The Motivation to Mask-up

Ellen adores shopping and the hardest part of lockdown for her has been the fact that she has been unable to go to Milton Keynes and visit her triumvirate of joy; The Disney Store, CEX and HMV. Every time she asked to go shopping I explained to her that a virus had closed all the shops. She asked this question repeatedly for the first few weeks of lockdown and then to my relief, stopped mentioning it. Some people have talked about how lockdown has enabled them to connect more with their families and nature and to enjoy an enforced slow down. For me, not going shopping, and in particular, not standing for hours in HMV whilst Ellen chooses a DVD without even the most microscopic tear in the cellophane, has been bliss.

Despite appearing to have no understanding of the Coronavirus situation, or to even be listening during the daily briefings, Ellen suddenly announced ‘today is June 13th, the shops are opening on June 15th, so we can go shopping.’ I was completely flabbergasted and interrogated the family at length but no one admitted to telling Ellen this fact, so once again I appeared to have under-estimated her. But I still had another card up my sleeve to avoid going shopping – the need to wear a face mask.

The Government have advised that as well as face masks being mandatory on public transport, they are recommended in enclosed spaces where social distancing is difficult i.e. in shops. Disabled people are amongst those exempt from this rule, but whilst I knew Ellen would find wearing a mask difficult due to sensory issues, I also felt that she would be motivated enough to give it a try and that if she could wear one it could be of benefit in other situations too.

A local group craft group have been making a range of face masks, including some with animal designs, so I let Ellen chose her own. Again she confounded my expectations by rejecting the mask with tigers on it and instead picking a dolphin design. It only took two attempts before she managed to tolerate the cotton loops over her ears. Ellen looked at me with triumph over the top of the mask, and with no further excuses available, we set out for the shopping centre.

Ellen having found the Holy Grail

Ellen wore her mask in all the shops and queued up to get in without too much impatience. Of course the mask was flung off each time we came out of a shop and in some of the longer queues, she became extremely fidgety and I wasn’t sure that she would wait. Shopping is going to be a challenge, because each shop has different rules, some required a mask, some didn’t. Queues of differing lengths form outside the shops. Some had perspex screens at the tills and some required the customer to retreat behind a yellow line (Ellen didn’t get this at all). Despite being pretty quiet, the whole expedition took longer than it normally would.

But Ellen had a wonderful time. She ‘found’ Simba and Nala in the Disney Store, her favourite DVD in CEX (of which she has multiple copies at home) and had a long browse in HMV eventually selecting a DVD which didn’t rattle and had intact cellophane.

The only downside was that McDonalds in the shopping centre is still closed, as only their drive-throughs are open. However as Ellen pointed out, we would pass a drive through on the way home…

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!

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.

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,

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).

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!

 

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.

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.

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.

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…?

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!

Well, that was easy!

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

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?

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.

Ellen turns eighteen

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

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

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

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.

A Decoupage Zoo

Ellen was supposed to be going to respite tonight, but is apparently too ill.  After telling me last night she had too many itches and too many spots; she then surprised me by saying she had chicken pox.  She got a gold star for inventiveness and I was impressed that she actually knew what chicken pox was, but considering she had already had it aged five I was fairly sure the odds were stacked against her catching it again.  Not to be defeated however, this morning she woke up with a sore leg and earache too.  I didn’t believe this for a minute, but she did look a bit pale and subdued, her hands were cold and her sister has had a bit of a lurgy too, so I gave her the benefit of the doubt.  But of course this meant there would be no trip to McDonalds and that today’s activity would have to be an indoor one.

Decoupage is the perfect craft activity for Ellen because the more random the application of the paper, the better the finished product looks.  There is also a great independent Arts & Crafts shop in the local town of Berkhamsted which is crammed full of loads of brilliant bits and bobs and has an extensive decoupage section.  Ellen was after a giraffe and thank goodness they had one which we swiftly snaffled.  We also managed to leave the shop with an elephant and a lion (‘do them another day’), several sheets of decoupage paper and a box of sequin art.

Liberally applying the glue

Decoupage is good for me too in an RDI -way because there’s no right or wrong way to go about it so I’m less inclined to try and take over to make sure it ‘works’.  What made the whole experience even more fun for Ellen was that she spotted a money spider in my hair and then refused to take it off for me, so I had to put up with it until it finally decided to abandon ship and abseilled down in front of my eyes where I eventually managed to extract it.

I have to say despite having chicken pox, an earache, too many spots and itches and a bad leg, Ellen seemed to enjoy the activity immensely, even more so when she discovered she could daub me in glue too.  Who says autistic people have no resilliance?!

Oh good; more courgettes!

There’s a certain time of year in England when everyone’s conversation turns to the subject of what on earth can they cook with all their courgettes.  Even pathetic vegetable plot managers like myself seem to be able to produce a bumper crop with very little effort and there is a sudden scramble to find recipes to turn the maligned green vegetables into edible fare before their inevitable wilt.

The bumper crop!

It’s no surprise then, that this week’s activity was centered around, you guessed it, courgettes!

I found an incredibly simple recipe for courgette buns, which actually tasted nice as well, although disappointingly used less than half a courgette…

The Recipe –  makes 12 buns (helpful if you have leopard-print bun cases too)

40g grated courgette
110g self-raising flour
110g caster sugar
20g cocoa powder
2 tbsp vegetable oil
2 medium eggs

Ellen managed to practise her egg-cracking skills (successfully) and we got a nice turn-taking pattern established when putting the mix into the cases.

I now need to work on over-compensation.  Watching the video back I realise that I weighed out all the ingredients and Ellen is certainly capable of this…however with the amount of courgettes we have there will be no lack of opportunity to practise!

The final product

 

Raspberry Rippled

We’ve had a few weeks off Ellensdays over the summer and although Ellen doesn’t start college again until Monday, our RDI-focused activity days have begun again with a vengence.  Today we had a quadruple experience; not only did Ellen do her regular twenty minute job in the local shop and enjoy her weekly trip to McDonalds (doing excellent ordering) but we also made raspberry ripple icecream – from scratch http://www.bbcgoodfood.com/recipes/1508665/raspberry-ripple-ice-cream.

I came at the idea backwards.  Ellen loves visiting the local PYO farm in June to gather strawberries, so I looked to see what was in season at the moment and discovered that raspberries are apparently available into October.  Sure enough, they had plenty and by the time Ellen and I had worked ourselves up and down one row we had a punnet each of gorgeous raspberries and we only ate the ones that squashed as we pulled them off the plant – honest guv! Ellen loved it and apparently next week we’re going back for cucumbers…

The pickings

I found a good recipe which didn’t require an ice-cream machine and said it was simple enough to make with children.

I’ve never made ice-cream before and assembling the ingredients I can now see exactly why in large quantities it’s no good for the wasteline. Eggs, double cream and sugar appeared to be the main ingredients with the raspberries seeming rather incidental to the whole thing.  With puppies intermittently racing around the kitchen and Ellen continually asking me why I didn’t have any socks on (I had stepped in puppy wee – an occupational habit at the moment) we mixed the coronary-clogging brew.

Things went fairly smoothly until Ellen misinterpreted (whether deliberately or not I’m still not entirely sure) my instruction to put the bowl containing the sugar and the eggs on TOP of the pan of boiling water and poured the whole lot INTO the pan instead.  It was a moment which would have fitted right in to the Great British Bake Off.  After a few moments of surveying the scene whilst doing my very best to remain calm (remembering I was filming the whole thing for RDI) I dumped the entire lot down the sink and we started again.  At least it gave Ellen more practise at cracking eggs – in the end we got through a whopping 12 of them.

The second batch was completed without further incident.  The result was a totally trashed kitchen but a product which lookied remarkably raspberry ripple like – although it hasn’t yet competed its six hours in the freezer and is as yet untasted.

The finished product!

As a slight aside, here’s an updated picture of the puppies for those dog lovers amongst you – it’s been seven weeks since they were born – and it took five and a half weeks for Ellen to acknowledge their existence and allow one on her lap, but they are now so much part of the family that it will be hard to see them go to their new homes over the next few weeks.  Luckily we are keeping one – Brian

Brian is furthest on the right

 

 

 

Treasure Hunt at the Museum

I’m fascinated by mummies and everything Ancient Egyptian, so when I saw that the British Museum had a new exhibition on called : Eight Mummies, eight stories, I was very keen to go.  Then I thought – why not take Ellen on one of our Wednesdays?  The museum will be quieter and the British Museum is only a short walk from Euston station, all perfectly do-able…Hmm.

Since I booked the tickets about a month ago, I have many times wondered whether the whole idea was slightly bonkers.  The only thing for it was to plan everything to the nth degree.  I bought the exhibition guide in advance so that Ellen and I could look through it on the train, but I also decided to make a ‘Treasure Hunt’ list.  This was to be a short achievable hunt with only five items on it and with the help of the guide book I fairly easily compiled a quiz sheet which you can see in the gallery of photos below:

How was I to know that three of these items were in the first display cabinet and were very quickly found!  All the best laid plans etc.  Still I had the ace up my sleeve as Ellen had been told that if we did the treasure hunt and she was good at the museum then she could get a Burger King at Euston and eat it on the train home – talk about motivation!

The walk from Euston to the British Museum was actually longer than I thought, more like 15 minutes each way than the 5 I had remembered; but Ellen coped well and stayed with me on the journey.  We negotiated our way through the busy galleries (what’s happened to work/school?!) and found the right exhibition with little trouble. Our route took us through the gallery containing large stone Egyptian sculptures, many were animals, much to Ellen’s delight. At the exhibition itself Ellen actually seemd to really enjoy looking at the mummies and the skeletons and there was a lot of interactive stuff whereby she could spin a dial and see the mummy’s wrappings removed to reveal the mummified remains and amulets underneath etc.  Lovely gory stuff.

The first trip round was fairly swift, we ticked everything off the treasure hunt list and then ended up in the inevitable gift shop.  Who’d have thought that the gift shop would contain a soft toy?  Not me, but it did, a black ‘Egyptian’ cat which then accompanied us on a second tour round the exhibition as I wanted to make sure I got my money’s worth.

On the way home I told Ellen that my favourite bit was the painted mummy and she responded that she liked the tambourine (a sistrum). I think probably Ellen’s highlight of the day was Burger King, but to my surprise she did say ‘go to the museum again’ as we got off the train at our station. There’s certainly more to see at the British Museum, in fact a whole lot more mummies including some mummified cats and dogs. Which may give us an idea of something we can do with the ‘Egyptian’ cat on a rainy day 😉