Christmas is coming

I met a friend at the weekend who told me that her four year old had rushed home from school on the 27th November, yelling “Three days ’til Christmas Mummy! Three days ’til Christmas!” Her class had been talking about Advent and she took a great deal of convincing that she would in fact have to wait three weeks until the big day. Henry has never shown any anticipation of Christmas, nor any special enjoyment of the day itself. He likes looking at photos of Christmas lunches and has a particular fondness for the song ‘When Santa Got Stuck Down the Chimney’ because he likes the sneezing at the end. I suspect if it was called ‘When Simon Got Stuck Down the Chimney’ his joy would be undiminished.

This year things are slightly more confused. When Henry was younger, he used to call ‘crisps’ ‘creemas’- the ‘s’ sound followed by a consonant has always been difficult for him. If asked to identify the fat man in the red suit or a pointy tree with lights he would also say ‘ Creemas’. We could always work out which one he meant, basically because if he said it spontaneously it was always the potato snack. We’ve been working on the ‘s’+ consonant sound over the last year in speech therapy and he’s been saying ‘crisp’ for quite a while. However, in the last two weeks he’s reverted to ‘creemas’ – and this time it’s harder to work out which one he means, because, for the first time ever, he is showing a smattering of interest in the festive season. We went on our regular Monday trip to Sainsburys yesterday – more about life skills than actually needing to do any shopping – and I found myself being pulled towards the Christmas display in the foyer, where there was one of those things you can put your head through and be photographed. There was a lot of ‘creemas, creemas’ going on – but as the only thing that makes the supermarket bearable for Henry is the fact it is home to a large and tempting array of crisps, it could just as easily have been those he was referring to. I decided to risk it.
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And thanks to a woman who was selling RAC membership opposite, we even got a photo, of sorts, of the two of us.
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Happy Creemas everyone!

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A birthday to remember

Last year
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This year
Henry's birthday cake

Henry’s birthdays up to now have often been a bit of a non-event. We’ve tried hard to make them special and he’s usually enjoyed himself, but apart from an interest in birthday cake he has never bothered with the things that make the day a Birthday: presents, cards, parties. Yesterday he was 11, and there was a significant change in his attitude. He was interested in his presents and keen to unwrap them, even doing some independently rather than giving up at the first tough piece of sellotape and wandering off. He opened some cards and even (pass the brandy) looked at them!

The very best part of the day though, was his party. We held it at the West Huntspill Miniature Railway, a local organisation run by model railway enthusiasts, who have been driving their steam and electric trains around the Memorial Fields for the past forty years. They’re open to the public on Sunday afternoons, but also hire the railway out for private parties: three hours of unlimited rides for an unlimited number of guests. I was a bit anxious about a three hour party for 14 children, most of whom have special needs, thinking it could be too long, but my fears were unfounded. What I’d forgotten is how much time it takes some of our children, particularly those with autism, to ‘warm up’ to a new environment and activities. For the first hour many of them were cautious, preferring to watch the trains whizzing round rather than venture on themselves. Henry loves trains and has been to this railway twice before, but even he took some convincing. By the end, however, nearly every child had ridden, and for the last fifteen minutes the kindly, calm men who run the show were inundated by children(and their parents) wanting just one more turn around the track. The field was big enough for football, parachute games and, in Henry’s case, endless piggy backs – the fact we had so much space made a huge difference, allowing children to get away from the crowd if they needed and taking away the sensory onslaught that can often make indoor parties overwhelming. And at the end, when the birthday cake was brought over to the station platform, Henry came running over smiling, made a creditable effort to blow out his candles and was delighted rather than cowed by the loud and enthusiastic singing of Happy Birthday. As I watched the faces around us, I realised how lucky Henry is to have this peer group, many of whom he’s known for years and will continue to mix with when he goes back to school next September. And also how lucky we are to have such a wonderful set of parents, friends and helpers, who act as a support for us as much as for him.

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I’ve neglected writing this blog over the summer, but it’s been a good one, probably the best we’ve ever had with Henry. So I thought I’d start the new home-school year by looking back at what made it such a positive time.

