Tag Archives: deregulation

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…

all photos 234

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Fridays

I’m aware that I focus on the successes in this blog and, in doing so, am guilty of skewing the picture  – giving the impression that all our days are filled with happy interactions and signs of progress. Readers who have children with autism will already know that this is unlikely to be the case. I’ve also come to recognise a strange phenomenon – the more that one trumpets a particular success, the more likely it is to turn round and bite you on the bum. A few days ago I wrote a proud post on Facebook about our successful visit to the shoe shop, during which Henry had waited ten whole minutes to get measured, had submitted calmly to the foot gauge and had only needed minor Haribo bribery to try on two pairs of shoes. The fact that they didn’t have his size in stock was a small irritation: I ordered a pair on the internet to be collected in store and received a text message to say that they were ready to pick up today, Friday.

Fridays have always been difficult since we started home ed. From Mondays to Thursdays Henry has a timetable – child-centred maybe, but a timetable nonetheless. I teach him Mondays and Wednesday mornings, Ellie on Tuesdays and Thursdays, Jackie on Wednesday after lunch. We do home-based activities in the mornings and go out in the afternoons. I wanted Fridays to be different – more spontaneous and flexible ( I can hear parents of autistic children everywhere laughing like drains as they read those two adjectives). Some things would be constant – popping in to the local special school for play time to give him some contact with other children, and a lunch time visit to MacDonalds, but other than that we would look at the weather and decide on the day. I have also to admit that I use Fridays to catch up on jobs that need doing, labeling them ‘life skills’ to make me feel better – posting letters, shopping, returning library books. Collecting shoes…

It doesn’t really work to be honest. More often than not on a Friday afternoon I’m left with a  sense of dissatisfaction, a feeling that Henry hasn’t got enough out of the day. Perhaps it’s because it’s winter: playgrounds are full of cold hard iron; parks grey and mushy. Anywhere offering indoor play is stuffed full of scary two year olds. I have a sneaking suspicion that I’m not much good at spontaneous and flexible either, at least not when it’s below 5 degrees.

So today we went to school, where Henry played happily. The problems started when we drove to town. It took twenty minutes to persuade him out of the car and even longer to coax him the 200 yards to the shoe shop. The queue was eight people long. At that point I should have turned and left, but, Monday’s success still in mind, I tried to join it. The way he lost control was sudden and frightening in its intensity. I’ve spent the last ten minutes typing different descriptions of how he hit and pinched me and am uncomfortable with all of them – it seems disloyal, somehow, to lay it all out in public. But of course that is what happened in Clarks, under the gaze of what seemed like hundreds of tutting women, who only saw a ten year old boy attacking his mother and probably didn’t register the fact that, in between the hitting, he was crying and saying ‘big hugs’.  I persevered and got to the front of the queue, only to be told I should be in the other Clarks shop. The shoe collecting was abandoned.

I can see many possible reasons why this happened, hindsight being a wonderful thing. I hadn’t put ‘shopping’ on the visual timetable. One of my friends suggested that Henry probably didn’t understand why he was going back to the shoe shop, having only been there a few days earlier. I did explain, but it’s pretty obvious that he didn’t grasp the meaning of  ‘collecting shoes’ or any of the five other ways I tried to explain it. There may have been something about the sounds or sights or smells of the shop today that made him anxious. Whatever the reasons, it left me shaken and Henry sobbing. I was in a dilemma about MacDonalds, feeling that taking him straight away would reinforce the behaviour, yet loath to end the morning on such a negative note. Luckily he walked back to the car cooperatively, though still crying, and even said ‘sorry’, so we went to the drive-through and peace, of sorts, was restored with the first chip. I say ‘of sorts’ because he has not been himself for the rest of the day – heavy-eyed and pale, as if exhausted by the ferocity of his emotions.

Next Friday I will do things differently. I will plan and prepare and read the signs of anxiety better. I’m also wondering how Intensive Interaction practitioners deal with meltdowns. All suggestions will be gratefully received.

Getting started

“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.