All a Matter of Trust

So on Tuesday I went on an adventure. I’m sure, to many of you, a shopping trip would not be classed as an adventure, but this one was, for any number of reasons.

A shopping adventure!

I went with my friend Eleanor (@thesaltedtail) and our mutual friend Sam into Norwich to buy a toy white pony. This was at Sam’s request - something to do with Mr Tumble - so we sallied forth, in a state of unbridled (forgive the pun) excitement.

Our boy!

I have written about Sam before. He was a pupil in my class until I retired, and has since become my friend. He is thirteen, almost fourteen, has severe autism and a host of associated difficulties and it is fair to say that Eleanor and I love him. It is also fair to say that we don’t ‘play safe’ when we take him out - ice skating, ten pin bowling, new places to eat - and he invariably copes with all that we throw at him!

On the bus

It wasn’t until I was looking through the photos that I took yesterday that I thought about how amazing Sam is. From the point of view of ‘autism professional’, we broke all the rules yesterday, and it could, and probably should, have been an unmitigated disaster. We used no visual supports, he had no timetable, we took him into a shopping centre and overloaded all his senses and even decided, at the last minute, to take him on the Park and Ride bus. And yet he coped. 

Phew, not too busy...

He happily rode upstairs on the bus, saying ‘cheese’ for the selfie, and looking at the things we pointed to out of the window. He used an underpass, following our direction, as well as escalators. He navigated crowds of people without invading their personal space or holding onto our arms, and entered the hell that is the Build a Bear Factory far more happily than I did! Fortunately it was quiet and Sam was able to identify the white pony he wanted and take it to be stuffed. 

This is the one!

I have to say at this point that the girl in Build a Bear was brilliant. Not patronising or over-compensating, just matter of factly helping Sam stuff his pony and instructing him on not touching hot things and waiting while she finished stitching. Just as she would anyone else. Perfect. 

Of course his name is Cecil...

Sam duly typed out his pony’s birth certificate (White Pony Cecil) and proudly carried his purchase from the shop.

Lunchtime

Then lunch in the mayhem that is a shopping centre food court. So many choices. So many places to get chips and gravy. And yet Sam happily accepted a jacket potato with cheese and beans, eating it beautifully while White Pony Cecil looked on. Feeling more confident and embracing the ‘what else should we do’ vibe, Eleanor thought it would be nice for Sam to choose a birthday present for his sister. After texting his Mum for ideas, we set off to the toy shop. 

So many things!

More overwhelming lights, small gangways and brightly coloured ‘stuff’ piled high on shelves. Sam was fascinated by everything with a number or alphabet on it, but managed to choose a gift, pay and leave as if he did it every day. We’d promised him a brownie, so we visited Eleanor’s shop so he could choose one. Then, rotters that we are, we told him he could eat it on the bus. And yet he accepted this, even letting us take him into Tiger, just to look at all the cool things. He chose a pull toy for his dog and paid for that too, before catching the bus. It was only on the bus that he got a bit noisy, but I think that was the sugar rush of a brownie!

So proud!

Honestly he was brilliant, and we were both so proud. We’ve already decided we’d like to take him clothes shopping, although he’s rather keener on getting a saddle for White Pony Cecil! 

So why wasn’t it a disaster? How did Sam cope with all of that without a melt down, or at the very least a refusal to wait for his brownie? It is true that we have learned to give Sam lots of time to process verbal instructions and information, and Eleanor had checked that White Pony Cecil was in stock, but what it really boiled down to was trust. For the past five or six years we have worked at building relationships with Sam that are wholly based on trust. He has learned that we mean what we say and will follow through. In the early days this could be challenging, but by persisting and being consistent, Sam has come to trust us. If we say he will get to eat his brownie on the bus, he knows we will let him. If we say he will be fine, he believes us, even when we are pushing his feet into ridiculously rigid ice skating boots! 

Definitely needs a saddle!

I like to think I taught Sam a great deal while he was my pupil, but the ability to trust has perhaps been the greatest gift, and one that will hopefully support him as he gets older and moves towards more independence. Sam has a brilliant family that love him dearly. And he knows this and tests the chinks in their unconditional love armour at every turn. My children were certainly always better behaved when they were with someone else!