First – camping. Camping suits Henry. Being with us in a confined space, either in the tent or the camper van, seems, strangely, to make him more sociable, happier and calmer. He was asleep every night within ten minutes of going to bed and rarely woke before 7.00. I wonder whether it was because we all went to bed at the same time, whether sleeping with someone else in the tent makes him calmer or whether it was just the effect of fresh air and exercise. He was also very communicative – I noted down the following conversation one morning.( Note that Henry calls our camper van the ‘bus’)
H: Computer!
Me: Computer in bus. Ned asleep in bus.
H: Ned…sleep…very sleepy
Me: Yes, he’s asleep
H: Very sleepy. Computer?
Me: Where’s the computer?
H: (no answer)
Me: The computer’s in the b…
H: Bus!
Me: Yes!
H: (silence) Computer!
Me: Computer in bus. Ned asleep in bus.
and so on…
Circular and repetitive it may have been, but such an exchange wouldn’t have happened a year ago. Even more importantly, it enabled him to wait until Ned was awake without losing control. Although he was anxious to get his hands on the computer and he really didn’t want to wait, he could cope.

It was while we were camping that we noticed Henry’s increased desire to be with his peers. Ned’s best friend Guy came with us for the first three days of our trip and the two older boys spent a great deal of time rolling down the campsite hill and landing in a wrestling heap at the bottom. Henry was fascinated by this and would point at them, laughing, and then look at me – shared attention, at last! If I said ‘You can go and play’ he would walk over and stand by them, but seemed puzzled or reluctant about joining in. Thank goodness for Guy, who would take the play down to his level, tickling and chasing, building bridges between their play and his. Henry has only just started to call me, his Dad and Ned by name to get our attention, but he was shouting out ‘Guy!’ after two days.

Second – we seem to have solved the ‘stop talking’ problem which has dominated family outings for months, whereby Henry would shout ‘stop stop stop’ repeatedly if any of us started talking while we were driving, in the car or van. Failure to comply immediately with his command would lead to him hitting and pinching the person sitting next to him, usually his brother, leading to many halts in laybys while Ned and I changed places. We had thought about the reasons for this for a long time, wondering whether it was a sensory issue (too much noise), a language difficulty (too many incomprehensible words) or a feeling of exclusion (‘this interaction doesn’t involve me’). We had tried talking quietly (the ‘stops’ got louder), using one sentence at a time (difficult, as those who know me will realise), not talking at all (ditto) and ignoring him (here comes that layby again). We had tried to persuade Ned to unplug himself from his iPhone or Kindle and play with his brother (of which more later). In the end the solution turned out to be much, much more simple. One day, realising that Henry had grown taller, we took out his car seat. The ‘stops’ stopped. It was a great example of not seeing the wood for the trees, but also brought home the difficulties of having a child who can’t say ‘I’m squashed – get me out’.

Best of all this summer, Henry’s relationship with his brother has improved hugely. He wants to know where Ned is, asks him to play constantly and is very affectionate towards him. In return, Ned gives him far more attention than he ever did before. It’s lovely to see. I asked Ned why he thought their relationship had got so much closer and he said “It’s because I read ‘The Reason I Jump’“. The book (written by a non-verbal Japanese boy with autism) has, he says, changed the way he thinks about Henry and about autism, helping him to understand the way his brother may be feeling when he behaves in certain ways. So thank you, Naoki Higashida. You’ve been part of a great summer.

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Squirt

I haven’t blogged for some time, partly because we’ve been going through a difficult patch. As often happens when the seasons change, Henry’s behaviour has become more challenging. The arrival of the hot weather, a source of joy for most of us, seems to make him agitated and moody. It’s partly physical – a reaction to pollen and humidity – and partly, I think, just a response to change: in temperature, in light levels, in the clocks. So it was lovely today, after what seems like weeks of being told to ‘stop’ and ‘go away’ whenever I suggest an activity, to have some fun in the sunshine with a hose. The video below is terrible in terms of quality – my camera is filming everything with a black and white background and I can’t work out how to flip the footage to the horizontal, but if you don’t mind watching it with your head at ninety degrees, you can see how much fun he’s having. In terms of language, it also shows how quickly he can now pick up a word for something he wants and how hard he tries to pronounce the difficult combination of sounds.

