Mindful Bed Changing

I watched a brilliant video this morning called ‘Communication for Mindfulness’, (thank you Think Autism) which was a timely reminder of some valuable communication tools when guiding.

  1. Slow down and step back. Pause, wait up to 45 seconds – an eternity! – for Ellen to process and respond.
  2. Use declarative language over instructional language as much as possible.
  3. Swap direct prompts for indirect prompts.

We’ve been changing Ellen’s bed with her for several months, slowly trying to withdraw so that she takes on more of the task herself. This morning, spurred on by the video’s depiction of best practice I decided to give it a go. Ellen was deeply engrossed in a Brum video.

‘Easy Peasy’

I start in a bright voice:

I’m going to get the sheets out so we can change the bed!’

There is an interlude of around 2 minutes

‘I’m ready now to change the bed!’

An interlude of 10 minutes follows, during which I put clean sheets on my own bed, tidied up the coffee mugs and rescued a cricket from the bathroom floor.

‘I really need some help changing this bed!’

Finally I hear Ellen sighing heavily and stomping up the stairs.

After she’d finally given in to my increasingly jolly ‘statements’ from the landing, Ellen got on with the job in hand. She shook her pillow out of the pillowcase and stripped the duvet. Taking off the bottom sheet falls to me because Ellen has around one hundred soft toys on her bed, which she hates being disrupted. It’s obvious they all have a particular place, and she very carefully returns them to order once the weekly ordeal is over.

Building resilience with the pesky buttons

Ellen put her new pillowcase on and helped with the duvet. All the time I tried to talk as little as possible and used non-verbal language or statements rather than direct instructions.

Ellen finds buttons very difficult, but we worked on these together in companionable silence, I held the buttonhole open so that she could put the button in half way and then I held it in place so she could readjust her grip and pull the button through.

We put the duvet on the bed, the correct way up and then faced the depressing task of slinging all the soft toys back on top. I wondered suddenly whether declarative language could work miracles with the toy mountain. I picked up a small floppy tiger, moving its head with my fingers.

‘I’d like to sit on the shelf’

This time it took only about one second for Ellen to respond, No! she said, grabbing the tiger from me and slinging it onto the bed.

‘The bed’s too crowded for me‘. I said, trying again with a blue penguin.

The penguin flew onto the bed. It wasn’t even a second this time.

The toy mountain

The mountain remains.


Engaging with the National Trust


The mood lifting slightly – in Ascott House grounds

It was my Birthday last week, which made Ellen extremely grumpy.  She is very fond of her own Birthday and buying presents for other people but she has no interest whatsoever in celebrating anyone else’s day.  My ‘Good morning, it’s my Birthday!’ received the predictable response of  ‘get out!’

We took a trip to one of our local National Trust houses to walk off lunch and try and improve her mood.  Ellen is usually a big fan of visiting such places, I think I’ve mentioned before how much she enjoys telling us which chairs you can and can’t sit on (mostly with NT it’s ‘can’t’ but their various ways of depicting this fascinates Ellen).

It didn’t start well as Ellen refused to get out of the car.  We then realised that her ‘carer card’ had expired, but luckily it was a quiet day and after explanation the staff let us take in a carer (her sister) but we were informed we needed to phone up for another carer card as soon as possible.  Boringly, for Ellen, almost all the chairs at Ascott House can be sat on, there was no quiz and I got told off for taking photos.  Richard took a work phone call and paced around outside for a while before making the fatal mistake of talking to one of the NT volunteers and becoming gripped – Ellen and I decided to make a swift exit and explore the grounds.

It was at least a beautiful day and one of the horses obligingly did a huge wee right in front of us, which cheered Ellen up immensely and she even let me take a photo of her.

A few days later I phoned the NT to get Ellen’s new carer card.  It’s a very strange system they have for disabled members.  They send a new membership card on renewal, but to enter with a carer requires an additional, rather flimsy card, which needs renewing every year, but which is not sent out automatically.

‘I explained what I wanted.

‘Can we speak to Ellen?’ the advisor asked.

‘No, a) she’s not here and b) she doesn’t talk on the phone.’ I replied.

‘Ah’ a pause.  ‘It’s a matter of data protection you see’ the man continued.

