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The Department of Wasted Priorities

Ellen had a day off college today in order to enjoy an enforced ‘assessment with a healthcare professional’.  The summons came through the post and was ordered by the Department of Work and Pensions who presumably wanted to assure themselves that Ellen is in fact disabled and not committing benefit fraud.  Had the shadowy department read any of the documents and reports created by similar healthcare professionals about Ellen over the last 20 years, they could have saved both of us time and money.

Ellen guarding the water cooler

The waiting room was sparsely furnished both of objects and people.  We were in fact the only ones waiting, and wait we did, a 10-15 minutes estimate turned into 40 minutes with Ellen becoming increasingly twitchy and entertaining herself by drinking as many cups of water as possible from the water cooler.  I decided to try and recoup something from the 2-hour round trip and filled out the expenses claim form for petrol.  Did they pay the Inland Revenue rate of 45p per mile?  Er no, a whopping 25p per mile is doled out which reduced my petrol claim a rather measerly £9.10.

Eventually a short, black-haired woman in her late thirties came to collect us.  I walked to the hallway with Ellen following and the lady announced that the assessment room was on the first floor and did we need the lift?  Clearly she had not read Ellen’s file.  Not overly impressed with her powers of observation either, I replied ‘no, the stairs will be fine’ leaving the look of surprise on my face a fraction longer than was necessary.

The assessment room itself contained two chairs and and a hospital bed with a layer of disposable paper on it, good luck with that, I thought.

‘This will take no more than 20 minutes’ she explained.  In fact it took 6.

She began; ‘So Ellen has ‘autism, learning difficulties and dyspraxia?’  She paused, ‘I don’t really know why you’re here.’

‘Neither do I’, I replied.

Why Ellen was there was even less obvious.  After the first question ‘are you still going to college?’ was ignored by Ellen, I was asked to reply on her behalf.

‘Oh, I assumed you wanted to interview Ellen, hence her being told to come and having to have a day off college in order to get here?’

‘Oh well you can answer the questions, as you’re her appointee’.

Silence hung heavily in the room for a moment.

I then noticed that the woman had a copy of Ellen’s EHCP in front of her.  She gathered herself and began to ask a few questions towards gauging Ellen’s ability to get up, get dressed, cook food and travel to college. All of which require supervision and all of which is detailed in her EHCP.

As usual, all the questions seemed to be geared around physical ability and totally irrelevant for someone with learning difficulties.  ‘Can you load and start a washing machine?’ is a memorable question from one form.  Of course, physically, Ellen could load and start a washing machine.  But without prompting and supervision she would never see the need to wash anything, and even if she did, she’d have no clue about unloading it and drying it.  I think the woman took this on board, but of course, nothing will change.  She muttered that she could complete the rest of the form without us and so we left.

Ellen did not utter one word.

One positive has come out of it though, Ellen has discovered the delights of the Word Cookies ap!

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We can beat Betty Crocker, can’t we?

Chopping the pesky Bramleys

The last time Ellen persuaded me to make a Betty Crocker cake (and ‘made’ is hyperbole) my NT daughter told me it was one of the best cakes she’d ever tasted.  The E numbers take up most of the back of the packet and, like a McDonalds burger, it didn’t seem to ever go bad. I have no doubt the whole range will soon be condemned by Public Health England.

Today, Ellen and I were supposed to be going to the zoo to see the new female tiger, but the monsoon-like rain which has anchored itself over England for the past month forced us to make other plans.  So, I’m sure like many other desperate families during the drenched Easter Holidays, we decided to make a cake.

We braved the downpour to make a trip to Tesco to buy the necessary healthy ingredients and the Bramley apples proved to be difficult to locate and weigh at the till and so provided Ellen with a lot of welcome challenges and opportunities for me to guide her.  As we passed the ‘home baking’ aisle, Ellen lovingly stroked the Betty Crocker chocolate fudge cake mix packets.

‘We’re not making that today’ I announced cheerfully ‘we’re making a healthy cake’.  I chose to overlook the fact that Ellen had already put a spaghetti bolognaise ready meal, 3 packets of sweets and some chocolate buttons in the trolley.

 

Mission accomplished!

After our healthy lunch, we proceeded to make the ‘healthy cake’.  The three massive Bramleys were quite a challenge to peel, but Ellen proved to be very adept at cutting them into chunks.  She was also very keen to break the eggs and mix them together and enthusiastically grabbed the sieve to sift the flour and cinnamon, unfortunately without appreciating that it improved the success rate to hold the sieve over the mixing bowl and not the floor! (This is one of those times when having dogs is a bonus).

When the cake finally emerged from the oven an hour later, Ellen had lost interest and was busy tucking into her sweets.  I gave a piece to my NT daughter who looked at it without enthusiasm, ‘I don’t usually like these kind of cakes’ she began, ‘I’m only saying that so you don’t think it’s your cooking if I don’t like it’.  This was followed by exaggerated ‘mmmm’ ‘mmmm’ noises before half the cake was deposited back in front of me.  ‘It’s really nice Mum, but I had a big lunch so I can’t finish it, but you have it.’