So, my message to all the teachers and support workers out there, about to start working with a child with autism in your setting - be consistent, mean what you say and don’t say things you can’t follow through. Use all the tools that research tells you will support their learning and their understanding - it’s these things that help them to feel safe. Develop ways to communicate, and always listen and acknowledge what they are saying- even if they’re telling you they want a balloon in the middle of a maths lesson. You don’t have to give them a balloon, just let them know that you’ve ‘heard’ them. Yes it’s relentless, yes it’s tedious, but the outcomes can be amazing. Every child with autism is different, they all face different obstacles to learning every day and some may continue to express their anxieties through challenging behaviour.  But don’t you think that the very least they deserve is someone in their corner that they can believe - someone they can trust when they say, ‘Come on, just try, you’ll be fine.’ Trust - if only we could bottle it.

Children are Always your Children!

‘We get 18 delicious summers with our children. This is one of your 18. If that's not perspective, I don't know what is’

My idea of a 'delicious summer'!

This quote  has been widely shared on social media, particularly as the long summer break gets closer. My attention was drawn to it by someone I follow on Instagram (@Ned in the Clouds) who has two young children, one of whom has autism. She rightly points out that not all children will be able to fly the coop the minute they turn eighteen - they may well need support to enjoy ‘delicious summers’ well into adulthood. But even if this is not the case, what does it say about all those moments you are currently sharing? Are your children counting down their years until they no longer have to endure a Eurocamp holiday or family picnic? Of course not. My children are now in their thirties (whisper it quietly but one of them still lives at home, albeit with his girlfriend and a plan to  save for their own place) and we still have a good time together.

Good times!

Over the past ten days I have enjoyed a weekend visit from my daughter, now a proud house owner ‘oop North’, and a wonderful day with my son.

All the ticks!

Beth and I spent lots of time on the beach with her dog, and had a glorious walk in the woods, collecting ticks! (Ugh - I love nature, but cannot, for the life of me, see the purpose of these hideous blood sucking creatures) We had a family barbecue, made a coffee last an hour in Costa, and watched the England v. Panama game together - cheering, shouting and saying ‘We never score from corners’ every time England were awarded one! 

Apparently we do score from corners!

To be fair, my son and I spend less time together these days but, on Wednesday, we had a real adventure. Danny Boyle has been shooting his latest film, written by Richard (Notting Hill) Curtis, in and around Gorleston and put out a request for 5000 extras for a beach concert scene. I applied for tickets when I saw it on the Book of Face, but assumed I had been unlucky, as I’d heard nothing more. By chance, on Sunday evening, I checked my junk mail, and there were two tickets! Normally my hubby would have come with me, but was in London for a meeting, my sister had other stuff to do that day and I am sadly lacking in non-working friends so thought I’d either miss out or go alone. However…against all the odds my great big hairy son said he’d spend the day on the beach, with his Mum!

Open-topped park and ride!

And what a day it was. We had ‘park and ride’ tickets and as we queued for the bus I saw that one bus was an open-topped double decker. I could not believe it when it turned out to be our transport! I’d just got over that excitement when someone handed me two tickets - one for a free burger and one for a free ice cream! Sod being in my sixties - I felt about ten again!

Free food excitement!

The atmosphere on the beach was brilliant - the sun was shining, there was music playing and there were thousands of smiling faces. 6000 to be precise - apparently the most extras used in a film in Britain. I filled up at one point - it was emotional to be a part of something this special. Danny Boyle directed us to ‘go mental’ when we saw the protagonist of the film - a musician who lived in a World where he is the only person who knows about the Beatles - perform a song that we’d never heard before. A punk version of ‘Help’ - so hard not to join in!  

Part of a crowd

Anyway, the crowd, including my lovely Aunty, who is in her late eighties, duly ‘went mental’ several times, for different ‘takes’. It was especially exciting as a helicopter filmed us while we jumped about like mad things, its shadow appearing across the front of the hotel being used as the stage. I maybe shouldn’t mention the fact that my Aunty looked up at it and, like the apocryphal penguins gazing at an aeroplane, fell over backwards! Luckily she fell onto Jake’s blow up chair, so only her dignity was damaged!

Easy to spot, and Aunty-catching!

It was an amazing day - we managed to spot ourselves on the local news (note to self: the camera really does add at least two stone!), and now can’t wait for the film to be released. My son’s Aunty-rescuing blow-up bed is bright orange, so we should be easy to spot! 

It’s difficult to explain why it felt so special but it has something to do with being a part of something, part of a crowd with one purpose. Similar to watching football I suppose.  But for me, what made it really special was being there with my boy. The fact that he spent his day off with me means as much to me as anything else. That, and the fact that it didn’t cost us a penny - best freebie ever!

Delicious!

So yes, appreciate your children / grandchildren while they’re little. Do lots of nice things with them and create masses of glorious memories. But remember that, when they’re grown up and living their own lives, the time they choose to spend with you can be even more special - it may even be ‘delicious’

What Makes Me Me?

Last week my daughter went on a photo shoot with her new job. She had to take a selection of items that ‘summed her up’ as a person, for the company website. Afterwards she commented that her layout just made her look like a hoarder. There could be something in that - she does like collecting things - but really what it showed was what a varied and interesting life she leads.

It started me wondering about what I would use to show the essence of who I am, and I found it quite a challenge. My idea of how I define myself has changed considerably since I finished work - my job was pretty much it, particularly in later years as I took on more responsibility. So, what makes me 'me' now, and what objects could I possibly use to show my character visually?

So many things!

It turns out that I also look like a hoarder! So many things are important in my life that I found limiting myself to objects that fit on my coffee table quite difficult! I had to make some tricky choices, deciding that although I love shoes, they aren’t really who I am, and neither is sewing! My life on a table! Mostly good - I am well aware how lucky I am - but some not so good. 

Fork!

The big fork represents food! I love food - eating it, savouring it, preparing it, sharing it. It fulfils all my ‘earth mother’ nurturing needs and nothing pleases me more than my family or friends sharing a meal that I have cooked, or helping my grandchildren to bake or make sandwiches. Can food be a hobby? I happen to think that it can!

Hippo!

The fork kind of links to the next object - a wooden hippo! It’s actually a carving that my sister brought me back from Kenya, but in this instance it represents my constant struggle with my body image. Despite last year’s infamous boudoir shoot I continue to dislike how I look, constantly comparing myself with others and always feeling that I need to lose weight. The fact that I truly believe that none of the people who are important to me give two hoots about how I look doesn’t seem to help in any way. Oh well…moving on!

Tennis!

Tennis! I love tennis, have always loved tennis and would play every day if I could. The injury that prevented me from playing for a year was the cause of great distress, but I’m back playing a couple of times a week now, and am slowly regaining some fitness. Amazingly, it isn’t just in a physical sense that I'm lacking but in mental alertness too. I found it really hard to concentrate at first, but things are thankfully improving.

The beautiful game!

And then there’s football. Not always the beautiful game if you’re a Norwich City fan, but still a part of me - I’m already planning what flavour Kettle Chips I need to get in before the World Cup begins!

Art...

The fridge magnets from various galleries represent my love of art. I’ve written before about how important it is to me and how it can teach me things without me even realising that I’m learning them. It troubles me how little importance it seems to carry in today’s world.

That's me, that is!

Music! This is a cheat pic, because I forgot to include the cd in my original. Nevertheless I was brought up in a home that valued music, I have enjoyed singing over the years, both in a band and in choirs, and think live music is incredible. It is also a measure of how I am feeling - if I turn on the radio or stream random playlists on Spotify, it usually means that, emotionally, I am in a good place. If I’m sitting in silence, not so much. (Please note, I am streaming a random playlist as I type!)

Don't worry, be happy!

Not surprisingly the worry people personify my anxieties, which can be many and various. It’s no secret that I was born worrying, and it continues to affect the things that I do, or, more accurately, the things that I don’t do. But hey, I’m streaming music, so…

Notebook and pencil...

The other thing that has helped me exorcise my anxiety inducing demons has been writing - whether it’s blog posts, micro-fiction or poetry. That I have become so hooked on writing poetry is amazing to me, even though my hubby tells me that my poems are horrible, because they tend to be quite dark in content!

Catty ornament

I haven’t written any poems about cats, but they are a big part of my life. We always had cats when I was small, and, as an adult, they have been my pet of choice. I love dogs, but could never swing a poo bag with any style.

All the books!

My library card is representative of reading. Since rejoining the library last year, my choice of reading is far wider, and I take a chance on books that I probably wouldn't buy. I actually panic if I don't have a book waiting to be read.

Sam!

So getting to the heart of my random mixture of artefacts, we get to the people bit. The photo of Sam could just represent how important autism has been in my life, but it is also reminder of how Sam is Sam first, and a teenager with autism second. I can truthfully say that he is now my friend and not my pupil, and I love spending time with him.

Friends!

Friends are hard to come by, and need to be treasured. For many years my friends were also my colleagues, but the A Team have stuck around!

How small were their feet?

Oh, those shoes! How little were they? My children’s first shoes. I can’t bring myself to part with them, however much I declutter! From them taking their first steps through to their (more or less) independence from me, they really are a demonstration of who I am. And I am proud of them both.

The centre of it all

And at the heart of it all, family. I remember this photo being taken, and my Dad running to pose after pressing the time delay on his camera. My family has changed, grown and evolved. It includes step children, grandchildren and a wonderful husband. It is who I am.

So, there we have it, my life on a table! What would you choose to say something about you? It's not as easy as you might think!

Mind Your Language!

Because I have recently discovered writing as a hobby, I have found myself increasingly fascinated by language and how to use it. I’m currently working on a poem for my writing group and constantly revisit it, wondering if there are better words I could use, or if I could be a bit more clever in my imagery. 

Wicked and pernicious - who knew?

On Sunday my son was drinking a beer made with what the brewery described as ‘pernicious’ hops. I immediately jumped on the word and determined that I was going to get it into my poem!

Another thing that has always interested me is how we use idioms to enrich our language. The Guardian recently ran a quiz to find out if idioms can be recognised once translated from their language of origin. 

I have the proverbial cockroach...

I managed to get 8 out of 10, but some of them were hilarious. For example, in South Korea, if something is extremely amusing they say they laugh ‘until their navel falls out’, and if you ‘have the cockroach’ in France, you are well and truly fed up! The point of the quiz was to illustrate how difficult it can be to translate novels into English from other languages. I imagine it is equally tricky to do the opposite and translate English works into German, Swedish, Japanese. Do ‘letting the cat out of the bag’, ‘sitting on the fence’ and ‘hitting the sack’ really mean the same to people in other countries?

I fear the cat is out of the bag!

The main reason I began to think about how we use idioms and other linguistic tools was because of how people with autism respond to them. In general, idioms, similes and metaphors go right over their head, and if we are to communicate effectively we really need to analyse our language and how we use it. Years ago I was trying to encourage one of my pupils to ask for help. As he stood at the door, unable to reach the top handle, I asked him what he needed. ‘A ladder’ came the entirely reasonable reply. The point is, we understood his literal take on the question. 

Just what he needed!

That we couldn’t respond for laughing is another, probably unprofessional, thing, but we weren’t cross or annoyed. In a mainstream setting it may have been a different matter, and the child in question could easily have been perceived as being cheeky or rude. 

I spent a lot of time in my last few years of teaching working with mainstream schools to support children with autism. Whilst key changes like the use of visual support and structure were relatively simple to implement, changes around language were much more complicated. 

Visual support is the easy bit...

Our language is embedded in us at an early age, and we pick up phrases and words that have always stood us in good stead. Teachers, especially in primary settings, want their pupils to be comfortable and happy, and language is their biggest tool - explaining what is going to happen, what the children need to do and how the class rules work. The trouble is that, for children who struggle to process language, it is all too much. There were times in my classroom when it felt as though I was talking to a dog rather than a child, but ‘sit’ is far more easily processed than ‘time to sit down now to do our work’. ‘Work’ is another open ended term that can mean just about anything in school - sums, writing, reading, catching a ball in PE, digging a garden in science. 

Oh, this kind of work...

Surely specifying a task makes it accessible to every child in class - truly inclusive!

Another thing that teachers, parents, grandparents fall into is focussing on telling children what we don’t want them to do, rather than what we do want them to do: Stop shouting; Don’t break the pencil; Stop pinching. It’s not much of a seachange to say: Quiet; Put the pencil down; Hands down. Sorry to say, but I have no truck with ‘Kind hands’ - how can hands be kind for goodness sake? - surely far better to say keep your hands still, or put your hands in your lap. I can’t help thinking life would be so much less complicated if we focussed on telling people what we want them to do. 

He does it...eventually!

If I said, ‘Could you mow the lawn please?’ to my husband instead of saying ‘God the garden’s in a state’ things might get done a little bit quicker! 

It is not always easy. I never did find a positive way of asking a child to stop biting me - ‘keep your teeth still’ never quite cut it! But I did work with children who had very many complex needs alongside their autism. I firmly believe that, with the right support, many children with autism can learn in a mainstream setting, but part of what needs to change for this to be successful is how we use language in the classroom.

Entirely logical!

A couple of weeks ago The Salted Tail and I were helping our friend Sam to plant some strawberries. When we asked him for something to ‘open’ the grow bag. He came back with a tin opener. We laughed until our navels fell out. I rest my case…