Flexibility

A few weeks ago Henry’s tutor took him to the outdoor swimming pool, a place he loves. He starts saying ‘swimming’ the moment we put the picture on his visual timetable and this is continued at regular intervals, reaching a peak on the walk there, like a constant check that he’s actually going. On this particular occasion they arrived at the pool, Ellie helped him change and then looked in her own bag – to find no swimsuit. They had to pack up again, walk into town, buy a swimsuit in a crowded, noisy sports shop and walk back again. All of which Henry managed without a tantrum or a single head-hit.

I’ve told this story many times (apologies to family and friends reading this!) as it amazed me. Henry, like most autistic children, does not like plans to be thwarted. He is not a fan of shopping. He particularly dislikes waiting while people choose what they want to buy – any shopping trips with him are usually of the grab and run variety.And although he understands the ‘first X, then X’ formula, it doesn’t seem to make it any easier to cope with the prospect of deferred pleasure.

To be honest I thought it was a one-off, but in the weeks since this happened we’ve had more examples of an increased flexibility, an acceptance of unpleasant situations and a willingness to wait for the things he wants. So much so that I feel able to invoke the Bloggers Curse (write about a positive change and it immediately vanishes, never to return…)

Food has always been a potential flashpoint. Henry’s day is structured around his meal and snack times and, possibly because of blood sugar issues, he can get very agitated if a particular food is unavailable or a meal delayed. When he was at school his favourite word was ‘lunch’ – they heard it a lot. Two weeks ago we started going to the special school he will be attending in Year 7 for some transition activities, one of which is the midday meal. We arrived early and Henry immediately sat down at the empty Key Stage 3 table, looking expectant (and yes, repeating ‘lunch….lunch….lunch’.) As I was saying ‘ Let’s wait for the other children’, a TA told me that the students have set places and as she didn’t usually sit on that table, she couldn’t remember exactly who sat where. It was a dilemma, as neither of us wanted Henry to be upset at having to move, yet we didn’t want the pupils’ routine disrupted either. It was worth a try – “Let’s go and wait on the bench until the other children come in”. And he did. No problem. Definitely one of those proud mother moments.

At half term we experienced the ferry trip from hell when travelling to the Isle of Wight on a rainy, windy Friday: no seats, people packed into every spare inch of space , babies crying, a constant loud buzz of conversation, no electronic gadgets. He sat with us on our allotted three foot square of carpet in between the car deck stairs and the life-jacket cupboard and ate crisps with his fingers in his ears – resigned, not enjoying himself, but calm.

I am wondering at the reasons behind these changes. His sensory defensiveness has definitely decreased since we started home education – I am even wondering if its too far-fetched to suggest that all the ‘noisy’ games he loves have acted to desensitise him to sounds he used to find uncomfortable? Intensive Interaction has had a huge effect on his trust in us – maybe he’s prepared to prepared to wait because he is confident he’ll get what he wants in the end?

As I type this, Henry has just finished his lunch, which included a tiny portion of carrots, peas and sweetcorn – the first separate, non-disguised vegetables he has eaten for six years. I am giving him a piece of flatbread for every cube he swallows, but a few months ago this wouldn’t have made any difference – he would have ignored the flatbread and dropped the veg on the floor, or become very upset at not being allowed the bread on its own. He’s not loving the veg – far from it – but he’s prepared to give it a try to get something he wants. I’m hoping the love will develop!

It’s not all tranquility by any means, as anyone within 100 metres of a certain hairdressing establishment yesterday will testify. There are still some situations which Henry finds very difficult to cope with. But afterwards, when we went next door to the newsagents to buy his post-haircut bag of crisps and they didn’t have any ready-salted, he accepted my assurance that we would go to another shop without any fuss at all, despite the fact that he had been very agitated only moments before.

This weekend we are taking him to a wedding, his first ever. Watch this space…

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Intensive Interaction at the Dentist

One of the huge benefits of Intensive Interaction was demonstrated to me this afternoon when we did our six monthly trip to the dentist. Henry attends an access dental centre which specialises in treating people with additional needs, but even though they’re infinitely patient with him, our visits tend to be swift, with the dentist getting a snatched look at his teeth at best. But this time was different. Instead of pacing the room before being coaxed onto the chair, he jumped on straight away and sat there nonchalantly swigging minty water while I talked to the dentist. Instead of assuming his usual rigid half sitting up ‘fight or flight’ position when the chair was raised he lay flat, grinning up at the dentist and her assistant. I knew what was coming. ‘Tickle my tummy’ he said. ‘Be noisy’. And to their credit, they did both. After that, opening his mouth was a doddle. Teeth were seen that haven’t been examined closely for years. I wish I’d had a camera with me, as it was a really joyous occasion – and how often can any of us say that about the dentist?

