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.

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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.

An Inspector Calls…

I know that many parents of children with autism will be familiar with the scenario I’m about to describe. You talk to a professional about your child’s abilities or behaviour; they then meet the child who proceeds to act in a way which bears no resemblance to your description. I can’t count the number of times this has happened to us.  I’ve assured speech therapists that Henry is verbal, only to have him fail to utter a single word in their presence. I remember an Early Years specialist who raised her eyebrows in a faintly pitying expression when I told her that he enjoyed playing, then tried rolling a ball to him. He didn’t just ignore her and the ball – it was as if neither of them existed. And on the other hand, I’ve sometimes warned doctors that he is likely to react badly to certain procedures, only to have him hop up onto the couch and lie down, smiling sweetly. I’m not sure if I’d rather be seen as deluded or over-anxious but I know that a scribble in the margin is possible either way.

We had our first visit from the Elective Home Education Officer this afternoon. She wanted me to talk about our programme and how Henry is progressing, which I did, describing how his speech, social and play skills have improved since September. Henry then came in from the garden where he’d been playing with Ellie and – to my enormous surprise – proceeded to demonstrate everything I’d been talking about: interacting with Ellie, requesting things, trying to get my attention by saying ‘Mummy’, asking the EHEO to tickle him and treating her, not like a stranger to be ignored or got rid of as soon as possible, but as an adult who was very probably going to add to his afternoon’s entertainment. She was charmed and pronounced herself ‘more than satisfied’ with the way things are going.

Now for speech therapy on Thursday…

Hammock

I haven’t written much about sensory integration therapy on here as yet, but it’s certainly something that benefits Henry hugely. He seems to crave swinging at the moment, in particular swinging on the hammock in our garden. The clip below shows how this seems to help enable his speech. Occupational therapists would explain this by saying that the vestibular feedback he gets from the movement helps to regulate his sensory system and organise his brain, including the speech centres. Others might say that he’s simply having fun and that this is motivating him to speak. Whatever the reason, he’s certainly having a good time ordering me around!

Half term reflections

Last day of the half term holiday today and time to look back on the first eight weeks of home schooling. What have I learnt, and what, more importantly, has Henry?

First of all, ignoring everything I learnt as a teacher, I set far too many targets. According to my home-grown IEP, he should now be able to dress and undress independently, swim a few strokes without armbands and be able to read his own name and those of family members, as well as about twenty other things, none of which he can do consistently enough to justify ticking them off. None of the targets were unrealistic, but what I didn’t take into account was the huge effect of  the environment on Henry’s learning. So even though he was beginning to swim without floats in the open-air pool in the summer, changing to the covered pool with all its echoes and humidity meant that even getting him into the water was difficult for a few weeks. Dressing and undressing skills? I’d forgotten the annual challenge of  wearing long sleeves. We’ve got past that one now, but it meant that independent dressing has had to be abandoned for a routine of coaxing, cajoling and massage to reduce skin sensitivity. I had always known that he doesn’t make progress in a linear fashion but being with him all the time has made me aware of just how erratic his learning can be. One day he can read all our names without difficulty; the next he struggles to pick out his own.

Despite this, there have been some huge successes. One of the areas in which Henry has made real, definable progress has been in speech and communication. He is now using two and three word phrases to request some activities (name+activity+ please if you’re lucky). He is much more demanding of adult attention (sometimes a mixed blessing) and actively seeks out play even at times when he could be watching his beloved YouTube clips on the iPad. His ability to read  facial expressions and gestures has improved too. Sensory defensiveness has lessened, in particular his ability to tolerate the sound of crying. He is much more able to wait patiently for the computer to load, and to cope with frustration when it goes wrong.

And so I’ve come to recognise that targets have to arise organically, out of what actually happens, rather than what I want to happen. His new communication skills and love of play have developed as a direct result of Intensive Interaction, or rather our peculiar II/ABA mash-up, which involves getting him engaged and involved through II type play, then throwing in short bursts of learning activity which are rewarded with more II (and sometimes crisps). Sensory play (in particular the’noisy’ game) has helped to regulate his ability to process sensation. The child-led nature of the school day has made both of us calmer – I am more prepared to take time, to wait for him to follow an instruction or engage in an activity, and Henry, as a result, is much more compliant and less likely to hit out when things don’t go his way. Our targets for the next half term are fewer and build on the progress he has already made. It would be great if, by Christmas, he could be using the ‘name+activity+please’  phrase to discriminate between different people. At the moment he has a tendency to rattle off ‘Ellie sit down’ or  ‘Ellie tickle tummy please’ no matter who he’s addressing ( a bit like a toddler calling all animals ‘doggie’) although he often uses the correct name when prompted.

Finally, I have learnt that home-schooling is bloody hard work. It came home to me a few weeks ago, when Justin and I had a rare child-free weekend away. It’s always odd to be without Henry – the absence of the feeling of being constantly vigilant has tended, in the past, to make me feel slightly uneasy, as if I’ve forgotten something. But walking along the Cobb in Lyme Regis made me realise that the hyper-aware feeling is something I now experience nearly all the time – and it wasn’t until I felt its absence that I understood that fully. Being tuned into someone else all day is exhausting and, despite the fact we have a huge amount of fun I don’t always do it well – there are days when I’ve been driven to distraction by his refusal to wear a particular T-shirt, bored silly by endless demands for tickles. Thank goodness for the wonderful Ellie, who never seems to tire of tickling, running around the garden ‘fast’ or shouting at the top of her voice, for Jackie, our lovely respite worker, who gives me two hours on a Wednesday afternoon, and for Justin, who takes over the role of playmate at evenings and weekends. I’m aware that I always write ‘I’ in this blog and that this is unfair – I couldn’t possibly do it on my own.

Noisy – Part 2

We were in the car this morning when a rubbish truck rattled past.   ” Noisy!” Henry said. If you have watched the video attached to my last post, you will understand how happy this made me.

Henry has been speaking to request things since he was four. But that is all he has ever done with words. For him, it seems, language is a tool to get the things he wants – food, DVDs, games. We’re working on extending the barked commands – ‘ Toast! Thomas! Tickle! ‘ – to a more complex (and socially acceptable) ‘More X please’, which works because of the built in reward factor: you can withhold the request until the whole phrase has been said. But encouraging comments is much, much harder because it has no immediate pay-off. We can point at stuff when we’re out and sometimes, if he’s in a good mood, he’ll tell us what it is. But unprompted speech to comment on a sight, an experience, to share attention? Never. It’s a problem that’s been occupying me for some time – he has a very basic level of functional language, sure, but without comments it’s difficult to develop it into conversational speech. Yet the fact that he’s happy to engage in the gestural back and forth of Intensive Interaction, with all its characteristics of conversation – listening, responding, turn-taking – makes me think that it’s not lack of motivation and interest that’s stopping him making comments, as I had previously thought, but just not knowing how to do it. And maybe, just maybe, this is another way in which Intensive Interaction will help. I can’t wait.