I take a deep breath.  ‘Look’, I say, ‘she has autism and learning difficulties and she doesn’t talk on the phone, and even if she did, she’d just say “yes” or “go way” to everything you ask.’

To his credit, after disappearing for several minutes to consult with his manager, the man ‘did things another way’ and eventually said the card would be dispatched in 14 days.

‘It’s not a very good system, is it?’  I suggested.

‘I can pass your comments on to the appropriate team’ he replied.

I had the terrible deja vu sense of a black hole opening up before me.

‘That would be lovely’ I exclaimed, after all, the post-birthday glow had not completely left me.  ‘Speak to you again next year!’



Scribblings of difference

We visit Tring Museum quite a lot.  It’s hard to answer the welcoming ‘have you been here before?’ in a neutral tone.  Oh yes, we’ve been here before and we have a very set routine.

First phase – visit the gift shop.  Unfortunately Ellen is very keen on the display of plastic animals that they sell there and today she bought the white tiger.

‘Oh you must have quite a collection of these at home’ says the sales assistant, presumably recognising us from our previous excursions.

‘We’ve got elephant, orange tiger, lion, rhino, giraffe, zebra and hippo…’ chants Ellen.

‘We must get a few more in then and stock up’ smiles the sales assitant.

‘Please don’t’ I reply, thinking of the groaning shelves back at home.

Second phase.  A very slow and detailed walk around the galleries, with Ellen pointing out all the creatures of interest to her new purchase, in this case, white tiger.

But today I’m going to disrupt this routine and throw a curve ball into Ellen’s familiar pattern.  In RDI speak this is called ‘same but different’.  We’re doing the same thing that we normally do, but changing it ever so slightly.  The aim is to slowly build Ellen’s resilliance and help her cope more easily with the inevitable fluctuations of daily living.

So, ‘Let’s draw our favourite animal’ I say.

‘I don’t think so’ replies Ellen in a sing-song voice, deep in conversation with her white tiger about his friend orange tiger.

Undeterred I set up the stools by the tigers, get out the paper and pencils and I wait.  This is the beauty of RDI.  I have learned that simply waiting is a powerful tool.  After only a few seconds and without any further argument, Ellen comes and sits down.  After a little bit of time positioning white tiger, Ellen gets to work drawing the orange tiger.  I am instructed to draw the Jaguar, which I can only half see due to the glass partitioning.  It is the experience not the end result, I chant internally, flushing when passing visitors curiously peer over my shoulder to look and then veer away as if physically repelled by my amateurish scribblings.IMG_5226[1]

This is Ellen’s drawing (I’m afraid ‘Jaguar with partition’ is not on display at this moment in time).



I know I’m biased, but I love it.


Making friends with a skeleton

We had a letter from our local doctor’s surgery a few months ago, inviting Ellen for an ‘annual health check’.  I read this letter with a mixture of surprise, pleasure and absolute dread.

Surprise, because it seemed to me that for once, the NHS was being proactive.  Ellen hasn’t been to the doctors for about ten years, but I was fully expecting another ten if not more before an invitation such as this arrived on the doormat.

Pleasure, because I was aware that this would be a perfect opportunity for Ellen to experience going to the doctors without the added pressure of actually being unwell.  In my mind’s eye I could see all the social story preparations preparations and the experience sharing afterwards which would be so beneficial to Ellen’s RDI journey.

The dread was because, as anyone who cares for someone with special needs will know, they can be somewhat unpredictable.  The last time I remember being in the doctors surgery, she took some I’ve been to the doctor stickers off his desk and stuck them on a photograph of his two daughters.  Right over their faces.  Yup.


Ellen checking in

But he’ll have forgotten about that – hopefully – and despite answering every question he asked her with ‘car‘, Ellen submitted to the examination pretty well.  By pretty well I mean that he managed to listen to her heart and lungs and examine a small cyst she has under her eye.  She point-blank refused to have her blood pressure taken (even over her jumper) and bent forward, covering her arms over her stomach when he asked whether he could examine it – fantastic non-verbal communication!

