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!’



Stand up for Chair Yoga

A rare moment of actually sitting on the chair

Ellen and I tried something new today, ‘chair yoga’.  It does exactly what it says on the tin, there’s a chair and you sit on it whilst performing modified yoga poses.  The session was run by our local Mencap group and I thought it would be a winner with Ellen as it combines two things she loves doing – sitting down and posing.

It was a relaxed class, and the teacher was open to the idea of her students attempting the full pose, or a simplified version or even just watching if they didn’t feel like joining in.  I’m not sure, however, that she was prepared for Ellen standing during most of the class, nor the fact that when she was told to rotate her feet, Ellen rotated her hands and then continued to do the opposite of what she was supposed to be doing.  Every time she caught my eye, she whispered ‘Tesco’ at me, the thought of the post-exercise dolly mixtures obviously forefront in her mind.

The hour went quickly though as we became ‘waving trees’ saying hello to each other and performed a singing chant (Ellen didn’t sing, but did follow the actions).  The class ended with a meditation, where we sat in staff pose (which basically meant sitting on the chair), closed our eyes and tried to put ourselves into the moonlit infinity pool which was being described in great detail by the instructor.  It did indeed take quite a lot of concentration to try and block out the couple at the table behind us rustling their crisp packets and the group in the anti-chamber having a heated discussion about whether or not a certain number had been called out in the bingo.

Perhaps the best line of all however was delivered by Beatrice, a vocal young woman who had sat at the front of the class, not participating physically, but keeping up a verbal flow throughout the hour; ‘I don’t want to do that’, ‘that hurts my leg’ ‘why are we doing this?’ or ‘I’m putting my shoes back on’. Her carer had long since given up asking her to keep quiet and the instructor had also abandoned the attempt to actually answer the questions and simply carried on through the heckling.  ‘You’re a great teacher’ Beatrice declared as the class came to an end, and the unexpectedness of her approbation made us all laugh.

Yoga is indeed, for everyone.


Freezing in Berkhamsted Castle


Yup we’re the only ones here!

It’s half-term, so naturally that means it’s freezing cold and the rain is only dissipated by high wind or sleet.

Berkhamsted Castle is the sort of place you drive past at least once a week but never actually go into.  It’s an English Heritage site, but all you can see from the road are a few walls and the odd train whistling by.  Ellen loves visiting National Trust houses (as mentioned in other posts) and whilst I realised that the Castle would be not quite so familiar i.e no roof and no chairs, I thought that it would be a good opportunity for us to share a ‘same but different’ experience.

This is a great place to visit with an energetic autistic person, as there’s lots of space to run and steps to climb, and although there’s not a lot of structure left, it’s an interesting and atmospheric site.

Ellen, however, is not an energetic autistic person and was in a bad mood from the very start.  She wouldn’t wear her hat or do up her coat and the constant cold wet drizzle must have been unpleasant but she was obviously determined not to give in to it or to give me any more than one-word feedback to all my experience-sharing prompts.

Me: ‘Oh look we’re the only ones here!’
Ellen: ‘Car’

Me: ‘You know this Castle used to be owned by someone called Richard’
Ellen: ‘Car!’

Me: ‘Ooh look we can be King of the Castle and climb up to the Keep’
Ellen: ‘Car!!’

IMG_7159 2

Where’s Ellen?

Not to be put off, I climbed up to the Keep in the vague hope that Ellen might follow.  I must admit my heart did slightly jump into my throat when I turned round to survey my Kingdom and could see no sign of Ellen.  Then I saw a flash of movement behind the central piece of remaining wall – ‘ah ha’ I thought ‘she’s playing hide and seek’.  I crept down the stairs and jumped theatrically around the corner shouting ‘Boo!’, but Ellen wasn’t there, she was already hot-footing it back to the entrance still shouting ‘Car!’

Grateful that the place was indeed deserted, I caught her up.  She almost cracked a smile when I exclaimed that I thought I’d lost her, but powered ahead once she realised that we could finally finish at the Castle and head into town in search of shops and food.  Her mood didn’t lighten though and in the car on the way home I commented that she had been ‘rather grumpy’.  But it wasn’t the weather, or the Castle or the fact that we went to the ‘wrong’ supermarket that was responsible.  According to Ellen, she was grumpy because she had been denied a McDonalds.

