#100 Happy Days – day 6

The last few months have been somewhat tricky; more about that tomorrow. But today was a happy day. Greeted by a smiley boy this morning, we headed to Bigbury, where feet touched the sand for the first time since October. The picture being waved around is a photo montage from school.

image imageArchie’s keen to surf again (yay yay double yay & a happy dance). So we tested the water. Fine without boots! I reckon. So I’m back to studying the surf forecast & hope to be hitting the waves in the next couple of weeks. Hopefully I’ll still fit into my wetsuit without turning purple.

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#100 Happy Days – Day 5

I feel terrible! I logged onto WordPress (it’s been so long they’ve changed the layout), to write a review of a completely brilliant, life changing, challenging behaviour course I recently took part in, and found that I had completely forgotten about the #100 Happy Days thing. Admittedly it’s been a somewhat challenging few months autism wise (or maybe puberty/teenage hormones wise) but there have been some good days.

I’ve started the review, and will post that today or tomorrow but in the meantime here are two historical happy day photos. Taken on south Dartmoor, on two different days they show the beauty and peace that can be found in this part of the country. I was shown this particular access point to the moor by Hillwise and Archie and I have had a few successful trips up there. I have been on a couple of navigation/hillwalker refresher days recently run by Hillwise and these were organised as 1:1 sessions so we could focus on issues around walking with Archie, and keeping us both safe. They were great fun, although I am somewhat nervous of the night navigation session I have signed myself up for later this month….

ivy 2 ivy1

Behaviour is communication

behaviours

Behaviour is communication – especially when communication isn’t particularly easy. This is something we were taught from the earliest days – that if Archie’s behaviour became challenging it may be because he was trying to communicate something. I have repeated this for years, and sort of understood it, but at times, especially when we’re just surviving a challenging time, not really fully accepted.

For the last few years we’ve had few instances of challenging behaviours. Yes, like any teen Archie has had his moments, but they’ve been few and far between, and life has been good. Archie as been able to try lots of new activities and go to many new places, with us secure in the knowledge that he would remain calm and happy. Challenging behaviours are hard to deal with in privacy, a hundred times harder in public (I have been known to tell Joe to do a song and dance to entertain the audience we have attracted).

That all changed in July. A week before the school holidays Archie’s respite provision fell apart and he went from a planned three days a week to a big fat zero. I explained that respite was going to be shut over the summer (which he seemed fine with), then provided no further information. I did not specify what would happen in September because I did not know (I still don’t) and anyway we were focussing on the holidays. This was a mistake – my first of many.

The holidays were hell. Archie’s anxiety spiralled to levels I have never seen before, and with that came pretty ferocious meltdowns. I began to try to manage the behaviour, so I’d see the anxiety spiralling and would try and stop it, or would steel myself for the explosion that I knew would follow. It was pretty difficult for Joe and Louis as well, the meltdowns are frightening for them to witness and we had to be careful where we went. The refrain for the summer became ‘don’t try anything too ambitious’, which was a shame because we’d been terribly ambitious last summer and had had a ball.

I was so busy managing the behaviours, I forgot to consider that Archie might be trying to communicate with me. I saw the anxiety was overwhelming and believed it was coming from nowhere – the best explanation I could come up with was that it was as a result memories. Then two days before Archie was due to return to school he had another meltdown and shouted ‘diyant dai diyant dai’. This means ‘different day’ and he had said it a lot over the summer, both when I could see anxiety spiralling and during meltdowns. I had understood the words, but not his meaning. When, for example he said ‘diyant dai’ on a cliff path outside Belfast, I thought he had meant we were going to the north coast on a different day and had explained this to him (at which point he’d exploded in anger and frustration). Finally, seven weeks later, the penny dropped. He’d often used ‘diyant dai’ to refer to respite. He was asking what was happening about respite in September. I  explained that he would be at home on Thursday and at home on Saturday (the two potential respite days), he instantly stopped trashing his room and there was silence. Utter silence. This had all taken place during (my) dinner and so I finished eating, then went up to him – to find him happy, smiley and very much in need of a cuddle. Seven weeks he had spent trying to get me to answer his simple question. Seven weeks.

Today I spotted anxiety soaring and a few shouts followed. I thought back to the previous sentence and realised Archie might have misunderstood and thought I wasn’t taking him out today. Rather than managing the behaviour (giving space, talking calmly, providing food, getting ready to step back,) we had a discussion, a back and forth conversation. This was indeed what was worrying him. We soon established he wanted to take the dog out, to the moors, with me, in my car. We did this, climbed a tor and enjoyed the view (see photo). Peace.

It’s been a very challenging seven weeks and it’s taught me a lot – I just wish I hadn’t been quite such a slow learner.

#100 Happy Days – Day 3

Windy beaches & shelter for those who need it. 

For years we couldn’t get Archie onto a beach. We used to visit one near home with a wooded walk opposite. We’d park up, try the beach, Archie would refuse to go on, so we’d do the wooded walk then go home. Until suddenly one day he stayed on the beach & ended up waist deep in the sea. Now we spend hours on beaches. Today was particularly windy. 

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#100 Happy Days – Day One

Archie's pig

I really enjoy reading friend’s #100 Happy Days posts on Facebook. I thought about doing it, but wasn’t so sure about managing 100 consecutive posts (not because I can’t think of anything each day, more because of the time taken to post every day). I have a fairly hideous few months coming  up though, I already have two Archie/learning disability-related  meetings booked in for September that I am dreading, and rather than get bogged down in the them I thought a bit of noticing the good wouldn’t go amiss.

So  I’ll post a hundred happy days, but I’m adapting it to suit me. It won’t be consecutive, will probably be autism focused (although not exclusive), and I’ll throw in a bit of gratitude type stuff & expand on reasons for my choices sometimes.

So today my moment of happiness came via the school holiday playsheme. The no-access-to-respite holiday has been difficult for Archie and somewhat fraught at times for us (because it’s difficult for Archie) & this week’s school playscheme has been a relief all round. Archie has loved it.  Today I took a break from work and sorted out lots of things that needed doing at home. Joe and Louis were out most of the day, and I pottered. Oh yes indeed, thanks to the playscheme, I was practially purring today.

The school has been a godsend. After four pointless terms in mainstream Archie switched to his wonderful special school aged 5 and has never looked back. Tenish years later we’re still often grateful to them. If I sat down and listed everything they’ve done it would run to pages, but they’ve taught him what he needed to learn to access life (waiting was a good one), they fixed his eating issues and he now eats everything (as opposed to no meat, no fish, no cheese, no fruit, no veg), they’ve always encouraged him, they’ve had high expectations and have challenged him. They’re flexible (Archie has joined in with students from other classes for example to do things like ten tors and water polo), they communicate brilliantly – first names all round – and they care.

I can’t really post a picture of Archie at school; lots of the photos have other kids in, so I’ve posted his pig instead. He drew that this term (and wrote ‘pig’) – and this from a young person who didn’t really hold a pen until all that recently. Drawing/writing is something I didn’t ever really expect. Seeing his pig makes me happy, and whenever I go into school these days there’s always something of that sort in his pile of work that surprises me.

So yay to school, thanks for everything.

And here’s to another 99 happy days.