Holidays

A short blogging break has turned into a long one; but we have driven the length of the country (twice) and been to Northern Ireland and back in the process.

I’ve written before about our trips to Northern Ireland, and the screaming and difficulties that can accompany them. This trip was different. Archie was chilled, and despite us being in stop-start traffic from south of Bristol to north of Liverpool he remained pretty chilled. Weirdly there was another little shout at Birmingham. He has issues with Birmingham. The journey from one end of the country took two days with a different boat than usual – this one complete with a cabin. This ended up being a godsend, Archie just sat and looked out the window at the approaching landmass of Ireland the whole crossing.

Ferry

Usually we head straight up to the north coast to the beaches, but this time we detoured via Belfast for a week. Middle-son was doing a second stint in Priscilla Queen of the Desert at the Grand Opera House (a fabulous show by the way, if you get a chance to see it during its current UK tour grab the opportunity; you won’t be disappointed) and so we stayed in Belfast for a week. The city has changed a lot since I first visited a frightening number of years ago and it was a week of football in the park, the Titanic exhibition and a lot of drives in grandad’s car for Archie.

The second week we headed up to our usual spot on the north coast where we made our usual regular visits to the largely empty beaches but with some new experiences. Archie is keen to get involved in everything these days, including trying out a roller coaster at the institution that is Barry’s (it had loop the loops and everything, I screamed the entire way round).

big dippper

If you had told me two years ago, by the way, that I would ever go on a roller coaster with Archie I would never have believed you. He also took part in pony trekking and roller water balls. I’ll add some photos below.

Perhaps the most exciting part of our time on the north coast was finding a place for Archie to go surfing in Portrush. Before leaving England I contacted Ricky who runs Alive Surf School out of Portrush to see whether they would be able to take Archie out for a tandem surf. Ricky emailed back and said that they had recently started an autism program, but this had been with those with more language, they hadn’t yet tried any tandem surfing, but were keen to move into working with those like Archie. So we arranged that Ricky would borrow a paddle board and Archie would have a surf. I booked the younger boys in for a lesson at the same time.

The day of the lesson I messed up a bit. I had forgotten to explain to Archie that we were going to a new beach, and he thought we were heading for a beach that he has been obsessively studying on google maps for the last six months. He therefore wasn’t very happy when we took the ‘wrong’ turning. Had I been more awake I could have prevented the misunderstanding, or given him a quick drive to the first beach, but by the time I realised what was going on it was a bit late.

Anyhow Archie was teamed up with Hanno from Alive and off they went. Surfing soon worked it’s magic and Archie relaxed and forgot about the ‘wrong’ beach. The waves were a perfect size for me (so clean and the water was so clear), but a little small for Archie. He had a few sprints around the beach inbetween catching waves. Not being used to this behaviour Hanno was a bit concerned that he might be scared, but I explained this was fairly typical behaviour for Archie and standing pointing at the board usually worked to bring him back. As the waves were smallish they decided to go for a paddle. ‘I like to train’ said Hanno. Good job; Archie was delighted to find that Hanno went wherever he pointed and they ended up a small speck in the distance checking out rocks and a nearby island.

While they disappeared off into the distance I talked to Pauline who has been responsible for finding funding to run the autism events. Well we talked and surfed, both latecomers to surfing the conditions were ideal. Pauline explained that she had become inspired to start seeking funding after seeing videos on YouTube including some of Archie. Because I’m always referring to them I’ve just created a page of surfing videos by the way. This was really rewarding to hear, after all the main reason I talk incessantly on here about surfing is to encourage others to try it out. To hear that people are being encouraged to give it a go makes it all worthwhile. Although it means I won’t be shutting up about surfing any time soon I do hope it brings others the peace it has brought Archie.

