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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!

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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.

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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,

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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).

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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!

 

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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.

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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.

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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.

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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…?

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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!

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Well, that was easy!

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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

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 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.

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Planning the cupcakes of doom

The rather squashed - but finished - butterfly cupcakes

The rather squashed – but finished – butterfly cupcakes

If given the choice between planning an activity with Ellen or having an idea and then ‘winging it’, winging it wins every time.  My RDI consultant may have noticed, because I have been given a new planning template to fill in which forces me to sit down and think about what I am trying to achieve during each engagement.  To me it’s like fruit.  I know it’s good for me but I still find it hard to force down.

Still, having already decided that I was going to make butterfly cupcakes with Ellen this afternoon (the freezing temperature putting me off any outdoor activities) it seemed a good opportunity to practise the new regime and so I sat down and filled out the form.

My main aims were to use minimal language and instead to rely heavily on non-verbal communication.  I would know this was working if I noticed Ellen’s gaze shifting to me on a regular basis. The difficulties I predicted were (a) that Ellen’s poor motor skills would make cracking the eggs a struggle, but I planned to model this for her, and (b) that Ellen finds the hand mixer loud and offputting, but I would do the majority of the mixing and encourage her to hold it for at least some of the time.

Finally if Ellen walked off during the engagement I would spotlight this by saying something like ‘you must be bored, I wonder how I could make this more exciting for you’ (if only people would say this to me sometimes!) and hope that she would come up with some suggestions about the changes we could make.

Happy with the plan I printed it off and virtually skipped into the kitchen.  As soon as I turned on the video camera however, I totally forgot what I had so carefully planned.  Ellen was stroppy; she didn’t want to be in the kitchen making cupcakes with me, she wanted to be upstairs watching her DVD.  She responded to my facial expressions with a loud ‘humph’ noise and by crossing her arms.  She smashed the eggs into the jug, refusing to let me help her and then fished large chunks of shell out with her finger – leaving several smaller bits behind.  Granted I did get lots of eye contact, although it was rather more mutinous than enquiring, I’ll take what I can get.

Ellen left the room, several times, but I forgot my line about being bored and instead said I was ‘waiting’ which resulted in more loud ‘humph’ noises.  She point blank refused to hold the hand mixer until eventually, sensing that I wasn’t going to give in, she let her hand briefly touch the handle before letting go and leaving me to lurch forward to grab it before it smashed into the bowl.  The home phone rang twice and Ellen repeatedly stuck her finger in the mixture and then licked it.  Things were not going well.

BUT

We perservered.  I got my first smile when I picked up one of the whisks and started licking off the icing, indicating for Ellen to do the same – funnily enough – this time she obliged!

Happiness is...licking the icing

Happiness is…licking the icing

And when it came to actually decorating the cakes, Ellen was all smiles and delight although still rather more interested in pinching icing off the cakes we were icing than actually producing sylish wing designs.  Still I went with it keen to produce some positive experience sharing memories. My Mum, who had rung up during the proceedings, said the cupcakes sounded delicious and could we save one for her.  Of course I said.  After all who cares about a bit of shell and saliva, it’ll probably be a boost for the immune system.  Cake anyone?

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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 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)

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.

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Challenging Chutney

You may have noticed that we have been working on the RDI goal of ‘Co-ordination’ for some time.  It’s not that Ellen can’t co-ordinate, it’s just that most of the time she doesn’t want to, prefering to be different.  I spent a whole walk once playing Simon Says with her, in an attempt at a co-ordinated game but whatever I said she did the complete opposite – giggling wildly all the time (Me: Simon Says walk like a chicken, Ellen: Baaaa!).

Our RDI Consultant has kindly taken pity on us and we have now moved on to a Co-regulation goal: ‘Ellen to regulate her actions to remain coordinated, while participating in a form of co-regulatory turn-taking, in which each person observes their partner’s “turn” and then responds with their own contingent, but not imitative action.’

This week I was determined to get this nailed, ticked off, completed etc…the trouble was my mind was totally blank of ideas.  I couldn’t go out anywhere because I was in charge of the puppy, apple-printing would be too messy, but hang on we’ve still got loads of courgettes – so how about making a courgette chutney!

The idea was that we would take different turns peeling and chopping the various vegetables.  Ellen tried to peel the courgettes, but found it too challenging, so we swapped and I peeled while she chopped.  This worked pretty well, although the chunks were not quite the ‘small dice’ required by the recipe, but a few goes with the potato masher at the end soon sorted out this little problem.  There were quite a few tasks which we could co-ordinate on whilst working on separate goals; Ellen held the measuring spoon while I poured things in; she put the chopped items into the pan while I started peeling the next ingredient and I even manage to stop over-compensating and let her measure out the ingredients.  I’ve yet to look back at the video and that almost always reveals a few chinks in the porcelain, but we had a lovely time together enhanced by the three flies who kindly flew into Ellen’s orbit to be swatted and the glass measuring jug which ‘spontaneously’ broke while Ellen was drying it up – much to her delight (less so to mine).

 Ellen and the chutney mix

Ellen and the chutney mix

Cheese and chutney sandwich anyone?