Posts by Hilary Stace
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I don't think people necessarily approach interventions in a purely rational way. As a parent I have tried a variety for my children, but nothing painful and nothing I would not try myself. As well the therapists have always been recommended by others as being both effective and personable.
My son's cranial osteopathy when he was little -which I observed as a very gently and peaceful massage - certainly appeared to calm his tantrums significantly. Similarly, gentle osteopathy seemed to end his headaches from a neck injury from falling off a sofa, when a physio hadn't. Intensive chemo cured my daughter's leukaemia, but Chinese herbal medicine seemed to boost her immune system from the constant infections she caught for a long time after the chemo finished. Similarly things like bach flowers and homeopathy may help some, and aren't expensive.
What I object to is strong commercial marketing to vulnerable parents as essential for their child's 'cure' - for interventions that are expensive, invasive and painful (as well as not supported by evidence) - and something the parents wouldn't voluntarily do to themselves.
Watching a small child undergo poisonous chemotherapy is very tough on parents (worse of course for the kids), but at least you have access to academic justification for the use of that particular protocol.
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Chronic sorrow is not about guilt. It's about acknowledging that things can be tough and unfair at times. You can be on top of things and then something like a transition time arrives when other kids are moving on and yours isn't.
But I agree it's about how you deal with it. I recommend treats, but not self-destructive ones.
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Am I autistic?
Ben - this is a question many many family members, parents, siblings, grandparents etc ask themselves on the autism diagnosis of a family member, and as they learn more about the condition. Or they ask themselves is x (relation) autistic?
I heard Tony Attwood talk in Wellington a couple of weeks ago and he describes a continuum that we are all on but those with autism clustered a little more towards one end (and ASD, depression, anorexia, OCD, addictions etc could all have a genetic relationship). He also says autism is infectious - the more you know about it the more you notice (allow) your own autistic traits.
It's everywhere, so embrace it don't fight it. As Temple Grandin says, if it wasn't for autism, people would still living in caves talking to each other.
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But with respect to love, I have to make a sad confession - I have found that I love him all the more for his condition.
Not sad, that is wonderful that you love him for who is is, and how he is. It's called humanity.
I just hope you are finding support for you too. There is a thing called chronic sorrow that parents of children who are 'different' from a so-called norm, can be affected by, and it can come and go.
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Adults can make informed choices about how they chose to treat conditions they have. But children don't get the choice and I get concerned about some of the interventions parents subject their children to which have no evidence base, could hurt, be scary, demeaning or dangerous.
There are numerous examples in autism and we have autistic adults who can provide testimony to the negative effects of some interventions they have personally experienced, from institutionalisation to punishment-reinforced ABA sessions. Chelation, hyperbaric chambers, and testosterone injections are some currently popular 'treatments' that some parents are spending a lot of money on. Why? Biopower, individualism and a desire to have a perfect child. If one is not quite 'right' you can pay to fix it. In the old days you just locked them away.
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Hyperbaric oxygen chambers are pretty popular with a certain section of parents of autistic children. But not, I imagine, with the children who get shut inside them.
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Are you aware of the work of Sue Larkey
I've heard her speak a couple of times. She's is an enthusiast for the teaching and learning of autistic kids and all the diverse ways this happens, and is very child-centred. She comes to NZ quite regularly and is worth going to hear.
One tip of hers I remember. She suggests that to get school principals to understand the autistic child and their need for things to be predictable and unchanging, is to get to school early and park in the principal's car park.
But you would have to be a brave parent to do that. -
I think it is time someone stood up for Marian and Phillida since there seems to be a move to put them in the same boat as the current situation. I remember that tough time back then when they resigned while their situations were investigated and cleared. Both were people very staunch on acting with honesty and integrity. Attacking Marian for lack of integrity was the cruellest thing anyone could do. Neither MP did anything with malicious intent. There were messy unclear situations for which they took advice which turned out to be wrong. And how can I say it, as I admire them both immensely, that as ideas activists and people people they could both do with a little administrative support at times. Mistakes happened, which were soon rectified.
But there seems to be no personal or political responsibility taken for this current situation. That's the difference.
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Sacha and Joe
Green MP Catherine Delahunty has a Disability Commissioner Bill in the private members' ballot, and hopefully it will be drawn in the near future. If we had one now would be just the sort of agency to deal with these issues and hopefully ensure they don't happen in the first place.
Otherwise, Joe, write a letter to Tony Ryall and see if you get any enlightenment. Disability support in the form of respite ultimately comes from Vote: Health however delivered (or not).
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Thanks Russell, I was wondering how close Simon was to that one.