Hide and Seek – in the pool


Our post-swimming hair dos

Our post-swimming hair dos

I don’t know why it’s only just occurred to me – seven months in – that one of the activities Ellen and I could do on a Wednesday is to go swimming.  Let’s face it it’s cheap (£2.70 including car parking), gives my couch-potato daugher some much needed exercise and going during the week in term time the place is practically empty.

We went to AquaVale in Aylesbury http://www.everyoneactive.com/tabid/1840/default.aspx  which has a great leasure pool split into four sections and includes a lazy river and lots of whirlpools, mini slides and jets.  An added bonus is it’s shallow all the way round.  Although Ellen can swim, she’s not a strong swimmer as despite many many hours of lessons she preferred to develop a technique all of her own.  In fact surprisingly she’s much better swimming under water than she is on top of it and loves pretending to be a dolphin.  I have to be a starfish, which is not that difficult as it involves lying on my back relaxing in the water.

Still working on coordination, swimming provided lots of opportunities to work together from getting changed to shampooing our hair at the end.  We put our goggles on and went underwater together and swam across the pool a few times (Ellen naturally won every time).  She wasn’t keen to jump in at the same time as me, we stood together on the edge of the pool but then she gestured for me to jump in first – which I did – feeling that this was something we could work on in the future.

The game Ellen loves to play in the pool though is hide and seek.  This can be a bit of a nightmare, especially if the pool is busy.  It wasn’t today, but for a while I couldn’t see how I could get any of my RDI objectives covered, until I realised what great motivation the game was for her.  Every time I found her I would say ‘let’s float together’ or ‘let’s jump in together’ before we hide again – and she did!  One round however, I was struggling to find her.  The lifeguard caught my eye ‘are you looking for the girl with the errr….’ ‘very bling costume?’ I replied (her costume is not-so-subtly covered in sparkly tigers).  He grinned back and nodded ‘she went that way’ he said pointing to the changing rooms and lo and behold I found her in the toilet!  After that we had a rule that the hiding had to be in the actual water and the friendly lifeguard was very helpful in pointing me in the right direction so there were no more mishaps.    To my astonishment, after she had hidden a few times Ellen said to me ‘now it’s your turn to hide’ and I was given a turn 🙂 something which has never happened before.  It felt like we were really playing the game together and Ellen had a great time, and so did I.

Another nice point from today was that Ellen was given an apron to wear when she works in the shop, just like all the other volunteers.  She wasn’t that keen to put it on at first, but I explained that it was part of her uniform and she could take it off when she had finished her work and she obliged.  I thought she looked very smart.

Ellen in her Volunteer's apron

Ellen in her Volunteer’s apron


Stroppy Strawberry Planting

Imagine that you are in a garden centre and you see a woman struggling to load a bag of bark chips onto her trolley whilst said trolley keeps moving away from her and her daughter (who had briefly been holding one end of the bag) looks on gigging. Is your expression one of bemused-amusement? I expect so, as that was what I saw on the face of the man who stood a few metres away, before he kindly stepped in and helped me get the bag safely stowed. Yes, welcome to coordination Ellen-style!

Today’s activity centred around planting up a tub of strawberry plants. Ellen loves strawberries, in fact they are one of the few fruits she will actually eat so I thought I was on to a winner. The idea was to visit the garden centre to actually buy the plants, soil and bark and then in the afternoon do the planting. I had a whole list of ideas for how we could coordinate throughout the task, from silly walking into the garden centre (who cares about a few stares…) to picking the plants, carrying the heavy bags of soil (ahem) all the way to the actual planting where we could make coordination fun with changing the ways we put the soil into the pot – sprinkling, chucking – you get the idea.

I knew it was a mistake to split the task over lunch. Ellen’s always more cooperative before the trip to McDonalds, but what with our weekly stint at the shop and a trip to Tescos to fit in, there was no way to avoid the dreaded afternoon shift – made worse by the fact that it started to rain.

I was right to dread it. Having done some lovely moments of coordination at the garden centre, including indulging me with my funny arm-swinging walk (we’ll forget about the ‘too heavy’ ‘too wet’ bag moment) when it came to the actual planting of the tub Ellen did not want to know. She had had her McDonalds and was an hour into the Little Mermaid. But if there is a golden rule of RDI it is ‘never give in’ and I didn’t – although as you can see from the photo – she was NOT amused!