Anyway after Hanno delivered a relaxed Archie back to the beach, we managed to get a shot of them both.

surfing portrush

We met up with Ricky the next day and talked about getting going with tandem surfing (my main bit of advice really being that it has to be an individual approach and may well be different for each child). Surfers, as a whole seem very good at this. They are very good at accepting people for who they are and they usually have a deep love of the waves and the sea that they’re happy to share. Certainly we found the guys at Alive just as welcoming as our friends at Discovery. Richard often describes surfers (along with the teachers at Archie’s school) as ‘a different breed’ and I think they are. Anyhow we are delighted to have found a surf school for Archie up in Portrush and will be back next year. And of course we highly recommend them. I should also add that the north coast is a wonderful place to surf. The beaches are so empty – even in August – and it gets good waves, with a wide choice of surfing beaches. A very undiscovered part of the UK.

Back in Devon we had a surf yesterday. The first one in ages (we’ve either been busy or it’s been flat). The surf was fantastic; big waves and Archie sat out the back with the big boys – local coaches and lifeguards he knows – while I caught some closer to shore. Surfers are very good at ‘doing inclusion’.

To finish; a gallery of Ireland photos, it really was a great holiday. The best we’ve had for a long time. Having an on-the-whole-chilled-and-laid-back-Archie made the whole thing much easier than in previous years. Regular holidays may be becoming a possibility.

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Shoe Shopping

shoes

Shoe shopping has always been an issue for us. I mentioned it in a  post on a now defunct blog back in 2007, but basically it involved two people, and leaving the other children at home (so more childcare) and ducking and apologising and dragging Archie out of stock rooms. In recent years I’ve grabbed shoes after guessing his size and crammed them into his feet at home.

A couple of weeks ago I noticed that he had holes in his school shoes. Partly because he walks slightly unusually now, his feet are flat and he turns them inwards so the insides of shoes wear out quickly. (Please if a physio or podiatrist is reading this and has any ideas, please, please, please comment – it’s all new, he used to have a very high arch). My last attempt at guessing shoe size had been a bit disastrous so I’d already decided to take him with me on the next shop. We were going to do it last weekend but Sunday was not a good day and I felt being around too many people would be pushing it a bit.

But today Archie woke up chilled and I decided to give it a go. Richard wanted me to take Joseph to help out, but he was busy recording videos on Minecraft with some school friends (yawn) so I decided to leave him be and give it a go with Archie by myself. The feral child of a few years ago was nowhere to be seen. Archie walked pretty calmly around the shops, linking arms with me, only made one dash for a changing room, and was happy to amble from shop to shop trying on various shoes. He even walked past lifts without insisting on going in them.  I let him choose his shoes and he went for the Vans above. I don’t think school will mind green shoes for two and half weeks (please don’t) and they’ll do him for the summer.

I don’t want to say we’ve cracked shoe shopping – I am fully aware that next time new shoes are due it could be an unmitigated disaster, but today was a sign of things that might be to come.

Day Tripper

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.

Calstock

 

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.

happy train

Decisions decisions decisions

chatting at the beach

For the first ten years of Archie’s life I probably made pretty much every decision for him. Until he was about 5 he had really no concept of having a choice and would treat every suggestion as a command. To complicate matters further it took until he was about 10 before he had a functional yes and no. By this I mean it took that long until he had a way to communicate yes and no and an understanding of the concept of yes and no, in other words an understanding of what yes and no actually means. It’s hard to imagine not understanding the words, but they’re abstract and for a long time Archie didn’t. The upshot of this was that we couldn’t have simple ‘do you want  to go to the park’ type conversations because Archie had no way of saying yes, or indeed no.

Gradually we developed a simple way of offering choices; ‘would you like this or this – using a picture or symbol to offer the choice’. If Archie wanted neither option then we would start a guessing game. It was slow, frustrating and often resulted in no resolution. Once an understanding of yes and no developed it made running through options easier but we were still limited to me having to think of various options while hoping to stumble on an acceptable one. Archie’s choices were limited to my imagination and he struggled to communicate a choice without me first offering it.

