The Longest Day

We headed up to Dartmoor on Saturday.  A beautiful day for the summer solstice, we thought the beach would be heaving. It was a good choice, Archie was in a (happy) running, shouting, jumping and stamping mood. The beauty of Dartmoor is that you can do as much running, shouting, jumping and stamping as you like without disturbing anyone. Archie was keen to walk, so keen I had problems persuading him to turn around and head for home. I eventually had to coax him with the promise of a strawberry cornetto. On the way back down we passed a horse and having got the jumping and  and stamping  out of this system Archie stood and watched the horse quietly and peacefully for about 5 minutes.



longest day 2longest day 3

Longest day 1

 

Longest day horse

 

The view from our picnic spot:

Longest day picnic

The great outdoors

I was asked to write a guest post for Mumsnet yesterday. It was sort of about our time at a Horse Boy camp a number of years ago, and sort of about the positive effects of the great outdoors on Archie.

I am having a hellishly busy week this week, so haven’t had much time to put together a post – so for now I thought I’d add a few recent photos of Archie enjoying outdoors life, our favourite picnic spots etc. I’ll write more on being outdoors after we’ve done our first wild camping trip.

Justice for LB

If you  are looking for something to follow, please consider the #107 days blog. It will make you despair of the slopey shouldered who should be caring about our children with disabilities, but who actually only care about covering their own backsides and climbing the greasy pole. You will shed tears for Connor Sparrowhawk (I have bawled buckets). But you will also be reminded that there is a community out there that cares. A community who will stick together and hold those who wish to slope off to account. And if you have your own little dude you will be reminded that there is a ready-made community out there, who ‘get’ you, who have sat in those meetings and who have had to fight the corner for their own dudes.

Here’s my little dude telling me surfing this Saturday was ‘good’.

good

 

 

Difficult Times

We have had the most dreadful week. As is often the case when dealing with special needs, due to something that should never have happened. One day I’ll write about it.

However, difficult times aside Archie and I headed to the beach on Saturday and found amazing surf. Even in the worst weeks it’s impossible to be unhappy when the surf is this good. Archie headed out the back with Harry where Harry’s friends cheered the pair of them onto waves. A bucketful of stoke later we headed home, singing our hearts out to Priscilla all the way.

Fab surf

 

The Jubilee Challenge / Ten Tors

Ten Tors medal 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.   Ten Tors 86 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. young Dartmoor1   young Dartmoor2 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: hot Dartmoor

When Worlds Collide

family selfie

I have very few photos of all the boys together in the early years. Partly because by the time I’d lined up the two youngest, Archie would have scarpered out of the photo but also because we didn’t really do a lot as a family. Archie at the time found neurotypical events difficult to handle & on the whole needed to spend his whole time moving. So even family trips to the beach or camping tended to break into two groups, one parent with Joe and Louis in one spot, paddling, playing football or whatever and the other walking into the distance with Archie. At that time I often felt as if we were had two entirely different families under the same roof. It was a time of contrasts, switching between planet autism and neurotypical land, with very little overlap.

Gradually over the last few years the distance between the two worlds has decreased and most of the time now we just have our family time. Okay it’s not always a typical family, but we can go out and eat together, we can shop together, we can go horse riding, surf together & ride bikes together.  This is reflected in the family photo albums where all three boys can be seen enjoying  life together, creating joint memories.

It’s entirely normal for us now to do most things together and it’s rare to get that sense of planet autism vs neurotypical world. There are times when there are reminders – attending in quick succession a secondary school carol service in a candlelit church or watching a mainstream primary nativity, versus the warm chaos of Archie’s school christmas celebrations for example was a reminder amongst others that there are still differences. There are still things that Archie can’t do. Not many, but cinemas and theatres are still a no go area for him.

Which brings me onto this week. Joseph was performing in the UK Priscilla Queen of the Desert tour for the third and final time. This is what we tend to refer to between ourselves as extreme neurotypical parenting, as it’s really a large step away from anything we experience with Archie. He absolutely loves the Priscilla CD but still wouldn’t be able to watch a performance in a 1000+ seat theatre. The weeks that Joseph takes part in professional theatre shows are always warm, sunny weeks, full of family and friends going to see the show and this week was no exception. Because it was Joseph’s final Priscilla week,  I agreed he could see the show. The final matinee of the tour was a lovely way to end a really fun week – the sort of week when you realise just how much fun parenting & well life really can be.

We arrived home after the show, both of us on a show inspired feel-good high; Joseph decked in pink feather boas and wearing a Priscilla cap and found Archie a bit angsty. This eventually led to a very major meltdown at about 8pm. Suddenly the chasm between the two worlds felt very large indeed and the high of the previous week crashed. It felt as if we were being launched from one extreme to another. One of the problems with meltdowns is that it can be very hard to understand why they have occurred. We focussed on getting the house calm and encouraging Archie to sleep.

This morning Archie again woke very anxious and a further meltdown followed. I tried to talk to him about what was upsetting him but he finds talking about negative emotions incredibly difficult. This is recognised, and is and is being targeted by school as well, but like everything it’s a long process of short steps. I tried to put myself in his shoes and realised that I’ve been out a lot more than usual in the last week watching Priscilla and family and friends have been coming and going and he might find the changes and my absence difficult. I explained to him that granny and grandad Ireland were back in Ireland and that Joseph’s theatre show was over. He latched onto this – repeatedly saying ‘different day’ and seemed happy when I replied that yes, Joseph would be at the theatre on a different day, not for ages and that I was going to be home most of the time again. If my absence was the issue it is of course something we need to keep an eye on – I can’t be unable to go out, but this morning it was a just a relief to see some of the anxiety go.

I took Archie to the beach with me to walk the dog. Richard was a bit concerned – with good reason. The beach was busy, and public meltdowns or meltdowns while driving are hard to handle. However, it was the right decision. The tide was out and as we walked I could see Bigbury working its special magic, the anxiety dropping away and my smiley boy returning.

We returned home and Archie has been wandering around this afternoon carrying a pink feather boa wearing Joseph’s Priscilla cap. The gap between the two worlds is decreasing again. We’re easing back into our funny family life.