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!’

 

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 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.

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!

Starting with a ROAR

For the first time yesterday, Ellen and I attended a ROAR event; a craft session at a local church hall.

ROAR stands for Recreational Opportunities Allowing Respite and is run by our local Mencap organisation for adults with learning disabilities http://www.dacorummencap.org.uk/roar/.  Every month they send out a programme of activities that can be booked in advance – from lunches and pub visits to discos and information events.  Being quite young for her age and not, I feel, quite up to downing white wine at the pub (although I certainly am) we decided to opt for the craft session instead.

I thought I’d failed at the first post as everyone came in with various carrier bags, lunch boxes and kitchen foil from which they unpacked all manner of delicious looking food.  Ellen was on a promise of a McDonalds after the session; so was not too distracted by the display, although the girl she was sitting with was tucking into what she said was chicken sausage with ketchup (does that exist?!)

Vicky, the lady who organises the sessions, certainly produces imaginative and fun activities!  This month it was wind-chimes and dream catchers.  Vicky explained to Ellen the function of dream catchers and she was eager to make this one first.  It involved tying a lot of tricky knots, which soon became my job and Ellen, of course, picked the beads with the smallest holes for me to try and thread!  Still she was very happy with the end result, as you can see.

Ellen’s dream catcher

We then moved onto the next table to make our wind chime.  Vicky had managed to gather a whole pile of unwanted teaspoons via Mencap’s Facebook page, and using them, some lolly sticks (decorated of course) and some fishing wire came up with a very imaginative design for a fully functioning wind chime!  But more knots!!  Everyone was very happy with their windchimes, although goodness knows if they all made it home without becoming a tangled mess (ours didn’t).

Ellen with her tangle-inducing crafts

Ellen enjoyed the couple of hours, but I could see that to those people who no longer have college to attend or a job to go to it really was a life line.  That’ll be us next year – gulp.

Making Biscuits for an MP

There’s a General Election on 7 May – had you realised?  Well yes, unless you have managed to avoid all television, newspapers and the pamphlets through the letterbox that knowledge is pretty unavoidable.

The National Autistic Society are running an #ImOne campagin where members are encouraged to invite their parliamentary candidates along for a coffee morning to listen to our stories and concerns.  I hosted such a coffee morning yesterday (except it was in the afternoon – and he didn’t want a coffee) and our local Conservative candidate came along to listen.

Good excuse to make some biscuits with Ellen I thought.

Icing the biscuits

Ellen is quite proficient at baking these days, but icing is a whole new ‘edge-plus one’ concept for her.  She happily took up the icing bag, but all my suggestions ‘perhaps you could ice a snake-shape or a circle?’ were ignored and instead she drizzled a salvador dali type symbol over each one.  Ho hum, this will test his mettle I thought, putting the plate out on the table.

Have a biscuit?

He may have swerved my question about where the proposed £12 billion in welfare cuts were going to come from, mumbling something about always ‘protecting the vulnerable’, but he did listen, he did take away some actions and he did eat a biscuit!

Ellen of course was completely unmoved by the success of her creations, but maybe, just maybe, next time his is sitting in his office in the Treasury with his red pen in hand ready to slash at the figures in front of him, the image of these biscuits will make him at least pause think about the real people behind the numbers.

A relaxing afternoon on the riverbank…

What – in January?  Ah but this was in the cosy confines of the Vaudeville Theatre in London to see The Wind in the Willows.  For once we went en famile and yes, amazingly it was relaxing – why?  Because it was the first time we have ever attended a special ‘relaxed’ theatre performance and going on today’s experience it hopefully won’t be the last.

Ellen loves going to the cinema, but has not been prepared to go to the theatre for years; it’s probably our own fault, taking her to see War House at The National when she was around 12 was not a wise move.  The gunshots and blasts were pretty terrifying and she ended up spending most of the show in the foyer.  As a family, we love going to the theatre; and with London on our doorstep with all its amazing West End shows I have felt that Ellen has really been missing out.  So, when I saw that a relaxed performance of The Wind in the Willows was coming up, I felt it might be the right time to try again and so I booked tickets.

Relaxed theatre productions have been slowly trickling into the West End since 2012, the show is the same but is made more welcoming to people with special needs and in particular those with autism or other communication difficulties.  The lighting may be adjusted, the sound reduced and above all, no one minds if the audience shouts out or jumps up and down during the show.  In addition, if you do end up in the foyer, the show is screened so you can continue to watch it from a safe distance as this newspaper article from 2013 explains http://www.theguardian.com/society/2013/jun/16/relaxed-theatre-autistic-children

What was particularly impressive about this performance; organised by the Mousetrap Theatre Project, was that about two weeks before the performance I was emailed a social story which covered not only how to to travel to the theatre, but also contained a list of characters with photos and a detailed breakdown of each scene telling us exactly what was going to happen and if there were going to be any loud noises, scary bits or, as in this performance, snow falling on the audience in the stalls.

Ellen with Ratty and Badger…

Ellen wasn’t keen on the train up; in fact she ran so far up the platform that we only just managed to get down again in time to catch the train.  Our journey across London was punctuated with calls for ‘go home now’ which continued as we made our way into the theatre and found our seats.  But, it didn’t matter.  All around us other kids were settling down, putting sound definders on, jumping, squealing and flapping and we felt right at home.  Luckily, they were selling little figures of the characters and once Ellen had got ‘Ratty’ to sit with Sher Khan and Bagherra she was fine.

The show was magical.  Alan Titchmarsh was the narrator and the animals danced and mimed their way through the story.  The lack of speech and the reliance on body language and gesture was perfect for this special audience.  I actually felt that the shout outs and comments added to rather than detracted from the performance.  This was no quietly studious crowd but an animated and energetic one.  At one point during the first half, an autistic boy suddenly mounted the stage and spent a few minutes circulating round whilst the characters carried on with the story.  Eventually Alan Titchmarsh managed to gently guide him back to the steps where he was helped off the stage by his family – to much applause from the audience.

By the time the interval arrived Ellen was gripped, and Ratty was joined by the other three main characters, ‘Mole’, ‘Badger’ and ‘Toad’.  There were no more unscheduled interruptions and the whole audience seemed to be swept away with the magic of the afternoon.  By the time Scene 11 arrived and along with it Goodbye from all the characters, I had spotted quite a few smiles on Ellen’s face.  A positive memory has been formed and I made sure I reinforced it (thank you RDI) by saying ‘that was a great theatre trip’ and  ‘you looked like you enjoyed yourself’.  Ellen spotted posters for The Lion King on the tube on the way home and is definitely up for another trip.  ‘Not today though’ she wisely added.

who were soon joined by Mole and Toad (with Sher Khan of course)

The train on the way home was completely packed.  Only four carriages for the hoardes of visitors and football fans travelling home.  Ellen spotted a seat next in the corner next to a very large man.  He kindly got up to let her in, but then she wouldn’t let him sit down again.  ‘No – Mum sit here’ she demanded and the poor man really had no choice but to give up his seat for me, so I even managed to get a relaxing (once my burning cheeks had faded) journey home.