So, English Heritage, if you’re reading, perhaps you could kindly allow a McDonalds franchise to open up on-site, there’s lots of empty gaps and I’m sure it wouldn’t detract at all from the atmosphere of the place!




New Year goals


Ellen loving the shrouded fountain

I’ve had to alter the strapline of my blog since Ellen’s latest birthday; no longer do I have a teenage daughter – Ellen is now twenty!

This milestone has been a timely reminder to work on my overcompensation:

why am I still brushing Ellen’s hair for her?

why am I putting her gloves on?

Why am I still shampooing her hair?

Why am I still making her breakfast?

Well because otherwise she’d go out with hair like a haystack, freezing cold hands, greasy hair and an empty stomach and we’d be two hours late for everything. But really that’s no excuse, we’ve got to start somewhere, so today she was a haystack with freezing hands.

We’re also trying to work on the concept of ‘something different‘.  This can be as small as sitting in a different chair at mealtimes, ordering a different drink from McDonalds (me obviously, not Ellen who is still firmly wedded to plain cheeseburger, large fries and a bottle of water) or choosing a different activity.

On a Sunday, Ellen always wants to either go shopping or go to the zoo, but this week we suggested to Ellen that perhaps we could do ‘something different‘.  I’m hoping that in the future, she’ll come up with her own ideas, but for now she relies on me and from the paltry selection I could come up with she chose to go and ‘look around a big house’ i.e our nearest National Trust property – Waddesdon Manor.

What I hadn’t anticipated was that the house would be closed for the winter and all the statues covered in protective wadding like something out of a gothic novel.  And it was absolutely freezing!  But, we made a plan. Lunch in the cafe (far too cold to sit outside, even with the hygge-inspired fur-lined chairs), a walk around the outside of the house, Ellen to take a photograph of something she liked and then back on the bus to the car park.

Ellen coped really well with the dynamic situation she faced in the cafe.  It was busy and the cafe was understaffed, so we had to queue quite a long time for a table.  When we finally sat down and saw the menu, the sausages came with mash not chips and her food arrived with  gravy on it (a massive no-no) and had to go back.  Ellen, however coped remarkably well with all this difference, I think she was just glad to be out of the cold and next to a radiator.  She then wanted a slice of chocolate cake for pudding (another familiar choice) but there was no such option on the menu, the ‘amazing’ cake she hopefully pointed at turned out to be a fruit cake (yuck!) so rather than have nothing, she opted for a chocolate brownie.  The texture was rather different to what she’s used to and so I had the opportunity to model how to use the side of her fork to slice little sections off, and she quickly got the hang of it.  The brownie was incredibly rich and sadly she couldn’t finish it all, so I had to step in and help out ;-).

Food/sugar gave Ellen a spring in her step and she skipped up the steep path towards the house before taking photos of things she thought were interesting, surprisingly good I think!



All three taken by Ellen

On the bus back we talked about returning another day when the house is open. Meanwhile over the next week, I’ll have to put together a list of ‘different Sunday’ activities that are indoors, in order to avoid shopping and the zoo for a bit longer and not freeze to death in the process.


Holidaying in Norfolk

There’s been a piece in the news this week (BBC News) about how ‘super-parenting improves children’s autism’ and this is cheering news for those of us who have been working with our kids in an RDI-manner for a while (RDI Explained).  Of course it isn’t ‘super’ parenting at all, it’s about learning the skills to guide your child, and of course how to spark an interest so that they are willing to be guided in the first place!


Ellen with a well deserved post-walk treat

We’ve been on holiday in Norfolk this week, just the three of us.  This has given us the perfect opportunity to have an Ellen and RDI-focused time, and we had a list of ideas from our RDI consultant of how to use this time to the full; lots of guiding, experience sharing language and slowing everything down.

RDI isn’t difficult, but finding the time in a busy week to plan activities, let alone carry them out can be a problem, so having a whole week with no distractions has been a luxury.  Don’t get me wrong, we haven’t been ‘on-it’ 24/7, there’s been plenty of time for relaxation for us too – I even bought a candle to increase our evening ‘hyggeligt’ (for those of you who have missed it in the news recently, this is a somewhat elusive Danish concept which roughly translates as cosiness).

