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Monday, 29 March 2010

Early start today, car picked me up at 6 (if you leave any later from Hampton you sit in traffic for hours) Saw the first billboard on Waterloo bridge, it was big, bold and very much a statement. I felt a twinge of sadness that it had come to this, me in a bra on a billboard. I remember when I had the photograph taken, I freaked when I saw the original colour image. The photographer said to me ' this isn't about you, Polly, it's about autism'. I only have to think of the calls and emails I get, the children, teens and adults that come and see Jon and I know why this has to be done. Today my inbox was jammed with more horrific stories of how people are coping in this country, they keep coming. One thing I have learnt is just when you think your day can't get anymore tiring, stressful and endless, someone calls with an account of their life, day, moment and you are suddenly the lucky one. Lorraine Kelly was a really sympathetic person to our cause, she was telling me about her friends son who was very similar to Billy.  John Stapleton remarked on the campaign and said how worthy autism was.
So, I hear on the grapevine that this campaign has upset a leading autism charity. Well, guys I have met with you on a number of occasions, explained what I am doing and why. The reason I am doing this is because you are not delivering anything that will help my son. Sounds harsh, but we have discussed this so many times. This charity does great work for many, I will never doubt that. My son needs a protective   environment where he can develop his potential with ongoing support with life skills. Judging by the response I have from people that comment on The Autism Trust, I am not alone. I was told by this charity that I was wrong, my son would be fine living in the big wide world as all people with autism would. Tell that to the mothers I speak to who have children in prison, care homes, at home doing nothing because they simply can't cope. But most of all tell that to the woman I spoke to recently whose sister with autism was found dead in her flat, it took 9 days for them to find her body. Where was the care and support for her? So without shame or regret I do this campaign, with pride and determination I move forward. Too many are like my Billy, wonderful people with autism and Aspergers that just need some help.

1 comment:

  1. So the National Austistic Society object to 'small autism groups' campaigning. Do they think they have a 'God given' monopoly on this just because they are 'bigger'?
    My 'Wakefield babe' is now seventeen and at college doing computer studies. Like many Asperger's persons he has an aptitude for this. He is a credit to us all, although unfortunately his bowel problems mean he is often unwell.
    Who and what has helped him over the years? Firstly, his parents are in touch with other parents of autistic children for mutual support and advice. Those two much maligned clinicians, Profs Walker Smith and Murch were wonderful at the Royal Free Hospital until the day my daughter and grandson arrived at the clinic to be told that Simon Murch was no longer 'available' to provide clinical treatment to my grandson.
    The Allergies/Autism group have been wonderful in providing excellent dietary advice. We found that excluding gluten, casein and all 'chemical' food additives from my grandson's diet made a huge difference to his cognitive awareness and behaviour.
    My grandson's infant school and teachers were excellent, but my daughter had to fight for extra classroom staff and provision. We have found subsequently that educational understanding and support is extremely 'patchy' as far as autism provision is concerned. There needs to be standardised approaches and methods introduced into teacher training courses, particularly since 'inclusion' is now the stated aim.
    Our political leaders CANNOT ignore the growing problem of autism within our damaged society, and yet they all want to 'stick their heads in the sand' pretending not to notice, far less address the problem. Good for you Polly for MAKING them listen!!

    Before today I had NEVER HEARD of the National Autism Society. Which 'nation' do they represent?
    What EXACTLY are THEY doing to raise awareness?