The talker has made all this much easier, and this improved communication has resulted in less frustration and Archie being able to have more agency over his life. We had a fine example of this this week. I booked a surf for today as soon as I realised that Archie had a non-pupil day at school. It seemed ideal, his brothers  would be at school and it would occupy the first day of the half term. Except last weekend he went down with a really grotty cold. He’s been insisting on going to school but has been coughing and spluttering all week and really didn’t seem to be 100% fit to be dunked in the sea in February. In the past this would have been problematic. If I had said something was happening it had to happen, or a massive meltdown would result. There was no way to negotiate an alternative or even explore what Archie actually wanted to happen. I had to try and guess. And, as might be expected, frequently guessed wrong. The talker has made all this easy. By Wednesday when he was still spluttering everywhere I reminded him he was booked in to surf on Friday, but asked him whether he wanted to go given his cold. Different day came the reply.  I was able to check ‘do you want to surf on Friday?’ no. So I asked when. Sunday. Okay Sunday, but he clarified further. Downham Saturday surfing Sunday.  He wants to surf the Sunday after he’s been to respite on the Saturday. And all decided without a meltdown or me having to tie myself in knots trying to guess what he might want to happen.  The day pinpointed all I have to do now is keep an eye on the surf forecast. If it’s forecast to be flat we’ll use the talker to renegotiate.

Smile – it’s progress

Apologies for the radio silence. I run my own business from home; supposedly working full time (in addition to the previously mentioned film stuff) although it tends to get a bit tricky during school holidays so I have to play catch up once the boys are back at school. This term’s catch up has taken longer than usual due to a lot of meetings and disruption due to (of all things) hail.

However, we’ve had a good January. One where Archie’s progress has been noted. It started well with a visit to the dentist. Years ago, when we took Archie to our family dentist he refused to open his mouth, and if the dentist tried to open it would bite down on his finger. Our lovely dentist referred him to the special needs dentist instead. I think my first visit there is etched on my memory forever. We had to wait in a crowded waiting room with Archie becoming ever more feral. He refused to set foot in the surgery and so was taken to an office upstairs where he just screamed. The wide open mouth did at least mean his teeth were reasonably easy to check. Gradually, with repeat visits he became happy to open his mouth and they became slightly less traumatic.

We were visiting the dentist regularly (every 3 months) but seem to have fallen off the list. At any rate I realised with some horror that my sweetie obsessed eldest son hadn’t seen the dentist for about 18 months. I have no idea why, but while we’re waiting to get back on the list I asked our family dentist whether he would take a look. All seems well, and as can be seen from the photos below Archie particularly enjoyed the chair.

dentist2dentist1dentist3

So that was success number 1.

Success number 2 was big. His annual review. As usual everyone said nice things about him (in between talking about the problems). But the big celebration is in his academic progress this year. In most areas he has progressed two p-scales. I must admit here that I tend to switch off when people start discussing p-scales (I do the same when teachers start talking about national curriculum levels for the younger two boys as well), but it was apparent from everyone’s reaction that such progression in one year is way above what might be expected. So wahay for the talker – and it demonstrates very clearly how important it is to work on giving these kids a voice.

A Good Start

arthurbday1
arthur bday2It is Louis’ birthday today so I thought he could provide the photographs today. Google came up trumps and I managed to find some Merlin figures. His grandparents asked me to buy him an Arthur outfit and again google was my friend. He’s been happily playing at knights all day, and we haven’t even had that many dead-Arthur impressions.

In talker-related news we’re off to a good start. Today I was discussing with my Mum and Richard when the 12th night is – for the all important tree-down operation. We couldn’t work out whether the first night is the 25th, or whether you start counting from Boxing day. Anyway, mid discussion Archie appeared Christmas gone Sunday. I told him the Christmas tree is going to come down tomorrow rather than Sunday, a day when he has respite  at Downham House. He listened then said Christmas tree gone Saturday after Downham. It is a small sentence but actually pretty amazing. He understood that the Christmas tree has to come down but more than that, told us he wants to be there to see it come down. Left without instruction from Archie we would probably have taken the tree down while he was at respite which may or may not have caused grief on arrival home. Only the parent of a severely autistic child can truly understand the relief at having probably avoided a meltdown…..

