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.

Rain Rain Go Away

You may have noticed it has rained a lot over the last few months. We certainly have. We booked in for our roof to be repaired in December, scaffolding went up in January, it hasn’t stopped raining since and work hasn’t been able to start. One bedroom is now resembling a swamp. Facing up to the problem headfirst and with much strength I have shut the door (and will open it again when it stops dripping in there).

One effect of the frankly bloody awful weather is that Archie and I have been surfing a grand total of twice in 2014. We usually surf pretty much year round, but it’s been so wet and the waves have been too big, even for Archie. The water quality can be pretty poor when it rains so much as well and I wasn’t all that keen to trade a surf for a stomach bug.

So our first trip back into the water was with some trepidation. It was a gorgeous day. The water was freezing, but the sun was shining and there was a decent swell. The beach was busy and (luckily as it happens) pretty crowded. Archie had a great lesson with Harry H and I was delighted to be able to catch some waves even while wearing boots (usually I just catapult off the board if I surf in boots).

After our lesson the beautiful day quickly had a shadow cast over it when Harry H spotted someone unresponsive in the water. He was helped to pull him out of the water, and together with another Discovery surf coach, Harry B, started CPR. Because the beach was busy some doctors passing by were rounded up to help, the Bigbury defribrillator was fetched and the air ambulance called. Archie paid no attention to a helicopter landing on the beach, focussed as he was on his post surf sausage sandwich. I felt this was preferable to the people taking photographs of the scene before them (why oh why would you do that?). And it is – thank goodness – a story with a happy ending – a few days later we heard the man was expected to make a full recovery.

We left before the air ambulance – (and passed the land ambulance taking the wrong turning – we did redirect it – although it reminded me of the need for an air ambulance in a rural county and I went home and made a donation to the air ambulance service) and later I looked on Twitter for reassurance that the man had pulled through.  I didn’t find any reassurance there, but I did find a photograph of Archie and Harry H. Taken by a random beach goer who had obviously spotted the absolute joy Archie gets from surfing. After such an emotional day (it really was), I must admit I had a little something in my eye.

surf tweet

 

Painting

Until very recently Archie wouldn’t willingly hold a pencil or paintbrush. If given a painting or drawing activity he would make a few random marks then drop the brush and refused to do any more. You may be able to imagine therefore that I have been somewhat stunned by his developing painting skills.

My understanding is that initially painting was taught hand over hand at school, then by copying a few strokes, now I believe he is given an original picture and left to draw and copy it independently, selecting his own colours and carefully copying and painting within the lines he has draw. The absolutely best part of all is that he seems to now really enjoy this.

Joseph and Louis are impressed – they cannot draw at all and he is now viewed as the artistic brother.

Some examples below:

Dud car

I picked up a new car on Thursday. Cars are still very exciting to Archie, and this one has a proper handbrake (an a chunky one at that), so is particularly exciting.

By Saturday afternoon it had packed up. I’d driven out to Bigbury to surf in the morning. Had some trouble getting it going at Bigbury but luckily managed it on about the 15th attempt. Tried to go out again a few hours later and it wouldn’t start. Archie sat patiently next to me for ten minutes while I swore at the thing, pressed random buttons and flicked hopelessly through instruction manuals. RAC’s verdict is a dud starter, and after rolling it backwards down a hill for a hill start, the RAC man drove it back to the dealers. Where it remains.

I was very impressed by Archie. Six months ago a non-starting car would have led to him launching himself through the window in frustration. And a new car would have been a hundred times worse. After ten minutes of trying I suggested we switch to Dad’s car. This was met with no complaints, and Archie even waited patiently while I ran around the house hunting for keys.

Hopefully it’s progress rather than him hating the new car (I think I hate the new car…..).

Luckily we’d been surfing before the car died. Fab waves, they were huge. I surfed for about 45 minutes when the waves became even bigger with the dropping tide and so I decided to grab my camera. I  only had my phone on my, so the photos aren’t great, but they sum up the session.

