About

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.

13 thoughts on “About

  1. Pingback: It’s arrived! | A Life Unlimited

  2. Pingback: It’s arrived | A Life Unlimited

  3. Hi,
    I found your blog through your post on Kyle Coleman’s page. Kyle is my cousin and strangely, I think I was in Archie’s class on one of my teaching practice placements!? I really recognise him! I was on placement in Devon and assume that you are local to that area…judging by the wonderful surfing pics! Kyle and Archie should hookup for a surf sometime!

    Love the blog!

    Pippa

    • Oh you might well have have been! Small world! There is another Archie who is autistic about the same age local to us, but I think they’re quite different (I haven’t met him, but have a few friends in common). He loves student teachers coming into his class now, is apparently very sad that the most recent person on placement finished this week.

  4. this has made me cry 😦 from the begining when we found out about the lamp trial i have dreaded the time coming when we will have to give it back,,so cruel to give a child a voice and after 4 weeks take it away again,,,however our AAC team say they are confident in getting the funding,,though it can take several months,,
    how wanderfull that a donor helped you,,and lovely that you are doing this blog for them x

  5. Hello, I have nominated you for the Liebster Award! I appreciate your writing and since I was nominated, I felt it only right to nominate my favorite bloggers as well. This award involves a somewhat lengthy process, so please don’t feel obligated to participate. But, if you’d like to, please do! You deserve it! Either way, just know that I appreciate your writing. For more information you can go here: http://mewhoami.wordpress.com/2013/03/04/the-liebster-blog-award/

  6. Pingback: The Liebster Blog Award | mewhoami

  7. Hello Archie, it’s lovely to be here. I worked with people with Autism for many years in Brighton and only got as far as using Makaton so I am very keen to learn all about the communication methods you develop. best Joanna

  8. Thank you for the #follow 🙂 Another blogger directed me to you after my son experienced surfing for the first time in August. It is amazing what happens when you just add water to the kiddos. I am looking forward to reading more and watching all of videos of Archie on the water. Its making me inspired to plan a beach vacation next summer so that my son Johnny can do a lot more of this.

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