Illustrated by Mollie Ray www.mollieray.co.uk
Designed by Albie Clark at artlinkedinburgh.co.uk
SECOND PRINTING
Although the author and publisher have made every effort to ensure that the information in this book was correct at press time, the author and publisher do not assume and hereby disclaim any liability to any party for any loss, damage, or disruption caused by errors or omissions, whether such errors or omissions result from negligence, accident, or any other cause. Some names have been changed to protect the privacy of individuals.
© 2018 Gail Keating/Mollie Ray. All rights reserved. No reproduction without permission.
Gail’s Paper and Pens - Volume 1: Characters
Introduction
Steve and the Bed
Brian the Swinger
Graeme at the Pool
It Wasn’t Me, It Was Jake
Richard the Runner
Harry
Ben the Secret Agent
Robert
Jack and His Paper
Bio/Acknowledgements/About this book
Those with autism and those who relate to them have to deal constantly with the question mark that is the mystery of everyday life. Often, without consciously realising it, we expect autistic people to do things in the same way as we do and this can place obstacles in the way of their understanding of us and perhaps learning from us how to cope better with the stress of daily living.
Both volumes of “Paper and Pens” aim to help all of us who share the lives of those with what is called autism to learn to think differently ourselves so that they can understand us better. Everything in these pages has been lived out in real situations in my life’s work as a teacher: the majority of which was spent with pupils with complex learning difficulties and behaviour which was described as challenging by educational and social work services.
It was one of these pupils around thirty years ago who first taught me the power of paper and pens when communicating with someone who is anxious or stressed or who needs extra time to process spoken information. This technique was to prove extremely useful when communicating with those on the autistic spectrum.
In Volume 1, the vignettes of the characters simply illustrate something significant about each of them: either a single episode or an ongoing characteristic. Together we have found solutions to individual problems and difficulties and also had a lot of fun in the process. In Volume 2, we examine how we neurotypical folk think and act in several everyday life experiences before moving on to explore how those with autism may function in similar situations.
Recent research published in November 2018 from the University of Utah shows that people with autism experience prolonged brain connection times
which, in practical terms, means that their brains are not efficient at rapidly shifting between ideas, thoughts or actions1. The brain connections of people without autism fade quickly but the brains of people with autism can remain connected for as long as twenty seconds.
Over the years a whole range of strategies has been developed to ease communication between those with autism and those who want to relate to them and many readers may be familiar with several of these. Throughout these books we shall discover that paper and pens are invaluable tools for use before, after and alongside these more sophisticated methods. Indeed, several myths have to be set aside if we are to make best use of the official tools.
Learning to think differently is a mutual experience and is definitely not a one size fits all process. Endeavouring to find common ground for meaningful and helpful communication is both a challenging and a fascinating experience and hopefully a rewarding one for both parties. The most important questions for those of us who share in the lives of those with autism are: “What is the individual saying in words or actions?” and “What does he or she need us to say to him or her right here and now?” Our creativity of interpretation and response is given free rein and if, at first, we don’t get it quite right then we keep trying in the knowledge that it is a great privilege to be part of creating a better quality of life for someone by lessening their anxiety, helping them to acquire tools for self management and enabling them to have fun.
November 2018
1Evaluation of Differences in Temporal Synchrony Between Brain Regions in Individuals With Autism and Typical Development
Jace B. King, PhD1,2; Molly B. D. Prigge, PhD3,4; Carolyn K. King, BA1,3; et al Nov 2018
One day after lunch it was obvious that something was troubling Steve. Steve was an extremely anxious boy of about sixteen or seventeen at this particular time as before this age he was known as Steven but it was his own idea that he should be known as Steve when he was sixteen and he quickly corrected anyone who made a mistake by telling them: “I’m Steve the man.” We wondered if this was an attempt to put his past behind him as his childhood had not been the happiest of times, having been excluded from four schools and with a huge section of shelf in the Social Work Department containing the records of his multiple care placements.
