Grumpy Christmas

Ellen loves a villain. Her favourite character in Cinderella is Lucifer, in the Little Mermaid it is the evil Ursula and she laughs like a drain as wicked Forte (in Beauty and the Beast) tries in vain to stop the spell being broken.

When choosing her favourite dwarf, Grumpy gets top billing, so it’s no surprise that her favourite character in Spongebob is Squidward. Squidward, for those not familiar with the American cartoon, is bad tempered and miserable and he is also Ellen’s alter-ego.

The rest of the us are included in the metaphor. I’m Spongebob, Daisy is Patrick and Richard has been designated Krusty Krab, which, as he points out in vain, is actually a fast food restaurant, not a person, but most dinner times Ellen still calls out ‘Krusty Krab have a drink!’ much to everyone’s amusement.

We have been decorating a window in our house as part of a Living Advent calendar project in our village. With the 2020 we’ve all had, it’s an especially lovely idea to try and spread a little joy. Households who wish to be involved take a number, decorate a window and then a map guides villagers around the festive route. We are number 12, so our Christmassy design includes a family collage of 12 drummers drumming. There are five of us, and four animals, but that left 3 drummers without faces. We had a lovely afternoon painting our drummers and it wasn’t a difficult decision to decide on the identity of our last three drummers.

You guessed it, we now have Squidward, Spongebob and Patrick on our window display. Ellen loves it and I think Squidward’s expression perfectly reflects the country’s mood!

Christmas is grumpy

Halloween – Quickly

We all know that Halloween is not going to be its normal self this year. But the only bit Ellen usually enjoys is making the pumpkin (and eating chocolate) – and both those things we can still do.

I had two objectives for the activity.

(a) for Ellen to think about emotions when drawing the face. Was our pumpkin going to be happy? Grumpy? Spooky or something else?

(b) I was planning to get very tired cutting the pumpkin and was going to see if Ellen would leap to my rescue with ideas of how to help.

I ruminated about how the pumpkin was feeling, careful to make statements and not ask questions. Ellen took the pen off me and drew a face in about two seconds flat.

‘Oooh’ I said ‘I wonder how this pumpkin’s feeling’.

Nothing

‘He has a very wobbly mouth, maybe he’s feeling a bit worried.’

Ellen shook her head vigorously.

‘In that case he must be feeling a bit spooky’. Again the shake of the head. This went on for a few minutes, until Ellen must have been completely fed up with me and said

‘Quickly’.

‘Ah so the pumpkin is feeling…quickly?’

Ellen nodded.

It was actually quite difficult to carve the quickly pumpkin, mainly because it was so small. I had no choice on size, it was literally the last pumpkin the the shop. I carved the eyes and then Ellen spent quite a long time happily scooping out the seeds. My idea of making soup out of the insides evaporated as the pumpkin seemed 98% stringy flesh. I moved onto stage 2.

‘My arms is feeling quite tired now. I’m not sure I can carve his mouth’. I paused. Nothing, Ellen continued to scoop.

I put the knife in and then dramatically dropped my arm with a sigh ‘this is so difficult.’

Ellen handed me the scissors.

‘Good idea’ I said ‘but I don’t think they’re going to work’. I mimed cutting the pumpkin ineffectually with scissors.

Ellen was now completely fixated on getting every last seed out of the pumpkin. All my sighing and rubbing my arm and saying I couldn’t do it were to no avail. Ellen just kept handing me the scissors and scooping. I was stuck in my declarative language loop and couldn’t see a way out of it without asking a direct question.

In the end after some non verbal language and a bit more scaffolding, Rich finally read the situation and came to my rescue.

‘My arms isn’t tired, I could finish the mouth’ he said. Hallelujah!

I was definitely feeling quickly after all of that.

This is how you look when you’re quickly

What’s in a name?

This week Ellen had her annual review with Herts County Council. It was conducted over Zoom with a social worker I had never heard of before, and wouldn’t recognise again. Her screen was positioned so that I spent the hour-long conversation only able to see her forehead and the large poppable spot that was centre stage of the screen and very distracting.

The social worker, let’s call her Dinah, had insisted that Ellen was present on the Zoom call, even though a cursory look at the notes would have confirmed that it would be a waste of time because Ellen is mute with strangers and so wouldn’t contribute. ‘I need to ask her a few questions’ Dinah insisted. I kept my sigh as internal as possible.

So there we were, staring at the spot at the allotted time and making our introductions.

‘Hello Molly my name is Dinah’ she began.

‘Ellen’ I interrupted, ‘her name is Ellen’.

‘Oh yes, Ellen, sorry yes, I don’t know where I got Molly from, I don’t even know anyone called Molly. So Ellen, I’m just here to talk to you and your Mum about all the activities you do in the week, is that OK?’

Ellen shook her head and looked at the floor and I could tell she was in imminent danger of bolting.

‘Do you like going to Sees the Day Ellen?’ Dinah persevered.

‘No’ said Ellen, getting up and leaving the room.

I saw a furrowing of Dinah’s forehead as her eyebrows lifted in surprise.

‘She doesn’t mean she doesn’t like going’ I said, ‘she just doesn’t want to take part in this conversation any more’.

‘Oh, well that’s OK, I understand. I can carry on asking you if you like, does Molly enjoy Sunnyside?’

‘It’s Ellen’ I said, ‘her name is Ellen’.

It was becoming a bit of a farce. When someone can’t remember your daughter’s name – after being corrected twice – it’s hard to summon up the feeling that they care.

It turned out the main reason for the phone call – once we’d quickly agreed that there was no need to change any of Ellen’s provision – was that the pandemic had initiated a panic within County that they could suddenly be left caring full-time for a huge number of people with additional needs.

‘In the circumstances that you and your husband are left incapacitated’ Dinah began carefully (for ‘incapacitated’ read ‘dead’) ‘who would we contact regarding Ellen’s care?’ The fear was palpable. I took pity on Dinah and gave her my sister’s details.

At this point of the conversation I decided it was not worth mentioning that someone else from Herts CC had called about this just a couple of weeks before. On that occasion the purported reason for the phone call was to find out how I was coping during lockdown. However, as lockdown was at that point over, and therefore so was any crisis I may have had, the caller quickly moved on to the real reason for the call, to retrieve the vital ’emergency point of contact’ information

Later in the week, the report from Dinah arrived.

Dear Mrs Fermont, (the email began) it was lovely to see you and Lucy…..

Lucy ! FGS – I wish I was making this up!

Get my name right please!

Deliciously Ella may need a re-brand

For the last few months we have been working on a new RDI assignment entitled ‘concern for guide’s distress’. Here are our goals:

• Ellen to recognise when the guide is feeling unhappy and seek to react appropriately.
• Ellen to  distinguish between her own emotional state and that of others.
• Ellen to display concern about the guide’s expressions of distress (e.g., sad look, ‘’I’m sorry’’),
• Ellen is capable of a wide variety of helping behaviours (e.g., verbal or physical comfort, sharing, and distracting the person in distress.

This is a very tricky area for Ellen who only really expresses sympathy and recognition if bandages or plasters are in evidence.

It’s also one of those objectives that you can’t really plan for whilst still being authentic. For example, I tried to be very upset about the number of dead flies on the windowsill. Ellen just looked at me as if I was going mad and wiped them off with a cloth. Richard got extremely worried when his hands became mucky when he was gardening – she just told him to ‘wash them.’

Happier food times

One evening, Richard cooked a paella recipe from Deliciously Ella’s new book Quick and Easy. Packed with flavour and fresh vegetables it was absolutely delicious. Ellen however, came to the table, took one look at her plate and said:

‘She can’t eat that it’s too horrible for her’, picked up the plate and moved it firmly to the side. There was a stunned silence. Ellen never refuses to eat anything, if she doesn’t like something she picks around it, but still has a go. This was the first time we had received a total refusal.

‘That’s rude Ellen,’ Richard said ‘at least have a try.’

‘She can’t, it’s too yucky’. She said, folding her arms militantly. Daisy and I were trying not to laugh. Richard, who had cooked the meal, was understandably annoyed.

‘Poor Dad’, I sad, ‘he’s very upset that you don’t want to try his cooking’.

Richard made a sad face.

‘Sorry Dad.’ said Ellen, not sounding sorry at all.

A plate of plain rice and some fried eggs was cobbled together and placed infront of the unrepentant Ellen.

‘That’s much better’, she said, picking up her fork and eating with gusto.

We have, it would seem, some way to go on this one.

Mindful Bed Changing

I watched a brilliant video this morning called ‘Communication for Mindfulness’, (thank you Think Autism) which was a timely reminder of some valuable communication tools when guiding.

1. Slow down and step back. Pause, wait up to 45 seconds – an eternity! – for Ellen to process and respond.
2. Use declarative language over instructional language as much as possible.
3. Swap direct prompts for indirect prompts.

We’ve been changing Ellen’s bed with her for several months, slowly trying to withdraw so that she takes on more of the task herself. This morning, spurred on by the video’s depiction of best practice I decided to give it a go. Ellen was deeply engrossed in a Brum video.

‘Easy Peasy’

I start in a bright voice:

I’m going to get the sheets out so we can change the bed!’

There is an interlude of around 2 minutes

‘I’m ready now to change the bed!’

An interlude of 10 minutes follows, during which I put clean sheets on my own bed, tidied up the coffee mugs and rescued a cricket from the bathroom floor.

‘I really need some help changing this bed!’

Finally I hear Ellen sighing heavily and stomping up the stairs.

After she’d finally given in to my increasingly jolly ‘statements’ from the landing, Ellen got on with the job in hand. She shook her pillow out of the pillowcase and stripped the duvet. Taking off the bottom sheet falls to me because Ellen has around one hundred soft toys on her bed, which she hates being disrupted. It’s obvious they all have a particular place, and she very carefully returns them to order once the weekly ordeal is over.

Building resilience with the pesky buttons

Ellen put her new pillowcase on and helped with the duvet. All the time I tried to talk as little as possible and used non-verbal language or statements rather than direct instructions.

Ellen finds buttons very difficult, but we worked on these together in companionable silence, I held the buttonhole open so that she could put the button in half way and then I held it in place so she could readjust her grip and pull the button through.

We put the duvet on the bed, the correct way up and then faced the depressing task of slinging all the soft toys back on top. I wondered suddenly whether declarative language could work miracles with the toy mountain. I picked up a small floppy tiger, moving its head with my fingers.

‘I’d like to sit on the shelf’

This time it took only about one second for Ellen to respond, No! she said, grabbing the tiger from me and slinging it onto the bed.

‘The bed’s too crowded for me‘. I said, trying again with a blue penguin.

The penguin flew onto the bed. It wasn’t even a second this time.

The toy mountain

The mountain remains.

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…

Week 9 is a picnic

So, we’re at the end of week 9 of lockdown. The easing of some restrictions hasn’t benefited Ellen so far. Her weekly activities are still closed, as are the shops she likes going to; HMV and the Disney Store (hooray!). A few McDonalds have opened for take-away and we did make a 30 mile round trip to our nearest one, but the whole thing was so time consuming, and raised Richard’s blood pressure so dangerously high, that we won’t be attempting it again any time soon!

The day centres are doing a sterling job of dropping round ‘activity’ packs for their service users to do at home. These consist of things like word searches, colouring, sequin art and sunflower and veg seeds to grow. We also received a pack with everything we needed to make a sock monkey, although sadly neither my nor Ellen’s sewing skills were even remotely up to scratch and I was much too embarrassed to post a picture of the result onto the facebook group.

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  Can you tell what it is yet?

We have had zoom sessions of craft, cooking and karaoke. These have been hit and miss, as Ellen just gets up and leaves when she’s bored, which can be after either 5 minutes or 20 – we have not yet got to the goodbyes. Ellen usually enjoys watching (not participating in) karaoke and I had high hopes for this session. After two songs however, Ellen had still refused to look up from her sequin art, or answer when she was asked what song she’d like to have next. Then my phone rang and as I took the call in another room, Ellen stormed in with my laptop, closed it in front of me with a ‘humph’! and flounced out.

This week, we were sent everything we needed for a tea-party picnic. There were ingredients to make hedgehog bread rolls and carrot cake muffins. We had bunting to decorate and assemble and some games including ‘pin the tea-cup on the saucer’ and ‘teapot bingo’. Ellen reluctantly helped make the food and the bunting, (after all it wasn’t burgers or chocolate cake) and she also hates eating outside. In the end she was lured to the patio with the promise of having her face painted. Basic Heffalump was the one deemed to be best at playing bingo, and so face painted she joined in with a bit more gusto. Half the bingo pieces blew away in the wind and Ellen cheated at ‘pin the teacup’ by blatantly looking which all added to the tea-party’s ‘Mad Hatter’s’ charm.

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  Basic Heffalump the bingo caller

If anyone’s interested, the only M&S seedlings that germinated and lived from the planting in Week 1 were radishes which have now been moved to the veg plot. Six seedlings apparently equals six radishes, which doesn’t seem a great return on the watering investment so far. Maybe we’ll have better luck with the sunflowers, although I hope by the time they’re flowering Ellen’s timetable will have returned to some sort of normality, else we won’t be acting when we have our next Mad Hatter’s tea party.

It’s never too late…hopefully!

‘M’ for ‘McDonalds’!

Ellen learnt some Makaton when she went to a special school for her secondary education. Of course, the school never mentioned the fact that they were teaching her this new form of communication, nor did they offer us any training so we could reinforce her learning at home.  It seems unreasonable to expect a school teaching communication skills to its learning disabled students to have any skill at communicating with the parents, and they certainly didn’t.

Still, we knew she was learning something because she started signing a few words – ‘McDonalds’ of course and ‘finished’.  ‘Finished’ was always signed with a particular vehemence when she’d had enough of whatever enriching activity we were trying to engage her with.

So I’ve wanted to learn Makaton ever since.  It’s a bit embarrassing to admit that this is something I’ve put off for at least 10 years.  The Lockdown has prompted Makaton to develop online courses  and enforced much more family time than usual. These coinciding events have resulted in Daisy and I completing our Level 1 training over two morning sessions. 

Makaton isn’t communication instead of talking, you speak at the same time as signing and it’s multi modal; there are symbols that can be used to support choices and concepts.  I used to use symbols with Ellen when she was younger, these were particularly useful for social stories and daily routines and I still sometimes put a few pictures in when I’m writing a social story about a holiday or a major event that I know she’ll find challenging. Although Ellen’s speech is a lot better than it was 10 years ago, she still prefers to use non verbal communication, especially with people she doesn’t know well. So learning Makaton is still relevant, I just hoped that she hadn’t given up with it after signing for so long to people who had no idea what she meant. 

Luckly, Ellen has an incredible memory and doesn’t seem to have forgotten anything she learned all those years ago.  After our first session we were struggling to remember the sign for ‘G’ and Ellen immediately modelled it  correctly for us.  We obviously need to practice.  The plan of action is to think of five sentences that will be most useful to use signs with and start with that, see how it goes and then expand out.  Our five sentences are

What would you like for breakfast?

You’re very loud can you be quieter please? (Daisy requested)

Come here please and wash your hands

No more TV

What would you like to drink?

I tried the first one out this morning.  “What would you like for breakfast?’ I asked, as she came into the kitchen to plug her mobile into the charger.  She looked at me with complete annoyance and shouted ‘nothing’ whilst slashing her arm down rapidly in the perfect Makaton sign for ‘no’ or ‘nothing’.  I got the message.

 

 

Week One in lockdown

Ellen has no idea what Coronavirus is, and is not at all anxious about catching it.  This is a good thing, I know.  This week all her activities outside of the house have stopped and this would be fantastic for Ellen if the shops and McDonalds were not shut as well and she was not having to stay at home 24/7.

It’s been a week of adjustments and finding out what works and what doesn’t work. I’m keen to make sure that she limits her screen time, but equally I still need to work and can’t give her my full attention all day – so I’ve created a family calendar to try and spread the chores and the activities out over the week and to also delegate to other family members in a ‘we’re all in this together!’ spirit.

Things I have learnt so far:

• Joe Wicks’s daily PE for kids is knackering and Ellen hates it.  Unless your autistic adult has lots of energy to burn and has excellent gross-motor skills, give this a miss.  We are opting instead to follow the gentle yoga session run via Instagram by The Inclusion Project.
• Making multiple trips to M&S for my self-isolating oldies has meant we have a burgeoning mini-garden.  Ellen enjoys planting them because they are very small and she can finish the job quickly.  I’m not sure how good a job we’re doing as at the moment, nothing has germinated. So don’t pin your hopes on feeding the family this way!

Quick and Easy!

• It was a mistake to give up chocolate for Lent.  The only thing Ellen wants to make is chocolate cake, preferably whilst face-painted as a heffalump.
• Just because she’s stuck at home all day, doesn’t mean Ellen is going to be any more keen to do things that she doesn’t normally like to do.  Dog-walking and de-cluttering the DVDs sessions have been removed the planner.
• It’s not all about the task!  We have made a couple of birthday cards that have ended up looking nothing like they were supposed to either through a lack of materials or lack of skill. But Ellen has really enjoyed these crafting activities so if you’ve a Birthday coming up, you may be a lucky recipient.

Will they, or won’t they?

It’s great that so many people and groups are sharing online resources for free – let’s just hope I can keep up with it all!

 

More Tigers?

As readers of this blog will know, Ellen loved her 21^st Birthday trip to Kenya two years ago, but was slightly disgruntled that there were no tigers in Africa.  Luckily for Ellen, her sister chose to spend her own 21^st Birthday on a tiger safari in India.

Long plane journeys are always an issue for Ellen.  She loves take-off but then immediately wants to land, and the constant ‘she wants to get off’ and ‘back to my home’ on a 9-hour flight gets wearisome in the extreme.  For the first time when travelling with Ellen, we had been given a sunflower lanyard at check-in, which signals to staff that the wearer has a hidden disability.  Of course, Ellen refused to wear it and I’d rather distractedly put it round my own neck.  I was amazed when Paul the air steward approached me, said he’d noticed my lanyard and did I need anything?

Ellen happily pointing to where she was sick

Once I’d pointed him in the right direction, Paul’s interaction with Ellen was brilliant. He addressed her by her name and spoke directly to her, not looking at Rich or I for confirmation.  Nothing was too much trouble and he made us feel comfortable and welcome (so unusual it’s noteworthy).  He found her extra blackcurrant juice and was completely unfazed when 30 minutes from landing she vomited down her seat. I later found out that British Airways were awarded an autism-friendly award in April 2019 – and it showed. After being sick, Ellen was incredibly happy and kept talking about how she was sick on the plane and where the sick went.  Luckily we didn’t have much time for this new refrain, which however monotonous, was at least different from ‘I want to get off!’

I’ve found monkeys!

Finally arriving at Kahna Earth Lodge in central India, Ellen was delighted to find a group of monkeys in residence in a tree outside her lodge, and so the tone was set for an amazing few days.

Confronted at the communal mealtimes with soup, salads made of tomato and pineapple and spicy curries, did not faze Ellen.  Things that she wouldn’t even consider eating at home, she was willing to try.  She ate the soup, picked the bits out of the salad that she liked and had a go with all the curries – even imitating us by tearing up her roti bread and dipping it in the sauces.  Anything that looked too suspicious was instantly dismissed, although she nodded every time she was offered extra rice.  Even the very attentive staff at Kahna Earth Lodge were hard-pressed to keep her water glass filled, one meal alone she must have drunk 8 glasses – making up for her otherwise limited drinking during the day.

Tiger spotting

The tigers of course, she absolutely loved.  She was incredibly hardy and rode over the bumpy tracks without a murmur while Daisy and I were shrieking and hanging on for dear life!  Our guide had told us that at this time of year we could expect to see a tiger once in every 2/3 safari drives, and we saw 6 tigers (including 2 cubs) in 5 drives so counted ourselves very fortunate.  This good fortune was completely lost on Ellen, who demanded ‘more tigers’ after each and every sighting!  She got up early without complaint, climbed into the jeep without hesitation and waited patiently for the park to open at 6.00 am.  This confirms how happy she was to be out spotting animals.

Iron-bladdered, she didn’t go to the toilet at all on safari until the final drive.  The emergency arose after one of her ‘eight glasses of water’ lunches when we were in a remote area of the forest.  There are a couple of lunch spots with rudimentary toilets, but the rest of the time the facilities consist of bamboo screens adjacent to the anti-poaching lodges which provide privacy to the squatter.  Ellen was obviously desperate and even more so after we had driven fast over bumps for 15 minutes to get to the screen.  She was so desperate in fact that after initial baulking at the lack of a toilet, she let me hold her arms while she peed al-fresco – luckily it wasn’t anything ‘more serious’ as there was nowhere to discretely kick anything.

Safaris are completely addictive.  Now we are on our way to Goa for the beach-part of our holiday, I’m rather hoping Ellen will complain about not having seen gorillas, jaguars or orang-utans…

The end of the safari