Learning on the hoof

I’m not a very organised person and with three noisy boys am often holding at least two different conversations at once; one about socks, another about dinner tonight, all while trying to reply to a work email. No wonder I drink. My heart therefore sinks when I’m given some organised therapy to do.

It’s not that easy. First I have to find some time and space at home. It’s hard enough to get Joseph to do some drum practice, let alone persuade a reluctant Archie to do some therapy. Usually I need to have taken time out of the working day to have prepared something to use for the session, which means my props end up half made. And so on and so forth; it’s just more chaos amongst the chaos. I’ve held it together and done it when it’s been necessary but it’s never really come that easily.

All of which means I love the Vantage Lite. We can take ten minutes out to chat and in that time we’ll stumble across new words. We’re doing useful proper ‘therapy’ without either of us being inconvenienced. And – now this bit is for those who have been asking me how easy the device is to use – we can use these new words straight away, even when I don’t know where they’re located on the talker. There’s a magic button called ‘ICON TUTOR’. You press that, type in the word you’re looking for, and it gives you the sequence or sequences that will produce that word. It’s become a great friend.

In the video below, we get a chance to use the word ‘lift’ (while holding the aforementioned two conversations at once) and you can see it’s very easily located and taught. I find moving Archie through the sequence either hand over hand or as a model a couple of times is enough for him to remember it for future use. Hand over hand can be better because the child needs to learn a smooth motor pattern, so if they take a long time to move from one button to the next that motor pattern isn’t really being established.

There is (potentially) something I may have done wrong here and may need to change. The ‘lift’ that is programmed into the speaker is a verb. You can tell this because the final key in the sequence is coloured green indicating an action. Archie here is using lift as a noun. My first thought it that it doesn’t matter; I don’t produce the word ‘lift’  differently depending on its meaning, that’s established by the context. My mouth motor pattern for lift is always the same.  I’ll check, and if I find out that I was in fact wrong, and that LAMP recommends adding  a new noun-lift  to the talker I’ll correct here.

Edited to add: Verity from Liberator has confirmed it’s fine to use lift-verb to mean lift-noun. After years of thinking of symbols as being representative, as having a meaning themselves, it’s taking a while to adjust to them meaning pretty much nothing- they’re just a guide for the motor patterns which is where the language lies. Just like the rest of us I guess.

Four years to get fully dressed

We went surfing today. I say we, I mean Archie went surfing while I floundered around being thwacked in the neck by waves and knocked over by my board. I’m a beginner surfer and have a beginner’s board – a 9 foot foamie. It’s big, so catches waves easily, but is very light and today it was so windy it just kept taking off. Literally taking off. It was like a kite. I spent about twenty minutes cursing and muttering to myself that I should have bought a better board by now until I was hit full on in the face. Grateful to have a slightly bruised cheek rather than a few missing teeth I remembered why I’m still on the foamie.

Meanwhile Archie was having a whale of time catching big waves with Tim from Discovery Surf School. He loves surfing in those sorts of ridiculous conditions and Tim had taken him over by the rivermouth to catch long rides into the river. I’d tried to follow them but couldn’t reach them very easily as the wind and tide were combining to produce some interesting currents and I soon realised that if I did ever manage to get over to where they were I’d probably never make it back. I didn’t really want to get into a situation where Tim would have to abandon Archie to rescue me so headed back to shore and went back to floundering around in the water waving at passing windsurfers.

Despite my total surfing failure today (I think I caught about one wave and fell off that almost immediately) we emerged after an hour pretty stoked. Well I was and Archie was and I think Tim was as well. There’s nothing quite like being mashed by the sea for an hour in January.

It was actually pretty warm today, but to surf in the UK in January you do need decent kit. Which brings me (eventually) onto the point of this post. When I suggest to parents of kids  with autism or learning disabilities that they try surfing the most common worry is the wetsuit. Always the wetsuit. I can understand this – the first time someone suggested to me that we take Archie surfing. I said ‘he won’t go on a surfboard’ followed by ‘and there’s no way he’ll wear a wetsuit’. In common with many children with autism Archie had a lot of difficulties with certain types and textures of clothes (still does really). Tight fitting clothes were a no-no.

