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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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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.

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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!

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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!

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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!

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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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Back in Perspective

We’ve had a six week break from RDI as daughter No. 2’s engagement with GCSE exams proved to be rather hostile for all involved – never mind learning how to modify your speech for an autistic child, there needs to be a communication guide for parents of an exam-stressed teenager.  In short – if you must engage in conversation – put a flak jacket on first!

Thankfully, a cease-fire having been declared (exams finally finishing), it was time to dust off the video camera and the imagination and plan a new activity around our current objective.  Perspective taking.

Ellen has shown many times her own individual perspective; at the weekend I was involved in the Circus-themed village fete and had manned my stall dressed as Marcel Marceau – however to Ellen I was a Zebra pure and simple.  She even made me a bracelet saying Zebra!

Zebra and Tiger at the Village Fete

Zebra and Tiger at the Village Fete

However, we are trying to test whether or not Ellen realises that different people may have a different view of the same thing, and that these views are equally valid.  She seems to have a burgeoning realisation of this; she will turn a book to show me if I say I can’t see something, and we had fun with blotto painting a few weeks ago.  We both, however needed to get back into the swing of planned engagements and so I picked what I thought would be a fairly simple task – to make animal faces out of coloured dough.

Do you know what it is yet?

Do you know what it is yet?

Unfortunately the dough was rock hard and even I struggled to mould it into shape. Mindful that the actual making of the faces wasn’t the main focus of the engagement, I did help Ellen roll and shape her pieces of dough.  Mine was going to be a zebra but Ellen nicked all the stripes off it telling me as she did so that it was going to be a panda. I’m not sure she’s quite grasped the idea that my perspective is ‘equally valid’!

What surprised me the most about the activity was not how easily we both slipped back into our familiar roles, but that on a couple of occasions Ellen used language in a more imaginative than purely functional way.  I had a go at guessing that the squashed black and yellow face at the top of the picture was a fish and rather than just saying ‘no it’s a lion’, Ellen to my astonishment said ‘it’s much better than that’ 🙂 .

The real Marcel

The real Marcel

look familiar?

look familiar?

Perhaps that’s how she felt about Marcel and the Zebra….can’t say I disagree!

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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

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?

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.

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Another year – but the same onesie!

In the blink of an eye another year has gone by and suddenly it’s World Autism Awareness Week again, and in particular today it’s Onesie Wednesday.  Whatever anyone thinks about the inevitable politics surrounding autism, to my mind Onesie Wednesday encapulates the ethos in a single image; you stand out, but it’s OK to be different.

Taking my pink and purple cakes to sell in the shop this morning I was surprised at how few people even gave me a second glance in the zebra onesie; Wilstone is obviously very autism aware, no doubt largely due to the fact that Ellen works in the shop every week and shoppers are becoming familiar with and even affectionate towards Ellen’s own particular brand of ‘customer service’.

At our regular McDonalds, people were less used to seeing grown adults out and about in broad daylight wearing a onesie and I got quite a few strange looks and smiles, but no comments – gotta love that English reserve!

Trotting along to McDonalds

Trotting along to McDonalds