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.
Well that is weird because we have had a very similar rollercoaster here. Testing camping trip at the start (I don’t think I’ve ever heard the words ‘home’ and ‘iPad’ said so many times) followed by a more relaxed holiday near Kingsbridge with a couple of horrible meltdowns thrown in for good measure. H has also been plugged into an iPod for much of the time – it seems to make long car journeys (which he used to love but now seem to make him anxious) more bearable. I need to encourage more age appropriate musical taste though – we are still firmly stuck in Rodgers and Hammerstein, CBeebies and nursery rhymes here! Have started him on high dose fish oil since we’ve been back which seem (cross fingers) to be relaxing him – just had most chilled visit to dentist ever. So definitely a summer of highs and lows for us too – you have my sympathies, as I find it exhausting to have to be so vigilant all the time.
It has been a supermoon of course – which has had an impact on (lack of) sleep patterns. The vigilance is hard isn’t it? Archie has been so quick and sudden and unpredictable, took him to Sainsbury’s he was running happily around, laughing as we queued to pay, then sobbing by the time it actually was time to pay. And of course he can’t have any sort of discussion about it as anxiety rockets.
We need to book our Uxbridge accommodation still don’t we? (Party on!)
Glad the dentist went well – our dentist trip was pretty chilled as well (although still absolutely no instruments in mouth thank-you-very-much)