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Stand up for Chair Yoga

A rare moment of actually sitting on the chair

Ellen and I tried something new today, ‘chair yoga’.  It does exactly what it says on the tin, there’s a chair and you sit on it whilst performing modified yoga poses.  The session was run by our local Mencap group and I thought it would be a winner with Ellen as it combines two things she loves doing – sitting down and posing.

It was a relaxed class, and the teacher was open to the idea of her students attempting the full pose, or a simplified version or even just watching if they didn’t feel like joining in.  I’m not sure, however, that she was prepared for Ellen standing during most of the class, nor the fact that when she was told to rotate her feet, Ellen rotated her hands and then continued to do the opposite of what she was supposed to be doing.  Every time she caught my eye, she whispered ‘Tesco’ at me, the thought of the post-exercise dolly mixtures obviously forefront in her mind.

The hour went quickly though as we became ‘waving trees’ saying hello to each other and performed a singing chant (Ellen didn’t sing, but did follow the actions).  The class ended with a meditation, where we sat in staff pose (which basically meant sitting on the chair), closed our eyes and tried to put ourselves into the moonlit infinity pool which was being described in great detail by the instructor.  It did indeed take quite a lot of concentration to try and block out the couple at the table behind us rustling their crisp packets and the group in the anti-chamber having a heated discussion about whether or not a certain number had been called out in the bingo.

Perhaps the best line of all however was delivered by Beatrice, a vocal young woman who had sat at the front of the class, not participating physically, but keeping up a verbal flow throughout the hour; ‘I don’t want to do that’, ‘that hurts my leg’ ‘why are we doing this?’ or ‘I’m putting my shoes back on’. Her carer had long since given up asking her to keep quiet and the instructor had also abandoned the attempt to actually answer the questions and simply carried on through the heckling.  ‘You’re a great teacher’ Beatrice declared as the class came to an end, and the unexpectedness of her approbation made us all laugh.

Yoga is indeed, for everyone.

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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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Freezing in Berkhamsted Castle

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Yup we’re the only ones here!

It’s half-term, so naturally that means it’s freezing cold and the rain is only dissipated by high wind or sleet.

Berkhamsted Castle is the sort of place you drive past at least once a week but never actually go into.  It’s an English Heritage site, but all you can see from the road are a few walls and the odd train whistling by.  Ellen loves visiting National Trust houses (as mentioned in other posts) and whilst I realised that the Castle would be not quite so familiar i.e no roof and no chairs, I thought that it would be a good opportunity for us to share a ‘same but different’ experience.

This is a great place to visit with an energetic autistic person, as there’s lots of space to run and steps to climb, and although there’s not a lot of structure left, it’s an interesting and atmospheric site.

Ellen, however, is not an energetic autistic person and was in a bad mood from the very start.  She wouldn’t wear her hat or do up her coat and the constant cold wet drizzle must have been unpleasant but she was obviously determined not to give in to it or to give me any more than one-word feedback to all my experience-sharing prompts.

Me: ‘Oh look we’re the only ones here!’
Ellen: ‘Car’

Me: ‘You know this Castle used to be owned by someone called Richard’
Ellen: ‘Car!’

Me: ‘Ooh look we can be King of the Castle and climb up to the Keep’
Ellen: ‘Car!!’

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Where’s Ellen?

Not to be put off, I climbed up to the Keep in the vague hope that Ellen might follow.  I must admit my heart did slightly jump into my throat when I turned round to survey my Kingdom and could see no sign of Ellen.  Then I saw a flash of movement behind the central piece of remaining wall – ‘ah ha’ I thought ‘she’s playing hide and seek’.  I crept down the stairs and jumped theatrically around the corner shouting ‘Boo!’, but Ellen wasn’t there, she was already hot-footing it back to the entrance still shouting ‘Car!’

Grateful that the place was indeed deserted, I caught her up.  She almost cracked a smile when I exclaimed that I thought I’d lost her, but powered ahead once she realised that we could finally finish at the Castle and head into town in search of shops and food.  Her mood didn’t lighten though and in the car on the way home I commented that she had been ‘rather grumpy’.  But it wasn’t the weather, or the Castle or the fact that we went to the ‘wrong’ supermarket that was responsible.  According to Ellen, she was grumpy because she had been denied a McDonalds.

So, English Heritage, if you’re reading, perhaps you could kindly allow a McDonalds franchise to open up on-site, there’s lots of empty gaps and I’m sure it wouldn’t detract at all from the atmosphere of the place!

 

 

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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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New Year goals

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Ellen loving the shrouded fountain

I’ve had to alter the strapline of my blog since Ellen’s latest birthday; no longer do I have a teenage daughter – Ellen is now twenty!

This milestone has been a timely reminder to work on my overcompensation:

why am I still brushing Ellen’s hair for her?

why am I putting her gloves on?

Why am I still shampooing her hair?

Why am I still making her breakfast?

Well because otherwise she’d go out with hair like a haystack, freezing cold hands, greasy hair and an empty stomach and we’d be two hours late for everything. But really that’s no excuse, we’ve got to start somewhere, so today she was a haystack with freezing hands.

We’re also trying to work on the concept of ‘something different‘.  This can be as small as sitting in a different chair at mealtimes, ordering a different drink from McDonalds (me obviously, not Ellen who is still firmly wedded to plain cheeseburger, large fries and a bottle of water) or choosing a different activity.

On a Sunday, Ellen always wants to either go shopping or go to the zoo, but this week we suggested to Ellen that perhaps we could do ‘something different‘.  I’m hoping that in the future, she’ll come up with her own ideas, but for now she relies on me and from the paltry selection I could come up with she chose to go and ‘look around a big house’ i.e our nearest National Trust property – Waddesdon Manor.

What I hadn’t anticipated was that the house would be closed for the winter and all the statues covered in protective wadding like something out of a gothic novel.  And it was absolutely freezing!  But, we made a plan. Lunch in the cafe (far too cold to sit outside, even with the hygge-inspired fur-lined chairs), a walk around the outside of the house, Ellen to take a photograph of something she liked and then back on the bus to the car park.

Ellen coped really well with the dynamic situation she faced in the cafe.  It was busy and the cafe was understaffed, so we had to queue quite a long time for a table.  When we finally sat down and saw the menu, the sausages came with mash not chips and her food arrived with  gravy on it (a massive no-no) and had to go back.  Ellen, however coped remarkably well with all this difference, I think she was just glad to be out of the cold and next to a radiator.  She then wanted a slice of chocolate cake for pudding (another familiar choice) but there was no such option on the menu, the ‘amazing’ cake she hopefully pointed at turned out to be a fruit cake (yuck!) so rather than have nothing, she opted for a chocolate brownie.  The texture was rather different to what she’s used to and so I had the opportunity to model how to use the side of her fork to slice little sections off, and she quickly got the hang of it.  The brownie was incredibly rich and sadly she couldn’t finish it all, so I had to step in and help out ;-).

Food/sugar gave Ellen a spring in her step and she skipped up the steep path towards the house before taking photos of things she thought were interesting, surprisingly good I think!

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All three taken by Ellen

On the bus back we talked about returning another day when the house is open. Meanwhile over the next week, I’ll have to put together a list of ‘different Sunday’ activities that are indoors, in order to avoid shopping and the zoo for a bit longer and not freeze to death in the process.