Autumn greetings

burgh

Autumn has arrived in style since the above photo was taken last Saturday with rain, rain and more rain (my dad’s patch-up job has worked though, and the roof doesn’t seem to be leaking – hoorah). We’d headed for Bigbury for a surf; found a little swell and a dead whale floating off Burgh Island. The lifeguards had been called out to investigate because a member of the public thought it was an upturned boat. Whilst it is a good thing is wasn’t, the whale caused some interest. I hadn’t given much thought to dead whales before, but apparently they can cause a bit of a problem as there are no large shark-like scavengers (as there would be in say Australia) and the sea is cold so they can hang around for a while, until they sink.

Archie has taken a while to get back into routine. Partly I think because everything has changed. Joseph has changed schools and arrives home at a different time, Archie’s bus has changed time as well, and things aren’t quite the same. He has also gone down with the first heavy school cold of the season (luckily he got his surf in first). Archie refuses to admit he is poorly though, if asked he will cough and splutter ‘no’ whilst burning up. Being poorly means missing school so is rarely admitted to. Thinking about it that simple sentence ‘will cough and splutter ‘no’ tells it’s own tale. It wasn’t until Archie was about 9 or 10 that he even had a functional yes and no, and we couldn’t have had a conversation about poorlyness.

And now a request for help. The guys who took Archie surfing in Ireland; Alive Surf School, working with Autism Initiatives NI have put a bid in for funding for tandem boards. This would allow them to take people like Archie out surfing regularly. The boards are expensive (they borrowed one for Archie’s lesson). The public can vote for them by clicking on this link and choosing Autism Initiatives NI. A worthwhile cause, and if they get the boards I’m hoping Archie will get a ride on one next year.

Back to school

All the boys have now returned to school. We have been lucky; it’s been a great summer. Archie has been so chilled that, at times, he’s been almost horizontal. He only really became a little angsty during the last week of the holidays; he’d had enough and knew school was approaching.

At the end of August we managed to get some video of Archie surfing. The waves were perfect and as soon as I have caught up on my work backlog I’ll do something with the footage. For now, a little clip. This was taken by someone holding the camera surfing alongside Archie. It was fabulous to watch.

This Is My Child

We've found some surf!

Mumsnet is launching a new campaign today called This Is My Child. There have already been a couple of national media articles about it in the Guardian and on the BBC website. I was asked to write a guest blog post about going out with Archie which can be read here.

The aim of the campaign is to challenge negative attitudes towards those with disabilities and bust a few myths (such as autism is just an excuse for poor behaviour). Being run by Mumsnet it has a chance of reaching a wide audience and I hope educates a few, or even many. In the early days and even sometimes now, being surrounded by a sympathetic general public may have saved my blood pressure or tears on more than one occasion.

This is one aspect of an awareness campaign. Over the years my own drive to raise awareness has changed a little. Initially I just wanted people to know and to understand what life was like with autism, and to cut us all some slack. Now it’s a little different. I want people to understand that Archie is someone worth knowing. He has a great sense of humour (yep, despite that severe autism). He’s a thrill seeker (roller coasters, and he surfs much bigger waves than me) and he’s intelligent. Faced with the behaviour of someone with severe autism this last point can be hard to understand – to be fair it took me a long time to realise just how clever Archie is. His behaviour does hide what is going on inside, although with the talker and the computer it’s getting easier for him to demonstrate that there is quite a lot going on in there. The publication of books such as The Reason I Jump help spread this message of unrecognised intelligence. As previously mentioned a writer/director friend and I have developed a film project that  tells the story of a young person, not Archie but not unlike him and his blossoming into living a full life where his abilities are recognised and valued.  The script has been read (and loved) by some well known and talented actors who are keen to come on board. Like many film projects funding is an issue, so, if you fancy funding a film please get in touch.

A general recognition of Archie and others like him, having lives worth living is perhaps my biggest wish for now. If people approached those with disabilities with this understanding things might change. The Mumsent This Is My Child campaign is a step in the right direction.