The first year Breaking the Barrier ran I refused to book Archie in partly because I thought there was no way we’d ever wrestle him into a wetsuit. Friends who did attend came back raving about what a great day it had been so I planned autism-mum style a year in advance to deal with the wetsuit issue and bought a shorty. This was a few sizes too big so provided no warmth at all but Archie would wear it, and so in September 2008 we sent him off for his half hour surf session at Breaking the Barrier wearing said shorty.

Well he was freezing. He finished the session shivering and with blue lips but seemed pretty oblivious to how cold he was and was not at all happy that he had to come in. Spotting an opportunity and attempting to cash in on his enjoyment of surfing  I managed to find a cheap full length wetsuit.

This was fine while Archie was just surfing at Breaking the Barrier. Usually the weather was warm and there was no need for anything other than a wetsuit and maybe some beach shoes to protect against the dreaded weever fish.

The problems began really last year when Archie started surfing in the winter. The winter wetsuit he could just about cope with, but hood, gloves and winter boots? Oh no. Hats Archie never did in any form, nor gloves and neopreme boots take an enormous amount of tugging to get on. Come December it just became too cold to surf without gloves or a hood, and so we gave up for the winter, returning to the water in May.

This year was different as this year Archie went from liking surfing to really really, really, really loving surfing. I could see he wanted to surf all winter and when questioned ‘do you want to surf in the winter yes or no’ indicated yes,  so I switched into autism-mum mode again and began exploring options early. I vaguely remember having conversations with the coaches about winter kit back in August.  We bought Archie his own winter suit, so it would at least be dry to put on, boots he began to tolerate and was eventually happy to help me out getting them on. The hood was easier than expected, I found one with a large velcro strap at the front and he happily wore that. Gloves; we struggled. I developed a secret ebay neoprene glove habit as I tried (and failed) with different styles. Mittens? Nope. Thick gloves? Nope. Eventually I found a thin pair of neoprene gloves which I was able to wrestle Archie into, once he’d surfed with these he was able to tolerate something on his hands and happy to move onto the thicker gloves (which suited me as I could now use the thin ones – far easier for gripping the board).

Eventually, four years after starting the wetsuit journey we’ve finally made it  and Archie is now suitably kitted out to surf year round. These photos were taken today, and  although Archie wasn’t being particularly co-operative about having his photo taken he was very co-operative about getting dressed.

Archie’s also a pro at getting warm post-surf now and has worked out that the fastest way to warm hands and feet  is to shove them under the dryer.

And in the past four years our downstairs bathroom has gone from a place to wash and do whatever you usually do in a bathroom to a place for rinsing, drying and storing wetsuits. Don’t stumble in there by mistake.

If you want to try surfing and think your child might struggle with the wetsuit I’d recommend the following if possible:

  • Borrow a wetsuit (er we have a few!) and see if your child will put it on at home.
  • If that doesn’t work look for a shorty wetsuit and go large. This will be useless in terms of keeping your child warm in the sea but will get them used to feel of neoprene.
  • Look for wetsuits with zips at the ankles – they’re not as warm but far easier to get on.
  • Once your child is wearing some sort of wetsuit get them surfing. Or if they really won’t wear a wetsuit try and surf wearing whatever they’ll wear on a warm day. Even if only briefly. Once Archie understood what surfing was and knew that he really, really wanted to catch some waves he began to accept ‘wetsuit or no surfing’. It was this technique that I had to use with the gloves this year.
  • Try putting something on underneath the wetsuit. A cotton t-shirt will do, or a rash vest. For winter surfing I’ve started putting Archie into a rash vest at home, this makes it far easier for him to cope with a cold, potentially slightly damp wetsuit. Rash vests themselves have a slightly strange texture which might take some getting used to.

