A birthday to remember

Last year

This year

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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Say goodbye to the summer

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.

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.

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.

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.

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…

Splash

Something momentous happened last night. It’s the sort of thing that parents of typical children wouldn’t think twice about. To be honest, until it happened, I hadn’t really registered that it hadn’t ever happened before. Henry was getting out of the bath when he suddenly looked at me, grinned, reached back over into the bath and splashed me, laughing. I said, mock-annoyed, ‘Did you just splash me?’ and he laughed again and touched my wet jeans, saying ‘Splash, splash’.

As those of who who read this blog regularly will know, Henry loves to play. But the focus of his play has always been to get someone else to do something to or for him – tickling, shouting, running fast. This is the first time I’ve ever experienced him initiating play by doing something to someone else and it feels like a huge step forward in terms of his social awareness.

We have our first visit from the elective home education officer tomorrow. The purpose of the meeting to to discuss our approach and the curriculum we’re following. I am really hoping that she will recognise the positive effect that Intensive Interaction is having on Henry and value, as we do, his progress in social, play and communication skills, rather than focusing on the fact that formal teaching, for the moment, takes up very little of our day.