I’ve written before about how Intensive Interaction has made Henry see all adults as a potential source of entertainment and that was definitely part of what was happening this afternoon. But it has also helped him to trust and to relax. The familiar play routines seem to give him security in potentially stressful situations and he uses them socially, a bit like conversation, to gauge whether an adult is worthy of attention and response. To him, this afternoon, opening his mouth (and, crucially, keeping it open), rather than being an instruction imposed on him by a stranger, was part of the whole business of back and forth interaction.

Summer term

First days are always difficult. Henry has spent the whole of the Easter holidays doing more or less what he likes and any sense of routine has been pretty well absent. But this first day has been made much easier by the arrival of a visitor we haven’t seen much of recently – the sun. Being trapped inside by rain, wind and cold for much of the last five months has been depressing, but it has also deprived Henry of one of his most important sensory activities: trampolining. Of course it’s possible to trampoline in winter, but he hates the dead leaves, the dirt, the pools of water that collect under the surround and ambush your feet as you jump. He’s a fair weather bouncer and so this weekend has been the first time he’s been on in months. Today we spent a long time on the trampoline together and I remembered why I love it. Henry managed to imitate a sequence of actions (clap, touch knees, turn around, seat drop) that he would find difficult on ‘dry land’. He’s been struggling with the speech therapy pronunication exercises we’ve been given – consonant blends with ‘s’ and three syllabled words – but ‘sneeze’, ‘snow’ and ‘snore’ came out perfectly while bouncing and saying ‘tram-po-line’ with a jump on each syllable seems to help his articulation too, as well as being a lot more fun than simply repeating it. Eye contact and engagement were great and we had lots of spontaneous speech as well as the ‘drills’ – ‘Mummy sit’, ‘jump high’, ‘lie down’ (I needed that one) and ‘get out’ (when the cat had the temerity to try to join in).

The sensory feedback Henry gets from this type of activity is described by occupational therapists as ‘proprioceptive’ and ‘vestibular’. Proprioception governs motor control and posture and works with the vestibular system, which keeps the body balanced. Together they provide a sense of where the body is in space, an orientation of oneself in relation to the world. Trampolining, which requires constant adjustments of balance, posture and muscular effort in order to stay upright and bounce rhythmically, is a brilliant way to get these systems working in harmony, enabling my son, who cannot jump off a chair, climb a ladder or balance on a beam without support, to do the most effortless and graceful seat drops. As I’ve written before (Hammock, November 2012) being physically regulated also seems to help organise his brain, including the speech centres. And it also makes him very happy and calm. We went into town in the afternoon and he queued patiently behind two people in Next, managed to walk out of a charity shop without melting down because they didn’t have any DVDs he wanted and, having pointed at a Twirl bar in Smiths that was well within grab-unwrap-and-stuff-into-mouth-in-seconds range, accepted without complaint that he couldn’t have it ( I’m not mean; he’s allergic to dairy). Summer, I love you. Please don’t go away.

iPad lad (with thanks to B’s Dad)

Henry brings me the iPad to show me a thumbnail photo of his brother watching television.”TV, TV” he says. I’m busy in the kitchen and say “Yes, Ned watching TV” in speech-therapy-approved-extending-the-phrase style but this isn’t what he wants. What he is pointing at in the photo, increasingly insistently, is a miniscule rectangle of green balanced on the top of a heap of similar tiny rectangles piled on the table beneath the TV. Helpfully, he grabs the iPad back, selects the photo, enlarges it with finger and thumb and shoves it under my nose again. If I squint, I can just about make out a video. Rosie and Jim:Trees. Of course, this, according to the Law of Things One is Asked When in the Middle of Cooking Dinner, is the one video that is no longer in the pile. We have Rosie and Jim:Puppets, Rosie and Jim:Hats and Rosie and Jim:Gingerbread Man, but none of these will do. I spend many, many minutes looking behind sofas and under beds and many, many more trying to explain that Rosie and Jim:Trees has disappeared, is gone, lost, not here, while Henry grows increasingly frustrated. It’s in the photo, therefore it should be here.