Her refusals weren’t helped by his poor choice of expressive language.  Doctors will (despite prior briefing) insist on beginning every sentance with ‘would you mind if I...? Which obviously gives truculent patients the perfect opportunity to answer ‘no‘ at every turn, thus immediately stymying the doctor.  Much better to open with ‘Now I’m going to.….’ but they never do, it’s obviously not in the training.

Still, I think it was a pretty successful visit.  Ellen particularly enjoyed putting a Santa hat on the model skeleton and putting it in different poses, and as there were no stickers in sight, the rest of the office remained unmolested.  This time anyway.


Happy Christmas !



Jewellery Making

Ellen was lucky enough to be given some great craft sets for Christmas and no doubt we’ll be working our way through them all over the upcoming weeks and months.  Given the choice of which to start with, she rather surprisingly chose her new jewellery making kit.  Surprising because of everything she received, this looked the most challenging.

I soon found out why she chose it though, as the projects leaflet inside the box contained pictures of tiger and zebra earrings and pendants.  Without hesitation, Ellen chose to make the zebra necklace.

This involved rolling out thin pieces of alternate black and white clay, sprinkling them with water and then pressing them together firmly by rolling a cup over the top.  It was a great activity for our current RDI objective, because there were bits that she found really difficult, like moulding the hard clay between her fingers to soften it up, but also bits that she found much easier – like rolling the clay into long sausages.  I was therefore able to use my ‘easy’ ‘a bit tricky’ and ‘difficult’ prompts fairly evenly thoughout.

Ellen has sensory issues surrounding her fingers and didn’t like the feel of the clay, so she tried using a pair of gloves initially, but when these proved too cumbersome she took them off.  I found this quite encouraging as it seemed like her desire to make the jewellery was stronger than her sensory issues.


Ellen making a hole in the zebra clay

After rolling with the cup, we then had to cut out two shapes, one 2p-sized and the other 1p-sized, before making holes for the thread and then putting the pieces in the oven to bake.

I have to continually remind myself not to step in and over-compensate for Ellen, it’s very difficult not to try and improve things and make them perfect.  This is Ellen’s necklace and it needs to look like her necklace!


The clay’s ready for the oven!

The second half of the production process was much trickier, in fact it almost defeated me.  Our RDI advisor had asked me ‘what does Ellen do when she find things overwhelming?’, well the answer is she tries to walk off and leave me to it!  Getting the pendant threaded was fine but trying to fix the clasp to the end was almost impossible with the result that I pretty much took over.  Looking back what I probably should have done was abandon the instructions and instead had a discussion with Ellen about an easier way to finish off – i.e. just tie a knot in the flippin thing!  However, we perservered and it did give me the opportunity, many times, to say how difficult this bit was, but even so how we managed get it done in the end and I think you’ll agree it does very much look like Ellen’s own work!


Me modelling the finished product!

When we’d finished, we trekked off to McDonalds for Ellen’s weekly fix of a plain cheesburger and large fries.  One downside of her increased confidence in doing her own ordering is that she’s started adding some ‘unexpected items’, like today’s chocolate muffin.  Very happy with her illicit purchase, she laid out the cheeseburger, muffin and chips in that order on her lap in the car and proceded to eat them together as one meal – yuck!


Thank you from Jackpot Heffalump

Like most parents, once the Christmas rush is over and I have hoovered the last pine needle from the carpet, the last remaining festive task is to organise the kids to write their thank-you letters.  I heard someone on the radio recently saying that if children write regularly every year, by the time they are 17 it will have become a habit and you can send them off into the adult world, your etiquette coaching complete.

Not in this house.  My 16 year old daughter has evolved in a world of social media and emojis and finds expressing thanks through the written word totally alien.  Ellen, who is now  19 (19!) struggles with not only formulating the proper sentances but also with the motor skills required to write on a large scale.


So, this year I tried something different.  I typed up several versions of ‘thank you’ sentences, some complete, some with the endings missing and some with nothing at all except ‘To’ or ‘Dear’.  I laid these out on the table with a selection of cards, different coloured pens, glue and a pair of scissors.

Planning this as an RDI activity, with the focus being on Easy vs Challenging vs Overwhelmed, I tried to provide a range of options which would give Ellen the chance to experience all three.

