Tag Archives: home schooling

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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Summer term

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.

Counting

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A huge breakthrough today – after years and years of trying, Henry finally seems to understand the question ‘how many?’ He’s been able to recognise numbers 1-10 for a couple of years, can tell you how many fingers you’re holding up (thanks to all those ducks, frogs, monkeys and green bottles), but has never been able to relate this to actual counting. The concept of numbers, ‘the twoness of two’, just seemed beyond his grasp.

The breakthrough has come courtesy of a kit called Numicon, a system which uses hollow pegs on a baseboard, as shown in the photos above. We did try Numicon a year or so ago, at home and at school, with little success, but this time he has been keen to use it and results have been rapid. We started by getting him to recognise the base shapes 1 to 4, in order and given randomly, then moved on to putting the pegs in the holes, and finally to balancing marbles on the top of the pegs, counting all the time. This morning I tried holding the marbles in the palm of my hand, very close to their matching peg shape – Henry had no trouble saying how many there were, but as he has excellent pattern recognition I still felt that he had possibly learnt the shapes rather than really understanding the numbers, the same way that he’s learnt that a certain pattern of fingers is called ‘eight’, without actually counting them. But tonight before bed I was putting the box of marbles away and had a sudden impulse to see how much he understood. I put first one, then four, then three marbles in my hand and asked him ‘how many marbles?’. He got it right every time.

Of course, there’s no guarantee he will be able to generalise this knowledge. If I put three spoons on the table tomorrow, he may still be unable to tell me how many are there. But it feels like an enormous leap forward and one that I had been thinking he might never make.

A question of age

We had another speech therapy review earlier this week, with two therapists this time, and again it was a very positive experience. Henry was hugely excited at the prospect of having four adults to play with and was throwing all the words and phrases he knows at us to keep it going. The therapists were delighted with his progress and full of useful ideas about how we can capitalise on his increased desire and ability to speak.

One thing that was said brought me up short, however. ” You have to consider,” said one of the therapists, ” whether ‘tickle my tummy’ is an appropriate phrase for Henry to be using with people outside the family. ” She pointed out that this was the very first thing he’d said to them when they entered the room and I had to agree that, at the moment, it does seem to be his greeting of choice. Henry has always been quite discriminating in the way he approaches people, reserving familiar games and routines for those who he sees often, but since we’ve started home education, and in particular Intensive Interaction, he does seem to feel that everyone who visits the house is coming with the express purpose of entertaining him. And when the man who’s come to service the Aga is asked to ‘tickle my tummy’ it’s probably time for a rethink.

So the therapist’s comment has got me musing about the issues that arise when you have, in effect, a three year old in a ten year old’s body. There’s the obvious matter of social appropriateness, but there are other things to consider too. Should we be attempting to ‘age up’ the games we play, the books we read and the songs we sing? At the moment one of Henry’s favourite pastimes is to stick his foot in your face and demand ‘This little piggy went to market’. That’s a SIX WORD PHRASE and even if he’s not quite saying all the words (it comes out as ‘tikka piggy a market’) it’s still one of the longest speech sequences he’s ever been able to produce. Steven Wertz of Growing Minds, who we used to work with when Henry was younger and whom I respect and admire greatly, is a proponent of making the game fit the actual age of the child and I can see his point. Henry is much more likely to make friends of his own age by being able to kick a ball back and forward than by shouting ‘be noisy’ at them, by wanting to listen to Cee-Lo Green rather than CBeebies. And then there’s the thorny question of social rules. Henry has become very demanding of attention, shouting ‘stop stop’ if I’m on the phone or having a conversation with someone else. He wants to play his games over and over again and although he understands the concept of ‘one more, then finished’, he often becomes distressed and angry at the prospect of stopping. In effect, he wants Intensive Interaction much of the time, and while this is great, it doesn’t always work when a friend has come round, outside school hours, wanting coffee and a chat and finds herself coerced into spinning madly in the middle of the sitting room instead. Of course, this demanding of attention is a stage that most typically developing toddlers go through, but whereas I’d be teaching an NT three year old to wait, not to interrupt and to play independently, the desire to interact is something that we welcome, quite literally with open arms, in Henry’s case. Of course I want him to learn social rules but at the same time I’m very keen not to smother his new-found joy at being able to connect with other people. If you ask him to wait he won’t sit and join in the conversation or play on his own nearby – he’ll disappear upstairs with the iPad.

So, it’s a puzzle and one we have to mull over in the next few weeks. Teaching him who he can ask to tickle his tummy is the easy bit. Extending his vocabulary will help too, as he is often using ‘tickle my tummy’ to mean ‘play with me’ in the same way that he uses ‘be noisy’ to mean ‘talk to me’. But how do we teach him that he’s not always the centre of the universe when his II sessions are telling him the opposite?