Despite the hair-tearing, this incident got me thinking about Henry’s use of IT and my thoughts were further stretched by a post entitled ‘The IT Kid’ on the blog ‘Life with an Autistic Son’ (http://autisticson.wordpress.com) in which the writer, ‘B’s Dad’, discusses his son’s obsession with computers. I hope he won’t mind me taking the theme and running with it for a while. Although our sons are at the opposite ends of the spectrum, much of what he writes hits me with a thud of recognition.

Henry adores his iPad. It is the first thing he asks for in the morning and he would happily use it all day if we let him. Before the iPad, it was our PC and before that, a portable DVD player, but neither had the ease of use and sense of control that the iPad seems to provide. He doesn’t play games, but has built up a vast library of bookmarked Youtube clips around which he scoots with dizzying speed. Each clip brings up a menu of alternative links, and he is able to navigate between these, sometimes jumping between six or seven screens before finally arriving at the clip he wants. There must be part of his brain that resembles a London Underground map, telling him that to get to Truly Scrumptious he has to travel via Trumpton and Tots TV, changing at Toyland and Fun Song Factory and finally alighting at Chitty Chitty Bang Bang. Each clip is also studied in minute detail, so that he knows exactly where to move the play bar in order to get to the moment when Thomas sneezes or the judge tells Toad he is sentenced to ‘another year for being green’. He’s also interested in the photo library, though not to anything like the same extent, tending to focus on pictures of himself eating chips and the aforementioned TV photo, but other than that, it’s YouTube all the way.

We have rules for iPad use – he only has it during the school day at lunchtime and isn’t allowed it after dinner in the evening. We’ve also introduced ‘iPad sharing time’ in the morning, whereby he engages with a speech therapy, colours or drawing app in return for a turn on YouTube, which we then watch with him. But there are still a huge number of hours a week when he’s glued to a screen. Like many parents, this makes me feel guilty, but there is perhaps more anxiety attached to the issue when you have a child with autism and speech delay, and particularly one who responds so well to therapies like Intensive Interaction. Every minute that he spends communing with YouTube is one less minute spent interacting with another person, one less minute learning about two-way communication, one less minute exploring the real world (and who am I kidding typing ‘minute’ when I mean ‘hour’?). Another worry is the fact that iPad use seems to increase stims, in particular a repeated, drawn out ‘ Eee-eeee’ sound which, not to put too fine a point on it, just makes him sound more autistic.

And yet and yet – it’s the only thing he can do independently with any degree of skill. His fine motor skills, so delayed in other areas, are precise and delicate when he’s navigating on screen. Listening closely to the clips he chooses reminds me of something I’ve always known – that he loves the sounds and rhythms of words as much as music – and that is something we can use in II sessions. It gives us time to do other, necessary, domestic stuff. It saves the TV remote from imploding. Apart from the fact that he still favours CBeebies and Hit Factory, his skills are more age=appropriate than in any other area of his life. And above all, what his use of the iPad demonstrates is his enjoyment of having something he can control, absolutely and completely, in a world where not much else is easily controlled.

Of course we’ve considered cashing in on Ipad-love to try using the device as a communication aid, but Henry absolutely refuses to have anything to do with Proloquo2Go or any of the other talker apps we’ve tried. It’s the old story – anything he wants, he learns to say or finds a way to show us, as the ‘Rosie and Jim’ incident demonstrates. It’s not something we’ve ruled out though and although we’re following the speech therapist’s advice to concentrate on developing his spoken language at the moment, it’s something we’ll revisit. Unfortunately, I think we’ll need another device – one without Youtube!

Counting

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A huge breakthrough today – after years and years of trying, Henry finally seems to understand the question ‘how many?’ He’s been able to recognise numbers 1-10 for a couple of years, can tell you how many fingers you’re holding up (thanks to all those ducks, frogs, monkeys and green bottles), but has never been able to relate this to actual counting. The concept of numbers, ‘the twoness of two’, just seemed beyond his grasp.

