Archie doesn’t watch TV. Not since he lost interest in the Teletubbies and TTFTE (as parents of kids with autism tend to call Thomas), but he joined us this afternoon to watch the Olympic synchronised diving final; his attention captured by this BBC film shot in one of his favourite places, the Life Centre in Plymouth. Archie has no interest in fame, and wouldn’t really understand the concept, but he does love Tom Daley. All the boys do. Before the Life Centre was built the disabled swimming club we attend used to take over Central Park pool on a Sunday morning. It was always an added bonus for the boys if Tom Daley was training at the time. Now the disabled swimming club has the use of the Life Centre diving pool (with it’s magic moveable floor) so we never get to see him train. Archie, doesn’t mind, he amuses himself trying to climb up the diving boards (they have very sturdy gates, thank goodness) and tries to persuade me to let him dive.
Anyway once his attention was captured by the film he stayed with us for the entire event. This is very unusual. My helper for the day decided to hang around to watch with us and we had a bit of banter going on, which for the first time ever, courtesy of the talker, Archie was able to join in with. For example, I commented on someone who seemed to be soaping themselves next to the plunge pool and Archie said ‘wet’. Joseph was laughing at the design of one team’s swimming trunks when Archie came out with ‘swim trunks wet’. It felt like yet another big first.
We were sad to see Tom Daley and Pete Waterfield just miss out on the medals (Joseph was in tears), although we cheered ourselves up with the men’s gymnastics and it appears that in the time it took me to write this one of Tom’s fellow Plymouth College students won a gold in swimming. Pity she wasn’t swimming for Team GB, but still, Go Plymouth!
I suppose in some ways, watching Archie be part of the banter I felt a bit like we’d won gold ourselves today.
We’ve had one week of the summer holidays, five to go.
In common with many children with autism Archie finds school holidays hard. His routine disappears and he finds it incredibly difficult to fill spare time. Archie has been relatively calm, although we had one awful 20 minute period where he had a total meltdown. It came out of the blue and it took me a while to work out the reason. It was the anniversary of us starting out on our trip to Ireland (first Thursday of the summer holidays) and Archie is desperate to go again. Of course I had forgotten exactly which day we had left for Ireland, but Archie with his elephant memory hadn’t. His memory can really go against him at times and he has talked about our trip to Ireland a lot for the last three months. Interestingly since the Anniversary passed (with no trip) and post meltdown he has hardly mentioned Ireland. Instead he has moved onto talking about handbrakes in cars, and how they go off when the car moves. He can say handbrake on his talker, and he has, a lot. Luckily he doesn’t seem to get quite so emotional about handbrakes; we’re enjoying the calm.
We go out somewhere every day, but the beautiful weather of the last week has made visiting the beach with Archie difficult (too busy), although we have started to explore Dartmoor again instead. I’m planning a few trips, including one to War Horse Farm for middle son Joseph and a trip to some fabulous standing stones. That one’s for me. I love ancient standing stones. Louis wants some swimming trips – he learned to swim without floats this week (in the sea no less) so I may search out a few pools on Dartmoor as well. Archie’s started shutting his eyes in photos, I have no idea why. This was lunch on Gutter Tor. A beautiful day, it was completely deserted, we did find some spent ammo, I presume it was a blank.
On Friday managed a trip to the beach for a surf with Downham House. It was a bit flat for Archie, although he became very relaxed at surfing by himself, and by the end of the session wasn’t even holding onto someone as he was pushed onto a wave. One of the boys, Zak, who last year wouldn’t set foot in the water, was very hard to get in at the end of the session. He seemed pretty keen to take the surfboard with him. Again, it was a fun, relaxed session. We videoed using the GoPro so have some fantastic footage. This is being passed onto Plymouth Music Zone, and next week the five surfing boys will be paying a visit to add music to the footage. Can’t wait.
Archie has started taking the talker to bed with him. He’s actually taking a Louis approach to bedtime now (appears back downstairs every few minutes to comment on something). In both cases it drives me mad, but in Archie’s case I can also see that really it’s a positive development. I just have to remind myself of that.
