I was asked to write a guest post for Mumsnet yesterday. It was sort of about our time at a Horse Boy camp a number of years ago, and sort of about the positive effects of the great outdoors on Archie.
I am having a hellishly busy week this week, so haven’t had much time to put together a post – so for now I thought I’d add a few recent photos of Archie enjoying outdoors life, our favourite picnic spots etc. I’ll write more on being outdoors after we’ve done our first wild camping trip.
We have had the most dreadful week. As is often the case when dealing with special needs, due to something that should never have happened. One day I’ll write about it.
However, difficult times aside Archie and I headed to the beach on Saturday and found amazing surf. Even in the worst weeks it’s impossible to be unhappy when the surf is this good. Archie headed out the back with Harry where Harry’s friends cheered the pair of them onto waves. A bucketful of stoke later we headed home, singing our hearts out to Priscilla all the way.
You may have noticed it has rained a lot over the last few months. We certainly have. We booked in for our roof to be repaired in December, scaffolding went up in January, it hasn’t stopped raining since and work hasn’t been able to start. One bedroom is now resembling a swamp. Facing up to the problem headfirst and with much strength I have shut the door (and will open it again when it stops dripping in there).
One effect of the frankly bloody awful weather is that Archie and I have been surfing a grand total of twice in 2014. We usually surf pretty much year round, but it’s been so wet and the waves have been too big, even for Archie. The water quality can be pretty poor when it rains so much as well and I wasn’t all that keen to trade a surf for a stomach bug.
So our first trip back into the water was with some trepidation. It was a gorgeous day. The water was freezing, but the sun was shining and there was a decent swell. The beach was busy and (luckily as it happens) pretty crowded. Archie had a great lesson with Harry H and I was delighted to be able to catch some waves even while wearing boots (usually I just catapult off the board if I surf in boots).
After our lesson the beautiful day quickly had a shadow cast over it when Harry H spotted someone unresponsive in the water. He was helped to pull him out of the water, and together with another Discovery surf coach, Harry B, started CPR. Because the beach was busy some doctors passing by were rounded up to help, the Bigbury defribrillator was fetched and the air ambulance called. Archie paid no attention to a helicopter landing on the beach, focussed as he was on his post surf sausage sandwich. I felt this was preferable to the people taking photographs of the scene before them (why oh why would you do that?). And it is – thank goodness – a story with a happy ending – a few days later we heard the man was expected to make a full recovery.
We left before the air ambulance – (and passed the land ambulance taking the wrong turning – we did redirect it – although it reminded me of the need for an air ambulance in a rural county and I went home and made a donation to the air ambulance service) and later I looked on Twitter for reassurance that the man had pulled through. I didn’t find any reassurance there, but I did find a photograph of Archie and Harry H. Taken by a random beach goer who had obviously spotted the absolute joy Archie gets from surfing. After such an emotional day (it really was), I must admit I had a little something in my eye.
I picked up a new car on Thursday. Cars are still very exciting to Archie, and this one has a proper handbrake (an a chunky one at that), so is particularly exciting.
By Saturday afternoon it had packed up. I’d driven out to Bigbury to surf in the morning. Had some trouble getting it going at Bigbury but luckily managed it on about the 15th attempt. Tried to go out again a few hours later and it wouldn’t start. Archie sat patiently next to me for ten minutes while I swore at the thing, pressed random buttons and flicked hopelessly through instruction manuals. RAC’s verdict is a dud starter, and after rolling it backwards down a hill for a hill start, the RAC man drove it back to the dealers. Where it remains.
I was very impressed by Archie. Six months ago a non-starting car would have led to him launching himself through the window in frustration. And a new car would have been a hundred times worse. After ten minutes of trying I suggested we switch to Dad’s car. This was met with no complaints, and Archie even waited patiently while I ran around the house hunting for keys.
Hopefully it’s progress rather than him hating the new car (I think I hate the new car…..).
Luckily we’d been surfing before the car died. Fab waves, they were huge. I surfed for about 45 minutes when the waves became even bigger with the dropping tide and so I decided to grab my camera. I only had my phone on my, so the photos aren’t great, but they sum up the session.
