In 1986 I took part in Ten Tors. In my case this was a 35 mile, two day trek across Dartmoor in a howling gale and torrential rain for which I earned a bronze medal. Ten Tors dates from the 1960’s and was established to provide a challenge for civilians to tackle sleeping, navigating and field cooking on Dartmoor. It really is a challenge, a proper tough one. Dartmoor remains one of England’s greatest wildernesses and is recognised as a difficult place to navigate. The moors look very similar in every direction until you know it well enough to recognise the different tors and it can get very foggy very quickly. It’s also very boggy in places so walking in a straight line isn’t always wise – I remember a school friend disappearing up to her waist on one walk – once we’d stopped laughing we had to tie a rope to her to drag her out of the bog. Ten Tors has evolved to an annual event where 400 teams of six teenagers tackle 35, 45 or 55 mile routes across Dartmoor over two days, carrying everything they need and navigating and crossing the moor independently of adults. It takes a lot of training, back in the 80’s we undertook months of training, starting with day walks and including three practice camping weekends. It was a pivotal event in my teen years – aged 15 I could accurately navigate in thick fog and was able to look after myself in wild country. It gives teens a challenge – and an opportunity to be trusted – two days and a night on the moor without teachers or parents checking up on you (okay so there are army checkpoints but you’re expected to make your own decisions and are responsible for yourself). I’ve forgotten a lot of things I learned at school, but I still use my Ten Tors training today. So all in all a somewhat brilliant event. I’ll accept the embarrassment of looking like a boy (‘WOW mum you look like me’ as Joseph said) to post a photo from our finish line in 1986. So how does Ten Tors have relevance for Archie? Well Archie loves Dartmoor. One of the reasons we moved back to Devon was after seeing a 2 year old Archie running free and happy across the moors. Of course moving was followed by a year or two of Archie refusing to stand on grass which rather put paid to time on Dartmoor but we got over that. I started taking Archie up on Dartmoor regularly from about the age of 8. I encouraged him to walk in all weathers although he’d sometimes shut the car door and refuse to get out if it was really bad. A full on Ten Tors independent trek isn’t a possibility for Archie but he was able to take part in The Jubilee Challenge. The first event was held in 1977 and it now involves about 300 participants trekking across Dartmoor on the Saturday of the Ten Tors weekend. Like the mainstream event participants camp overnight on the Friday at Okehampton Camp before starting half an hour after Ten Tors at 7.30am. Jubilee Challenge participants also have the choice of different length routes and, like those taking part in Ten Tors can earn themselves a bronze, silver or gold medal. When Archie was given the opportunity to take part in The Jubilee Challenge by his school I jumped at the chance. As all the team were new to Ten Tors is was decided to do a shorter walk (7.5 miles) for a bronze medal. The team and staff headed up to Okehampton Camp on the Friday afternoon with a very excited Archie. He hadn’t been all that well in the few days before – he’d had a very sore and blistered tongue and I wasn’t surprised to get a call asking me to join the team late on Friday night. I rushed around the house a bit shouting ‘where’s my socks? Where’s my sleeping bag?’ before hot footing it to Okehampton Camp. I arrived just as it was getting dark, just as the wind was picking up and just as it started raining. The wind howled and the rain poured all night. I was slightly confused in the morning when I found the sides of part of the school base camp had disappeared. Although Archie had been awake from 2.30am I’d missed the tents falling down around us (different schools and groups) and so hadn’t felt the need to help. Archie did eventually fall asleep at 4.45am only to be woken at 5am by loudspeakers playing Chariots of Fire; a Ten Tors tradition I remember from 1986. I lay for a while in the sleeping bag I’d used in 1987 remembering when it had been my turn. Once I’d staggered out of bed I had to speed up a bit as we needed to be on the bus to take us to the start line at 6.15. A quick bacon sandwich later and we were ready. The weather started okay, but it soon deteriorated into 50 mph winds, rain, rain, rain and fog. I’ll add a gallery below – it was tough for the kids in places, but the team of six from Archie’s school all made it round. I haven’t included group photos because I’m not sure I’m allowed to, but really it was a great achievement for all the young people and the whole point of Ten Tors is to support your team and get round as a group – they did this wonderfully, helping each other around the course. It was an emotional moment for us all as they crossed the finish line. The conditions were absolutely atrocious and the medals were hard won. Archie’s is at the top of this post. It is exactly the same as mine from 1987. He thought this was wonderful. Roll on next year.
And just to show the sort of changeable place Dartmoor is; Ten Tors took place two weeks ago. Last weekend I took Archie onto Dartmoor for a short walk with the dog. The conditions were a little different:
Archie has always been good a learning nouns. When he was two, and saw his first speech and language therapist she devised a little posting game. We made a postbox out of a shoe box and Archie would post pictures through the slot with me saying the name as he did. This then progressed to him having to choose the correct picture from a selection to post. He loved this game and quickly learned hundreds of nouns in this way (verbs were a different matter).