Talking

We had a visit from a new speech therapist last week. One of the purposes of her visit was to assess Henry for an AAC device (an electronic talker). It’s something we’ve been considering for a while, ever since a friend of mine started blogging about her son’s amazing progress using a device called a Vantage Lite, which uses a system called LAMP (Language Acquisition Through Motor Planning). Even though Henry has some speech, there are a number of  reasons why he might benefit from such a device: it could make his speech clearer to others, help him with word retrieval and possibly also help him to sequence  words into longer phrases and sentences.

Henry was on talkative form that day, grabbing the speech therapist’s hand as soon as she came through the door, pulling her into the sitting room and demanding tickles and ‘fast running’. She was obviously quite surprised, saying at one point that she had ‘ been expecting a non-verbal child ‘ and commenting positively about his intonation, imitation skills and obvious desire to communicate. For someone whose child had been described by one teacher at school as having ‘no functional language’ you can imagine this was music to my ears. Her advice was to delay a decision about an AAC device for six months, as she felt Henry may be on the verge of a ‘language explosion’ ( more music, a full symphony orchestra this time). We agreed that there are barriers that he has to overcome: difficulties with word retrieval, some consonant blends and sequencing (syllables and words) but that the main hurdle of old, his motivation to speak, is gradually being overcome by Intensive Interaction. I’ve written before about how his speech is confined to requests, but II is helping to extend those requests and also seems to be encouraging him to comment. We’ve had many repeats of the descriptive  ‘noisy’ I wrote about a few weeks ago and we now also get a running commentary at meal times – ‘chips….drink….sausage….chips’. When he started doing this we responded with a slightly irritated  ‘yes, look, your chips are there’, assuming that he was requesting as usual, but quickly realised that he was telling us, not asking. We now say ‘ Mmm chips, yummy’ and he repeats ‘yummy’ and carries on tucking in.

The speech therapist gave us some ideas for how to further extend Henry’s vocabulary and length of utterance within his narrow range of interests. Some of it we already knew, but had become lazy about: not letting him get away with using ‘toast’ to mean both toast and bread, insisting on the phrase ‘I want X please’ instead of just running to fulfil his single barked commands. Other ideas we had never used, for example, the use of scripts to accompany favourite games and other requests, the labeling (with a named picture) of items around the house. She advised us to ban questions that demand unmastered vocabulary as much as possible, concentrating on giving choices instead.  ‘Is this a sofa or a chair?’ is much easier to answer than ‘What’s this?’  as the correct word can be picked, rather than dredged up from memory (when his most frequent response was not ‘sofa’ but  ‘so far away’ !) Above all, she affirmed the growing confidence I’ve been feeling about Henry’s verbal potential.  The motivation to speak is now there, and we need to work as hard as possible on giving him the tools and the practice he needs to do it.

The video below shows Ellie working on a number of scripts with Henry, attempting to turn ‘blanket’ into ‘come under the blanket’, ‘ noisy’ into ‘Ellie, be noisy’ and ‘tickle tummy’ into ‘I want you to tickle my tummy’ (we’ve since changed this to ‘ tickle my tummy please’). She does this by modelling the phrase, then giving a prompt. It’s early days, but he’s definitely getting there. Happy Christmas everyone.

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.

An Inspector Calls…

I know that many parents of children with autism will be familiar with the scenario I’m about to describe. You talk to a professional about your child’s abilities or behaviour; they then meet the child who proceeds to act in a way which bears no resemblance to your description. I can’t count the number of times this has happened to us.  I’ve assured speech therapists that Henry is verbal, only to have him fail to utter a single word in their presence. I remember an Early Years specialist who raised her eyebrows in a faintly pitying expression when I told her that he enjoyed playing, then tried rolling a ball to him. He didn’t just ignore her and the ball – it was as if neither of them existed. And on the other hand, I’ve sometimes warned doctors that he is likely to react badly to certain procedures, only to have him hop up onto the couch and lie down, smiling sweetly. I’m not sure if I’d rather be seen as deluded or over-anxious but I know that a scribble in the margin is possible either way.

We had our first visit from the Elective Home Education Officer this afternoon. She wanted me to talk about our programme and how Henry is progressing, which I did, describing how his speech, social and play skills have improved since September. Henry then came in from the garden where he’d been playing with Ellie and – to my enormous surprise – proceeded to demonstrate everything I’d been talking about: interacting with Ellie, requesting things, trying to get my attention by saying ‘Mummy’, asking the EHEO to tickle him and treating her, not like a stranger to be ignored or got rid of as soon as possible, but as an adult who was very probably going to add to his afternoon’s entertainment. She was charmed and pronounced herself ‘more than satisfied’ with the way things are going.

Now for speech therapy on Thursday…