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’)
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: (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.