Back to the thank you. We’ve just started using Proloquo2go with Archie. This is an app that plays on the iPhone/iPod Touch and iPad. We’ve actually had it for a while but my old iPod Touch kept crashing when we tried to use it so I put it to one side whilst waiting to buy an iPad. I recently was given a free iPod Touch and so that’s been given to Archie along with some Maingo2 portable speakers, and hey presto a neat little communication aid. I suspect he’ll do better with the iPad (not so fiddly) but that will have to wait a while.

Proloquo2go costs around £100 for the app – which sounds expensive until you compare it to specialist communication aids (about $8000). Having something relatively cheap means there’s no need to get too precious about it which in turn means it tends to get used. I would love fundraising to be able to buy something like a bunch of iPads loaded with Proloquo2go for the school or respite centre. Many children with severe learning disabilities seem to use iPads fairly intuitively.

So Archie is brand new to this and it took us a few takes. Here’s one we did earlier:

But we kept at it and eventually had some success

I wanted to finish with a great Ray Carling clip – Ray has so many good lines during Ashes to Ashes. I have trawled You Tube and found some funny examples but many in 10 minute clips. I nearly posted Uptown Girl, but eventually settled on this clip which shows off the clever script writing of Ashes to Ashes.

Cheers Dean!

Kate Winslet has launched The Golden Hat Foundation after narrating the film ‘A Mother’s Courage’ (originally known as The Sunshine Boy). This is a film I am very keen to see- the trailer (above) looks fantastic. I’ve written briefly about this film before on my autism review blog.

The stated Mission Statement of The Golden Hat Foundation is:

“The Golden Hat Foundation is a non-profit organization dedicated to eliminating barriers for people with autism around the world, and creating an environment that holds these individuals as intellectually capable.

The mission of the Golden Hat Foundation is the establishment of innovative living communities that offer people with autism the opportunity to learn to communicate effectively, receive an education, job training and enjoy recreational activities, all within a supportive social network.

When given a suitable education and the means to communicate effectively, people with autism can truly realize their dreams.”

All terribly important and I really quite agree – if I had to write my aims/hopes/wishes for Archie it would be these.

Effective communication is key to realizing dreams. We had a good summer in the main because Archie’s communication has improved so much in the past year. I’ve written recently about my hopes that Archie one day might speak. Even 20 words would make a big difference. At the same time new technology makes alternative methods of communication far more affordable. The resources section of the Golden Hat  Foundation includes a link to the Carly Fleischmann story.  I do feel these are exciting times for those with non-verbal autism and I expect to see big changes in expectations and aspirations over the next 20 or so years.

It would be wonderful to get a white t-shirt from Kate. Not that easy, but I’ll have a google for an agent, give it a go and keep my fingers crossed.

I seem to have run out of applause videos on You Tube so decided to make my own. I thought this would be relatively easy as Archie has finally made a link between cameras and capturing a moment. Hmm not so easy. It took a few goes. Eventually went for special effects with the iMac inbuilt camera and the results are below. His younger brothers helped enormously but Archie did sign (his version of) thank you, so a success. Sort of.

I wanted to finish with an Ashes to Ashes clip featuring Montserrat. I quite fancied the gun in hand/wedding dress scene or her Life on Mars moment but couldn’t find either of them, so eventually settled for the one below. Big thanks all round from us and on behalf of the school and respite centre.

Both great charities that make a real difference and it’s now possible to surf all year round with Discovery Surf School through their association with Lifeworks. We’re planning to go regularly.

I seem to have found myself have a few conversations about inclusion this week. Not discussions, there’s been complete agreement, just conversations. It occurred to me after the latest one that I perhaps ought to say something about it on here as I’m trying to raise money for two institutions that at first sight could look exclusive, rather than inclusive- a special school and a respite centre: these are types of institutions that have all but disappeared in the USA.

I think something that isn’t easily understood (especially perhaps by policy makers) is that inclusion can – for some groups – lead to exclusion. None of the inclusive playschemes in our city are suitable for my son and so if specialist schemes are replaced then his world ends up a little bit smaller. Inclusion can of course be wholly appropriate and legislation such as the Disability Discrimination Act support and encourage an inclusive society whilst protecting people with disabilities from discrimination. It’s a powerful piece of legislation and has certainly made our lives easier.

However it’s important to understand why institutions such as special schools and respite centres remain essential – even in this new inclusive age. Rather than talk generally I’ll stick to talking about our situation as this is something that is in my experience entirely individual. I do know children with similar challenges to my son  who have spent at least some successful years in mainstream. Indeed my own son did in the pre-school years. Archie attended a small nursery with a brilliant owner/manager who went well beyond the call to ensure he was included. She funded herself on PECS courses, provided 1:1 even when council funding was dodgy and just generally ensured he was a big part of nursery life. Six years after Archie finally let (he continued to attend nursery part time in reception) we’re still in contact and we’re still grateful.

And then came school. About a year before Archie was due to start we met with the Educational Psychologist to begin to discuss school placement. I asked whether we could look at special school and she said ‘no because he’s coping in a mainstream nursery’. This is of course rubbish, of course we should have been allowed to look. But this was my first child, and I didn’t really want him at a special school so I didn’t question this.

