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’m not a very organised person and with three noisy boys am often holding at least two different conversations at once; one about socks, another about dinner tonight, all while trying to reply to a work email. No wonder I drink. My heart therefore sinks when I’m given some organised therapy to do.
It’s not that easy. First I have to find some time and space at home. It’s hard enough to get Joseph to do some drum practice, let alone persuade a reluctant Archie to do some therapy. Usually I need to have taken time out of the working day to have prepared something to use for the session, which means my props end up half made. And so on and so forth; it’s just more chaos amongst the chaos. I’ve held it together and done it when it’s been necessary but it’s never really come that easily.
All of which means I love the Vantage Lite. We can take ten minutes out to chat and in that time we’ll stumble across new words. We’re doing useful proper ‘therapy’ without either of us being inconvenienced. And – now this bit is for those who have been asking me how easy the device is to use – we can use these new words straight away, even when I don’t know where they’re located on the talker. There’s a magic button called ‘ICON TUTOR’. You press that, type in the word you’re looking for, and it gives you the sequence or sequences that will produce that word. It’s become a great friend.
In the video below, we get a chance to use the word ‘lift’ (while holding the aforementioned two conversations at once) and you can see it’s very easily located and taught. I find moving Archie through the sequence either hand over hand or as a model a couple of times is enough for him to remember it for future use. Hand over hand can be better because the child needs to learn a smooth motor pattern, so if they take a long time to move from one button to the next that motor pattern isn’t really being established.
There is (potentially) something I may have done wrong here and may need to change. The ‘lift’ that is programmed into the speaker is a verb. You can tell this because the final key in the sequence is coloured green indicating an action. Archie here is using lift as a noun. My first thought it that it doesn’t matter; I don’t produce the word ‘lift’ differently depending on its meaning, that’s established by the context. My mouth motor pattern for lift is always the same. I’ll check, and if I find out that I was in fact wrong, and that LAMP recommends adding a new noun-lift to the talker I’ll correct here.
Edited to add: Verity from Liberator has confirmed it’s fine to use lift-verb to mean lift-noun. After years of thinking of symbols as being representative, as having a meaning themselves, it’s taking a while to adjust to them meaning pretty much nothing- they’re just a guide for the motor patterns which is where the language lies. Just like the rest of us I guess.
As can be seen from the photograph the Vantage Lite screen contains symbols. During LAMP training one of the concepts stressed is that these symbols do not represent words as such. So when the child is learning to use the system, they’re not learning to match a symbol to a word, they’re learning a motor pattern. So pressing a sequence of buttons produces a particular word; that never changes. It’s described as being analogous to speech – so if I move my mouth in a certain way I produce the word – ‘surfing’, if Archie presses a sequence of buttons the talker says ‘surfing’. It didn’t initially incidentally, I had to bin baseball to add surfing.
After years of PECS this concept; of the picture not really representing anything at all took a bit of getting my head around. (Although thinking about it during the initial phase of PECS the picture has no meaning), but Archie helped out this week by demonstrating precisely this. He was playing with the talker and I could hear him exploring ‘hammer’, ‘nail’ ‘saw’. Next he appeared next to me ‘ saw’ ‘saw’, then pointed to his lip showing me where he’d bitten it. It did look pretty sore (saw). He then dragged me to the computer where he opened google maps and quickly (of course) located the hospital. A quick point at the hospital, to his lip and another sequence of presses to get ‘saw’ and I was left to tell him that no, he didn’t really need to go to the hospital to have his lip looked at. So he asked for a blood test.
Still no up to date video of Archie using the talker, the past few weeks have been a bit manic as middle son Joseph was making his professional acting debut which involved a lot of ferrying around and me getting pretty behind with work (worth it though, great experience for middle son). However, Martin and Annika at Discovery Surf School made a lovely video of Archie surfing on a surprisingly warm December morning. It was pretty windy and wild, just the sort of conditions Archie loves. The video gives me goosebumps: