We had a good day today, met up with some friends holidaying from Cambridge who have a severely autistic son and descended on Bigbury en masse for a surf. Archie apparently had the best surf ever with Harry. There were big waves and in-between sets he sat patiently out the back waiting without any fussing. This may have been in part due to him being half asleep having been up from 2am this morning (he was staying with my parents thank God), but anyhow it led to a good surf. I managed to actually turn the board and ride along the breaking wave for the first time ever, although I had to jump off to avoid someone standing in the way. Louis had a fabulous time, happily falling off and attempting to stand, he was getting deeper as well tackling waist deep water. Joseph wasn’t so keen on the slightly bigger swell – put him on a stage in front of a thousand people to sing a duet with a household name and he’s relaxed and happy, excited rather than nervous. Crank the swell up to more than a foot and he’s worried. It’s times like today that I’m aware how much my children really are their own people.
After the surf we headed back to our friend’s holiday apartment. Joseph and Archie messed around on the couch together, Archie really enjoying his brother’s attention. They were snuggled up messing around happily entwined. So often I find that people assume that those with severe autism are incapable of affection and do not desire human contact. In Archie’s case this simply isn’t true. He often settles himself down on my lap and as the photo shows is fond of this brothers and will seek them out to mess around with.
Yesterday Archie asked me whether we could take a trip on a train today. I agreed, which was met with some excitement, and decided now Archie is a little calmer to combine it with a trip to Cothele, a local National Trust property. We took the train to the picturesque Calstock and then walked the one and a half miles to the property.
The whole trip was a reminder really of how far Archie has come. Last time I took a train with him he screamed while waiting for it to start, this time he sat pretty quietly, last time we went to Cothele he ran madly through the house, today he waited quietly for people to walk past him and checked with me before diving up some stairs. In the past I’ve felt that keeping control of Archie out and about is a bit like containing Road Runner. Things are on the whole calmer now although he certainly has his moments and sometimes there can be noise (not today, he was very calm).
Archie took his talker (of course) and use it to comment throughout the day. For example, I wondered aloud whether we should go into the house and he decided that yes we should, so we did.
Yesterday we had one of those conversations that we really couldn’t have had without the talker. Fed up with listening to the same CD (known as Louis’ music)on loop I told Archie that we were having my music on the way back in the car (currently an eclectic mix of Ben Howard, Priscilla Queen of the Desert and Cosmo Jarvis). He accepted this, then after about 5 minutes said Louis music Tuesday Louis music Saturday. I agreed that I could tolerate this and he settled back smiling.
Not however smiling quite as broadly as he was on the train today. This smile was reserved for the glimpse he had of The Tamar Bridge and Brunel Bridge.
Just a quick post today. I headed to the beach to meet a friend staying in Bigbury on holiday. After lunch Archie and I did the usual dog walk – easy today because the tide was out. We walked around the corner and along the river, where, Archie sat down. This doesn’t sound like much, but Archie never sits down at the beach. Usually we walk, surf, do whatever we came to do, eat, then leave. Sitting and admiring the view isn’t part of the plan. I was delighted, he looked very content sat watching the river running some sand through his fingers occasionally. I’m hoping now that it wasn’t a one off.
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
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.