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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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Ellen turns eighteen

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Yesterday, 2nd January 2015 was Ellen’s 18th Birthday.  I couldn’t help thinking as I looked back over some photos of her as a baby, that my twenty-six year old self had absolutely no idea of what the next eighteen years would hold.  Of course it hasn’t been plain sailing, frequently choppy with stormy elements if I’m honest, although even the parents of a non-autistic child have their difficult moments.  But last night, as we celebrated her 18th Birthday surrounded by friends and family I was overwhelmed with pride at the young woman she has turned out to be.

Ellen has always loved her Birthday, particularly opening presents, which she does so with an extremely clinical rapidity, barely glancing at the enclosed gift before getting the next one ready on her lap.  Many a time I have had to tell disappointed relatives ‘she does love it really’, as their carefully chosen present is slung aside with barely a glance.  New  things seem to have to go through a kind of quarantine and only after a couple of weeks are they admitted into the fold and then watched, worn or read and finally appreciated.

Ellen’s autism means that she has never really liked parties, but this year, she surprised me.  When I mentioned to her that she might want to have some people over she not only seemed keen, but was very decisive about what she wanted.  She wrote a list of people that she wanted to invite, totally around 30 people mainly friends and family members.  As you may have seen from previous blogs, Ellen loves face painting.  This party was to be a face painting party, with everyone young and old to be painted as animals.  Ellen even chose who was going to be what animal, our intrepid facepainter had to cope with requests for jellyfish and skunks as well as the more standard butterfly and tiger designs.

Lion and Tiger were the first to be painted

Lion and Tiger were the first to be painted

There were also to be games; pass the parcel, musical statues, pin the tail on the tiger and bingo.  There was also going to be dancing.  Ellen was also very clear that she wanted a tiger cake but that no one was to sing Happy Birthday when she blew out the candles.  Ellen even came food shopping with us and chose the party food she would like; some of which was not surprising; sausages on sticks and ham sandwiches but she did throw me a bit with her request for pineapple and cheese on sticks, not sure where she has picked up that idea from!

Despite all the careful planning and preparation, I wasn’t sure that Ellen would actually participate in the party at all.  I thought there was about a 50/50 chance that she would take one look at the hoards of people arriving and disappear to the sanctuary of her bedroom for the whole night!  How happy was I to be proved wrong.

Ellen absolutely loved watching everyone get their face painted and immediately posed for photos with those who had been transformed.  She cheated blatantly at pin the tail on the tiger, whilst declaring that she couldn’t have a scarf around her eyes because it would ruin her face paint but that she ‘promised’ she wouldn’t look.

She played at least three rounds of bingo and musical statues and amazingly won them all…(there had to be a prize for Ellen and then another for the real winner).

The musical statue winners

The musical statue winners

She blew out the candles on the cake without anyone singing, but was happy enough for everyone to chant ‘Happy Birthday’ Ellen.  I thought I was being really clever making her a cake which had tiger stripes inside.  I wasn’t sure that the recipe had worked until I cut the cake open and when I did I declared proudly ‘and look Ellen it has tiger stripes inside’ to which she replied.  ‘Those aren’t tiger stripes, they’re zebra stripes’, back to the drawing board then ;-).

The tiger cake with 'zebra' stripes

The tiger cake with ‘zebra’ stripes

Ellen is not a typical eighteen year old, but she has a fabulous sense of humour and her straight forward, socially uninhibited way of life makes her a lot of fun to be around.  It was a great day.