#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.

Archie’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.

The great outdoors

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.

Difficult Times

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.

 

Rain Rain Go Away

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.

 

Dud car

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.

Swell

Impressionist surfing

Final wave

Knackered!

Great session

Autumn greetings

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.

Back to school

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.

This Is My Child

Mumsnet is launching a new campaign today called This Is My Child. There have already been a couple of national media articles about it in the Guardian and on the BBC website. I was asked to write a guest blog post about going out with Archie which can be read here.

The aim of the campaign is to challenge negative attitudes towards those with disabilities and bust a few myths (such as autism is just an excuse for poor behaviour). Being run by Mumsnet it has a chance of reaching a wide audience and I hope educates a few, or even many. In the early days and even sometimes now, being surrounded by a sympathetic general public may have saved my blood pressure or tears on more than one occasion.

This is one aspect of an awareness campaign. Over the years my own drive to raise awareness has changed a little. Initially I just wanted people to know and to understand what life was like with autism, and to cut us all some slack. Now it’s a little different. I want people to understand that Archie is someone worth knowing. He has a great sense of humour (yep, despite that severe autism). He’s a thrill seeker (roller coasters, and he surfs much bigger waves than me) and he’s intelligent. Faced with the behaviour of someone with severe autism this last point can be hard to understand – to be fair it took me a long time to realise just how clever Archie is. His behaviour does hide what is going on inside, although with the talker and the computer it’s getting easier for him to demonstrate that there is quite a lot going on in there. The publication of books such as The Reason I Jump help spread this message of unrecognised intelligence. As previously mentioned a writer/director friend and I have developed a film project that  tells the story of a young person, not Archie but not unlike him and his blossoming into living a full life where his abilities are recognised and valued.  The script has been read (and loved) by some well known and talented actors who are keen to come on board. Like many film projects funding is an issue, so, if you fancy funding a film please get in touch.

A general recognition of Archie and others like him, having lives worth living is perhaps my biggest wish for now. If people approached those with disabilities with this understanding things might change. The Mumsent This Is My Child campaign is a step in the right direction.

Holidays

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.

Titanic

Footy

Mount Stewart

Best crips in the world

Priscilla Queen of the Desert

Grand Opera House

Pony trekking

We’ve found some surf!

Ominous sky

North coast

Surfing

Louis catches a wave

Beach brothers

Dodgems at Barry’s

Huge slide

Balls

Changed his mind

Quiet time

Empty beaches

Catch!

Arguing!

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.