First days are always difficult. Henry has spent the whole of the Easter holidays doing more or less what he likes and any sense of routine has been pretty well absent. But this first day has been made much easier by the arrival of a visitor we haven’t seen much of recently – the sun. Being trapped inside by rain, wind and cold for much of the last five months has been depressing, but it has also deprived Henry of one of his most important sensory activities: trampolining. Of course it’s possible to trampoline in winter, but he hates the dead leaves, the dirt, the pools of water that collect under the surround and ambush your feet as you jump. He’s a fair weather bouncer and so this weekend has been the first time he’s been on in months. Today we spent a long time on the trampoline together and I remembered why I love it. Henry managed to imitate a sequence of actions (clap, touch knees, turn around, seat drop) that he would find difficult on ‘dry land’. He’s been struggling with the speech therapy pronunication exercises we’ve been given – consonant blends with ‘s’ and three syllabled words – but ‘sneeze’, ‘snow’ and ‘snore’ came out perfectly while bouncing and saying ‘tram-po-line’ with a jump on each syllable seems to help his articulation too, as well as being a lot more fun than simply repeating it. Eye contact and engagement were great and we had lots of spontaneous speech as well as the ‘drills’ – ‘Mummy sit’, ‘jump high’, ‘lie down’ (I needed that one) and ‘get out’ (when the cat had the temerity to try to join in).
The sensory feedback Henry gets from this type of activity is described by occupational therapists as ‘proprioceptive’ and ‘vestibular’. Proprioception governs motor control and posture and works with the vestibular system, which keeps the body balanced. Together they provide a sense of where the body is in space, an orientation of oneself in relation to the world. Trampolining, which requires constant adjustments of balance, posture and muscular effort in order to stay upright and bounce rhythmically, is a brilliant way to get these systems working in harmony, enabling my son, who cannot jump off a chair, climb a ladder or balance on a beam without support, to do the most effortless and graceful seat drops. As I’ve written before (Hammock, November 2012) being physically regulated also seems to help organise his brain, including the speech centres. And it also makes him very happy and calm. We went into town in the afternoon and he queued patiently behind two people in Next, managed to walk out of a charity shop without melting down because they didn’t have any DVDs he wanted and, having pointed at a Twirl bar in Smiths that was well within grab-unwrap-and-stuff-into-mouth-in-seconds range, accepted without complaint that he couldn’t have it ( I’m not mean; he’s allergic to dairy). Summer, I love you. Please don’t go away.
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!
Despite the positive gains we’ve seen already, there are still times when Henry is very hard to reach. We’ve had a couple of these days this week. It’s as if someone has reached into his head and scrambled his brain. His eyes are unfocused and heavy, his face pale. He paces the room, flitting from one thing to another, fingers in his ears. Every word or action of mine, however quiet and tentative, is met with a muttered ‘Stop stop’. It reminds me of when he was in the process of being diagnosed and, as there had been no sudden regression, the paediatrician asked us to look back through old family videos to see if we could pinpoint the age he was when his autism first became apparent. And there it was, at sixteen months, quite clearly on the screen as it had not been clear at the time – a dulling of the eyes, a gradual turning inwards, a gaze that did not meet the camera lens or the person behind it.
It is as times like these that I long to be able to see inside his head and find out just what is going on. I hate not knowing, and not being able to fix it. Being with someone who seems completely preoccupied with his own sensations, thoughts and feelings to the exclusion of everything and everyone else is a demoralising experience, particularly when that someone is your own child. It is like having a door slammed in your face.
However, as I’ve discovered recently, Intensive Interaction offers a way in. It doesn’t force attention or response, but is more like a wooing, a gentle courting of attention. I’ve written a page about II on here, with some video clips, and also linked to the UK site on my ‘About’ page. Where it seems to be most effective with Henry is in conjunction with sensory integration activities, in particular using sound. I have found that if I mirror his sounds, he becomes more engaged to the point when I can change to words. It’s interesting, as sound sensitivity is probably his biggest sensory difficulty – he often puts his fingers in his ears, tells us to stop talking and becomes very distressed if he hears a baby crying. Yet put him in control of the sounds being made ( in II you always follow your partner’s lead ) and he becomes involved and happy. I’ll try to upload some video in the coming week – today’s attempt was scuppered by an 11 year old cameraman with a penchant for wild zooming and panning…
“We cannot teach anybody anything if they are not listening to us” (Phoebe Caldwell)
The first ten days of home-schooling have brought home to me just how vital it is to get Henry attentive and calm before attempting to teach him. Sensory Integration therapists talk about ‘deregulation’ – that state of mind and body where everything is scattered, unfocused and overwhelming. I like the term – it describes the times when Henry is disengaged and hyperactive perfectly, but much less emotively. Observing him for whole days at a time has made me realise just how often he is deregulated and the range of strategies he adopts to deal with the overload: repetitive actions, avoidance of demands, hitting out, freezing on the spot with his arm across his face, putting his fingers in his ears.
It wasn’t that I was completely unaware that this was happening. One of the reasons for home educating Henry was to try to reduce the sensory overload he was experiencing at school. I had planned a timetable which had short bursts of formal table-based learning sandwiched between longer play sessions, based on Intensive Interaction, Floortime and Sensory Integration. But after the first few days he became so agitated in the table-based sessions that it was impossible to continue, even though he had been engaged and cooperative in the play- based activity just beforehand.
So my carefully structured timetable has been abandoned for something much more fluid, guided by how regulated he seems and directed, for the most part, by Henry himself. I have a list of targets for this half term and I try to incorporate teaching towards these targets into the play sessions he loves. It has meant being much more flexible and spontaneous than I’m used to (I’m very much a ‘lists’ person) and having to think on my feet, grabbing opportunities for teaching from moments that occur naturally. There have been some successes: he is using two or three words to request favourite activities (‘More X please’) and although he usually still needs a prompt to do so, a raised eyebrow is generally enough. He is starting to be able to count objects, thanks to endless repetitions of the Fun Song Factory classic ‘ Five Little Snowmen’ and some hastily made finger puppets. And during an Intensive Interaction session, he came up and said ‘Hello Mummy’ – the first time he has ever done so unprompted. I’ll write more about Intensive Interaction in my next post – and, if I can overcome my technophobia, will try to upload some video. It has been a revelation to me – such a simple technique but so effective in achieving shared attention.