If all else fails you could try piling your child into a wetsuit at the beach.  Sometimes once it’s on you find that there are no further problems and wetsuits become an acceptable item of clothing. Beware it can be difficult, the equivalent of trying to cram a ferret into a wetsuit (not my words, but a perfect description).  I have seen the ferret technique work, and in some cases this has led on to an absolute love of being in the sea, so I reckon it can be worth a go if you have a child who isn’t too freaked out by this sort of approach.  If all else fails, re-visit in a few years. I have noticed that older children are often more accepting of wetsuits than younger kids.

Although initially difficult for him Archie will now happily get into the whole kit and he’s been rewarded by year round surfing and the added bonus of getting to ride some waves in bonkers conditions like today. Watching Archie out there today catching waves, getting wiped out, getting straight back on the board and beaming throughout it was clear that although it took four years to get those clothes on him, it was worth it.

Missing words

A number of friends have asked me how easy it is to add words to the talker, or change existing words. It’s actually really very easy and earlier today I attempted to get Joseph, Archie’s middle brother to video me adding ‘stoked’ to the talker. We’re going surfing tomorrow so it seemed a good word to add and a good time to add it. It appears however, that Joe is a better actor than he is cameraman (he hasn’t quite mastered the art of staying silent whilst filming) so that particular clip needs a bit of editing. Another time.

Instead tonight here’s a short clip showing Archie’s work around for a missing-from-the-talker word. We spent quite a bit of time today doing what I call mapping and chatting. So Archie wanders around google maps and points out whatever interests him and we chat about it. Often these are small details such as a lamppost that has changed since the google maps car drove past, or a garage door that has changed colour, or some tiny change that I would never notice. In this clip he’s showing me where some traffic lights have now been installed, but I haven’t added ‘traffic lights’ to the talker yet. He uses a clever (if a little long winded) work around.

A success story

I forgot to mention that Liberator who produce the talker have included Archie as a success story on their website. My first thought was that it seems pretty early to be describing Archie’s talker use as a success given that he’s only had the device for weeks.  After reflecting a little it occurred to me how far he’s come since starting his trial in August. In the first session we were excited by a request for sweets of a particular colour. Now he uses it to talk about trips to Ireland, the colour of various cars, to tell me he wants to go surfing and when, to tell me how his day at school has been and that he’s been silly. He directs me left and right in the car, and tells me to stop when I’m faffing around in car parks.  He’s putting words together and beginning to use verbs. He has his voice. So yes already a success and we’re expecting many more this year.

I usually get left to carry it on the beach; it gets in the way of bouncing.

New word for the day is….. classroom

Archie has given me a helping hand. After describing yesterday how the talker makes it very easy for us to understand new words he gave a fine demonstration of just this today.

Having his usual post-school stroll around google maps Archie zoomed in on his school and ‘nanee’ – yep the ubiquitous ‘nanee’. I had no idea what he was saying. Obviously.  ‘Nanee nanee nanee’. And because I hadn’t watched as he zoomed into the school I wasn’t sure which way round it was on the screen so had no idea what he was pointing at. ‘Nanee’. Not much help. The talker made it immediately clear – classroom. A word I have never heard him use before (he may have, nanee of course is many things), a word I didn’t even know that he knew. And notice a new word, and intersubjectivity achieved with no screaming.

Little by little, day by day his language is growing.

To talk, or not….

I’ve written before in a now defunct blog about teaching children with severe, non-verbal autism to talk. If you’re interested in teaching a non-verbal child to speak then Risca Solomon is probably the person to talk to in the UK. She runs workshops, which last time I checked were very reasonably priced and I hope to attend one at some stage.  Whilst I think it’s likely that Archie will always need a Vantage Lite or some other sort of talker he does like the sound of his own voice (often employed noisily). Currently he has one accurate word, that can be understood by strangers  – ‘Mummy’ – but he’s actually quite motivated these days to try and produce different sounds.  This is something we have been working on quite a lot with Archie, and he has definitely learned to produce more sounds. However, unfortunately these sounds are not particularly stable, so he’ll learn to approximate a word but then lose it.

