A risky business

I was talking to a friend yesterday about how much Archie likes it when the swell is large and how he gets taken out to the back to catch long rides back towards the shore. I explained that sometimes I can just see him bobbing up and down in the distance with the coach; rising and falling with each wave. My friend asked me whether I ever worried about him when it’s rough; I said no because I trust the coaches who take him out.

When you have a child with severe learning disabilities your whole life becomes about assessing risk. You visit a friend and rush upstairs to check the windows are shut and locked. You pick up small items because your teenager might swallow them, you triple lock your front door and the childlocks remain permanently activated in the car, long past childhood. You have to be constantly aware of where your child is, and who they are with. Not everyone can cope with supervising a severely learning disabled child because they underestimate the intensity of supervision required, which means that you often cannot take even five minutes out. You can’t stand and gossip with a friend if you don’t know exactly where your child is. It can make gatherings fairly pointless. Everyone else gathers and you wander around after your child away from everyone else.

 When children with autism or learning disabilities surf they typically stay close to shore and in depth. Buoyancy aids may also be worn. In Archie’s case he’s developed strong relationships with the coaches over the past couple of years and some of them now know him well enough to be able to take him further out or in heavier seas.

For me, watching the independent relationships build between Archie and the coaches has been one of the most rewarding things about Archie learning to surf. Initially I used to make sure I was on hand, so that I was available if we had any problem behaviours. I was always nearby, I was his constant shadow.  Now Archie has such strong relationships with the coaches that I just hand him over, they take him off to surf, while I have a bash at catching a few waves closer to shore. I don’t have to worry about where he is, or whether he is safe. Even in big heavy seas I can hand him over and know that for the next hour he will be doing his thing, and I can get on and do mine. I don’t have to supervise or intervene, I can leave him to it. Not having to worry I can switch off and lose myself in the sea for a bit. It’s proper respite for an hour.

For both of us it’s a little hour of freedom. I don’t have to risk assess and monitor his every move and he doesn’t have to be pulled away from something potentially damaging every few minutes. The most dangerous part of any surf trip is probably getting changed in the car park  particularly because Archie likes to run up to cars that start their engine  in an attempt to catch some handbrake action as the car drives away.

For anyone wondering Archie’s request was granted and he did get to surf today. The swell was small, but clean and there was a fun little wave to catch. Archie was taken across the river to Bantham while I stayed on the Bigbury side not trusting my ability to paddle back. I could see Archie and Jon in the distance, their blue and red rash vests visible as little dots amongst the other Bantham surfers. I pondered a little on my conversation yesterday; how comfortable I was with Archie being a barely visible dot in the distance and how a few years ago I perhaps couldn’t have imagined having enough trust in anyone to have allowed them to paddle him off into the distant blue. The people who do this know who they are, and to them I say thank you.

Surfing please

Another post-school chat. Archie’s pretty clear that he wants to go surfing this weekend.

During the summer holiday we tend to surf every week, but I try to stretch that out to every other week during the rest of the year (unless the surf is really good in which case we may grab have a few weekly sessions). Archie didn’t go last week and is pretty keen to get in the water again. He can even communicate a certain fussiness about which day he would prefer to go.

Purple day

Another PhotoBooth opportunity snatched yesterday.

To understand this video you have to know that Archie’s school has a different colour for each day. So on Mondays he wears a yellow t-shirt and sweatshirt, Tuesdays he wears blue and so on. Purple day is Friday.

I think this video shows that Archie will talk about all sorts, and that he’ll correct me if I misunderstand.

Recipes

I don’t have much to say about this post really. Archie wandered over for a chat while I was working on the laptop and it seemed an opportune moment to switch on PhotoBooth and record the conversation. I think it shows how easy chatting with him is with him now.

He’s been doing a lot of cooking at school recently (they use it as an opportunity to do extra work with the talker) and has been coming home with delicious looking scones and quiches. I don’t always get to eat them (Archie often eats the lot, or if I forget it’s a cooking day Mad Dog opens Archie’s school bag with his nose and helps himself).

Memories

The last post sort of links to this, but I didn’t want to combine the two as this is a step away from autism.

Archie’s memory is extraordinary. I have posted video about this before. Today I was talking to a friend about dementia, in somewhat simplistic terms the opposite of Archie’s memory. In both cases I suppose the memory isn’t functional as such. Archie’s inability to forget has been known to cause us problems. He became very upset for example on the anniversary of our trip to Ireland and watch out anyone who visits us after a three year gap in a different car. Memory it seems is something perhaps we don’t notice until it doesn’t function in quite the way we want.

My friend reminded me that she had made a short film about memory loss with the wonderful Maxine Peake. It’s not autism, but this film is beautifully shot and worth a watch when you have a spare five minutes so it’s sneaked its way onto the blog. I’m not sure that ‘enjoy’ is quite the right word, ‘admire’ perhaps.

Broken

Archie is very good at spotting details. He’s been known to show me lampposts on google maps that have changed, and random front doors that have been painted. So it didn’t take him long to spot the broken window catch when he arrived home from respite.

I should probably have cleaned it before photographing. Anyway in the past this would have resulted in us being grabbed, the window pointed to and Archie saying ‘nanee’ whilst signing (sort of) ‘broken’. Nanee being broken I assume.

With the talker we got a bit more:

key open window not followed  by new key. I’m not sure what the ‘ases’ refers to. Maybe how he feels about it.

Surf and Sound Project

The video of the combined surf & music session with Plymouth Music Zone has been posted on YouTube. I think Archie is doing more shouting than playing but I do quite like the sound when the piano comes in (well not Archie’s shouting, but the piano drowns him out). The video is from the same footage I used for the ‘Five Went Surfing. Again‘ video I made accompanied by music from Ruth Stavric so you may recognise some of the film.

PS <whispers> For the eagle eyed; yes Bigbury is in Devon, not Cornwall 🙂

Anyway a big thanks to everyone involved in the project. Discovery Surf School of course, PMZ and Plymouth City Council for funding it.