Autumn has arrived in style since the above photo was taken last Saturday with rain, rain and more rain (my dad’s patch-up job has worked though, and the roof doesn’t seem to be leaking – hoorah). We’d headed for Bigbury for a surf; found a little swell and a dead whale floating off Burgh Island. The lifeguards had been called out to investigate because a member of the public thought it was an upturned boat. Whilst it is a good thing is wasn’t, the whale caused some interest. I hadn’t given much thought to dead whales before, but apparently they can cause a bit of a problem as there are no large shark-like scavengers (as there would be in say Australia) and the sea is cold so they can hang around for a while, until they sink.
Archie has taken a while to get back into routine. Partly I think because everything has changed. Joseph has changed schools and arrives home at a different time, Archie’s bus has changed time as well, and things aren’t quite the same. He has also gone down with the first heavy school cold of the season (luckily he got his surf in first). Archie refuses to admit he is poorly though, if asked he will cough and splutter ‘no’ whilst burning up. Being poorly means missing school so is rarely admitted to. Thinking about it that simple sentence ‘will cough and splutter ‘no’ tells it’s own tale. It wasn’t until Archie was about 9 or 10 that he even had a functional yes and no, and we couldn’t have had a conversation about poorlyness.
And now a request for help. The guys who took Archie surfing in Ireland; Alive Surf School, working with Autism Initiatives NI have put a bid in for funding for tandem boards. This would allow them to take people like Archie out surfing regularly. The boards are expensive (they borrowed one for Archie’s lesson). The public can vote for them by clicking on this link and choosing Autism Initiatives NI. A worthwhile cause, and if they get the boards I’m hoping Archie will get a ride on one next year.
All the boys have now returned to school. We have been lucky; it’s been a great summer. Archie has been so chilled that, at times, he’s been almost horizontal. He only really became a little angsty during the last week of the holidays; he’d had enough and knew school was approaching.
At the end of August we managed to get some video of Archie surfing. The waves were perfect and as soon as I have caught up on my work backlog I’ll do something with the footage. For now, a little clip. This was taken by someone holding the camera surfing alongside Archie. It was fabulous to watch.
A short blogging break has turned into a long one; but we have driven the length of the country (twice) and been to Northern Ireland and back in the process.
I’ve written before about our trips to Northern Ireland, and the screaming and difficulties that can accompany them. This trip was different. Archie was chilled, and despite us being in stop-start traffic from south of Bristol to north of Liverpool he remained pretty chilled. Weirdly there was another little shout at Birmingham. He has issues with Birmingham. The journey from one end of the country took two days with a different boat than usual – this one complete with a cabin. This ended up being a godsend, Archie just sat and looked out the window at the approaching landmass of Ireland the whole crossing.
Usually we head straight up to the north coast to the beaches, but this time we detoured via Belfast for a week. Middle-son was doing a second stint in Priscilla Queen of the Desert at the Grand Opera House (a fabulous show by the way, if you get a chance to see it during its current UK tour grab the opportunity; you won’t be disappointed) and so we stayed in Belfast for a week. The city has changed a lot since I first visited a frightening number of years ago and it was a week of football in the park, the Titanic exhibition and a lot of drives in grandad’s car for Archie.
The second week we headed up to our usual spot on the north coast where we made our usual regular visits to the largely empty beaches but with some new experiences. Archie is keen to get involved in everything these days, including trying out a roller coaster at the institution that is Barry’s (it had loop the loops and everything, I screamed the entire way round).
If you had told me two years ago, by the way, that I would ever go on a roller coaster with Archie I would never have believed you. He also took part in pony trekking and roller water balls. I’ll add some photos below.
Perhaps the most exciting part of our time on the north coast was finding a place for Archie to go surfing in Portrush. Before leaving England I contacted Ricky who runs Alive Surf School out of Portrush to see whether they would be able to take Archie out for a tandem surf. Ricky emailed back and said that they had recently started an autism program, but this had been with those with more language, they hadn’t yet tried any tandem surfing, but were keen to move into working with those like Archie. So we arranged that Ricky would borrow a paddle board and Archie would have a surf. I booked the younger boys in for a lesson at the same time.
