Tag Archives: sensory overload

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

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.

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.

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.

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.