust in front of me to sign applying for a different school — 'Don't worry about the details,' the teacher said hastily, 'I'll fill them in for you.' It was very much 'Here's your hat — what's your hurry?'
The teacher was occasionally quite frank about her view of things. She told me that if she extended extra support to Milli, her other children would lose out. While true, it wasn't until I got home that I realised the subtext: it's right to apply more care to less disabled children, because being closer to normal means that the extra effort will be rewarded.
It's hardly fair that the entry of my child should result in a net loss for others — I appreciate how other parents might feel. Yet at the same time this attitude seemed to leave Milli at the very bottom of a ladder that she couldn't possibly climb. How could she ever gain entry to this privileged realm?
At this point, a letter came in the mail responding to our application to the disability-dedicated school, refusing Milli a place.
At this point, I cracked.
I rang DADHC (aging, health and disability are melted together in the same fiscal pot) in tears. As usual, Milli's case worker was away and unlikely to return my call, so I ignored the request to leave a message and demanded to speak to a duty officer. I debated with her and myself whether it was time to give Milli up to DOCS (community services), in the hope that she might receive better care and tuition through some fostered arrangement (foster carers are quite well supported, as I understand it). I rang the education department letter-signer (the one who had notified us of the failure of our application to the disability school) and explained the situation — amazingly, he not only understood Milli's plight at once, but guessed the name of the teacher involved. He said he would follow it up. The DADHC worker had also said that she wouldn't let the matter drop. I'd heard that before, but it turned out both she and the education department fellow were the most effective people I could have approached.
All this took place on a Friday. By Monday morning the following had happened:
- the dedicated disability school offered her a place starting next year; and
- the local school agreed to take Milli's education seriously, and allow her in for a full day until the end of term.
So here we are... Two feet up on the ladder, and climbing.
Incidentally, while all the above was going on, Milli's eardrum burst, revealing a nasty underlying middle ear infection, which has now been treated. Heaven only knows how long she's been in pain, because she couldn't give us any indication of what was wrong.
For the moment, at least, things are not only stable but looking up. And now, at least, I have a schedule I might be able to work by — after all, families in our situation usually have mortgages and bills as well. But the overall degree of difficulty in our lives has just got a little bit less.
Something causes autism.
Of sorts...
We've been having a major tussle with a school whose special class accepted Milli. Actually they didn't accept her at all.
An hour a day was all the teacher wanted with Milli in her class. Weeks later, after pressure from us, she put it up to three and a half hours, but there was no plan to increase this to a full day.
The trouble is, this teacher's class is very 'normal' (or normalised). What a pretty little classroom! Six children sit in a neat line and watch the teacher diligently for cues. They can read and write. They can speak. Not only does Milli not speak or seem to understand language (that is, conventionally seem — there is a lot of evidence that she understands a lot but can't indicate so), she enjoys ripping up paper and destroying ornaments.
But still, it's the job of these classes to cater for all degrees of disability... Or so the policy statements pretend.
This teacher made it abundantly clear how annoyed she was by Milli's presence. Everything was phrased as being 'for Milli's benefit', but the only accommodations made for Milli were quite grudging ones, accompanied by a clicked tongue.
I kept being asked if I was thinking of toilet training her at all? On the second or third day a form was thrust in front of me to sign applying for a different school — 'Don't worry about the details,' the teacher said hastily, 'I'll fill them in for you.' It was very much 'Here's your hat — what's your hurry?'
The teacher was occasionally quite frank about her view of things. She told me that if she extended extra support to Milli, her other children would lose out. While true, it wasn't until I got home that I realised the subtext: it's right to apply more care to less disabled children, because being closer to normal means that the extra effort will be rewarded.
It's hardly fair that the entry of my child should result in a net loss for others — I appreciate how other parents might feel. Yet at the same time this attitude seemed to leave Milli at the very bottom of a ladder that she couldn't possibly climb. How could she ever gain entry to this privileged realm?
At this point, a letter came in the mail responding to our application to the disability-dedicated school, refusing Milli a place.
At this point, I cracked.
I rang DADHC (aging, health and disability are melted together in the same fiscal pot) in tears. As usual, Milli's case worker was away and unlikely to return my call, so I ignored the request to leave a message and demanded to speak to a duty officer. I debated with her and myself whether it was time to give Milli up to DOCS (community services), in the hope that she might receive better care and tuition through some fostered arrangement (foster carers are quite well supported, as I understand it). I rang the education department letter-signer (the one who had notified us of the failure of our application to the disability school) and explained the situation — amazingly, he not only understood Milli's plight at once, but guessed the name of the teacher involved. He said he would follow it up. The DADHC worker had also said that she wouldn't let the matter drop. I'd heard that before, but it turned out both she and the education department fellow were the most effective people I could have approached.
All this took place on a Friday. By Monday morning the following had happened:
- the dedicated disability school offered her a place starting next year; and
- the local school agreed to take Milli's education seriously, and allow her in for a full day until the end of term.
So here we are... Two feet up on the ladder, and climbing.
Incidentally, while all the above was going on, Milli's eardrum burst, revealing a nasty underlying middle ear infection, which has now been treated. Heaven only knows how long she's been in pain, because she couldn't give us any indication of what was wrong.
For the moment, at least, things are not only stable but looking up. And now, at least, I have a schedule I might be able to work by — after all, families in our situation usually have mortgages and bills as well. But the overall degree of difficulty in our lives has just got a little bit less.
Something causes autism.
Subscribe to:
Posts (Atom)