Whether because of the planning or still being on a high after the Christmas and Birthday season, Ellen was in a super mood and took to this activity with gusto.  It was interesting to see that initially she chose the cut-outs with the most complete sentances with the trickiest part being inserting the card into the envelope.  By the end of the session however, she was doing more and more writing, and even wrote the last card without any cut-out at all – impressive.  But Ellen being Ellen, her sense of humour began to take over and cards were being personalised in a rather unique way…notice anything unusual about the one below…?


Beverley gets thanked by Hide and Seek woozle

Yes… Ellen thought it was hilarious to take on various heffalump and woozle personas to sign off the cards – a different one every time.   Luckily all the receipients are well aware of Ellen’s penchant for disguise and I’m sure will take this all in their stride.

Happy New Year to one and all!


Well, that was easy!


Hide and Seek – in the pool


Our post-swimming hair dos

Our post-swimming hair dos

I don’t know why it’s only just occurred to me – seven months in – that one of the activities Ellen and I could do on a Wednesday is to go swimming.  Let’s face it it’s cheap (£2.70 including car parking), gives my couch-potato daugher some much needed exercise and going during the week in term time the place is practically empty.

We went to AquaVale in Aylesbury http://www.everyoneactive.com/tabid/1840/default.aspx  which has a great leasure pool split into four sections and includes a lazy river and lots of whirlpools, mini slides and jets.  An added bonus is it’s shallow all the way round.  Although Ellen can swim, she’s not a strong swimmer as despite many many hours of lessons she preferred to develop a technique all of her own.  In fact surprisingly she’s much better swimming under water than she is on top of it and loves pretending to be a dolphin.  I have to be a starfish, which is not that difficult as it involves lying on my back relaxing in the water.

Still working on coordination, swimming provided lots of opportunities to work together from getting changed to shampooing our hair at the end.  We put our goggles on and went underwater together and swam across the pool a few times (Ellen naturally won every time).  She wasn’t keen to jump in at the same time as me, we stood together on the edge of the pool but then she gestured for me to jump in first – which I did – feeling that this was something we could work on in the future.

The game Ellen loves to play in the pool though is hide and seek.  This can be a bit of a nightmare, especially if the pool is busy.  It wasn’t today, but for a while I couldn’t see how I could get any of my RDI objectives covered, until I realised what great motivation the game was for her.  Every time I found her I would say ‘let’s float together’ or ‘let’s jump in together’ before we hide again – and she did!  One round however, I was struggling to find her.  The lifeguard caught my eye ‘are you looking for the girl with the errr….’ ‘very bling costume?’ I replied (her costume is not-so-subtly covered in sparkly tigers).  He grinned back and nodded ‘she went that way’ he said pointing to the changing rooms and lo and behold I found her in the toilet!  After that we had a rule that the hiding had to be in the actual water and the friendly lifeguard was very helpful in pointing me in the right direction so there were no more mishaps.    To my astonishment, after she had hidden a few times Ellen said to me ‘now it’s your turn to hide’ and I was given a turn 🙂 something which has never happened before.  It felt like we were really playing the game together and Ellen had a great time, and so did I.

Another nice point from today was that Ellen was given an apron to wear when she works in the shop, just like all the other volunteers.  She wasn’t that keen to put it on at first, but I explained that it was part of her uniform and she could take it off when she had finished her work and she obliged.  I thought she looked very smart.

Ellen in her Volunteer's apron

Ellen in her Volunteer’s apron


Stroppy Strawberry Planting

Imagine that you are in a garden centre and you see a woman struggling to load a bag of bark chips onto her trolley whilst said trolley keeps moving away from her and her daughter (who had briefly been holding one end of the bag) looks on gigging. Is your expression one of bemused-amusement? I expect so, as that was what I saw on the face of the man who stood a few metres away, before he kindly stepped in and helped me get the bag safely stowed. Yes, welcome to coordination Ellen-style!

Today’s activity centred around planting up a tub of strawberry plants. Ellen loves strawberries, in fact they are one of the few fruits she will actually eat so I thought I was on to a winner. The idea was to visit the garden centre to actually buy the plants, soil and bark and then in the afternoon do the planting. I had a whole list of ideas for how we could coordinate throughout the task, from silly walking into the garden centre (who cares about a few stares…) to picking the plants, carrying the heavy bags of soil (ahem) all the way to the actual planting where we could make coordination fun with changing the ways we put the soil into the pot – sprinkling, chucking – you get the idea.

