Tag Archives: anxiety

A birthday to remember

Last year
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This year
Henry's birthday cake

Henry’s birthdays up to now have often been a bit of a non-event. We’ve tried hard to make them special and he’s usually enjoyed himself, but apart from an interest in birthday cake he has never bothered with the things that make the day a Birthday: presents, cards, parties. Yesterday he was 11, and there was a significant change in his attitude. He was interested in his presents and keen to unwrap them, even doing some independently rather than giving up at the first tough piece of sellotape and wandering off. He opened some cards and even (pass the brandy) looked at them!

The very best part of the day though, was his party. We held it at the West Huntspill Miniature Railway, a local organisation run by model railway enthusiasts, who have been driving their steam and electric trains around the Memorial Fields for the past forty years. They’re open to the public on Sunday afternoons, but also hire the railway out for private parties: three hours of unlimited rides for an unlimited number of guests. I was a bit anxious about a three hour party for 14 children, most of whom have special needs, thinking it could be too long, but my fears were unfounded. What I’d forgotten is how much time it takes some of our children, particularly those with autism, to ‘warm up’ to a new environment and activities. For the first hour many of them were cautious, preferring to watch the trains whizzing round rather than venture on themselves. Henry loves trains and has been to this railway twice before, but even he took some convincing. By the end, however, nearly every child had ridden, and for the last fifteen minutes the kindly, calm men who run the show were inundated by children(and their parents) wanting just one more turn around the track. The field was big enough for football, parachute games and, in Henry’s case, endless piggy backs – the fact we had so much space made a huge difference, allowing children to get away from the crowd if they needed and taking away the sensory onslaught that can often make indoor parties overwhelming. And at the end, when the birthday cake was brought over to the station platform, Henry came running over smiling, made a creditable effort to blow out his candles and was delighted rather than cowed by the loud and enthusiastic singing of Happy Birthday. As I watched the faces around us, I realised how lucky Henry is to have this peer group, many of whom he’s known for years and will continue to mix with when he goes back to school next September. And also how lucky we are to have such a wonderful set of parents, friends and helpers, who act as a support for us as much as for him.

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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…

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Intensive Interaction at the Dentist

One of the huge benefits of Intensive Interaction was demonstrated to me this afternoon when we did our six monthly trip to the dentist. Henry attends an access dental centre which specialises in treating people with additional needs, but even though they’re infinitely patient with him, our visits tend to be swift, with the dentist getting a snatched look at his teeth at best. But this time was different. Instead of pacing the room before being coaxed onto the chair, he jumped on straight away and sat there nonchalantly swigging minty water while I talked to the dentist. Instead of assuming his usual rigid half sitting up ‘fight or flight’ position when the chair was raised he lay flat, grinning up at the dentist and her assistant. I knew what was coming. ‘Tickle my tummy’ he said. ‘Be noisy’. And to their credit, they did both. After that, opening his mouth was a doddle. Teeth were seen that haven’t been examined closely for years. I wish I’d had a camera with me, as it was a really joyous occasion – and how often can any of us say that about the dentist?

I’ve written before about how Intensive Interaction has made Henry see all adults as a potential source of entertainment and that was definitely part of what was happening this afternoon. But it has also helped him to trust and to relax. The familiar play routines seem to give him security in potentially stressful situations and he uses them socially, a bit like conversation, to gauge whether an adult is worthy of attention and response. To him, this afternoon, opening his mouth (and, crucially, keeping it open), rather than being an instruction imposed on him by a stranger, was part of the whole business of back and forth interaction.

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.