How kind, I thought, tucking in.  However, I’m not sure it will be terribly healthy for me to eat the entire cake on my own.

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Our adventure in Kenya

Ellen turned 21 at the beginning of this year and the question was how best to celebrate this milestone with someone who has no interest in parties, jewellery, drinking or even other people really, beyond their capacity to bring presents.  Almost every one of Ellen’s birthdays up until now have been spent at the zoo, so why not take it one giant step further, we thought (after a few cocktails one night), and go on safari to Africa?!

The trip has been a year in the planning, with several hurdles to overcome, the main ones being;

a) Ellen’s refusal to have injections.
b) Ellen’s dislike of flying (our trip involved five separate flights).
c) Ellen’s heavy reliance on McDonalds as a form of sustenance.
d) Ellen’s insistence on wearing a jumper at all times no matter how high the temperature.
e) Her past history of running through passport control fuelled by a rush of post-flight adrenaline (which certainly made the security staff in Florida a bit twitchy).

I won’t bore you with the year spent relating social stories, rubbing in magic cream and the amateur dramatic quality of my experience-sharing activities. Instead, here are some of the highlights of the trip.

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Ellen and the hippos

Ellen loved sleeping in the huge bed in our rather luxurious ‘tent’ on the conservancy.  One morning, when I went to wake her at 6.00 am for the safari drive, she sat up and as she did so, a large black centipede uncurled itself from its sleeping position next to her (obviously noting the sudden lack of warmth) and slid off under her pillow.  Daisy and I looked at each other in horror, expecting Ellen to have a total meltdown, but instead she was giggling and seemed to love the fact that she’d spent the night with a large invertebrate.  I have to say though that my bed received a very thorough inspection that night!

We had fabulous food on safari, but there was no choice, you ate what was put in front of you.  Dinner was four (yes four!) courses and as William, our Masai waiter, put the bowl of vichyssoise soup in front of Ellen on the first evening, we were all expecting her to reject it, loudly and irrefutably.  What we were not expecting was that she would pick up a bread roll, ask for it to be buttered and then eat the soup as if she’d been dining on such things every day of her life!  She ate soup many times on holiday, but in typical fashion has refused to touch it since we returned home, ‘she’s not on holiday now!’ Ellen told me firmly when I tried to do a similar ‘William’ trick back in Blighty.

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Ellen or ‘Helene’ enjoying her second Birthday cake

Ellen coped well with so many new things; the ‘African massage’ we all received driving through the bush, at times so violent we were almost propelled out of our seats, the tiny planes with no co-pilot, sleeping under a mosquito net and a prolonged period of sharing a room with her sister.  She even, after encouragement, dipped her toes in the sea.

Of course, she still talked about going home from day one, went mute one day and refused to try to sleep, or let anyone else sleep on the overnight flight home, but these things seem so minor compared to everything else.

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Friends on the beach

The big question is – did Ellen enjoy it enough to undertake such an adventure again?  And the answer is, yes I think so.  Especially as, after having close up encounters with elephants, lions, cheetahs, hippos, wildebeest, buffalo and many many other fabulous animals, Ellen commented that she hadn’t still hadn’t seen any tigers.

India, here we come?

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Ant squashing

Still on a mission to do ‘something different’ with Ellen, we suggested that it might be a nice idea to return to Waddesdon Manor today, look around the house (which was closed last time we came) and have a picnic in the grounds.  To compromise a bit, we suggested Ellen could have McDonalds en route; whilst we picked some edible food from the supermarket.  Part of the plan was to get a pudding for Ellen, so that although she had had already eaten her favoured food, she would still be included in the picnic.

Oh the best laid plans…

After we had parked and walked up to the welcome desk, we were greeted with the news that the tickets for the house were already sold out for the day.  Problem 1.

Problem 2.  Rich had forgotten to buy Ellen a pudding.

Problem 3. He’d picked up sparkling water by mistake too.

Problem 4. It looked like it was going to rain.

It turned out that none of the above really mattered to Ellen.  Sure, she wanted to look around the house, but she was pretty happy looking at the aviary instead and was even more interested in the fact that the statues, which had been wrapped up in January, were now uncovered.  Picnics with a view?  Nah, much more fun to try and squash any ants which dared to try and crawl onto the picnic rug and then make up a rather morbid song about their demise. Plus, she managed to bags the back seat on the bus back to the car park and it didn’t rain until we were driving out.

Even better, we’ve got a reason to go back.  Having failed twice now to look inside the house, perhaps it’s third time lucky, I might even try and be organised and book online.

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Outside the ‘house for birds’

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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).

 

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I know I’m biased, but I love it.

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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.

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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…

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Peace at last

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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.