Mumsnet is launching a new campaign today called This Is My Child. There have already been a couple of national media articles about it in the Guardian and on the BBC website. I was asked to write a guest blog post about going out with Archie which can be read here.
The aim of the campaign is to challenge negative attitudes towards those with disabilities and bust a few myths (such as autism is just an excuse for poor behaviour). Being run by Mumsnet it has a chance of reaching a wide audience and I hope educates a few, or even many. In the early days and even sometimes now, being surrounded by a sympathetic general public may have saved my blood pressure or tears on more than one occasion.
This is one aspect of an awareness campaign. Over the years my own drive to raise awareness has changed a little. Initially I just wanted people to know and to understand what life was like with autism, and to cut us all some slack. Now it’s a little different. I want people to understand that Archie is someone worth knowing. He has a great sense of humour (yep, despite that severe autism). He’s a thrill seeker (roller coasters, and he surfs much bigger waves than me) and he’s intelligent. Faced with the behaviour of someone with severe autism this last point can be hard to understand – to be fair it took me a long time to realise just how clever Archie is. His behaviour does hide what is going on inside, although with the talker and the computer it’s getting easier for him to demonstrate that there is quite a lot going on in there. The publication of books such as The Reason I Jump help spread this message of unrecognised intelligence. As previously mentioned a writer/director friend and I have developed a film project that tells the story of a young person, not Archie but not unlike him and his blossoming into living a full life where his abilities are recognised and valued. The script has been read (and loved) by some well known and talented actors who are keen to come on board. Like many film projects funding is an issue, so, if you fancy funding a film please get in touch.
A general recognition of Archie and others like him, having lives worth living is perhaps my biggest wish for now. If people approached those with disabilities with this understanding things might change. The Mumsent This Is My Child campaign is a step in the right direction.
I have a page on my blog dedicated to Downham House, the respite centre that Archie attends once a week. About eighteen months ago a small group of parents set up Friends of Downham House to fundraise for the centre. This became more urgent when we learned that we were going to be losing the use of the hydrotherapy pool in the next door school due to relocation. Finally, this morning we have obtained charitable status which will make fundraising a whole lot easier.
It has been a busy week for Downham House as yesterday Donna (the treasurer) and I were in the local rag along with our two very angelic looking boys (don’t be fooled, they were causing chaos between them at the time). We were pleased with the article in that is talked about the important role that Dowham House plays, didn’t confuse us with Downham School (always a bonus) and explained why we are fundraising. What it didn’t really mention was the agony Donna and I put ourselves through doing Ten Tors for Grown Ups.
Ten Tors is a well known long distance walk held annually on Dartmoor. My last experience of Ten Tors was in 1986; one of the ‘bad’ years when dreadful conditions forced many to drop out. Our team completed without any drop-outs but apparently we were unusual. Twenty-six years later, it wasn’t any easier, and the weather was still pretty grim. We did have the advantage of being grown ups which meant we could stay in a bunkhouse in Princetown on the Saturday night and have a tour of the Dartmoor Brewery. However, we still had to walk 35 miles and we still ended up with blisters (Donna had a fine pair, as did Nigel – revolting photograph below), black toes (Donna) and swollen legs (me – horse fly bite I think). The original plan was for people connected to Downham House to do the walk but for various reasons it ended up being just me and Donna that had a Downham House connection. We were very pleased to be joined by friends and various random strangers (who are strangers no more!) and we were very moved by the amount of effort our team mates put into fundraising and taking part. The final total still needs to be calculated but it looks as if we have raised around £2500 – a fantastic amount and worth the blisters. Huge thanks to everyone who sponsored us.
Nigel Gifford who whizzed through the route took some fabulous photos and I’ve made a little gallery of these along with a few of Donna’s photos below. It was a great weekend and we’re now trying to plan another challenge.
We’re currently in the process of setting up a Just Giving page. In the meantime donations to Friends of Downham House can still be made through the PayPal button on the Downham House page on this blog.
Now we have charitable status we are also very keen to find our patron. Ideally the person will have links to Devon and/or an interest in encouraging those with learning disabilities to lead full and active lives. Video taken at the last Downham House surf day gives an idea of the sorts of great things the centre does with the kids in its care. Any ideas, for patrons, future challenges or for fundraising, please get in touch.
PS Update – Ten Tors for Grown Ups raised over £3000 – thank you everyone.