http://www.ageofautism.com/2009/04/the-london-rally-but-home-is-where-the-dvd-is.html
Age of Autism
April 02, 2009
The London Rally - But Home is Where the DVD Is
By Allison Edwards
As the mum of two boys, Charlie my eldest, and Jon, one severely autistic
11-year-old, this rally was to be my opportunity to trade the feeling of being
trapped by the un-ending care I must give to my Disney obsessed child, to break
out of my bubble and join up with others and “do something”, but what?.. Last
October when I went to the beautiful city of Edinburgh I joined in with the
“Open Your Eyes To Autism” march there, organised by grand-parent of Luke, Bill
Welsh of the Autism Treatment Trust. It proved so exhilarating, I felt, eureka!
This was it! It was time to take it to London, I thought.
My demonstrating blood was up and I was at the end of my tether. My friend,
Heather Edwards (same surname, no relation) and her 16-year-old, non verbal
autistic son Josh, were floundering, his body was so ravaged by bowel disease
that his colon was removed and he could no longer eat, he survives on a special
milk. Christmas was coming round again, he hadn’t eaten for three years and
never would again. How could the rest of this lovely family, husband Nick,
brother Aaron and sister, Jodie eat and enjoy their Christmas dinner in front of
a skinny, five stone skeleton and ignore him? It was getting harder to reconcile
that nothing could be done.
Heather was tired, exhausted by Josh’s daily care requirements, never had a
break, never going to get one, it seems his health is far too precarious for
even the medical world to continue with. I’m afraid I’m not one to sit by and
watch shoulders being shrugged in the face of one of the bravest mums I’ve ever
met. How on earth does such devotion get unacceptably met with those unspoken
words delivered in a stare to give up and go home, cope and wait for the
inevitable. Not on your Nelly! The missing fact is, we mothers are prepared
crawl across the earth over broken glass when it comes to our children. We don’t
give up hope, we look for solutions, they are out there somewhere and we will
find them.
Since late last year I scouted my own way through the paperwork, permissions and
procedures to fix up an event hoping it would halt the traffic in central London
but with no official charity status to raise funds it left me personally forking
out for insurances and bagpipers, with more needed for the publicity, printing,
podium, banners, sound equipment it was becoming a heavy financial concern.
Until, up stepped the wonderful Jan Percival, who held a coffee and cake morning
all off her own bat.
This working mum of 17 year-old Alex with autism, spent three whole days baking
cake after cake, sold tickets, organised a café to hold it in, sorted out raffle
prizes, this was a one woman tornado, a miracle. Then another friend Deb Nash
mother of 16-year-old David and her mum made and sold marmalade, and jams and
carried out various brilliant sales endeavours whilst I sold printed rally
t-shirts, between us we managed to raise just what we needed. Other tremendously
talented acts of ability sprouted, a website was set up by Mark Hawkings, father
of Edward; another technical wizard John Campbell, father of 17-year-old Jack,
designed artwork, The Autism File offered advertising assistance and we were on
a roll. On a shoestring budget put together by a bunch of already stressed
autism parents we were managing to pull off an event a much larger group had
given up thinking about doing because they estimated it would cost somewhere in
the region of £100,000 to organise.
Then, with only two weeks to go it was confirmed to me by the police that the
G20 World Poverty Demo was going to set off from the same spot as ours, Temple
Place on the Embankment, 30,000 of them only two short hours before us. Good
grief! This would mean roads into London were to be closed to traffic. How would
everyone get there? My heart nearly stopped. All that effort, but our spirits
were not about to be dampened by anyone or anything! Then, as if to lift our
hopes, a letter I’d written in to Downing Street was picked up by Maggie
Darling, the wife of The Chancellor Of The Exchequer, Alistair Darling, who
resides at No.11. She agreed to meet us and invite us in to their historic home
because she knew and understood the plight of autism and was prepared to have a
talk with us.
