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?

Brotherly love

One of the biggest differences since we started Intensive Interaction with Henry has been his increased ability and desire to play with his older brother. Although there are only sixteen months between them in chronological age, the huge developmental gap has meant that shared activities have been difficult to find. Henry has always been keen to play with Ned, but his lack of ability to express this in a way clear and  forceful enough to get his brother’s attention has meant that chances slip by. Now he can demand a variety of games, he does so frequently. The video below  is a short extract from footage shot a few nights ago which shows how much easier they both find it to play. Not only has Henry learnt to ask for what he wants more effectively but also he responds to cues from his play partner rather than simply issuing demands. And Ned is learning about tuning in to his brother and following his lead – all great Intensive Interaction strategies.

The more challenging side of this progress is that Henry has become more demanding of attention at all times, to the extent that he finds it difficult to cope if, for example, I am talking to another adult, or Ned is engrossed in DS or iPhone when they are in the back of the car. At the moment his reaction is to shout ‘stop’ repeatedly, or to lash out physically, and whereas I can (most of the time) ignore the behaviour or tell him ‘no’ calmly, it is much more difficult for an eleven year old who is being hit and pinched. Any suggestions would be welcome.

Remembering Mum

I was looking through some old video tapes over the weekend and found this, from five or six years ago. My mother was a wonderful playmate for children and Henry was no exception. She had the gift of being able to enter into the child’s world and never seemed to get bored: the perfect Intensive Interaction partner.  It would have been her 77th birthday today so I thought posting the film here would be a fitting tribute, as well as demonstrating how important play has always been to Henry’s communication.  Happy Birthday Nanny – we miss you.

Talking

We had a visit from a new speech therapist last week. One of the purposes of her visit was to assess Henry for an AAC device (an electronic talker). It’s something we’ve been considering for a while, ever since a friend of mine started blogging about her son’s amazing progress using a device called a Vantage Lite, which uses a system called LAMP (Language Acquisition Through Motor Planning). Even though Henry has some speech, there are a number of  reasons why he might benefit from such a device: it could make his speech clearer to others, help him with word retrieval and possibly also help him to sequence  words into longer phrases and sentences.

Henry was on talkative form that day, grabbing the speech therapist’s hand as soon as she came through the door, pulling her into the sitting room and demanding tickles and ‘fast running’. She was obviously quite surprised, saying at one point that she had ‘ been expecting a non-verbal child ‘ and commenting positively about his intonation, imitation skills and obvious desire to communicate. For someone whose child had been described by one teacher at school as having ‘no functional language’ you can imagine this was music to my ears. Her advice was to delay a decision about an AAC device for six months, as she felt Henry may be on the verge of a ‘language explosion’ ( more music, a full symphony orchestra this time). We agreed that there are barriers that he has to overcome: difficulties with word retrieval, some consonant blends and sequencing (syllables and words) but that the main hurdle of old, his motivation to speak, is gradually being overcome by Intensive Interaction. I’ve written before about how his speech is confined to requests, but II is helping to extend those requests and also seems to be encouraging him to comment. We’ve had many repeats of the descriptive  ‘noisy’ I wrote about a few weeks ago and we now also get a running commentary at meal times – ‘chips….drink….sausage….chips’. When he started doing this we responded with a slightly irritated  ‘yes, look, your chips are there’, assuming that he was requesting as usual, but quickly realised that he was telling us, not asking. We now say ‘ Mmm chips, yummy’ and he repeats ‘yummy’ and carries on tucking in.

The speech therapist gave us some ideas for how to further extend Henry’s vocabulary and length of utterance within his narrow range of interests. Some of it we already knew, but had become lazy about: not letting him get away with using ‘toast’ to mean both toast and bread, insisting on the phrase ‘I want X please’ instead of just running to fulfil his single barked commands. Other ideas we had never used, for example, the use of scripts to accompany favourite games and other requests, the labeling (with a named picture) of items around the house. She advised us to ban questions that demand unmastered vocabulary as much as possible, concentrating on giving choices instead.  ‘Is this a sofa or a chair?’ is much easier to answer than ‘What’s this?’  as the correct word can be picked, rather than dredged up from memory (when his most frequent response was not ‘sofa’ but  ‘so far away’ !) Above all, she affirmed the growing confidence I’ve been feeling about Henry’s verbal potential.  The motivation to speak is now there, and we need to work as hard as possible on giving him the tools and the practice he needs to do it.