For example in the video I posted the other day where we were playing hunt the <insert chosen colour> bus on google maps a very clear ‘soos’ can be heard – the ending to bus-  and we did get to the stage where Archie was saying buh oos

A quick reminder of the video and the ‘soos’

But in a video taken today you can hear that bus has been reduced to ‘nah’.

If you listen very carefully you might be able to hear that tomorrow is ‘nanee’. Many, many words are reduced to ‘nah’ and ‘nanee’ by Archie meaning that to date his conversations have had to be very fixed, and given within some sort of context. For example he would use photos or google maps, or his own signs (typically bastardised from Makaton) to give us further clues as to which nah or nanee he was talking about. The talker for the first time is giving an accurate voice allowing him to be understood much faster and without the need to set up a context.  I think it took me about two weeks to work out that Archie was saying ‘tomorrow’ when he first started using the word. He had combined it with a strange version of the Makaton sign for tomorrow, so I knew he was saying something, I just wasn’t sure what. With the talker I have no problem at all understanding new words. So when he stated using ‘later’ I understood right away.  The talker is giving him more freedom in conversation and slowly we are expanding what we are able to talk about. Surfing in Ireland was discussed yesterday, which was a bit of a first. It also provides a model of accurate speech and my Dad is pretty convinced that Archie is now saying more (so he says the word as he presses the talker buttons), and that slowly some of his speech is becoming more accurate. I think he’s probably right.



Journey to Ulster

Archie is half Irish so every few years we make the trip to Northern Ireland. There are plenty of bonuses to this. We tend to head to the north coast where the surf is good (although admittedly this has never been a consideration until this year) and the beaches are empty. There aren’t that many places in the UK where seaside resorts are this quiet in August:

However, we have to get there. We don’t fly with Archie. Not ever. He doesn’t wait that well (spot the understatement) and we suspect it would be pretty unmanageable. Anyway we’re not that s̶t̶u̶p̶i̶d̶  brave. Given the title of this blog that sounds a little restrictive so we therefore p̶r̶e̶t̶e̶n̶d̶ ̶t̶h̶a̶t̶ ̶w̶e̶  subscribe to the view that it’s not the destination it’s the journey that’s important and drive. From Devon to the north coast of Northern Ireland, usually via Glasgow so we can visit Richard’s sister and the kids can get together with their cousins. These journeys have become the stuff of family legend, still talked about years later.

Remember that time we drove to Northern Ireland and Archie would only eat home made gluten free bread and we had to carry a bread maker and toaster in the car and try and fire them up in the hotel room.

Hey remember that time we stopped in that town in the middle of Wales and we thought Archie would love the little train, but for some reason he hated it and you got off looking like you’d been glassed

Do you remember when it was really rough and I was six months pregnant and you and Joe were being sea sick and I had to crash around after Archie who didn’t notice it was rough and was running around next to the magician on the ferry, and he kept going through the exit barrier on the on board shop and setting off all the alarms.

Oh gosh do you remember when had such a traumatic ferry journey that I made you ring your mum as we drove off the ferry and tell her we were NEVER GOING TO NORTHERN IRELAND AGAIN

Oh how we laugh. And then there’s one from last summer.

Remember when we drove to Northern Ireland and Archie screamed from Birmingham to Glasgow and we didn’t know why‘.