This was music to our ears. I almost cried when I told Heather her boy would do
something remarkable, for all the pain he’d had every day of his life since the
MMR, he was going to be recognised and received for his bravery even if he
himself wouldn’t understand a single thing that was going on. For Heather this
was of significant importance, she was no longer being ignored. Hard though it
is to get over to politicians how our dreams don’t go away with a handshake, we
look to them for action -- that’s why they are appointed to represent us, even
when disappointment constantly seeps however over this 10 year matter.
As the day approached news stories were played out in the media about the
possibility of violence erupting on London’s streets during the demos because of
the banking crisis and the economy. How could we ask the parents of particularly
vulnerable children and young adults to risk themselves for a march? The police
were on alert. Inspector Graham Cross was our man in charge on the day, he had
it all in hand and I was calmed with the level of protection he was giving us –
quite honestly I couldn’t have asked for better protection for our group.
As we gathered at Temple Place, there was a short sharp hailstorm. I was just a
little too busy to realise what was going on around me as the crowds were
packing us together more tightly. Then, the bagpipers struck up on a rousing
note. Our policeman nodded, we were off! Suddenly it hit me, and I wanted to
burst -- our numbers were huge, thousands had come, through all this adversity,
not to mention the biting cold wind and threatening rain clouds people had come
out to support us in their droves. The homemade banners were amazing and quite
heartrending. It was truly astonishing. We followed, none of us able to take in
the sheer size of our demo. Along the embankment we snaked, crowds lining and
cheering and our precious autistic children managed to keep up on our mile long
march, and then almost like one of those biblical movies I recall, the rays of
sun came out and there was blue sky it was utterly fantastic. The packed, huge
crowds that greeted us and cheered and clapped as they lined the route past Big
Ben and into Parliament Square and Parliament Street, then up into Whitehall. It
was a proud, proud moment.
At Downing Street we stopped to let our posse of young teens and parents through
the big security gates, something the G20 marchers hadn’t managed to receive, an
invitation inside. Alistair and Maggie were wonderfully kind and caring,
particularly towards Heather, Maggie giving her a warm motherly hug which almost
set off the tears. As we stood in the front hall of Number 10 we told them about
the awful and true changes we had seen as eye-witnesses following vaccines and
called for investigation of this living nightmare hoping to stop it now and
prevent it happening to others. It’s easy to see we are decent people, from good
hard working families, never driven to march for anything, that was until our
children regressed into autism; today our message had a purpose.
After photos and handshakes we took off to cheers at the gate as we were let out
of the inner sanctum of government. Hopes high at being heard. Then we had a
brisk walk and run to make the final stretch to Trafalgar Square, the very heart
of the capital city to speak to the gathered crowds waiting to hear our words.
It was quite a day. Parent after parent took to the podium, microphone in hand
and opened their hearts and the eyes of the crowd to what they’d been dealing
with over the years. The call for improvements in all the services to support
autism MUST be heeded by the politicians who rather worryingly seem to have a
little too much time for debating their own needs and expenses these days. The
weather drew in and the wind and rain beat down for fully an hour, but none of
our speakers flinched – they’d waited too long for their moment. Many stayed
until the bitter end to hear them. And then it was all over.
Today, I’m back home from our exciting weekend adventure away, back to the dull
routine. Months after the organisational tasks began, my son, Jonathon will be
home from respite in a couple of days, so I’m making the most of the freedom to
gain media for our cause. I know though, he’ll walk in the house, and I’m so
lucky I have respite, but he’ll walk right past me, not a glance in my face and
make straight for his DVD’s and begin the routine of persistently playing them
for hours on end, pushing me away until I make him come and eat his food which I
will feed him with a spoon. Then change his nappy (diaper) afterwards. He won’t
be able to tell me what he did during his week away because he doesn’t have
speech, I’ll have to read about it in the diary kept by staff at the care home.
No big hugs for me from him, I can’t help it I’ll grab him and hug him anyway
even if he doesn’t join in, no enthusiastic chatter or laughter or, “Oh gosh
mum, I missed you so much!” DVD’s will help settle him back in, not me.
