Life is so strange. I sit here at 11pm tonight in my dad's kitchen, the kitchen he will never see of his new house. Why? Because dad has mesothelioma, an asbestos cancer that has riddled his body. 3 weeks ago, I could have a conversation with him, we spoke at least 3 times a day, he was my best friend. Now, it's all different, dad knows I am here and may utter a few words, but he is 'morphed' up and in terrible pain. We can't talk anymore. Dad going so quick reminds me of Billy 12 years ago, one minute fine, next gone. Both 'man made' conditions, both here one moment gone the next.
The campaign continues and I need to say this. First we have had some excellent results, the 3 'boys' have really heard us, all 3 have put out a message on World Autism Day (haven't had that before) all 3 are so very slowly understanding that autism is a real and very big issue. The problem is that they don't know what to do, we need to tell them and keep pushing. Keep an eye on the Facebook campaign page, this is about us all and it will take us all to make real change. Never going to stop fighting for the truth and all people with autism deserve.
Tuesday 6 April 2010
Thursday 1 April 2010
Thursday April 1st
So at long last we hear from David Cameron's team. They are going to look at our website and see what people are asking for and get back to us. If you haven't already commented then please do as all your issues will be read by all three Political Parties. Did a radio interview with Radio Jackie that will air tomorrow...
Great to hear from so many, together we will make a difference.
Enjoy Easter...
Great to hear from so many, together we will make a difference.
Enjoy Easter...
Tuesday 30 March 2010
Today continues with much press interest and so many more of your emails coming in. Keep checking www.theautismtrust.org.uk for more comments. Nick Clegg wrote me a letter, I'll get Natalie to scan it in tomorrow so you can all see what he has written. Before you all go nuts about the content, I have written back to give him another chance, we just need to educate him so much more. Gordon Brown has had a year of us trying to do that, he is at an advantage. I am slightly confused at David Cameron's lack of response. We rang his office again and were told 'Did we know that he is very busy at the moment'. Not good enough David!
Someone sent me an email saying that I shouldn't promote the work of smaller charities, we should all work under the National Autistic Society. Let me explain my reasons behind my comment on GMTV about the government supporting the smaller charities. The spectrum as we know is huge with many different levels of autism and Asperger's , I don't believe one charity can deliver to all. There are so many important charities around the country doing valuable work that will make such a difference. Girls on the Spectrum and Kevin Healy's Aspergers Adult charity to name a couple. All are vital and should be supported. By doing this we will attempt to help all people on the autism spectrum.
Downing Street are still working on their offer to us and Nick Clegg gets a second chance, come on David... don't let us or yourself down. Autism matters.
Someone sent me an email saying that I shouldn't promote the work of smaller charities, we should all work under the National Autistic Society. Let me explain my reasons behind my comment on GMTV about the government supporting the smaller charities. The spectrum as we know is huge with many different levels of autism and Asperger's , I don't believe one charity can deliver to all. There are so many important charities around the country doing valuable work that will make such a difference. Girls on the Spectrum and Kevin Healy's Aspergers Adult charity to name a couple. All are vital and should be supported. By doing this we will attempt to help all people on the autism spectrum.
Downing Street are still working on their offer to us and Nick Clegg gets a second chance, come on David... don't let us or yourself down. Autism matters.
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.
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.
Thursday 25 March 2010
Meeting with Phil Hope
So I met Phil Hope at 4 today, he was keen to help and really positive about the ideas he had. Great, but the ideas need to come from the parents and people dealing with and affected by autism/Asperger's. We spent the 40 minutes talking about how we can really help the people that need it. I don't know who has been advising the Government/Department of Health before now but I can only assume that they don't live with autism. I have to admit although I am excited about this campaign and the change we will make, I am frustrated about the huge task we have ahead of ourselves. This campaign is not about me, I am a mother that wants my son with autism to live with the dignity and respect he deserves. I will do all it takes to get our children, teens and adults with ASD everything they deserve but I do need your help. Dr Carol Stott and many others will guide you through how you can help, please do help as this is our chance for change.
Wednesday 24 March 2010
The Campaign Continues...
The 'Hello Boys' billboards go up on Monday (actually they are digital, so I imagine a button is just pushed) The 'Boys' are Gordon Brown, David Cameron and Nick Clegg. Since The News of The World released the image it has already become 'of interest' to the press. We are firmly sticking to Monday as the launch day and I am on GMTV that morning and LK Today. As far as our 3 Boys go, they have all had letters explaining the campaign and what we are expecting from them. People are sending to polly@autismfile.com what they would have to do to win our autism vote. I have told our Boys to read for themselves, please keep your emails coming in and we will do our very best to get them on this site. So, what do we want? Quite simply the best offer for our children, teenagers and adults with ASD. They have suffered enough with the lack of support for even the most basic services. I will not go through another year hearing and seeing what families living with autism are having to fight for, it's an utter disgrace and one that must change. More on this as we go through the campaign.
Gordon Brown's team have contacted me already, I have had one meeting at Downing Street and tomorrow I meet Phil Hope, Minister for Care. I'll let you know what happens. So now I wait for David Cameron and Nick Clegg...
Gordon Brown's team have contacted me already, I have had one meeting at Downing Street and tomorrow I meet Phil Hope, Minister for Care. I'll let you know what happens. So now I wait for David Cameron and Nick Clegg...
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