The breakthrough has come courtesy of a kit called Numicon, a system which uses hollow pegs on a baseboard, as shown in the photos above. We did try Numicon a year or so ago, at home and at school, with little success, but this time he has been keen to use it and results have been rapid. We started by getting him to recognise the base shapes 1 to 4, in order and given randomly, then moved on to putting the pegs in the holes, and finally to balancing marbles on the top of the pegs, counting all the time. This morning I tried holding the marbles in the palm of my hand, very close to their matching peg shape – Henry had no trouble saying how many there were, but as he has excellent pattern recognition I still felt that he had possibly learnt the shapes rather than really understanding the numbers, the same way that he’s learnt that a certain pattern of fingers is called ‘eight’, without actually counting them. But tonight before bed I was putting the box of marbles away and had a sudden impulse to see how much he understood. I put first one, then four, then three marbles in my hand and asked him ‘how many marbles?’. He got it right every time.

Of course, there’s no guarantee he will be able to generalise this knowledge. If I put three spoons on the table tomorrow, he may still be unable to tell me how many are there. But it feels like an enormous leap forward and one that I had been thinking he might never make.

A question of age

We had another speech therapy review earlier this week, with two therapists this time, and again it was a very positive experience. Henry was hugely excited at the prospect of having four adults to play with and was throwing all the words and phrases he knows at us to keep it going. The therapists were delighted with his progress and full of useful ideas about how we can capitalise on his increased desire and ability to speak.

One thing that was said brought me up short, however. ” You have to consider,” said one of the therapists, ” whether ‘tickle my tummy’ is an appropriate phrase for Henry to be using with people outside the family. ” She pointed out that this was the very first thing he’d said to them when they entered the room and I had to agree that, at the moment, it does seem to be his greeting of choice. Henry has always been quite discriminating in the way he approaches people, reserving familiar games and routines for those who he sees often, but since we’ve started home education, and in particular Intensive Interaction, he does seem to feel that everyone who visits the house is coming with the express purpose of entertaining him. And when the man who’s come to service the Aga is asked to ‘tickle my tummy’ it’s probably time for a rethink.

So the therapist’s comment has got me musing about the issues that arise when you have, in effect, a three year old in a ten year old’s body. There’s the obvious matter of social appropriateness, but there are other things to consider too. Should we be attempting to ‘age up’ the games we play, the books we read and the songs we sing? At the moment one of Henry’s favourite pastimes is to stick his foot in your face and demand ‘This little piggy went to market’. That’s a SIX WORD PHRASE and even if he’s not quite saying all the words (it comes out as ‘tikka piggy a market’) it’s still one of the longest speech sequences he’s ever been able to produce. Steven Wertz of Growing Minds, who we used to work with when Henry was younger and whom I respect and admire greatly, is a proponent of making the game fit the actual age of the child and I can see his point. Henry is much more likely to make friends of his own age by being able to kick a ball back and forward than by shouting ‘be noisy’ at them, by wanting to listen to Cee-Lo Green rather than CBeebies. And then there’s the thorny question of social rules. Henry has become very demanding of attention, shouting ‘stop stop’ if I’m on the phone or having a conversation with someone else. He wants to play his games over and over again and although he understands the concept of ‘one more, then finished’, he often becomes distressed and angry at the prospect of stopping. In effect, he wants Intensive Interaction much of the time, and while this is great, it doesn’t always work when a friend has come round, outside school hours, wanting coffee and a chat and finds herself coerced into spinning madly in the middle of the sitting room instead. Of course, this demanding of attention is a stage that most typically developing toddlers go through, but whereas I’d be teaching an NT three year old to wait, not to interrupt and to play independently, the desire to interact is something that we welcome, quite literally with open arms, in Henry’s case. Of course I want him to learn social rules but at the same time I’m very keen not to smother his new-found joy at being able to connect with other people. If you ask him to wait he won’t sit and join in the conversation or play on his own nearby – he’ll disappear upstairs with the iPad.

So, it’s a puzzle and one we have to mull over in the next few weeks. Teaching him who he can ask to tickle his tummy is the easy bit. Extending his vocabulary will help too, as he is often using ‘tickle my tummy’ to mean ‘play with me’ in the same way that he uses ‘be noisy’ to mean ‘talk to me’. But how do we teach him that he’s not always the centre of the universe when his II sessions are telling him the opposite?