We were able to sort out a pretty good statement, full 1:1 (including all breaks), Speech and Language Therapy specified in the part of the statement where it means something.  We did effectively give the school a lot of resources. Unfortunately it was never going to work. However, this isn’t really about the ins and outs of why this particular placement failed so early (it limped through the reception year, and quickly became disastrous in the first term of Year 1) – more this post is about why it was misguided to try in the first place. Yes there were problems with lack of understanding from staff, and lack of training, but one of the biggest problems was the actual physical school environment.

Mainstream schools are designed to keep people out, not keep children in. This meant a runner such as Archie had to be permanently next to an adult helper at all times. Open plan classrooms meant he spent much of the time dashing down the corridor. It can’t have been easy for staff. One of the first things I noticed at special school was that all the doors had two handles. A regular handle, and then a high handle that was out of reach of 5 year old Archie (he can reach them now, but he can also behave better now). This was revolutionary – an environment designed for children with learning disabilties. Suddenly he couldn’t dash down corridors and so he didn’t need an adult glued to him at all times. Also once he knew he couldn’t escape the classroom he found settling down to work much easier. Within a couple of terms at special school Archie was able to fetch the register independently from the school office and bring it back to the classroom. He wouldn’t have been able to ever do this at mainstream as he needed to walk past the easy to open main entrance to get to the office. I suspect dashing off would have been too much of a temptation.

At mainstream because of the dashing off business Archie was often isolated from his classmates. He was often taught in a different room, he didn’t go on school outings, he didn’t take part in school plays or school assemblies. He was completely and utterly isolated within the school community. Since moving to special school he takes part in everything that the school does. Every week he visits shops, or the library (the mind boggles at that one I have to admit), or cafes, or the moors, he swims – both in public pools and in hydro, he attends school assemblies, he takes part in school plays. Well you get the idea. Whereas inclusion meant exclusion for him, special school has given him inclusion into the wider world and he now accesses a whole range of activities that were off limits before.

Respite is an extension of this. Archie cannot go to after school clubs- there aren’t any with locked doors or suitable activities. He does go on sleepover at my parents house, but  this isn’t an activity that’s easily accessible. You can’t really ask friends to add window locks and deadlocks before your son stays. Respite provides a mix of playscheme, after school activities and sleepovers. And yes  there are locked doors and he might be inside the centre cooking or playing, but he’s just as likely to be scootering round a nearby National Trust property, or swimming in a nearby school hydro pool, or spending his pocket money in the local shops. It’s widened his world and it does this regularly.

I suppose the general idea is that sometimes exclusive ‘special needs only’, or ‘special needs and their families’ only events actually increase our ability to access life/activities that everyone else takes for granted. So we’ve been horseriding with  Horse Boy, we go surfing with Surfable, climbing at special events and even swimming with our local disabled swimming club. Actually this provides a good example of why special events are necessary. Archie loves swimming and prefers to swim with me rather than my husband (in part because I’m a stronger swimmer so can take him into the deep end and deal with him trying to climb onto my back), but he’s 11 and there are no unisex changing rooms in our city. The disabled swimming club turns both the male and female changing rooms unisex for the duration of the session. Problem solved. I would love to take Archie to the cinema – I think he would love it. But he really could potentially be too noisy and disturb the other customers so I am waiting for special sessions to arrive in our city.

Sometimes repeated special sessions results in us then being able to access mainstream activities. School and respite’s repeated assaults on the outside world mean we now can eat in cafes and queue for short periods. This year we have had so many special horse riding sessions (slight obsession of mine I must admit) that Archie was able to join in a group lesson with his brothers and cousin. He did very well, followed instructions and was happy being led and trotting around. I would do it again – a sign of success.

When I think back a few years Archie wouldn’t wear a hat and didn’t really have any concept of horse riding so really its remarkable that he enjoys it so much now. It’s amazing what repeated exposure to new activities can do, again this is  partly thanks to school and the Elizabeth Svendsen Trust where he rides regularly with school.

A rather long post for this blog, but only a scratching of the surface with regards the issues around inclusion. Really I suppose I want to reassure. For those of us on the ground it’s these specialist events and specialist provision that allows us to lead reasonably normal and active lives.  And so if you sign a t-shirt or bid on one (I have a queue of people waiting to bid on Jason Statham) or buy a raffle ticket then you really are aiding people with learning disabilities live life to to the full.

I’m 40 at the end of this year and am seriously tempted to do some sort of challenge soon. I don’t really feel up to 1000km across Greenland. Three Peaks maybe, a long distance horse ride – maybe (although that might sound a bit too much like a holiday to attract sponsorship) – even a half marathon feels fairly challenging from here.

Anyway best of luck to Heidi and Robert. There’s a Facebook group here.  I’m not sure where or how you can donate. Give me 24 hours and I’ll find out.

