Questions, questions, questions.

Joseph finished primary school this week. Come September he’ll be off to secondary school with 174 people in his year group – more than the total number of pupils in his current school. A time of change, and it has been a week of reflection. We have been lucky with the boys’ schools. Apart from a dodgy few terms when Archie was in mainstream (and to be fair that wasn’t entirely the school’s fault – Archie should never have been there) the boys’ have been in supportive schools who have done their best to help them reach their potential. In Archie’s case that potential seems to be expanding rapidly and I’m not quite sure where we’re going to end up.

Year 6 were given a warm send off. A close group of friends, there were tears when it came to say goodbye and a rather idyllic final barbecue overlooking the sea, with water fights, British bulldog and a swim in a sea pool. The children were given some lovely gifts including a jar of questions each from their class teacher. The note attached to the jar says that the questions are designed to get the children chatting and debating with their friends and family. They range from simple questions such as ‘what is your favourite place in the house?’ (Joseph: the computer room; Louis: the front room because I watch TV in there) to more abstract ones such as ‘if you could have any superpower in the world what would it be and why?’ I’ve put it on the kitchen table to encourage meal time conversation. It’s a thoughtful gift for any family. I thought Joseph might need to be a bit older to appreciate the value of such a gift but he was genuinely delighted and was keen to get started with the questions.

It’s a particularly useful present for our family because Archie often finds these sorts of questions difficult. Most of his conversation is concrete, usually about what he’s doing, or has done and when. I asked him earlier today what his favourite food was and he struggled to answer. Archie eat; Archie like food; eat food tomorrow were the initial answers before he said sweeties. Many of the questions in the jar are great for encouraging Archie to start to understand, think about and answer these more abstract questions, where he has to express a preference rather than provide an absolute right or wrong answer. He did well with ‘what is your favourite room in the house?’ and answered bathroom pretty quickly. He may not understand the concept of superpowers yet but he was included in the conversation and made his own contribution mummy car. A question about whether you would prefer to live on the moon or in the ocean led to a great debate between Joseph and Louis centring mainly on available food. I translated a little for Archie asking him which he preferred, the moon or the sea and he said sea which surprised me a little, maybe he recognises the effect the full moon has on him! Maybe he just wants to go surfing again, life has intervened and we haven’t been for a while.

While many of the questions may be a little out of reach for Archie at the moment, through being asked to contribute and through being part of the conversation I expect him to find them gradually easier to answer. Language cannot be learned passively, it is only through using language that you learn to wield it. These mealtime conversations provide an opportunity for Archie to take part in describing preferences and in debating without the attention being solely on him. He can hear other people being asked the same questions and listen to their answers. He can begin to understand that we are interested in his answers as well as his brothers’ and he can learn that questions aren’t always asked as part of an assessment and aren’t always designed to trip you up and reveal what you don’t know. It is a way in which we can show that we are assuming competence, something which Naoki writes about in The Reason I Jump. Incidentally, slightly off topic but this is a subject close to my heart and I co-authored a book chapter published this month on the issue of competence (Laughter and Competence: Children with Severe Autism Using Laughter to Joke and Tease in Studies of Laughter in Interaction).

Whilst I am aware that Archie doesn’t (yet) have the means to always express himself in a way that is easily understandable and that he sometimes needs help interpreting questions I can see the question jar becoming an important family tradition. I am already hatching a plan to get everyone to contribute new questions when we’ve worked our way through the originals. It is interesting for all of us to think about our answers and explain or defend them. To have Archie able to take part in this is wonderful. From expensive high tech talkers to simple jars of questions other people’s gifts are having a large impact on our lives.

The Reason I Jump

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.

Combining words

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.

Talking to everyone

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.

Revenge (but not in the way you think)

Apologies there’s been a bit of a break. We’ve all been ill in turn, which always puts me behind with work and everything else slips in the catch up. Actually the being-ill was interesting post talker. Archie developed an eye infection, which then spread into his cheek. It was pretty grim. I found the child who has never worn a plaster in his life trying to stick plasters over his eyes and raiding the freezer for ice. We eventually managed to get him seen at the eye infirmary (after he told me eye different and eye bad and eye hurt). I took Joseph with me to help out, (never having tried to take Archie to a hospital appointment alone before), but he wasn’t really needed. The days of trying to get behind every closed door may be over. Archie was extremely good during the examination as well, resting his chin on the contraption that allowed the doctor to look into his eyes. Very different from our journey to x-ray four or five years ago where we had 5 people trying to hold him down for a shot of his suspected broken ankle (we never did manage to get the necessary shot). This time Archie only became noisy when he heard the doctor say he needed to stay off school. Staying off school doesn’t really go down very well.

We haven’t been surfing, we’ve been too ill or it’s been too cold and Archie hasn’t been keen. Until today really when he told me Harry yes surfing so I hope Harry’s back is better. I’ll start tracking the forecast again, if the temperature reaches 10 °C I’ll book us in. We have been dog walking a lot. Lucky Chewbacca.