The day of the lesson I messed up a bit. I had forgotten to explain to Archie that we were going to a new beach, and he thought we were heading for a beach that he has been obsessively studying on google maps for the last six months. He therefore wasn’t very happy when we took the ‘wrong’ turning. Had I been more awake I could have prevented the misunderstanding, or given him a quick drive to the first beach, but by the time I realised what was going on it was a bit late.
Anyhow Archie was teamed up with Hanno from Alive and off they went. Surfing soon worked it’s magic and Archie relaxed and forgot about the ‘wrong’ beach. The waves were a perfect size for me (so clean and the water was so clear), but a little small for Archie. He had a few sprints around the beach inbetween catching waves. Not being used to this behaviour Hanno was a bit concerned that he might be scared, but I explained this was fairly typical behaviour for Archie and standing pointing at the board usually worked to bring him back. As the waves were smallish they decided to go for a paddle. ‘I like to train’ said Hanno. Good job; Archie was delighted to find that Hanno went wherever he pointed and they ended up a small speck in the distance checking out rocks and a nearby island.
While they disappeared off into the distance I talked to Pauline who has been responsible for finding funding to run the autism events. Well we talked and surfed, both latecomers to surfing the conditions were ideal. Pauline explained that she had become inspired to start seeking funding after seeing videos on YouTube including some of Archie. Because I’m always referring to them I’ve just created a page of surfing videos by the way. This was really rewarding to hear, after all the main reason I talk incessantly on here about surfing is to encourage others to try it out. To hear that people are being encouraged to give it a go makes it all worthwhile. Although it means I won’t be shutting up about surfing any time soon I do hope it brings others the peace it has brought Archie.
Anyway after Hanno delivered a relaxed Archie back to the beach, we managed to get a shot of them both.
We met up with Ricky the next day and talked about getting going with tandem surfing (my main bit of advice really being that it has to be an individual approach and may well be different for each child). Surfers, as a whole seem very good at this. They are very good at accepting people for who they are and they usually have a deep love of the waves and the sea that they’re happy to share. Certainly we found the guys at Alive just as welcoming as our friends at Discovery. Richard often describes surfers (along with the teachers at Archie’s school) as ‘a different breed’ and I think they are. Anyhow we are delighted to have found a surf school for Archie up in Portrush and will be back next year. And of course we highly recommend them. I should also add that the north coast is a wonderful place to surf. The beaches are so empty – even in August – and it gets good waves, with a wide choice of surfing beaches. A very undiscovered part of the UK.
Back in Devon we had a surf yesterday. The first one in ages (we’ve either been busy or it’s been flat). The surf was fantastic; big waves and Archie sat out the back with the big boys – local coaches and lifeguards he knows – while I caught some closer to shore. Surfers are very good at ‘doing inclusion’.
To finish; a gallery of Ireland photos, it really was a great holiday. The best we’ve had for a long time. Having an on-the-whole-chilled-and-laid-back-Archie made the whole thing much easier than in previous years. Regular holidays may be becoming a possibility.
I think I committed a cardinal sin in the autism-blogger world by not blogging at all during April, autism awareness month. I had a couple of ideas for posts, maybe something about surfing, or something about how under-used AAC devices are in the UK. After all these are the two topics I’m happy to promote awareness of, both within and outside the autism community. I was held up for the first week of April by work and then ended up rather depressed by the whole autism awareness month thing. My Facebook and Twitter feeds reminded me how terribly political autism is. I nearly ended up writing a post on how autism is really autisms and we in the autism community maybe need to be more mindful of the different needs of the various groups that make up so-called autism. But life carried on and I never really managed to put a coherent post together.
So with autism awareness month out of the way for another year it’s time to update on Archie’s progress. A lovely new development, that I have to admit I am enjoying is that Archie is now arguing with me. A typical exchange occurred today:
Archie: Granny and Grandad Ireland’s house tomorrow
Me: No Archie we’re not going to Granny and Grandad Ireland’s house tomorrow
Archie: Yes
Me: No
Archie: Yes
Me: No
Repeat x20
It perhaps doesn’t seem like much, but considering it’s not that long since Archie realised he had choices it reminds me how far he’s come in the last few years.