I knew it was a mistake to split the task over lunch. Ellen’s always more cooperative before the trip to McDonalds, but what with our weekly stint at the shop and a trip to Tescos to fit in, there was no way to avoid the dreaded afternoon shift – made worse by the fact that it started to rain.

I was right to dread it. Having done some lovely moments of coordination at the garden centre, including indulging me with my funny arm-swinging walk (we’ll forget about the ‘too heavy’ ‘too wet’ bag moment) when it came to the actual planting of the tub Ellen did not want to know. She had had her McDonalds and was an hour into the Little Mermaid. But if there is a golden rule of RDI it is ‘never give in’ and I didn’t – although as you can see from the photo – she was NOT amused!

Ellen is not amused

Ellen is not amused

I think my personal highlight was the moment when I was waiting expectantly with my trowel full of soil for Ellen to come and mirror what I was doing, but instead of getting the soil, she used her trowel to knock the soil off mine – unfortunately for her, the plan backfired somewhat as the soil went all over her trousers, I tried not to laugh…

On a positive note, today Ellen did the best McDonalds ordering ever. I didn’t overcompensate or interfere at all and the server understood her first time and got her order correct. She even got me a cappuccino :-). Here’s hoping that over the next few weeks I manage similar progress with the latest challenge.

So, as it would have been Shakespeare’s 450th Birthday today it seems apt to end with an appropriate quote from Hamlet, “We know what we are, but not what we may be.”


I-Phone? – Nah, I’d rather have a soft toy thanks…

It was Ellen’s birthday at the beginning of January and we gave her my old I-phone as a present – she was distinctly unimpressed.  Despite its ‘rainbow’ case, it was tossed aside as if it were a set of old spanners.  Her favourite present was a toy elephant from the Disney store, who accompanied Ellen everywhere for the day. The I-phone remained abandoned on the sofa until I rescued it in the evening. We had to laugh, Ellen is not a typical teenager.

Now before you throw your hands up in the air at our foolishness, there was some logic behind the gift.  We have been trying for a few years to get Ellen to use a mobile phone.  First of all we bought one of those big-buttoned analogue jobs, designed for the elderly.  Although the big buttons suited her, the phone itself was too difficult for her to navigate.

Fast forward three years and as she uses her I-pad daily, getting her the I-phone seemed the obvious step.  Not only is the screen more visual, but it has games and a Find My Friends App.  If she does one of her disappearing acts when she’s out and about I can track now her with the GPS (all very James Bond!)  So we’re slowly easing the I-phone into our trips.  So far she’s taken it on two weekend trips out with her carers and has texted me when she needs picking up – with minimal assistance apparently.  It’s slow but steady progress.

Today we had a shopping trip.  Ellen had some Birthday money and a New Look voucher to spend and she was very keen to visit HMV to buy a ‘new Bambi’ and a ‘new Finding Nemo’ DVD.  I helped her pack her leopard print handbag with her money, vouchers and of course the I-phone.

The shopping trip was very successful.  Ellen found her DVDs and didn’t have a melt-down when she had to put a third one back as it took her over her budget.  She got her money out of her purse and took her change.  In New Look, Ellen browsed the racks with half an eye on her new DVDs and other other half on the lookout for any leopard print items.  Ellen isn’t exactly a fashionista, but she knows what she likes.  Leggings, hoodies and animal print are her top choices, but she’s not always terribly discriminating.  She did conceded that the animal print mini-dress which she had first picked up admiringly wasn’t something she would actually want to wear – and so put it back, before quickly finding a pair of leggings which she liked and were the right price.

