Recently, well about time really, a fellow parent chucked a
load of old paperwork and information back in my direction. She had taken the reigns for a while but had
to stop two years ago due to the system that is SEN being so ridiculous and
underfunded that it couldn’t provide an education for her son, and still
doesn’t.
Digging through the boxes I found a DVD that dated back to
2008. I had won a short story
competition after launching our local group and we were awarded the opportunity
of being filmed talking about what we do. I’m not brave enough to share it on
here and it has lots of other people on it too which wouldn’t be fair. I looked
totally knackered, older than I do now if that’s possible. My son would have been 11 then and it was a
difficult time. He was suffering from
terrible anxieties, wouldn’t leave the house and his special school was failing
him.
I talked a lot in the film about campaigning for change and
about trying to improve the situation for individuals with autism and their
families by making the powers that be, both locally and in Westminster, aware
of the impact of their policies and decisions.
Now, today, in the wake of the financial crisis and SEN
reforms it seems a fruitless endeavour.
We still have a system where parents of children with disabilities need
the law and tribunals to ensure that their children get the help that they
need. That’s sick. Even sicker now as we’ve been telling them
how sick their system was and making them aware of the difficulties and despair
it’s been causing. They can no longer
say “we didn’t realise”
So I’m faced with a decision where the hope has been
removed. I can no longer hope that the
system will change to improve our lives, that governments will put in
sufficient funding to provide the education and therapies that our children
need. You could argue that with the
election coming up there is an opportunity for change. Nah, same old same old, whichever colour you
choose. Local authorities are still
blaming the lack of funding that they get from government and government are
still blaming local authorities for having enough but not using it wisely. Do I really want to sit and watch this futile
game of tennis continue, backwards and forwards again and again? What it always boils down to however is the calls for help,
the looks of distress and isolation, the mess that the sickest of systems
leaves behind. It would take a cold
heart to walk away from that. I know
what our children can achieve with the right support, I see it every day and it
amazes me.
Just before Christmas an Educational Psychologist told me
that my son would always have difficulties. (the old acceptance card again and I told her I had reached that realisation some time ago)
That was her response to my request for Speech and Language therapy to
continue to support my son with social interaction and social communication at
his college placement in September. What
she was really saying was; “it’s expensive, he’s always going to have
difficulties so why bother”. I could
have said “I see your point, ok then forget it.” I could have rolled the dice and hoped for
the best. If he doesn’t cope it’s
probably just as well, he can sit at home for the rest of his life and claim
benefits rather than get a qualification, confidence and gainful employment.
The awareness that needs to be spread now is to the families
more than ever. To make more parents aware, to silence the misinformation and
end the silence of no information. It
may take more time than I have patience for.
Maybe it’s back to work blues but I do feel a little weary and more
inclined to spend time enjoying watching my young man flourish and to step away
from the battles. It’s a difficult decision and I've enjoyed the break.