We’re also back in the water. After a 3 months break we’re finally managing to get surfing again. Archie has been overjoyed to be back out in the water with Harry. I’ve discovered that taking a break from January has left me really unfit, but we’ve had some fun Sundays catching waves in the sun. Archie and Harry have had some long runs into the beach on some mellow waves while I’ve been spending most of the time falling off an SUP. I had some success and managed to catch a (very small) wave standing. I think Archie’s going to be in his spring suit for the next trip out and I’m going to be able to bin the boots. Life gets better.
I don’t have much in the way of recent photos so I’ll link to the first surf video I took of Archie to celebrate the start of summer. He looks very young in this video but seems to be spending a lot of time watching it at the moment. I did genuinely seek permission to use the accompanying Aphex Twin track as well, one of Archie’s favourite tunes.
For the first ten years of Archie’s life I probably made pretty much every decision for him. Until he was about 5 he had really no concept of having a choice and would treat every suggestion as a command. To complicate matters further it took until he was about 10 before he had a functional yes and no. By this I mean it took that long until he had a way to communicate yes and no and an understanding of the concept of yes and no, in other words an understanding of what yes and no actually means. It’s hard to imagine not understanding the words, but they’re abstract and for a long time Archie didn’t. The upshot of this was that we couldn’t have simple ‘do you want to go to the park’ type conversations because Archie had no way of saying yes, or indeed no.
Gradually we developed a simple way of offering choices; ‘would you like this or this – using a picture or symbol to offer the choice’. If Archie wanted neither option then we would start a guessing game. It was slow, frustrating and often resulted in no resolution. Once an understanding of yes and no developed it made running through options easier but we were still limited to me having to think of various options while hoping to stumble on an acceptable one. Archie’s choices were limited to my imagination and he struggled to communicate a choice without me first offering it.
The talker has made all this much easier, and this improved communication has resulted in less frustration and Archie being able to have more agency over his life. We had a fine example of this this week. I booked a surf for today as soon as I realised that Archie had a non-pupil day at school. It seemed ideal, his brothers would be at school and it would occupy the first day of the half term. Except last weekend he went down with a really grotty cold. He’s been insisting on going to school but has been coughing and spluttering all week and really didn’t seem to be 100% fit to be dunked in the sea in February. In the past this would have been problematic. If I had said something was happening it had to happen, or a massive meltdown would result. There was no way to negotiate an alternative or even explore what Archie actually wanted to happen. I had to try and guess. And, as might be expected, frequently guessed wrong. The talker has made all this easy. By Wednesday when he was still spluttering everywhere I reminded him he was booked in to surf on Friday, but asked him whether he wanted to go given his cold. Different day came the reply. I was able to check ‘do you want to surf on Friday?’ no. So I asked when. Sunday. Okay Sunday, but he clarified further. Downham Saturday surfing Sunday. He wants to surf the Sunday after he’s been to respite on the Saturday. And all decided without a meltdown or me having to tie myself in knots trying to guess what he might want to happen. The day pinpointed all I have to do now is keep an eye on the surf forecast. If it’s forecast to be flat we’ll use the talker to renegotiate.
First surf of 2013 today. There was a decent enough swell, although it wasn’t huge like the session before Christmas. I took along my little Flip video camera, but Harry paddled Archie out the back so on the whole they were teeny tiny dots in the distance. They came close enough to video once:
It wasn’t particularly cold today, but we do have a problem with Archie’s hands, in that they seem to shut down when surfing in the winter. The photo below shows two very white fingers (middle finger of his right hand, and index finger of his left hand). He is already wearing very thick gloves, I am going to have to investigate heat pads for him to have stuffed into his gloves while surfing.
Post surf Archie warmed up in the car. We left the talker at home today. I recorded the little snippet of non-talker conversation during the post surf warm up. I think it shows how unclear his speech still is although with me very much leading this particular conversation we manage to understand each other without problem. We had a slight difficulty at the cafe after the surf. I told Archie he could have some more chips if he wanted but he asked for nannee. I interpreted this fairly confidently as ‘pasty’. NANNEE he said again with a frown. With no talker we were into playing guessing games. Cheeseburger? No nannee. I tried pasty again. Absolutely not. Eventually Archie pointed towards a freezer, ah ice cream? Big smile. Nannee was ice cream. It was fairly easy to get from ice cream to cornetto. Not a great choice for someone with freezing fingers, but hey who am I to argue?
A Life Unlimited 