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 ďdo somethingĒ, but what?.. Last October when I went to the beautiful city of Edinburgh I joined in with the ďOpen Your Eyes To AutismĒ 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 hadnít 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 Joshís 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. Iím afraid Iím not one to sit by and watch shoulders being shrugged in the face of one of the bravest mums Iíve 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 donít 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 cafť 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 Iíd 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 heíd had every day of his life since the MMR, he was going to be recognised and received for his bravery even if he himself wouldnít 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 donít go away with a handshake, we look to them for action -- thatís 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 Londonís 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 Ė quite honestly I couldnít 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 hadnít 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. Itís 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 theyíd 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 Ė theyíd waited too long for their moment. Many stayed until the bitter end to hear them. And then it was all over.
Today, Iím 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 Iím making the most of the freedom to gain media for our cause. I know though, heíll walk in the house, and Iím so lucky I have respite, but heíll walk right past me, not a glance in my face and make straight for his DVDís 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 wonít be able to tell me what he did during his week away because he doesnít have speech, Iíll have to read about it in the diary kept by staff at the care home. No big hugs for me from him, I canít help it Iíll grab him and hug him anyway even if he doesnít join in, no enthusiastic chatter or laughter or, ďOh gosh mum, I missed you so much!Ē DVDís 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.
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 Ďone very angry mumí. 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 Teresaís 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.
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
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.
Here is a video of the rally. We had a momentous day and made history.
Posted by: Joan Campbell | April 02, 2009 at 07:50 PM
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