Breaking the Barrier 2012

Just a quick post to say that there is still time to sign up to Breaking the Barrier. This is the annual free surf event that introduced Archie to surfing. There are three sites running Breaking the Barrier events this year, Bigbury on 1 July, Saunton Sands on the 8th July and Polzeath on 15 September.

It’s always a great day, laid back and with a really lovely atmosphere on the beach.

The photo below was taken at the 2010 Breaking the Barrier at Bigbury.

All change

A few weeks ago I wrote a post about challenging behaviours. A month or so later I was invited on a course for parents covering how to deal with physically challenging behaviours. These courses are very difficult for parents to access, most run for professionals only, supposedly for reasons of ‘health and safety’. Presumably it’s okay to have parents bashed around providing they’re not trained in how to deal with it. Anyway I declined saying that Archie didn’t really have any physically challenging behaviours.

Of course I had tempted fate and about two weeks later Archie started to become pretty physically challenging. Autism has a way of doing this. Just when you think you have everything sorted, just when you think you are trundling through life quietly and happily a massive great autism spanner is thrown in the works. Actually that’s unfair, in this case the spanner is probably the p word (puberty),  together perhaps with some anxieties around the upcoming summer holiday. Archie knows he’s about to lose his daily and weekly routine. He also knows we have visitors arriving soon – which he enjoys, but perhaps almost too much as he starts to find it hard to wait or think about anything else in the meantime.

Anyway whatever the reason Archie has started to become really quite angry for the first time. The talker is helping with this, in that we can sit and discuss ways of dealing with feelings of anger. Today we actually had what I would call a conversation about it and I am certain that Archie does understand that hitting and shouting at people is wrong. That’s the first stage of redirecting it, something that we were also able to talk about, with him having an active voice in that conversation and able to contribute ideas. He’s also learning to describe behaviours and emotions. He can describe himself as ‘cross’ or ‘angry’ and recognise it in others. He can talk about undesirable behaviours such as hitting. This is quite a leap forward, we haven’t previously had the ability really to talk about difficult moments after they have happened.

Yesterday we had a somewhat challenging time at the beach. The journey there was relaxed until about five minutes before we arrived when Archie started shouting at me and trying to hit me. This continued at the beach and outside the surf school when we went to say hello. Jon from Discovery Surf took one look at Archie and decided to take him surfing, both to try and calm him and give me a bit of a break. The Archie who was handed back to me after his surf session was definitely calmer albeit still somewhat cross. He did well in his lesson, I was on the dogs allowed bit of the beach with Mad Dog and only my phone camera to hand, but if you squint hard at the second photo you might be able to see Archie riding into the beach standing alone. This is real progress. Afterwards he had a chat to the lifeguards, had lunch pretty quietly (only shouting at me for forgetting to pick up the tomato sauce) and then was pretty well behaved going home.

Yesterday was a difficult day, and I’m sure there will be more as we negotiate adolescence, but  it was certainly made easier with some surfing and the increased access to communication via the Vantage Lite.  It meant there were some good bits, and the day was in a way, salvaged. I am very grateful to Jon and Annika at  Discovery Surf School who arranged for Archie to have a lesson at such short notice, to Surf Relief who along with direct payments part fund Archie’s surfing and of course to the anonymous talker donor. We notice the difference the talker and surfing has made on the difficult days as well as the good ones.

Incidentally another course on dealing with physically challenging behaviours will be run for parents in the autumn. Please get in touch if you would like to be kept informed of dates.

Groms

I rarely cry these days; I’m hard as nails. Well sort of. But something that can bring me close to tears is seeing, or even just hearing about, children with autism or learning disabilities discovering surfing. I didn’t take the photo above, but I heard about the session afterwards (both from the mum and the coach) and when I saw the photo I found myself welling up.

The photo was taken during a 6 year old’s first surf lesson last week. He attends a local special school and I’ve spoken to his mum online. A few months ago she contacted me via Facebook, after seeing some photos of Archie surfing, to ask where I take him. I gave her the details and she booked to take her son this half term. Unfortunately the day of his surf lesson was the day  Devon was battered by a very unseasonal storm. I was still driving past fallen branches today. The surf school cancelled all lessons, but unluckily (or maybe luckily) the message didn’t get through. It was decided to give the lesson a go anyway and as can be seen he absolutely loved it! He was unfazed by the huge seas and loved the sensation of the waves crashing into him. His mum is delighted and he will be going again.

I think hearing about these little victories makes me cry because I know how much it meant to be when Archie began to surf regularly. After years of activities lasting minutes at most, seeing him find something that he’ll happily do for hours still makes me emotional when I think about it. And there’s something about seeing these kids so free and utterly stoked that is very moving. I can’t really put into words how special these moments are, although I suspect the photos in this post probably say everything that needs to be said.