Alli Edwards (one very angry mum) is with
www.cryshame.org in the UK.
***
Thank you Alison. Myself and boys were some of those who struggled with blocked
roads into London city on the day of the Rally, but we managed to meet you all
halfway and eagerly joined on at the end, - relieved to make it. Though Ruari,
7, Autistic, and in bright green ear defenders - screamed and cried to go on the
'big wheel' (the eye), and I was forced to try and carry him at times(!), I want
to say I'm truly honoured to have the chance to join with such wonderfully
spirited and determined parents at this event. We're not alone when we have each
other.
Well Done YOU! for all your effort, and to those who helped put this together
with you.
It was a hell of a journey on the bus from Fife and back with a wee boy who
recited 'Green Eggs and Ham' incessantly (not that anyone else could have made
it out). But we're accustomed to hellish journeys by now, as parents surviving
Autism, and we're not giving up. We're focussed on the future, for our kids and
those to come.
Here's to you Alison, to all of us, and to the Rallies for Autism Treatment and
Prevention yet to come. Thank you. Karen Burton (aka; Ruaris' Mum)
Posted by: Karen Burton | April 03, 2009 at 04:39 AM
***
What a tigress! There is nothing you can say which does Alli justice. She has
been completely selfless in defence of her child, but also everyone else's. It
is an immense privilege to know her and work with her.
Posted by: John Stone | April 03, 2009 at 03:03 AM
***
Allison - what a beautifully written and inspiring account of the rally and
events leading up to it. All of you in the UK are always in my thoughts - mom to
mum or mum to mum - we are all one and united in our efforts to stop this
insanity and get the justice we all seek for our injured children.
Theresa
Posted by: Theresa Cedillo | April 03, 2009 at 02:46 AM
***
Wonderfully written, and what a tremendous accomplishment this march and rally
were. Obama just went to England; I think he got there after this. I wonder
whether this rally came to his attention. Thank you and very best wishes to all
of these parents and their children.
Posted by: Twyla | April 02, 2009 at 10:55 PM
***
Thank you Allison for your very moving account of how from a germ of an idea,
you achieved something tremendous. Your dedication and determination to do
something positive, not just for yourself or your own autistic son, but also for
others who suffer the same condition - and especially Heather and her son Josh,
is nothing less than inspirational. Your selflessness is to be applauded. One
can only imagine your fears as obstacle after obstacle appeared in you path, but
in the end you triumphed in a spectacular fashion.
I was lucky enough to be able to attend the march, and was astounded to see the
crowds who had been drawn together thanks to the efforts of ‘one very angry
mum’. It was a humbling and emotional experience. Added to that, the resourceful
support from Jan and Deb, Autism File, Mark and John must have really cheered
you on.
You are stars!
Blessings to you in your mission.
P.S. Must endorse Teresa’s comments - you are a talented writer!
Posted by: Seonaid | April 02, 2009 at 09:11 PM
***
What a truly inspiring story. Your words hit very close to my heart. Keep
hugging and helping your dear son.
Cathy
Posted by: Cathy Jameson | April 02, 2009 at 08:58 PM
***
My God! What a wonderful writer you are! I had left my home here in Illinois and
was off witnessing and cheering you all on in London. How brave and significant
this was and how absolutely amazing that you were able to do it.
Your descriptions of the other children and all their parents is so vivid and so
sad as the lack of medical care there for autism is alarming. But you are not
giving up and you will change it!
The arrival of your son and all that you do for him is the "crawl across the
earth over broken glass,.."
I understand that so well and the damn yet glorious DVD player.
Hope and peace to all of you and all of us as well.....We are with you!
Posted by: Teresa Conrick | April 02, 2009 at 08:21 PM
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I admire you so much Allison. You are true to the cause and I hope that the
politicians listen to your words and the rest of the parents and grandparents.
Many thanks
Here is a video of the rally. We had a momentous day and made history.
http://www.youtube.com/watch?v=EBD13c5cP5Y
Posted by: Joan Campbell | April 02, 2009 at 07:50 PM
***
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