Rollercoasters

This summer has been challenging. We ended the school year on a high, Archie received an end of year award and had a fabulous time at his school prom (squeal – not something I ever imagined happening).

Then disaster struck. A week before the summer holidays started Archie’s respite provision completely broke down. It had been somewhat fragile and fraught with anxiety for a while and quite a bit of me hoped that removing it from the equation would remove the anxiety from Archie leaving us free to have a pretty active but chilled summer. Having had such a brilliant summer last year I was pretty positive, and only seriously worried about how I was going to get through the huge pile of work I have.

That positivity lasted until about 11am on the first day when we had the first monumental anxiety fuelled meltdown.  I did contact various professionals who work with Archie as during that first week he completely fell apart but it seems things stop in the summer and we need to wait until mid/end of September for meetings and thoughts about how to repair access to respite (to be fair this delay is partly my fault, as I want school involved in any meeting). We crawled through the first week – luckily Joe and Louis were able to clear off, get out of the way and do their own thing quite a bit with friends. Then, things did start to improve slowly. The anxiety has reduced, I’ve reined back (my) expectations; dog walks and picnics replacing more exciting activities such as horse riding, we visited a near empty, little known, Lydford Castle rather than tourist-filled Dartmouth Castle etc. We’re muddling along okay now.

In all this there have been good moments – even in the dark and difficult moments of severe autism it’s never all bad. I took Louis camping for a few days. I put the tent up myself and lit fires while Louis found new football playing friends. I then made the beginners mistake of saying out loud (well on a Facebook status) how relaxing camping with Louis was, to wake up that night to him throwing up – of course I did, he’s NEVER ill!! – My razor sharp bucket grabbing skills saved the tent. Louis and I still got to see Joe playing Gulliver in the YMT-UK Gulliver’s Travels skills course (great course btw – highly recommended) although it was touch and go for a while.  Louis and I have been riding a bit, we’ve all had some funny trips to National Trust properties – Archie and National trust ladies often being an amusing combination, Archie and Louis had a great morning using the hot tubs and swim spas at Hotspring South West and we had a very successful annual meet up with holidaying college friends at the beach. Oh and we’ve eaten a lot of cake.

Toning down things has helped a lot. There’s been more hanging around at home than during previous holidays, this has been quite fun at times. The original version of this post had a video of Joe  practicing a song for a YMT-UK cabaret evening, which started well and then descended into the usual chaos as Archie, Louis and the dog joined in.  (Richard always says  the younger two will have no problems working in an open plan office – they’re used to working/practicing/studying/sleeping amongst lots of background noise). Anyway I thought I ought to take it down – although I liked it because it showed a chilled, typical family with a hint of autism that was funny moment. And I like family sing songs. We have lots of those, even though Joseph’s the only one who can actually sing.

Music has featured heavily this summer, Archie’s been walking around with an iPod or iPad clamped to his ear most of the time he’s at home, often playing the same phrasing from a particular song over and over again. The song changes fairly frequently – usually just as I’m reaching the stage of never being able to hear it again. I may be ready to cope with God Rest Ye Merry Gentlemen by the time we reach actual Christmas, but I’d had enough of it by 5pm last Thursday and luckily by the next day Archie had moved on.  An iPod seems to help him control his anxieties when out and about as well, so we’ve introduced that as a strategy while his anxiety levels are screaming.  As usual his musical taste is eclectic. The Stone Roses, Ride, Ben Howard, Cosmo Jarvis, various musical theatre shows, the previously mentioned christmas carols,  Kyle Coleman and CBeebies theme tunes all taking a turn.  The effect of music on Archie is something we’ve noticed since he was tiny. He was able to sing perfectly in tune as a toddler, as he lost the ability to speak he started to sing and he used to react physically to music, shaking all over for example when he heard powerful classical peices. I’ve recently come across this book and have bought it and added to the ‘to read’ pile. I can’t tell you anything more than that as my concentration is shot to pieces – I plan to read it in September and will report back.