I have mentioned before that Archie has been teaching himself new vocabulary. It’s not unusual for him to sit down quietly with the talker and methodically explore buttons, and he’ll quite often take the vocabulary he discovers in these sessions and use it at a later date.
I took a couple of videos of him exploring tonight. In the first one he intersperses exploring the talker with responding to me. In the second, after exploring for a while, he asks me to find him a specific word – and once again Icon Tutor comes in handy.
A slightly longer video than the ones I usually post. A three minute snapshot from a chat we were having earlier today. There is building work going on at Downham House. Archie knows every last detail of what is being built where because he appears to have studied the plans which are displayed on the wall. The only problem is he wants it built tomorrow. Or by next week at the latest.
So in this video we’re talking about the building works and Archie gets a little loud. This week he has been responding really well to the suggestion, via the talker that he needs to be ‘quiet’. In this clip he takes on board finding ‘quiet’ himself. And he does become quieter.
I have been reflecting this week on how much vocabulary the talker has allowed Archie to access and share. A few days ago our computer started playing up. Archie shouted a bit then went to bed. He appeared an hour later, grabbed the talker from the charger and said ‘new computer’. Now prior to the talker he could have made me understand ‘computer’ by pointing at it while saying ‘deedan’, but he couldn’t have communicated ‘new’. It wasn’t a word I knew he understood to be honest. With the simple two word sentence – ‘new computer’ we were able to chat about what was going to happen. I explained that it would be ‘fixed’ – I think this was a new bit of vocab for him, and five minutes later he went to bed.
I have a page on my blog dedicated to Downham House, the respite centre that Archie attends once a week. About eighteen months ago a small group of parents set up Friends of Downham House to fundraise for the centre. This became more urgent when we learned that we were going to be losing the use of the hydrotherapy pool in the next door school due to relocation. Finally, this morning we have obtained charitable status which will make fundraising a whole lot easier.
It has been a busy week for Downham House as yesterday Donna (the treasurer) and I were in the local rag along with our two very angelic looking boys (don’t be fooled, they were causing chaos between them at the time). We were pleased with the article in that is talked about the important role that Dowham House plays, didn’t confuse us with Downham School (always a bonus) and explained why we are fundraising. What it didn’t really mention was the agony Donna and I put ourselves through doing Ten Tors for Grown Ups.
Ten Tors is a well known long distance walk held annually on Dartmoor. My last experience of Ten Tors was in 1986; one of the ‘bad’ years when dreadful conditions forced many to drop out. Our team completed without any drop-outs but apparently we were unusual. Twenty-six years later, it wasn’t any easier, and the weather was still pretty grim. We did have the advantage of being grown ups which meant we could stay in a bunkhouse in Princetown on the Saturday night and have a tour of the Dartmoor Brewery. However, we still had to walk 35 miles and we still ended up with blisters (Donna had a fine pair, as did Nigel – revolting photograph below), black toes (Donna) and swollen legs (me – horse fly bite I think). The original plan was for people connected to Downham House to do the walk but for various reasons it ended up being just me and Donna that had a Downham House connection. We were very pleased to be joined by friends and various random strangers (who are strangers no more!) and we were very moved by the amount of effort our team mates put into fundraising and taking part. The final total still needs to be calculated but it looks as if we have raised around £2500 – a fantastic amount and worth the blisters. Huge thanks to everyone who sponsored us.
Nigel Gifford who whizzed through the route took some fabulous photos and I’ve made a little gallery of these along with a few of Donna’s photos below. It was a great weekend and we’re now trying to plan another challenge.
We’re currently in the process of setting up a Just Giving page. In the meantime donations to Friends of Downham House can still be made through the PayPal button on the Downham House page on this blog.
Now we have charitable status we are also very keen to find our patron. Ideally the person will have links to Devon and/or an interest in encouraging those with learning disabilities to lead full and active lives. Video taken at the last Downham House surf day gives an idea of the sorts of great things the centre does with the kids in its care. Any ideas, for patrons, future challenges or for fundraising, please get in touch.
PS Update – Ten Tors for Grown Ups raised over £3000 – thank you everyone.