The one exception to this has been body parts. Head, eyes, mouth, nose, hands, feet, legs and arms were easily mastered, but everything else has been a bit of a struggle. Even now if I ask Archie to show me his chest he’ll point to his back, if I ask to be shown an elbow he might point to his shoulder or his tummy. I suppose heads are more discrete and more obvious that elbows which don’t really have an ending or a beginning, but I have wondered for a while whether there has been something additional causing problems. I have read pretty much everything I can find written by people with non-verbal autism and descriptions of difficulties of being aware of where a body is in space are common. It is well worth reading Autism and the Myth of the Person Alone anyway, but in Lucy Blackman’s chapter, Reflections on Language, she writes: I deduce that in childhood I had real problems in knowing exactly where my connectional limbs and trunk were, where they would move to next, and even more frighteningly, where they had last been positioned. Naoki Higashida in The Reason I Jump says: In my gym class, the teacher tells me to do things like ‘Stretch your arms’ and ‘Bend your knees!’ But I don’t always know what my arms and legs are up to, not exactly. For me, I have no clear sensation of where my arms and legs are attached, or how to make them do what I’m telling them to do. It’s as if my limbs are a mermaid’s rubbery tail. Again in Autism and the Myth of the Person Alone, Naoko says: I could not point at objects for many reasons. The most important reason is that I had very little sensation of my body. So to learn the techniques of moving my right hand needed control over the ball and socket joint of the shoulder and then the hinge joint of my elbow and finally fold the other fingers and keep the point finger out.
These accounts act as a reminder to me that when Archie is struggling to learn vocabulary it may be because he is experiencing the world and his position in it in a way that is completely alien to me.
A couple of further links for those interested in Naoki Higashida after my last post.
(1) An article in today’s Guardian by David Mitchell: Learning to live with my son’s autism. Although, as always in these articles there are some areas where my view differs a little it’s a powerful piece of writing, with of course many shared moments. This is something fairly typical, when meeting parents of children with special needs you find that although you might be virtual strangers your lives have so many shared moments you’re practically family.
(2) A link to video about Naoki Higashida by the Facilitated Communication Institute of Syracuse University, I write so I am alive. (You need to scroll down, although they’re all worth watching). Thank you Lisa from Aut2Communicate for the link. On watching the video at first I thought that Naoki was very much more organised than Archie, for example he was catching a ball and appeared calm and pretty much in control of his actions. Then Naoki started running and jumping, and hitting and biting himself and he looked very much more like Archie. Something I have noticed very recently is that as Archie progresses with the talker, and routinely produces longer sentences he is also becoming a little more organised. He can copy out words now, and he will sit at the table and concentrate on his homework (once we’ve managed to drag him away form his iPad). For a while now I’ve felt that one of Archie’s greatest problems has been his lack of oganisation and his slavery to involuntary movement and actions. It’s hard to complete a thought if it is always interrupted by the need to run and jump. It will be interesting to see how his emerging calmness and ability to concentrate develops. I am hopeful that it will continue to improve and lead us to exciting new places.
I don’t listen to Radio 4 that often. Archie likes music in the car, and Radio 4 therefore isn’t really tolerated. Luckily my parents only listen to Radio 4 (unless Folk Night is on) and they have been enthusiastically relaying this week’s Book of the Week.
The Reason I Jump: One Boy’s Voice from the Silence of Autism is written by Naoki Higashida – a severely autistic boy living in Japan who has learned to communicate using a letterboard (a link to the roman version, rather than the hiragana, but same idea). Translated into English by the author David Mitchell and his wife K.A. Yoshida it promises to offer a fascinating insight into autism along the same lines as that provided by Lucy’s Story: Autism and Other Adventures. Excerpts have been read on Radio 4 this week- and if you are reading this around the end of June may still be available on iPlayer.
I’m very fond of Japan – I lived there for a year, and even taught in a special school that catered for children with autism and learning disabilities – so I tend to read a lot of (translated) Japanese literature. This book is going to be a particular treat (and I’ll probably cry when I read it). It’s on order.
Just a quick link really for this post, from the Speak for Yourself blog. They make the point that typical children are given at least 2 years before they’re expected to combine words, whereas children given AAC devices are often expected to produce sentence quickly. They then go on to talk about it being better to have to combine words yourself rather than use pre-programmed phrases (I agree with their comments on the whole btw, even if the occasional pre-programmed phrase does no harm, on the whole I think it is better to learn to produce those phrases from single words).
I wanted to add to this my observation that Archie really did need some time just using his device at a single word level. He has explored the device himself, he is now very familiar with it & with that familiarity he has begun to produce more complicated phrases. I’ve been struck by how typical his language development with the device has been, when compared to the speech development of his two younger brothers. He went from single words to comfortably combining two words to longer phrases – now they can be very long indeed. He’s also made corrections, so whereas ‘not’ always used to appear at the end of a sentence it’s now, more often than not, found in the correct place. None of this has been achieved with intensive therapy, his development has taken a very natural course – the vantage lite just providing him with the voice to do that.
Archie’s been busy with the iPad camera this week. I’ve been a favourite subject (slightly traumatic, I prefer to be behind the camera)
There are times when the difference the talker has made to Archie’s life hits me between the eyes, this week has been one of those weeks. The first moment was when my Mum phoned. Archie grabbed the phone from me and said “Friday granny sweets Joseph Louis school”. He was reminding my mum that Friday is tuck shop day at Joseph and Louis’ school and he wanted some sweets. What he said wasn’t all that surprising – but the fact he was having a telephone conversation was nothing short of incredible.
The second was today. Archie was given a role on the school council and formed part of an interview panel at school interviewing candidates for (I presume) teaching jobs. No silly questions about dinner parties with anyone living or dead, he just wanted to know favourite foods. That he can take part in interviews these days is somewhere beyond incredible. It shows in simple terms how much the talker has given him.
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.