[senco-forum] Children with an ASD WAS : would this wording put you off?

-)

Thanks to those who have written to send good wishes and support.  I
appreciate your thoughts - but, just in case, I'd like to say that my
intention wasn't to make you all feel sorry for me ;-)

I wanted to demonstrate that all this 'fighting for our children' has
a cost. And/or that there may come a time when parents can't fight any
longer. And then to pose the question : what happens to our ASD kids
then...

I don't doubt that it's a result of the 'system' (and nobody 'in the
system' wants to take responsibility when they don't have to...there's
no reason why they should) - but, similarly, parents aren't out to
'get' schools, mostly they are working in the dark, and even the most
'difficult' parents merit support from 'inside' the system rather than
closed ranks (which just creates more fear and then more anger which
closes the ranks even tighter and so the cycle continues).  Even the
most 'informed' parent will have no idea of the 'politics' which
motivate people inside the school. And maybe many/most schools haven't
identified and articulated how those politics (small 'p') affect them
either - things like 'pecking order', who has power to do what, etc.

So who *will* take responsibility for change?  Society moves but
slowly and as our understanding of ASD increases so the changes will
most surely come.  Just not in my lifetime, and not in time for my
son's school-based education.  Here's a quote : "All special needs
children are special but children with an ASD are special in a special
way."  A child with any disability 'thinks' in the same way as every
other child.  But a child with an ASD thinks and communicates in a
very different way.  Once we can 'get' that, then the move  forward
will begin.

I recommend highly the online Certificate in ASD run by Birmingham
University, recruiting now for a January 2008 start.  This is a small
step in the right direction for *anyone* working with ASD children.
Please let your colleagues know (if they are 'up' for a challenge).
:-)

Thanks
A.

On 04/09/07, lk s <lks1985 at hotmail.com> wrote:
> A. I am so terribly sorry to hear your news and my thoughts are with you and
>
> your family.
>
>
> >From: Astryngia <astryngia at googlemail.com>
> >To: "lk s" <lks1985 at hotmail.com>, senco-forum
> ><senco-forum at lists.becta.org.uk>
> >Subject: Re: Fwd: [senco-forum] would this wording put you off?
> >Date: Sun, 26 Aug 2007 10:45:15 +0100
> >
> >You're right to go for the max at this stage. It is much easier to
> >adapt to growing lesser needs than it is to tighten up and get more -
> >and Year 7 is *always* an abysmal time for these kids.  You want the
> >max at least for that first year.  Once she's settled in, it can be
> >reviewed.  I don't think it reflects badly on your daughter. How can
> >it??!  Schools can't refuse you a place just because of the level of
> >support needed - they have a policy of inclusion.
> >
> >And LAs have LA speak.  Mostly it goes on the lines of 'there's only
> >one pot of money' and you (parent) are very bad if you want to snaffle
> >some of it for your child'.  It was only when I heard someone from
> >another LA say exactly almost word for word what I'd heard from my own
> >that I realised there's a script.  (I'm joking - there's no script,
> >just the same 'hymn sheet'.)
> >
> >I have wondered, if there's only one pot, who all this money in the
> >pot is for when the message seems to be the same for all parents ie
> >it's not for YOU, no matter how challenged your child is.  They seem
> >so frightened that if they give an inch, you'll take it all that
> >there's very little cooperation.  That makes it into an adversarial
> >situation from the start. And nobody puts the child in the centre so
> >you can work from what would be perfect to what would be possible -
> >you have to chip away with a great deal of uncertainty and the
> >'professionals' causing further confusion.
> >
> >But what happens when we can no longer fight for our children.  I have
> >given up in despair.  After a couple of years of politely fighting a
> >crazy (beyond comprehension) situation which caused our whole family a
> >great deal of distress, I find myself now fighting cancer.  And while
> >I fight to stay alive, my son is dispensed with, out of the system.
> >At least his mental health is stable, he's happy enough and I pray
> >that it is true that he'll take to FE when the time comes. I am
> >outraged at the damage that has been done to my family by 'the
> >system'. Keep fighting - yes, even the LA told us that what we have to
> >do.  But at what cost?
> >A
> >
> >
> >On 21/08/07, lk s <lks1985 at hotmail.com> wrote:
> > > Thankyou all so much for your replies. Biff as ever your comments were
> >very
> > > helpful and your typing beautiful! Also Brendan and others who have
> >replied,
> > > you have given me much to think about. I personally think my LA are
> >spinning
> > > me a line and laying a guilt trip on me, which they do on a regular
> >basis.
> > > They have implied that if I insist on the wording 1:1 designated
> >support, it
> > > will in some way reflect badly on my daughter. When you think that the
> > > annual review was held in April and we are still not in agreement, you
> >can
> > > understand I'm sure how tired I am of it all. I have in fact 'written' a
> > > large chunk of this proposed ammended statement myself, as the original
> > > proposals were dire. But still the LA continue to be unable/unwilling to
> > > specify. They say that in statements they always put that children will
> >have
> > > access to specialist teachers and do not specify how often etc. because
> >it
> > > is up to the school to call on this support when needed. I wanted to
> >check
> > > on forum mainly to see if a statement that specifies 1:1 support in
> >class
> > > would in some way be detrimental to my daughter. The statement states
> >quite
> > > clearly what support would need to be provided and by whom in class.
> >This is
> > > expected to be by an L.S.A. whose primary role would be to ensure that
> > > daughter accesses all lessons and reaches her learning potential. I'm
> >not a
> > > fool and of course I want to see her become a more independent learner
> >and
> > > take more responsibility for herself but realistically in some lessons
> >this
> > > is unlikely to happen. I know the pressure schools are under to support
> >all
> > > children with sen, but the support in her statement is for her and it
> >has
> > > been a long and very upsetting process getting it! I am tempted now to
> >ask
> > > the LA to finalise the statement and then go to tribunal where they can
> >put
> > > forward why they think using phrases such as opportunities to, will have
> > > frequent access to, should be given opportunities to etc are acceptable.
> > >
> > >
>
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