It was really quite incredible. The car journey is usually the easy bit with the ferry being problematic. The ferry involves waiting, and other people but Archie loves being in the car and providing we don’t hit traffic jams we usually have a pretty peaceful, if long, drive. But this year? Oh no. We hit Birmingham and Archie started screaming and he didn’t let up until we reached Glasgow. We spent quite a lot of time trying to work out what could be wrong and in the end gave up. Richard drove and I posted increasingly desperate Facebook comments. From ‘Archie appears to have lost his love of long car journeys :laughs hysterically:‘ to ‘Okay it appears we’re not allowed to stop for lunch‘  and  ‘Bad he’s been screaming literallly without pausing for breath since Birmingham, we’re north of Manchester and need to get to Glasgow‘. We were momentarily amused by the bossy Scottish road sign saying ‘Tell Your Passengers To Belt Up’. Er yes, we were trying.

Anyway we never really got to the bottom of it although Archie started screaming at Birmingham again on the way home. We came to the conclusion he just doesn’t like Birmingham. Or something.

Next time we go to Northern Ireland we’ll have the talker and I would expect this to be able to help with any screaming. Often Archie screams because he cannot make himself understood; he has something he is telling us; or he wants an answer to something but simply cannot get us to understand.  We cannot work out what he is saying and so he becomes very upset and frustrated. We play guessing games and if eventually we hit on the correct answer or correct understanding of his communication we’re rewarded with peace. If we guess incorrectly he becomes even more frustrated and loud. Already, this is something that we are finding hugely beneficial about the talker, it makes it so much easier to understand the problem and so cuts down on the screaming.

Last night after school Archie started shouting and complaining. Gradually it became louder. I grabbed the talker and asked him what the matter was. ‘Granny sweeties’ came the rely. All he needed was reassurance that yes my Mum was coming to see that night, and yes she would be bringing sweets and she was just running a little late. Silence resumed. He went back to happily google mapping and I went back to cooking or working or whatever it was I was doing. It took 2 minutes, if that,  rather than perhaps half an hour to sort out.

The talker may end up helping with another aspect of travelling with Archie that can be difficult. Archie looks, for want of a better word, entirely ‘normal’ and so when he kicks off or is difficult we can receive a very unsympathetic response from the public. Another Facebook status from last year’s journey suggests this was, as usual, a problem ‘Next time I travel by ferry with Archie I’m going to dish out lemons for the public to suck‘. It doesn’t really matter, but it can be irritating. The talker helps those that need the help to understand that something is up, that maybe he can’t completely control his behaviour and it can mean we don’t get shouted at. It means I don’t have to use my friend’s technique of a loud ‘TRY not to be so autistic Archie, you’re frightening that lady’. It makes all our lives easier.

An insight into an autistic mind

One of the most interesting things about having the talker is discovering how much Archie already knows. Today, for example we found out that he understands the concept of ‘silly’ and indeed finds it hilarious. Apparently (according to him) he was silly at school today (which has caused much hilarity) and he was pretending to do silly things (such as pretending to eat sweets) – and describing his actions as being silly.

The first time this happened – a sudden realisation that Archie understood and knew a lot more than we realised – was when he started to use google maps. I’d shown him our old house in London and he spent a lot of time showing me old friend’s houses and where he used to swim, and an ambulance station he remembered (and I had completely forgotten). This was pretty remarkable given that he left London when he was two and has never been back.

Google maps remains a favourite pastime. The level of detail he spots is pretty incredible.

Although it can also be a useful communication aid. The following video shows him finding a friend’s house (he’d been there once several months before) and he’ll now find it to ask to go and visit. It’s a bit long winded compared to the talker but does the job.

He’s now also combining talker and google maps. So he’ll find me something that has changed (such as a lamppost) since google maps was produced and use the talker to tell me about it. He’s sharing interests.

I do sometimes wonder how long Archie has understood this much. Until google maps we had no idea he remembered living in London. Until google maps was produced I had no idea he spotted every changed lamppost and painted garage door in our city. Until we had the talker I had no idea that he understood the word silly, or knew the days of the week, or understood the words sore and hospital.

It raises many questions about our assumptions when we interact with people with severe communication disorders. It puts me in mind of one of my favourite poems:

Silent but (by Shigeji Tsuboi)

I may be silent,
but I’m thinking.
I may not talk,
but don’t mistake me for a wall.