Life Post Merlin

Forgive me, it’s a stupid title I know, but I remain overjoyed that this Christmas period has continued to be defined by the death of a fictional TV character, rather than anything autism related and decided to celebrate that once more. For anyone concerned, Louis has made a full recovery from the shock of Arthur’s death and has taken to amusing himself doing ‘dead Arthur’ impressions, rolling his eyes back complete with a slither of white eye showing. Oh yes, as he said, he’s so sensitive.

So it really has been calm here; unlike the sea. We’ve had some painful walks along the beach where the sand has been whipping across our faces. We did have one hairy moment five minutes after the photo below was taken when Archie ended up cut off by the tide, marooned on a small circle of sand . I wasn’t too worried about him, he was risking a soaking rather than anything more dangerous, but I was very worried about the five thousand pound (plus) of talker hung around his neck and dangling over the sea. I moved fast, very fast. LU

2012 has been a great year for Archie, he’s made enormous progress in so many areas and we remain incredibly grateful to the anonymous donor. Now, with Christmas complete, and being December the 31st it seemed a good time to think back about what I have learned this year, the first full year of talker use.

  • Archie’s language is not intact. At least I don’t think so. I know some children who are non-verbal have found a communication method such as typing and revealed themselves to have pretty much intact language. This is not the case for Archie. Although now he is an active user of language it is developing at great speed, rather like a toddler going through a language explosion. In this year we have moved from a preferred use of one word; e.g. black to mean black car, or granddad’s car, to fairly routine use of longer phrases e.g. granddad black car handbrake up stop. His language development seems very similar to Lucy Blackman’s. She too started aged 13, with AAC.
  • The talker can be used as a tool for humour. Archie has always had a wicked sense of humour, some of which can be incredibly annoying (e.g. taking people’s glasses off & sniffing people). With the talker he can enjoy his joke, by telling us he is going to do something naughty (such as take his head teacher’s glasses off) without having to actually go through and do it. Well sometimes. He had my glasses off about an hour ago, I’ll be back in contacts tomorrow.
  • Archie has his own way of saying things. His use of ‘not’ at the end of a sentence continues and seems pretty much part of him. School tomorrow not. Sniffing Tom Daley not. DEFINITELY not that one (at which stage Archie falls about laughing his leg off).
  • Better communication leads to less frustration and a calmer Archie. a.k.a stating the bleeding obvious. Obviously being severely autistic Archie has his difficult moments (he found the long unstructured summer holidays hard), but the talker really has cut down on a lot of shouty moments. He doesn’t have to shout with frustration now because we can easily understand him.
  • The talker allows Archie to chill out and chew the fat with the rest of the family. Ha! I couldn’t think how else to word this, but staying with the Tom Daley theme I discussed this during the Olympics.
  • The talker has really encouraged a blossoming relationship between Archie and his brothers. Something I wrote about recently.
  • Surfing really does make a difference. This year Plymouth City Council funded some sessions for the kids attending Archie’s respite centre. These were a huge success; videos here; here and here. Archie surfing even ended up on the BBC website.
  • Big waves are the best waves. I have always known that Archie prefers to be out in a decent swell than in flat conditions, but this year he’s been able to make that very clear big waves good. Yes indeed.

And so what are we hoping for in 2013? I don’t really spend much time making Archie wish lists these days. He’s happy and progressing faster than he ever has before and I prefer to see where we end up. If I were to predict an area where we might see some real progress this year it would be in literacy. Yesterday he did type his name on the iPad (with help) and I know he is now actually holding a pen and copying letters at school. He is also starting to read, using the talker to read aloud words he is given.

archie name

So 2013 will no doubt involve more language and more surfing. Definitely more surfing as Archie is already asking when the next session will be. Winter doesn’t stop him.

In other news 2013 is going to be the year where I start to work on a film, in part inspired by Archie. I have been lucky enough to work with a fabulous writer and director, Ruth Platt-Stavrik and we think we have pulled together a really very special script. As Ruth explains in a blogpost that may well be the easy bit. What’s life without a challenge?

Happy new year to everyone. I hope 2013 is a good one.