As usual, Ellen has surprised me.  For someone who is a confirmed couch-potato she has undertaken long dog walks every day without complaint.  For the first few days she insisted on carrying her Toy Story and Lion King box sets around with her, but latterly she has agreed to leave them in the car – progress.  Rich and I have have plenty of time for experience sharing conversations about acorns, odd-shaped trees and the beautiful autumnal colours.  Nature has helped out too; Ellen loved it when I had two money-spiders in my hair and didn’t love it quite so much when a ladybird landed on her nose and refused to shift, but it gave us plenty to talk about.


Setting off on a walk around Felbrigg Hall

We have learned how much Ellen loves eating out at pubs and cafes, particularly if they serve sausages or chips.  When given the choice of having breakfast at home or at the cafe – she chose the cafe – a surprising choice! North Norfolk also appears to be a McDonalds-free zone (yay), and Ellen has coped well with this unwelcome news (although we are on a promise to stop at the golden arches on the way home). Another unexpected bonus is that a lot of the fish and chip shops around here will also cook with a gluten free batter if it’s requested,


Enjoying fish and chips in Cromer

Ellen also seems to enjoy looking around ruined castles and stately homes, which is lucky as it’s also one of my favourite things to do.  While I’m looking up at the portraits and the ceilings though, Ellen’s focus is on the chairs.  For those of you who’ve not visited stately homes recently, they either put pinecones or a sign saying ‘Too fragile to be sat on’ on the majority of chairs, but there’s usually the odd modern chair dotted around which can be sat on.  Ellen checks every chair, flings aside anything which might be covering the important signs and sits with great delight on every chair that she can.

It seems that everywhere we’ve been, we spotted others on the spectrum, also getting out and about and enjoying themselves (a group of young men with Aspergers were having the time of their life trying to work out the maze at Priory Maze and Gardens).


It hasn’t all been plain sailing.  Ellen was very upset on day one as she’d left her Toy Story box set at home, so our first morning of the holiday was spent ninja – raiding HMV in Norwich for another copy.  Once she had this though, it seemed she could cope much better with the dynamism of a holiday.

This has been one of the most relaxing and enjoyable holidays we’ve ever had with Ellen and I don’t think it’s a coincidence that as her feelings of competence have grown, so her anxiety about the world has decreased along with her stress levels.  This has a knock-on effect on what we are able to do and enjoy with her, which means she and other people with autism are more visible in society and hopefully more accepted.

Now the challenge is to keep the vibe going when we’re back to work and college next week!



Making unexpected choices

My RDI activity at the moment is to try and encourage Ellen to make surprising, rather than predictable choices.  Of course this is quite a biggy for someone with autism, who finds reassurance in the familiar.


Ellen powering off to the cafe

We were on a bit of a loser from the start when Ellen chose to visit Whipsnade Zoo, one of her favourite haunts.  An early surprise was to arrive and find the place invaded by cubs (and not the furry kind).  The scout movement is celebrating its 100th birthday, so celebrations around the country for them and sidestepping around excitable groups of seven-year-olds for us.

Ellen has a very set agenda when visiting the zoo:-

(a) Go to the gift shop to purchase an overpriced toy animal to look around the zoo with her.   The lady behind the till greets us like old friends and doesn’t require us to get our membership card out any more.  If we are lucky, we can leave without Ellen trying to buy ‘a friend’ as well.

(b) Visit the bug centre (despite the fact that it is closing and slowly being emptied of all bugs).

(c) Bypass the bird show (should it be on).  Today it was full of cubs which meant that my efforts to change her mind on this choice were minimal.

(d) Walk on via the underwater Sealion viewing area and hang around hopefully near the cafeteria hoping that it’s time for lunch (it wasn’t).

(e) Hopes dashed, either visit tigers and elephants or giraffes and zebras (today was option 2).

(f) Decide that lunch must be on the cards by now and walk as fast as she possibly can back to the cafe, leaving me trailing in her wake.  All attempts at experience sharing; ‘ooh the flamingos are out’ and ‘is that an ostrich or an emu?’ studiously ignored.

(g) Once inside the cafe, order sausage and chips (additional vegetables are frowned upon), a strawberry flavoured drink and a slab of chocolate cake.

(h) Go home.

My attempts to get Ellen to choose something surprising went like this –

Me: ‘mashed potato or chips?’
Ellen: ‘chips’.
Me: ‘Fish cakes or sausages’
Ellen: ‘sausages’
Me: ‘pizza or sausages’
Ellen: ‘she said sausages!’