Journey to Ulster

Archie is half Irish so every few years we make the trip to Northern Ireland. There are plenty of bonuses to this. We tend to head to the north coast where the surf is good (although admittedly this has never been a consideration until this year) and the beaches are empty. There aren’t that many places in the UK where seaside resorts are this quiet in August:

However, we have to get there. We don’t fly with Archie. Not ever. He doesn’t wait that well (spot the understatement) and we suspect it would be pretty unmanageable. Anyway we’re not that s̶t̶u̶p̶i̶d̶  brave. Given the title of this blog that sounds a little restrictive so we therefore p̶r̶e̶t̶e̶n̶d̶ ̶t̶h̶a̶t̶ ̶w̶e̶  subscribe to the view that it’s not the destination it’s the journey that’s important and drive. From Devon to the north coast of Northern Ireland, usually via Glasgow so we can visit Richard’s sister and the kids can get together with their cousins. These journeys have become the stuff of family legend, still talked about years later.

Remember that time we drove to Northern Ireland and Archie would only eat home made gluten free bread and we had to carry a bread maker and toaster in the car and try and fire them up in the hotel room.

Hey remember that time we stopped in that town in the middle of Wales and we thought Archie would love the little train, but for some reason he hated it and you got off looking like you’d been glassed

Do you remember when it was really rough and I was six months pregnant and you and Joe were being sea sick and I had to crash around after Archie who didn’t notice it was rough and was running around next to the magician on the ferry, and he kept going through the exit barrier on the on board shop and setting off all the alarms.

Oh gosh do you remember when had such a traumatic ferry journey that I made you ring your mum as we drove off the ferry and tell her we were NEVER GOING TO NORTHERN IRELAND AGAIN

Oh how we laugh. And then there’s one from last summer.

Remember when we drove to Northern Ireland and Archie screamed from Birmingham to Glasgow and we didn’t know why‘.

It was really quite incredible. The car journey is usually the easy bit with the ferry being problematic. The ferry involves waiting, and other people but Archie loves being in the car and providing we don’t hit traffic jams we usually have a pretty peaceful, if long, drive. But this year? Oh no. We hit Birmingham and Archie started screaming and he didn’t let up until we reached Glasgow. We spent quite a lot of time trying to work out what could be wrong and in the end gave up. Richard drove and I posted increasingly desperate Facebook comments. From ‘Archie appears to have lost his love of long car journeys :laughs hysterically:‘ to ‘Okay it appears we’re not allowed to stop for lunch‘  and  ‘Bad he’s been screaming literallly without pausing for breath since Birmingham, we’re north of Manchester and need to get to Glasgow‘. We were momentarily amused by the bossy Scottish road sign saying ‘Tell Your Passengers To Belt Up’. Er yes, we were trying.

Anyway we never really got to the bottom of it although Archie started screaming at Birmingham again on the way home. We came to the conclusion he just doesn’t like Birmingham. Or something.

Next time we go to Northern Ireland we’ll have the talker and I would expect this to be able to help with any screaming. Often Archie screams because he cannot make himself understood; he has something he is telling us; or he wants an answer to something but simply cannot get us to understand.  We cannot work out what he is saying and so he becomes very upset and frustrated. We play guessing games and if eventually we hit on the correct answer or correct understanding of his communication we’re rewarded with peace. If we guess incorrectly he becomes even more frustrated and loud. Already, this is something that we are finding hugely beneficial about the talker, it makes it so much easier to understand the problem and so cuts down on the screaming.

Last night after school Archie started shouting and complaining. Gradually it became louder. I grabbed the talker and asked him what the matter was. ‘Granny sweeties’ came the rely. All he needed was reassurance that yes my Mum was coming to see that night, and yes she would be bringing sweets and she was just running a little late. Silence resumed. He went back to happily google mapping and I went back to cooking or working or whatever it was I was doing. It took 2 minutes, if that,  rather than perhaps half an hour to sort out.

The talker may end up helping with another aspect of travelling with Archie that can be difficult. Archie looks, for want of a better word, entirely ‘normal’ and so when he kicks off or is difficult we can receive a very unsympathetic response from the public. Another Facebook status from last year’s journey suggests this was, as usual, a problem ‘Next time I travel by ferry with Archie I’m going to dish out lemons for the public to suck‘. It doesn’t really matter, but it can be irritating. The talker helps those that need the help to understand that something is up, that maybe he can’t completely control his behaviour and it can mean we don’t get shouted at. It means I don’t have to use my friend’s technique of a loud ‘TRY not to be so autistic Archie, you’re frightening that lady’. It makes all our lives easier.