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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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?