Archie back to school this week – seems happy to be back. This summer wasn’t so bad -in fact compared to previous years is was extremely good the photo above is fairly typical – Archie was content and able to go out a lot –  and Downham House played a big part of that. Archie had regular sessions there (twice a week) and as usual was kept very busy swimming, shopping, cooking, scootering, making scarecrows etc etc. All these activities keep him calm and make it easier for us to fill other days.  I was able to work which I find does help maintain sanity. Downham House has also put us in contact with someone who may be able to help him learn to speak – even 20 words would make a huge difference to him. School are very supportive and I feel there are exciting times ahead. Video camera at the ready……

In the interests of spreading the news about other charities that have been helpful to us, we’re about to have the annual Surfable event at Bigbury run by local charity Lifeworks. We spent a lot of this summer swimming in the sea so I am expecting it to be extra successful this year. We’ve also benefitted from being able to part-share a pony for £15 a week from Hoofbeats a charity who take in and rehabilitate horses. Will finish with a photo of Crystal, our part-share pony for the summer.

Thanks Jay.

I have very much enjoyed the last series of Ashes to Ashes – actually I’ve enjoyed every series of Ashes to Ashes, it’s about the one TV series we’ve watched religiously so I think I will send a bunch of shirts out to the cast and maybe the writers too. It could be an opportunity to try out an online raffle (still need to check out the legalities of that).  It’s also just dawned on me that Keeley Hawes who plays Alex Drake in Ashes to Ashes also played the role of the mother in After Thomas. This film is fairly well known amongst families of autistic kids and told the story of a little boy who through bonding with his dog became much more interactive and by the end of the film was pretty high functioning. There were some great and very recognisable scenes in the film. I’ve only watched it once but I remember some very accurate scenes involving attempting to cross the road (think refusing to budge- oh yes I recognise that one – Archie, now a big 11 year old keeps taking to lying on the ground when we’re out and about- only for me – he thinks it’s hilarious), a very realistic shoe shopping experience, some dreadful moments with less than supportive family members and a scene where Keeley/the mother was locked in a cupboard by her child. All scenarios to bring a smile to the face of those of us who live with autism. I’ve dug out the BBC America trailer.

I suspect After Thomas helped in raising the profile of animal assisted therapies and Dogs for the Disabled now offer therapy dogs for suitable children with autism aged 11 and under. Animal assisted therapies interest me greatly, when I’m not doing the research day job, or looking after the kids I run a pet sitting business. There really is something incredibly rewarding and relaxing about spending a quiet half hour with a pet. And of course when your child has severe autism one of the states you seek to achieve is calmness. For the child and yourself. Animals are another way in which the world can be made a little bigger for children with severe disabilities.

Archie has a bit of a thing about fur so isn’t always keen to approach animals. However, his class last year had a rabbit and he was taught to be gentle – we were sent photos home of him brushing the rabbit with a toothbrush, the rabbit looked pretty happy. We also fairly recently bought 2 rescue kittens and he seems quite interested in them. Unfortunately he’s also interested in their food and I have found him eating their leftovers occasionally. They eat his. Next on the list is a dog, to be purchased sometime soon. Although it will have to be right dog, so may take a while.

I’m not expecting an After Thomas style miracle when we get our dog. However, last week we sort of had a little one. We’d been on a Horse Boy Camp – these are horse riding camps run for the families of children with autism. I’ll do a write up soon in my blog although in the meantime there are some posts in the photoblog but it really was a special weekend. We slept in a yurt, Archie rode bareback and without shoes and in a western saddle. You can see from the photo that he enjoyed it. But more than that- he actually noticed the horse. He’s always liked riding – it’s one of his favourite lessons at school; he likes being up high and the movement but he’s never really paid that much attention to the actual horse. This weekend he did – he really bonded with one horse called Lucy, said ‘neigh’ (first – and so far only- time ever) and tried to groom her. He also stroked her – which given his aversion to animal hair and fur was a surprise. It really was a great weekend- for his siblings too, and an example of the sorts of activities that even children with severe disabilities can access with a lot of support. And the sort of thing that does make a real difference. We haven’t had that many successful holidays. We haven’t had that many holidays come to that.

The only downside of the weekend was that I had to miss the final Ashes to Ashes, but thanks to BBC iPlayer the mystery of Gene Hunt and the Genieverse was solved for us on Monday night. It was worth waiting for -a great end (yes yes of course I cried) and I’d really love to run a special  Ashes to Ashes raffle.

The extract below in particular resonated. It took me quite a while to realise that Archie’s disabled life could be every bit as good as his brothers’ non-disabled lives. 

One of the reasons why there seems such a public willingness to accept Mrs Inglis’s actions as not only justifiable, but actually heroic, is that it is widely assumed that a dependent life is a pointless life. In the vast majority of cases, that is not the view of those in such a vulnerable position. The Royal Hospital for Neuro-disability in Putney, south-west London, is perhaps the world’s leading centre in this field. One of its senior consultants told me that he has carried out psychological tests measuring self-assessed happiness among his severely disabled patients (most often the victims of traffic accidents): “Where zero is the middle of the happiness-unhappiness scale, minus five the most depressed and plus five the most euphoric, most of my patients indicate – when they are able to – that they are between plus three and plus four.”

The able bodied seem to find this hard to believe.