Ellen is not amused

Ellen is not amused

I think my personal highlight was the moment when I was waiting expectantly with my trowel full of soil for Ellen to come and mirror what I was doing, but instead of getting the soil, she used her trowel to knock the soil off mine – unfortunately for her, the plan backfired somewhat as the soil went all over her trousers, I tried not to laugh…

On a positive note, today Ellen did the best McDonalds ordering ever. I didn’t overcompensate or interfere at all and the server understood her first time and got her order correct. She even got me a cappuccino :-). Here’s hoping that over the next few weeks I manage similar progress with the latest challenge.

So, as it would have been Shakespeare’s 450th Birthday today it seems apt to end with an appropriate quote from Hamlet, “We know what we are, but not what we may be.”


Co-ordinating Easter decorations

Ellen loves Easter.  Despite being on an almost exclusively dairy/gluten free diet, she knows that on the Easter egg hunt she can almost certainly cram in a bit of illicit chocolate and so she whizzes round the garden with her bag, picking up her ‘named’ items but also as many creme eggs as possible.  The easter egg hunt is pretty much the highlight of Ellen’s year, so as you can imagine she is really looking forward to the coming weekend.

I tried to harness this enthusiasm when planning this week’s RDI activity.  Following on from our annual assessment, we have moved onto a new goal which is to get Ellen to co-ordinate her movements with ours.  This means she has to watch and wait and be aware of what we are doing and actively seek to co-ordinate with us – not something she is used to doing!  Our RDI consultant had managed to do complete a few successful co-ordination activities with Ellen – so the challenge was on, most particularly for my brain which often finds it difficult to come up with interesting ideas- if you have any please let me know :-).

Every year I create a rustic Easter display in the kitchen.  I say rustic because although aiming for artistic it almost always falls a bit short.  I walk out along the lane to find a suitable branch and then randomly decorate it with some Easter-related objects (although the mini ice cream might be stretching it a bit far).  The plan was for Ellen and I to hang the decorations on at the same time – simple I naively thought.  The first attempt was a disaster.  The branch I had found was not brilliant and was unstable from the beginning.  Ellen wanted to get back to her video and so tried to hang the decorations on as quickly as possible – ignoring my ‘you’re going to fast’ and  ‘wait for me’ verbal prompts.  Decorations fell on the floor, the branch broke and I was left trying to hold the branch up with one hand, a decoration in the other and watching Ellen’s receding back as she headed out the door.

Determined not to give up, I went out and found a better branch.  I trimmed the branches so that it was easier for Ellen to get the decorations on and I waited for a time later in the day when Ellen was relaxed.  This time round went much better, there was even a moment of social referencing when Ellen looked at me to make sure I was ready to hang my decoration.  The result is perhaps not quite as ‘Ideal Home’ as I would like, but I’m keeping it just as it is.  Happy Easter everyone!

Posing with the finished article



Lay a little egg – for my phone

Ellen has a heavy cold.  It started coming out on Tuesday, the day we were booked for our RDI Annual Assessment.  The assessment did not go well.  Resistance levels were high and time was short.  We limped through the play doh ‘warm up’ task I had brought with me but things rapidly went downhill through the ‘musical instrument’ activity (I ended up lying on the floor on my own banging a drum) and the ‘puzzle’ activity (I was not allowed to hold any pieces of puzzle).  Finally at the ‘pictures’ experience sharing round Ellen threw all the pictures one by one over the stair gate.  I guess she was sharing her experience.  Suffice to say I felt a bit deflated.  Especially as, having reached the peak of her annoyance and frustration with me, she then completed her tasks with her Dad without any resistance at all – grrrrr.

By Wednesday – the cold was in full flow, but buoyed by the idea that she was too ill to go to respite, Ellen’s mood was fairly sunny. We went along to the shop to complete our morning work and they had a new job for us – labelling the eggs.  The shop has jumped into the 21st Century by investing in a new bar-code reading till and thus all stock now needs to be bar-coded.  They apologised that no-one had had a chance to label the eggs in advance – obviously without a clue that this kind of job is perfect for someone with autism.  They were soon educated however, as not satisfied with labelling just the two boxes which needed to be put out on the shelves, Ellen insisted on bar-coding every single box of eggs in the store cupboard!  Somehow I get the feeling that bar-coding may well become a weekly feature on Ellen’s list.


Ellen's bar-coded eggs

Ellen’s bar-coded eggs

RDI has made me realise just how much I over-compensate for Ellen in everyday life and not just verbally; so I’ve also started to try and extend Ellen’s practical skills.  With this in mind, when we reached home after the shop, I gave Ellen the key to open the door. She got the key in the lock without any issues, but opening the door requires the key to be turned with one hand and the door handle down pushed down with  the other hand.  At the moment Ellen is struggling with the co-ordination, but of course she has the ultimate motivation to get in to her videos and toys so watch this space!

Ellen trying to open the front door

Ellen trying to open the front door

Despite having a bit of a temperature and being full of cold that afternoon, Ellen was still up for chips.  Due to it being a busy evening without much time for cooking; we called into the local fish and chip shop and Ellen asked beautifully for the chips – although slightly getting mixed up with her usual McDonalds order – she said very clearly ‘I’d like plain chips please’.  Instead of fish she decided she’d like a fried egg with her chips and suddenly perking on the way home (perhaps because of the wrapped bag of precious carbohydrate she was clutching), she suddenly started singing ‘chick chick chick chick chicken, lay a little egg for my sock’.  Not quite the standard version of the song, but she thought it was hilarious and the chicken laid an egg first for her sock, then her trousers and finally for my phone.  By this time we had made it home it had morphed into this little song:-

Ellen: ‘Chick chick chick chick chicken, lay a little egg for the phone’

Me: ‘Squawk!’ (in a chicken-like manner)

Ellen: ‘Chick chick chick chick chicken, I want to eat the phone’ (mass giggling)

Me: ‘No!’ (the more horrified the better)

Me: ‘I haven’t had an egg since Easter and now it’s time for tea – so!’

Ellen: ‘Chick chick chick chick chicken, lay a little egg for the phone’.


Ellen and her chips - my phone is kept at a safe distance!

Ellen and her chips – my phone is kept at a safe distance!

I was so befuddled by the time I got home it’s a wonder I didn’t fry up my mobile phone for her.  It’s given me an idea for Easter though….


Onesie Wednesday

Today is World Autism Awareness Day and our local Community Shop kindly held a coffee morning selling Gingerbread Men dressed in onesies to the generous folk of Wilstone.  It surprised me, but I guess it shouldn’t have (considering that NAS estimates 1 in 100 people have autism in the UK) but the vast majority of customers who came to the coffee morning either knew someone with autism or had worked with special needs kids.

The gingerbread men in their onesies

The gingerbread men in their onesies

Everyone was talking about last night’s Horizon programme ‘Living with Autism’.  Most people had watched it (so many people are interested in learning about autism) but were confused because none of the autistic people on the programme were anything like Ellen, they were far too able.  A quick glance at Twitter suggests that a lot of people who live with autism feel the same way.  ‘Enforces stereotypes’ and ‘did not delve into the complexities’ were just some of the tweets I saw.  Slanted programmes like that, which only focus on one end of the spectrum, do not give a full picture of what autism is actually about and it was great to be able to set the record straight – even if only to a handful of people!

Of course for Ellen the coffee morning was a bit overwhelming, as although I had told her what was going to happen I don’t think she fully understood what would be involved – and particularly the number of people who would be in the (usually quiet) shop.  She came along to do her usual shelf stacking but everything was different and it took her a while to process it all and she did get a bit stressed at one point… beautifully illustrating autism for those at the coffee morning.  We persevered however and in the end she did manage to put five items out on the shelves (and of course nab her Milky Way on the way out).

Ellen decorating the gingerbread men

Ellen decorating the gingerbread men

Today was a day when non-verbal communication really came into its own.  As Ellen’s senses were overwhelmed by the dynamic situation she found herself in, it really seemed to help her not to have to worry about communicating verbally with me.

As soon as we got back home Ellen was back to normal and later on did her best McDonalds order ever.  She was even disappointed when I finally took the onesie off – for some strange reason seeing her mother dressed as a zebra didn’t cause any anxiety or stress at all – what must I look like to her usually I wonder?