CHARLIE'S WORLD: AN AUTISM BLOG FOR SIBLINGS
Charlie Edwards is a 14 year old young man living in Telford in the Midlands,England. He is a Rugby 
fanatic and supports the London Wasps. He also loves playing guitar and is currently a member of a yet to be named band. His family consists of his mum, Allison, dad, Michael and his little brother Jonathon whom Charlie affectionately refers to as "The star of the show". Jonathon has autism. Charlie's aspirations for his Blog are to bring attention to the parents and carers in the autism community and to "get them the proper help and recognition that they deserve". Charlie wrote an article for the Autism File magazine regarding the siblings perspective and it was a hit! Polly Tommey, stated that she has never received more feedback from one story ever. Charlie's Blog will be a monthly Blog on Autism File .com.
Comments for Charlie can be sent to; polly@autismfile.com
…Just extremely different
First off, I’d like to apologize for my absence from this page in the last couple of months, need I say more than important exams? I hope everybody is having a great summer (if you can call it that, the weather’s been murky here in Britain). I’ve had a really good summer break so far. My family and I went to Sardinia in the opening weeks of July. It was fantastic, excellent food, white sand beaches and the scorching Mediterranean sun. Jon was content with getting his portable DVD player set up while the rest of us concentrated on watching out for him. We still can’t go anywhere for more than a day without bringing his DVDs with him, we just won’t be able to cope without them. It’s getting to the stage of dependence on them; it’s the one thing we can rely on to calm him down if he gets angry or upset. The stresses of the first day were certainly being brought to the surface between my parents, probably from sheer exhaustion, bickering at the smallest things, luckily nothing too serious.
After the guns of World War III had ceased fire, we made our way down to the pool as we would continue to do for everyday while we were there. Jon loves repetition and we’d been there before so things were familiar to him but it took some settling in all the same. For the first three days it was simply breakfast, pool, lunch, beach, room, dinner, bed to establish a routine. I’m sure the majority of you reading this blog will know what I’m talking about.
After the first three days, I distanced myself somewhat from my family after finally finding some English friends to hang around with. So after that I wasn’t around to be with Jon as much as I used to. I still ate with the family but that was as far as it went in terms of company. Jon wouldn’t eat with us at the table so we had to feed him in the room before we headed into the restaurant for the rest of us to enjoy dinner. While we got food for ourselves having ditched the gluten and casein free diet, Jon nibbled on the bread that was available from the buffet. The other families there must have been thinking “Do these people only bring this boy up on bread?!”
We spent ten days there and I’m not just sounding corny in saying it was a relief to be home. In my Mums words “It wasn’t really a holiday, more a change of scene”. For my family it didn’t turn out to be the relaxing getaway that they had planned. It was constant surveillance of Jon all the time we were there. Unless he was in the pool, we never left his side. He had to be within a few metres of us. We really can’t let him do anything without a member of the family being right there with him.
So as “normal” family life continued back home, a rare excursion to the supermarket seemed to be the order of the day for me, my brother and my Mum. We begin with the routine trip upstairs to the DVD section where as usual, Jon gets Mum to cough up the cash for a DVD that he already has three of at home. I have to hand it to him though; he does a better job at it than I do! All appears to be going well, we’re about 3 quarters of the way down the shopping list and then, Jon began bending himself in half almost and making pushing sounds, accompanied with the groans of agony both Mum and I realised what he’d just done. Soiling himself in the middle of the store at age 12. You couldn’t make it up. In true British fashion we both tried to laugh the situation off and comically shielded Jon from the public’s eyes, both with embarrassed grins on our faces, we really don’t consider it a huge panic anymore and just take it in our stride. Luckily Mum had a spare pad with her but no wipes so we had to make our way over to the pharmacy desk and buy some. By then, the awful smell was getting very noticeable and I would be surprised if there weren’t more than a few cringes as we walked past people.