And while we’re talking music may I take a break from planet-autism to recommend catching a listen to Noel Sullivan’s (aka ‘Noel from Hear’Say’)  new album – Here I Go Again. It’s good; a mix of songs from shows he has been in and a couple of his own numbers and he’s signing and personally dedicating copies he’s selling at the moment. The CD has passed the Archie test; we arrived home while True Colours was playing and he wouldn’t let me turn the car off until the song had finished – so a vote of confidence from him. Coincidentally True Colours is a song I associate with Archie, after his teacher many years ago sent home a slideshow of class photos at the end of a school year set to True Colours. Try watching THAT – photos of 6 littlies with severe autism while listening to True Colours – the lyrics are enough – I bawled.  Hear’Say passed me by a bit, (was more of an indie gal), so Noel has been a bit of a recent find for me – but  he really does have the most amazing voice.  If you get a chance to see him in the current Rock of Ages UK tour, do. Joe and I grabbed £10 tickets to see it in Torquay, and after a dreadful week when Archie’s respite provision was just starting to crumble, it was a very welcome interlude to all the hassle. It’s very funny, quite rude in places (if you’re thinking of taking kids), although not so rude that I had to cover Joe’s eyes (as I did during part of the Plymouth University Musical Theatre Society production of Jekyll and Hyde – my God!!!) and in one song, in one note Noel shows just how talented he is….. If you need proof about how incredible Noel’s voice is, have a watch of this and I challenge you not to go all shivery:

So we’re mid way though the happy holidays. I am looking forward to the normality and above all the calmness (for Archie) that September will bring. But, but, but… things are chilled enough here now to be able to climb down from the constant vigilance and management of the first couple of weeks – at least some of the time. We’ve yet to go surfing – mainly because it has been flat – we did have a chilled paddleboard around Burgh Island shortly before the holidays, but Archie doesn’t really do much in the way of flat these days.  It has been a proper rollercoaster though. Some real lows, but also good moments – the photos focus on those. And please note a rainbow chose my tent to end at. That’s got to be good.

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.

Ferry

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).

big dippper

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.

surfing portrush

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.

What’s it like to have a brother with autism?

This moving video just came up on my Facebook feed. It’s lovely; if you have five minutes (well, six) please watch.

It’s where I’d like Archie to end up with his brothers (or where I’d like them to end up with him maybe), with their own relationships which they value. It is heading in that way; with each year they become closer and do more together – surfing, swimming, computers, music, dog walking, horse riding…. Archie often now seeks out Joseph in particular, to help him with the computer or to have a conversation. And two days ago Louis and Archie were bouncing around on the trampoline together for a good ten minutes having a conversation about handbrakes and giggling together as they did so.

No video yet, but a selection of photos from the last 4 or 5 months or so.

Surprise!

There’s a line in Priscilla Queen of the Desert (well the musical version anyway) where Tick introduces his son to Bernadette with a ‘SURPRIIIIISE’ and Bernadette falls over. It’s funny and it’s been replaying in my head this week quite a bit.

First time was when I asked Archie his address. And he told me. His address isn’t stored as a phrase, he had to find each word separately, which he did without difficulty. He knew his house number as well.

Next surprise was when I sat down with him to read bloody Biff and Chip (I clearly celebrated too early when Louis finished Biff and Chip a few years ago) with him this week. I decided to point to a few words to see if he could read them by finding them on the talker. Mum, Joe, dinner, carrot, eat, and, home, finished were no problem at all. He found them without hesitation. After one page he’d had enough of reading, but still I was impressed. This was done with a typical teenage reluctance to engage in homework (one eye on the iPad).

I thought it time to update with a couple of short videos, these were taken today. Notice how he’s now playing whole phrases after he’s found each word. Also ‘not’ seems to have moved into the correct position in the sentence. And there’s a little joke where he says yes to something he knows he isn’t getting. Notice as well how at ease he is producing these longer sentences.

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.

 

Back in the water

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.

cold hands

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?

Countdown to the end of term

Archie always finds the last few weeks of term difficult. He knows the school holidays are approaching and everything is going to be diffy diffy different (as we say) and this makes him somewhat anxious.

He was getting himself a little wound up last night. After a bit of shouting my mum wrote out a countdown of days for him. We then used the talker to go through how many sleeps there are until school shuts. Archie then spent some time matching my mum’s list to his talker. I was quite impressed with his literacy to be honest, he had no problem picking out the days on the sheet of paper.

Peace was restored.