The video below shows Ellie working on a number of scripts with Henry, attempting to turn ‘blanket’ into ‘come under the blanket’, ‘ noisy’ into ‘Ellie, be noisy’ and ‘tickle tummy’ into ‘I want you to tickle my tummy’ (we’ve since changed this to ‘ tickle my tummy please’). She does this by modelling the phrase, then giving a prompt. It’s early days, but he’s definitely getting there. Happy Christmas everyone.

Fridays

I’m aware that I focus on the successes in this blog and, in doing so, am guilty of skewing the picture  – giving the impression that all our days are filled with happy interactions and signs of progress. Readers who have children with autism will already know that this is unlikely to be the case. I’ve also come to recognise a strange phenomenon – the more that one trumpets a particular success, the more likely it is to turn round and bite you on the bum. A few days ago I wrote a proud post on Facebook about our successful visit to the shoe shop, during which Henry had waited ten whole minutes to get measured, had submitted calmly to the foot gauge and had only needed minor Haribo bribery to try on two pairs of shoes. The fact that they didn’t have his size in stock was a small irritation: I ordered a pair on the internet to be collected in store and received a text message to say that they were ready to pick up today, Friday.

Fridays have always been difficult since we started home ed. From Mondays to Thursdays Henry has a timetable – child-centred maybe, but a timetable nonetheless. I teach him Mondays and Wednesday mornings, Ellie on Tuesdays and Thursdays, Jackie on Wednesday after lunch. We do home-based activities in the mornings and go out in the afternoons. I wanted Fridays to be different – more spontaneous and flexible ( I can hear parents of autistic children everywhere laughing like drains as they read those two adjectives). Some things would be constant – popping in to the local special school for play time to give him some contact with other children, and a lunch time visit to MacDonalds, but other than that we would look at the weather and decide on the day. I have also to admit that I use Fridays to catch up on jobs that need doing, labeling them ‘life skills’ to make me feel better – posting letters, shopping, returning library books. Collecting shoes…

It doesn’t really work to be honest. More often than not on a Friday afternoon I’m left with a  sense of dissatisfaction, a feeling that Henry hasn’t got enough out of the day. Perhaps it’s because it’s winter: playgrounds are full of cold hard iron; parks grey and mushy. Anywhere offering indoor play is stuffed full of scary two year olds. I have a sneaking suspicion that I’m not much good at spontaneous and flexible either, at least not when it’s below 5 degrees.

So today we went to school, where Henry played happily. The problems started when we drove to town. It took twenty minutes to persuade him out of the car and even longer to coax him the 200 yards to the shoe shop. The queue was eight people long. At that point I should have turned and left, but, Monday’s success still in mind, I tried to join it. The way he lost control was sudden and frightening in its intensity. I’ve spent the last ten minutes typing different descriptions of how he hit and pinched me and am uncomfortable with all of them – it seems disloyal, somehow, to lay it all out in public. But of course that is what happened in Clarks, under the gaze of what seemed like hundreds of tutting women, who only saw a ten year old boy attacking his mother and probably didn’t register the fact that, in between the hitting, he was crying and saying ‘big hugs’.  I persevered and got to the front of the queue, only to be told I should be in the other Clarks shop. The shoe collecting was abandoned.

I can see many possible reasons why this happened, hindsight being a wonderful thing. I hadn’t put ‘shopping’ on the visual timetable. One of my friends suggested that Henry probably didn’t understand why he was going back to the shoe shop, having only been there a few days earlier. I did explain, but it’s pretty obvious that he didn’t grasp the meaning of  ‘collecting shoes’ or any of the five other ways I tried to explain it. There may have been something about the sounds or sights or smells of the shop today that made him anxious. Whatever the reasons, it left me shaken and Henry sobbing. I was in a dilemma about MacDonalds, feeling that taking him straight away would reinforce the behaviour, yet loath to end the morning on such a negative note. Luckily he walked back to the car cooperatively, though still crying, and even said ‘sorry’, so we went to the drive-through and peace, of sorts, was restored with the first chip. I say ‘of sorts’ because he has not been himself for the rest of the day – heavy-eyed and pale, as if exhausted by the ferocity of his emotions.

Next Friday I will do things differently. I will plan and prepare and read the signs of anxiety better. I’m also wondering how Intensive Interaction practitioners deal with meltdowns. All suggestions will be gratefully received.