This blog was started as a thank you. A very big thank you, an enormous thank you. A thank you to someone I don’t know and may never have met, and quite possibly will never meet.
It is about my eldest son Archie who is severely autistic and non-verbal. In the summer of 2011 he had a trial using LAMP with a Vantage Lite. This trial was a huge success. We’ve tried communication aids (low and high tech) before and success has been limited. In part because Archie’s always found it faster to communicate using gesture, vocalisations and props . This trial was different, within half an hour of getting the device he was able to say ‘eat more purple sweets’ and he took to directing me left and right in the car within days. This video was taken towards the end of the trial, and he’d been shown ‘chips’ about five minutes before it was shot.
Archie was pretty upset when the trial finished and his SALT had to literally wrestle it out of his hands (as he tried to steal it back from the bag). That’s the problem with trials. They’re necessary, to find out whether a system is correct for a child, but it can be pretty traumatic when the first effective voice a child has ever had is removed.
The problem post trial was funding. The Vantage Lite costs just short of six thousand pounds. And there was nothing on, for example, the iPad that used anything approaching the same system. All the affordable AAC apps use categories to arrange symbols, the LAMP system is different as explained elsewhere in the blog. The upshot of this being that there was no cheaper alternative. In order to apply for charity funding we had to get a refusal from the local authority, this in itself was looking to be a tricky process as we couldn’t even find out who to apply to, and refusals can take months. My local authority support worker did make clear that there was no money available to fund this sort of device, although yes she thought it was great and hugely beneficial to children like Archie and no she didn’t know who the funding application should be sent to. It was while we were stuck at this first stage that I received an email from Justine Roberts who runs the website Mumsnet; an anonymous donor wanted to buy the device for Archie. Justine acted as the go-between, paid the invoice and a week later we had received a bright green Vantage Lite. Archie chose the colour.
We are all incredibly grateful. This device will change Archie’s life, in the few weeks we’ve had it we’ve already heard him say more than he has said in the last 12 years. We are still pretty overwhelmed by the donor’s generosity and extend a huge thank you to whoever they are, wherever they are. The aim of this blog is to track and share progress, so that the person who donated this to Archie can see what a difference it is making to him.
And finally, a kind of baseline video. This shows how the Vantage Lite was being used during the trial, and also shows a lot of the other methods Archie uses to communicate, from tapping with his brother Joseph, to vocalisations and some sign. The Vantage Lite slips in and is used in addition to these methods. My guess is that as Archie learns new vocabulary the Vantage Lite will gradually replace these other methods as it becomes a faster way for him to make himself understood. I for one cannot wait to see where we end up with this. For the first time in 12 years my son has a voice that anyone who speaks English can understand.