As well as comical escapades, Jon also gives us some really special memories. The things that normal families would take for granted mean the world to us. For the first time in his life, he got dressed himself completely without assistance. He even chose the clothes he wanted to put on! Most people would see this as “It’s a twelve year old boy dressing himself, so what?” they just don’t understand how much time and effort is used teaching him the simplest of tasks. Completely unaware of the significance of his actions, he sat back down at his computer and carried on as if nothing had happened. Whatsmore is he’s done this ever since as if he’s proud to have mastered it too. At last he’s learning to be a boy.
Within the space of a week, he gave us another heart-warmer. Dad was gardening underneath Jon’s bedroom window (and that’s not the amazing bit!) Jon leant out the window and shouted “Daddy!” as crystal clear as you could hope for. Jon was looking straight at Dad and he did it again, showing that he knew who he was talking to. He really knows how to make our day. At last after 12 years he’s finally thinking and responding. Having tried for years and years to get him to notice me, he’s at last paying me some attention. Mum’s saying that it’s down to bio-medicals and a gluten and casein free diet that makes the change. It’s by no means my field but it really does seem to have caused a dramatic change and the proof is showing in Jon.
Two days ago, I went to visit the English family I met on holiday that I mentioned earlier. They live up in the North. It was quite amazing how much freedom you have when you aren’t tied down by someone like my brother. The guy and girl I met were called Bobby and Sophie and before we set off for the train station so that I could get home, Sophie and her Dad were discussing what they could do while Bobby was going away on holiday next week and the amount of options they came up with is just out of this world compared with our family. We can’t make spur of the moment, impromptu decisions like most normal families can. But then we get memories they couldn’t hope for.
These autistic children deserve so much more; the trouble is giving it to them. You see, autism isn’t bad by any means, just extremely different. Hopefully that’s a little bit of hope for the parents and carers who all do such a marvellous job with their respective situations. You have my un-dying respect.
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READERS BLOG.
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March 2, 2009
Here is my contribution to the debate on Cheryl Gillan’s Autism Bill, in the Chamber on Friday:
Mr. Oliver Heald: A number of us attended a useful meeting with the Minister earlier this week, and we trust that he has the personal commitment that he says he has. However, the history of the thing, as he has acknowledged, including in The Observer, is not a happy one. Promises have been made in the past and not delivered. That is why we need a law. He is a Minister, but who knows what may happen in future? We know all the vagaries, but if we have a law, we have to do what it says.
(I later continued…)
Mr. Heald: The hon. Member for Hendon (Mr. Dismore) referred to the Government’s record. The Minister himself admits that their record is unsatisfactory, and that people with autism have been let down. My hon. Friend the Member for Tiverton and Honiton (Angela Browning) was promised a prevalence study nearly two years ago, but it has not happened. Why is the chairman of the all-party group rolling over, when if we keep the Bill we can put pressure on the Government to deliver?
February 27, 2009
Today I am delighted that Cheryl Gillan’s Austism Bill won the vote in the Commons and will now go forward to the committee stage despite the Government opposing it. This is a victory for all those campaigning for a better deal for people with autism. This Bill will bring hope to the thousands of people’s lives affected
February 26, 2009
Tomorrow I will be backing Cheryl Gillan’s Autism Bill in the House. The Bill, supported by the main autism charities, would ensure that local councils provide much-needed support for people with autism and their families.
I know from constituents I am in touch with how important it is that autistic people are provided with the right kind of support, and this Bill promotes a multi-agency approach to the delivery of services to ensure an effective transition from child to adult services.
I and several other MPs supporting the Bill met Ministers on Tuesday and were told that the Government would agree to several of the proposals being put forward, including issuing new regulations to ensure Local Authorities take the needs of children with autism into account in their planning, and new guidance to help Local Authorities implement the Government’s Adult Autism Strategy. We could now decide to drop the Bill and wait for the Government to make good on its promises, but the need for action is urgent and we will continue with our efforts to put the Bill on the Statute Book so that the commitments are firm in law. The neglect of autism must be addressed.