I have started to try and target some language on the talker. I have been pushing a bit to try and get an understanding of Archie’s comprehension. So today for example while on the beach I asked whether today was ‘colder’ or ‘hotter’ than yesterday (I’m not sure whether ‘warmer’ is understood yet) and Archie was able to tell me that it was hotter (it was, by some distance). I have been keeping these instances very much grounded in what we are doing at the time, Archie still doesn’t really like to do work with me.

One very special moment today. Archie has been insisting on the same CD for weeks in the car, and it’s been beginning to drive me mad, (Variations for anyone interested) so today I insisted on playing music from my phone. This is a slightly eclectic mix that includes favourite tracks of mine and the kids, including ‘Revenge’, a bizarre Minecraft parody of Usher’s DJ got us falling in love again. As the song started playing Archie joined in with some gusto – and we sang along to various tracks the rest of the way to Bigbury. Archie can actually sing well and in key, he just rarely does, but today he was up for it. We arrived at the beach beaming – nothing like a belting sing-song to raise the mood.

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.

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.

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.

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.

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.

Sibling communication

Being the sibling of someone with severe autism is supposedly a bit of a mixed bag. Research shows both benefits and potential problems for siblings. Archie’s brothers are younger than him so have always had autism in the family, they’ve never had to adjust and both have grown up very accepting and protective of their brother. The main disadvantages centre around certain activities being difficult for Archie. Trips to the cinema or Pizza Hut tend to take place when Archie is elsewhere for example. In the case of Pizza Hut a reduction in the number of visits might be seen as an advantage by some.

Archie has always rubbed along well enough with his brothers. He was a bit shocked by Joseph’s appearance – probably our fault, we misjudged how much he might understand and so didn’t tell him that much in advance – a baby just appeared. When Louis was born Archie showed a real interest, and didn’t even object when a toddling Louis would make himself comfortable on his lap.

However, in all these years communication has been a bit lacking. Archie tended to communicate mainly with me prior to the arrival of the talker – presumably because I was the person most likely to understand him. But gradually over the last year he has started to talk directly to his brothers a lot. He often asks them to find something for him on Google Maps or YouTube, and in the photos below he’s telling them it’s time for lunch.

 

 

Countdown to the end of term

Archie always finds the last few weeks of term difficult. He knows the school holidays are approaching and everything is going to be diffy diffy different (as we say) and this makes him somewhat anxious.

He was getting himself a little wound up last night. After a bit of shouting my mum wrote out a countdown of days for him. We then used the talker to go through how many sleeps there are until school shuts. Archie then spent some time matching my mum’s list to his talker. I was quite impressed with his literacy to be honest, he had no problem picking out the days on the sheet of paper.

Peace was restored.

Anniversary

It has been a year since we took delivery of the talker. In that time it’s become an extension of Archie and I think of it very much as his voice. Below I’ll post the video taken a year ago straight after the talker had arrived, followed by a video of a general chat taken this week.

Archie is becoming creative with the talker, in a way I hoped he would. So last week for example, on arrival at the beach I asked him whether he wanted to wear his coat or my furry one. It occurred to me as I said it, that there probably was no word for ‘furry’ on the talker. This made no difference, without hesitation Archie said ‘ferry’, it’s close enough to be obvious what he meant. It also demonstrates that he is not using the talker as a symbolic device. The sequence for ‘ferry’ may end with the picture of some sort of boat, but the key clearly does not represent ‘some sort of boat in which I travel to Ireland’ in Archie’s head. He’s using the talker in the way we use our mouth to speak, or perhaps more similarly our hands to type. A fixed motor pattern produced by Archie results in the talker broadcasting a collection of sounds which allows him to be understood. The same motor pattern produces the same word each and every time.  Incidentally Archie has previously used the ‘ferry’ key to mean ‘some sort of boat’, so this is not a case of misidentification. It was a choice of way to communicate the word ‘furry’.

The talker has also allowed Archie to have more say over what he does and his wishes and desires. My parents have been away for the last three weeks and so Archie has been accompanying me in picking his brothers up from school. He’s always quite enjoyed this but by the end of the second week was beginning to become anxious and we had a difficult pick up on Thursday. In the past I would probably have assumed this was a one off and would have taken him with me again the next day. Using the talker he was able to say Joseph Louis school tomorrow daddy car. And so Daddy did pick them up and we had a peaceful, relaxed time at home. He’s been able to check that he won’t be doing the pick ups next week Monday Joseph Louis granddad car. 

Archie is using the talker well at school, both academically (e.g. in literacy) and in general commenting. This week he had a TA from a different class covering in his class for the day and he was able to check back class tomorrow. Archie being Archie he’ll use it to tease as well, such as talking about taking people’s glasses off. And he’ll use it to apologise. A real sign that he cannot always control the way he behaves. Such are the trials of severe autism.

This year, for the first time ever I have found myself saying things like ‘Archie said…’ or ‘Archie told me….’ I have seen the relationship between Archie and his brothers strengthen. They even argue now, another first. The first year has been a series of small steps but we seem to have travelled a long way.

November 2011:

 

November 2012: