Access: Here's to them
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Wonderful words and great work you guys. May peace fill your hearts . God bless you. x
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Kia kaha Russell, Fiona Jimmy, and Leo. Sadly many of the challenges facing people with autism and their families remain. But a movement of rights, dreams, and aspirations is growing and is unstoppable in its pursuit of great lives for all disabled people. I’d also like to acknowledge some of the people who have taught and inspired me: Oscar, Hilary, and Serena Stace, Matt Frost, and David, Jules and their families.
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Thank you for this, Russell. You and Hilary were the first people outside of some of our immediate family and friends whom we told about our daughter's diagnosis. Your writings, your outlook and your love for your boys have been an example and a very comforting place to turn to through difficult times.
(Also, how the first time we met in person, at a blend in Wellington, the first thing you said to me when we sat down in front of a drink was: "So, how's Lucia?")
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Lovely words Russell.
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asnz,
Thank you Russell, Fiona, Leo, Jimmy for the hard yards that publically helped make a new direction for autism and autistics the unstoppable phenomenon it is New Zealand. <3
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Great post. Does anyone else find it difficult, as parents of autistic kids, not to divide the world into 'those who get it' and 'those who don't?'
Ok, maybe not divide as such - because that does become an automatic necessity, I think - but divide people too excessively this way?
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minor typo- the post starts "When Fiona and became parents"
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Thanks Russell, Paul (welcome) and Giovanni. Have been out most of this World Autism Awareness Day having autism conversations. Just met with a mother and her lovely daughter. They are going through that school thing of lack of understanding, enforced homework, unaddressed reading issues etc etc. These days I mainly encourage people to join in some of those well moderated Facebook groups - being wary that it is a public noticeboard - such as Autism in NZ. There is a wealth of information and support to be found in the collective wisdom and experience of other parents (mainly mothers seem to use Facebook in this way).
It has been so helpful for me hearing about the experiences of Russell and others over the years, as parenting can be lonely. Young Matt Frost and Paul Gibson were significant for me in their days with CCS in showing what was possible.
What great networks we have now, and growing. And continually increasing expectations for our young adults too.
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Russell Brown, in reply to
minor typo- the post starts "When Fiona and became parents"
Oops. Thanks.
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Russell Brown, in reply to
These days I mainly encourage people to join in some of those well moderated Facebook groups – being wary that it is a public noticeboard – such as Autism in NZ.
That's what I was talking about in the part about being grieved by the bullshit some parents still have to face. I try and offer useful advice there – it seems like a good place to share experiences.
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This latest blog post from the local Autism and Oughtisms blog for WAAD mentioning the recent diagnosis of second autistic child seems appropriate
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Hilary Stace, in reply to
Yes
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Thanks for those beautiful thoughts & words Russell.
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Russell Brown, in reply to
This part ...
Let newly diagnosed families know that they are not alone, that yes autism is a lot to cope with but it’s not the end of the Earth, and that the child they loved yesterday is the same child they love today, just with a new word in their life that is there to help them understand their child better.
Every word.
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I need a "like" button 😊 thanks so much Russell.
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I enjoy Jimmy's film reviews and it's obvious you two have done a great job. As parents we all hope that our kids turn out healthy and happy. Our ADD child is now a very happy circus performer, magician and gym teacher in the UK -- a very big world away from the withdrawn, bullied child he was during his schooldays.
It was sad to read yesterday that despite a greater understanding of autism in the wider community, a school in Canberra saw fit to put a 10-year-old boy with autism into a cage -- an evil and misinformed variant of the "naughty chair."
The world still has a long way to go when it comes to helping special needs kids to lead fulfilling and productive lives.
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TracyMac, in reply to
I would like to just say that as someone whose partner worked in special needs education until the end of last year - when the programme funding was cut - this report does not tell anywhere near the full story.
Funding has been cut by 40%, even though increasing numbers of children are being identified as having special education needs. There are many children being put into programmes they are not suited to, simply because there is nowhere else to place them. What programmes remain are underfunded and seriously understaffed.
So while it's appalling, you have frontline staff making decisions that seem best for the majority of students in the class, while not having facilities to properly care for the kid who is having a bad and disruptive day, or who simply can't cope with the environnent on good days.
No-one wants kids 'caged' - especially not teachers in this sector - so please demand more information on the surrounding factors before issuing a knee-jerk judgement. Frankly, I think the Canberra Times needs to step up its reporting on this story. Significantly.
In short, this is most likely a systemic failure of ACT special needs services (in great part) due to federal funding cuts rather than a sadistic teacher or a deliberately negligent institution or programme.
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Bravo! Lovely words.
Our eperience has been a bit different. Oscar has Down syndrome; the word autism didn't crop up til he was almost 5.
The double diagnosis has meant we've not quite fitted into either the autism or Down Syndrome support networks -though both in their way have been great.
On the positive side, we didn't know what ORRS funding was until Oscar had it just like that.
Not easy. But I'm tapping this on the phone as we cruise past moturoa at about 3 knots on a balmy afternoon. Oscar is down below, awake now and beginning to negotiate for chips. Today is pretty sweet :) -
giovanni tiso, in reply to
So while it's appalling, you have frontline staff making decisions that seem best for the majority of students in the class, while not having facilities to properly care for the kid who is having a bad and disruptive day, or who simply can't cope with the environnent on good days.
No-one wants kids 'caged' - especially not teachers in this sector - so please demand more information on the surrounding factors before issuing a knee-jerk judgement. Frankly, I think the Canberra Times needs to step up its reporting on this story. Significantly.
Sorry, no. Just no. Unless the basic details of the story are completely wrong, there is no amount of context that justifies locking up a kid. Which by the way happens in New Zealand schools as well.
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Sacha, in reply to
this is most likely a systemic failure of ACT special needs services (in great part) due to federal funding cuts rather than a sadistic teacher or a deliberately negligent institution or programme.
People will feel outraged at the results whether or not we take the causes into consideration. Simply not OK.
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TracyMac, in reply to
I totally agree that confining a child except in an urgent case of keeping the kids safe (for a very limited time until the guardians can fetch him/her) is appalling. And that outrage is the appropriate response.
And all the people I know of in special needs education here are also outraged - there isn't a culture in that sector of the "naughty chair". Mishandling of mainstream education needs and inadequately trained mainstream teachers is still too common in many cases, alas.
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Sacha, in reply to
Do you think the NDIS programme has had an impact on the broader consciousness of Australians about disability?
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Sacha, in reply to
Yes. Can't imagine in any detail the effect it would have had on my beliefs about the world if my school had locked a classmate in a cage and treated that as OK.
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Just for a change-up, Jim has expanded into video game reviews. This is his first one using the Elgato HD 60 capture device, which he bought from his Bridgeway earnings.
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giovanni tiso, in reply to
And all the people I know of in special needs education here are also outraged - there isn't a culture in that sector of the "naughty chair".
The culture in special needs education, from what I see from their leadership, is weak. The culture in most schools is weaker still. There is no accountability in the sector, no places other than the media for parents to appeal to and situations when kid get locked up - only marginally less gruesomely than the kid in Canberra - go unreported.
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