Monthly Archives: November 2012

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.

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.