That was an easy choice!

In fact the only surprising choice of the day was made by one of the giraffes, who decided he was thirsty and rather than drink water, chose instead to take a gulp from another giraffe’s stream of urine.

Ellen of course, thoroughly approved of this piece of dynamic thinking.




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 !



Sleeping Yoga

Today Ellen and I went for a taster yoga session.  This involved a great deal of preparation, including stocking up on plenty of carbs before the workout.


Preparing for the workout ahead

Ellen did some yoga at school a few years ago and often ‘strikes a pose’ being surprisingly flexible for one who’s inclination tends towards the sedentary.

Lynn is a very experienced teacher of yoga for children and those with special needs and she let Ellen have a good look around the studio before we started our taster session.  I filled in the obligatory information form and then we removed our shoes to step into the studio.  Ellen sat and watched as Lynn and I moved through a few basic moves (including three ‘ommmmm’ chants at the beginning) but then obviously lost interest in us and seemed to wander off towards the door.

Not to worry, she had just decided she was more comfortable with her shoes on.  Again Lynn was fine with this and praised Ellen when she returned, shoes on, for her standard legs apart hands on hips pose ‘good idea Ellen, let’s do some side bends’ she encouraged.  Ellen did join in, even with the Tree pose, until then she had an unfortunate mishap related to the monthly female condition and obviously felt rather uncomfortable.  Another small interruption followed whilst Ellen went to the loo, but with no change of clothes available, even I was beginning to wonder what on earth would happen next…

However, Lynn remained warm and inclusive throughout the session, nothing Ellen and I could throw at her rocked her from her yogic calm.  Finally, we reached the relaxation stage, which was obviously Ellen’s favourite as she stayed in it long after Lynn and I had got up, chatted, got coats on and were ready to leave.  Ellen’s verdict…? She’d like to go again….hopefully Lynn will not have left the country…


Peace at last


What I’m good at: Hiding

Every so often, professionals who come to see Ellen, talk about ‘seeking her views’.  This is of course a very laudable aim, but these knowledge-seekers are often repelled with a get out! from Ellen or if they’re really lucky, she’ll tell them she’s good at eating chips.  They usually back away looking rather crestfallen at having, as always, to rely on parental views alone.

I understand their frustration, but I’ve spent 19 years trying to find out what Ellen’s thinking and feeling so their five minutes of failure gives them just that little insight into what it’s like trying to second-guess someone day in day out.

Another of these questionnaires plopped onto the mat last week and today, I sat down with Ellen in an attempt to fill it in.

Mog decided that this was the exact moment to demand attention, and his determination to sit on the questionnaire, although rather unwanted by me, did get Ellen in an excellent mood for the boring task ahead.


Mog ‘helping’

Things I’m good at was the first question.  Hiding Ellen wrote, no doubt inspired by the fact we had just come back from the pet food shop where she had hidden amongst the fishing rods in the tackle and bait shop downstairs whilst I was paying for my dog food.  She thought it was hilarious.  Not so the two, grossly overweight fishermen who were sat in the cellar trying to ignore the fact that Ellen was dancing in the corner.

Things I like, things I don’t like and new things I’d like to try.  In an attempt to get a more relevant answer, I added ‘at college’ to the end of this question.  I like playing on the swing and going to Morrisons.  I don’t like the fire alarm.  I’d like to try cooking. (Ellen actually does cooking at college and has done for three years but heigh ho – they’ll like that I’m sure).

Things I admire about me.  This is a tricky one.  Admire isn’t a word that Ellen really understands.  What do you like about yourself?  I asked her.  There was a long pause.  In the end she wrote.  Funny.  Lovely.  No room for modesty in the autistic brain obviously.

My aspirations and goals for the future.  Again, how many special needs people understand the word aspirations?!  However, once translated by me, Ellen wrote: I’d like to work in McDonalds.  The headline flashed before my eyes ‘McDonalds announces profits warning as teenage girl eats all the chips.’

We carried on slowly through the questionanire, but I don’t think I really felt I had an insight into Ellen’s mind until we came to the last box.

How I need to be supported to be heard and understood.  Without any prompting from me Ellen wrote: I need help how to hear me.

Yup, that sums it up nicely.