Ellen with her purchases

Ellen with her purchases

Before we had arrived at the shopping centre, Ellen had said she wanted to go to Giraffe for lunch.  I had actually started picturing myself eating one of their amazing vegetarian salad concoctions, before I was abruptly brought back to reality with a bump.  ‘Actually’ she said ‘I want to go to McDonalds’.  I lifted my sinking spirit with the thought that we would at least have the chance for Ellen to practise ordering again.  Sadly I wasn’t so great with my own I-Phone and failed to record the exchange, so you will have to take my word for it that it went much better than last week; due mainly to the fact that, despite it being much busier, we had a server with communication skills and common sense and Ellen spoke up much louder – yay!


Ellen with her favourite lunch - note I managed to get a sandwich from Pret!

Ellen with her favourite lunch – note I managed to get a sandwich from Pret!

Over lunch I suggested that Ellen could send a text to her sister (who was off sick at home with a heavy cold).  I leaned over the table and showed her what to press to open a new message and how to select the right recipient and then I left her to it.

A few seconds later, my own phone buzzed.  I had a text message from Daisy. ‘So are you coming home now?’ she asked.  I was puzzled.  We still had quite a few shops to visit.

‘Ellen’ I asked – ‘what did you put in your text to Daisy?’  She wasn’t willing to get her phone back out of the bag where it had been slung as soon as she had completed her chore.  After some coaxing I managed to get her to show me the message.

‘I come in minute daisy’ it said.

I laughed.  ‘Ellen we’re not going home yet’ I said.

‘I know Mum’ she replied, smirking into her chips.



New Year – New Goals and Presents!

My new RDI goal for the next two weeks or so is to “become aware of and eliminate any unconscious ways that you…have been assuming too much communicative responsibility for the student”.  I do this all the time.  I started talking for Ellen when she was smaller because her speaking voice wasn’t very clear and people found her difficult to understand.  Now however, it’s become a bad habit and Ellen often looks at me to talk for her and I do it without even thinking.  This is a biggy.  Ellen’s speaking voice is much clearer now and she understands so much more herself – so why do I continue to do it?  As well as habit I also think I often speak for her out of embarrassment for myself and for other people.  What if Ellen ignores them?  Takes too long to answer?  My new resolution is to think – so what?

I had two activities today to test this out on.  Firstly, we were back on shop duty after a couple of weeks off, where Ellen needs to occasionally interact with other shop volunteers.  Secondly Ellen was going to be ordering her own McDonalds at the inevitable lunch-time pit-stop.

At the shop all the talk was of the flooding which occurred in the village the day before.  For five hours a group of local residents used brooms to sweep the huge swathes of water away from the houses until the fire brigade arrived.  Naturally everyone wanted to talk about this – everyone of course except Ellen – who has now got into a routine of finding items to put on the shelves and went through the task mechanically.  As far as competent shelf-stacking goes, it was a successful activity, but it didn’t require any communication on her part at all.  To top it off I prompted her to say goodbye as we left!

McDonalds was far more successful, mainly due to the fact that Ellen has far more motivation – she has to talk else she doesn’t get her food!  Instead of videoing the interaction (I’m not quite thick-skinned enough for that!), I attempted for the first time to use the ‘voice record’ function on my iphone.  Ellen placed her order correctly if a little quietly and quickly.  The server woman checked every item with Ellen and she nodded.  On the voice record I can be heard saying ‘yep’ after each item (probably wasn’t necessary).  ‘Do you want ketchup?’ the woman asked.  I repeated the question to Ellen and she replied ‘no’.  ‘Eat in or takeaway?’ was the next question.  ‘Takeaway’ Ellen replied, a little too quietly, the woman didn’t hear so I repeated it. (smack wrist).  Ellen wasn’t interested in finding the right money, as by this time her attention had been grabbed by the fact that one of the bottles of water was slightly squashed in at the top.  ‘It’s not right’ she said looking at it quizzically.  Still plenty to work on from my point of view!

Last port of call was the garden centre, where Ellen’s task was to pick a present for Grandad’s birthday.  Her budget was £10 and it took quite a bit of browsing for her to find the right item (a massive jigsaw of a train and an indoor watering can had to be returned to the shelves as they were over budget).  Luckily they had a massive sale on so she managed to get something quite substantial for her money – I’m sure Grandad will be thrilled!

Present wrapping

Present wrapping

Ellen helped wrap and label the present and then we put it safely out of the way so the dog didn’t tread on it.  Wouldn’t want it to get ruined….