However, more about Steven later as for now it’s important to try and sort out what is bothering him as too much stress increased his anxiety and his anxiety often manifested in undesirable forms such as the tipping of furniture or the attacking of people. He did not have an official diagnostic label at this stage: only “non-specific learning difficulties.” One school doctor put forward the Fragile X theory but that necessitated a blood test to prove and it wasn’t considered worth the trauma. It was the anxiety that was Fragile X-like, but ultra-intense, but then it is possible it could have been exacerbated by his early environment and its absence of security and stability.
However, back to lunchtime when, in the staccato speech that signified high stress levels, Steve said he wanted to “go to snoezelen.” Our snoezelen room was a safe space inasmuch as no one was going to burst
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Steven: “Don’t like P______.” (P______ was the name of the small town in which Steve had gone to live in the previous couple of weeks, having moved on from a children’s house to young people’s transition provision with the same care provider.)
Gail knowing this wasn’t exactly what was meant replied: “I’ve been to P______ and it looked OK to me. There’s a garage and a chippie and a video shop.” (these were places of interest to Steve)
Pause
S: “Don’t like my house.”
G: “I went to see your house before you moved in. Good garden, nice people and I had coffee there.”
Pause and shuffle a bit closer
S: “Don’t like my room.”
G: “I loved your room. The colours you chose. Orange and green walls. Space for TV, stereo and keyboard.”
Another shuffle nearer
and the Bed in unexpectedly. School staff guarded the calmness and specialness of snoezelen very preciously. So off we went to the subdued lighting and soft flooring of the snoezelen room and Steve sat on the floor in the far corner. I sat on the floor too, but near the door, up against the wall so that no one could come up behind me and in front of the power points so that I couldn’t suddenly be plunged into darkness. With my knees up to my chin I could place my arms on top so that I could look at Steve through the space made by hands yet it looked like I couldn’t see as eye contact would have been highly undesirable at this point. Eventually the voice came from the corner.
S: “Don’t like my bed.”
G: “Well has your bed got a duvet?”
S: “Yes.”
G: “Pillows?”
S: “Yes.”
G: “Well, that’s OK isn’t it?”
But it obviously wasn’t. Another move much closer this time and a corresponding repositioning of the hands from me to enable a quick jump up from the floor if necessary. Then:
S: “There’s not enough ground.”
G: “Not enough ground?”
And the dawning …….
G: “Does not enough ground mean there’s no space for Steve to get under his bed?
S: A “Yes” that also said: “Wow, she’s got it!”
So now we had established the cause of the stress what could we do about it? I offered a couple of possible solutions. “Maybe they think that because you’re big now you could do something else instead of going under your bed. Maybe you could put a notice on your door that says Keep Out Please.”
No enthusiasm was forthcoming for that suggestion. “Maybe you could have a special corner instead and it could be your Cool It corner.”
But that didn’t appeal either so: “Any ideas? What do you think we could do?” Immediately the obvious answer came from Steve: “Phone them.” So off we went to phone the staff at his house and relay the story
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of the bed.
A few days later I attended a meeting at the house for feedback on the first month of this new placement. The project manager arrived and announced to us that before we began she had to go and have a look at Steve’s bed so obviously his concerns had been passed on. She came back downstairs saying that it was ridiculous and the bed was more like a futon and a new bed was to be ordered. Evidently staff had shortened the legs of the bed to discourage Steve from going underneath it but had got too enthusiastic with the saw.
A result for Steve in employing his learned communication skills very appropriately, but also a lesson for staff.
Brian had Fragile-X and a journey of around twenty miles to school each morning. This was not a good combination. Unfailingly on arrival the response to my polite call of “Good morning, Brian” would be “Shut up, you f_______ bitch” as he passed right through our little unit and out to the back garden where there was a swing. The swing would then get swung with vigour in all weathers. If it was wet Brian would reappear: “I need a bag,” and the plastic carrier bag on the seat would enable the swinging to continue, usually accompanied by a verbal chorus of: “F______ bastard.”
With such a valuable resource right outside our door what else could we do but make use of it?
The swing was written into Brian’s programme: initially as many as ten times before morning break and for as much as five minutes at a time. The sound of the timer triggered a volley of verbal abuse at the beginning but fairly quickly became accepted as the signal to stop the swing, go inside and “do some more work,” knowing that “Yes, I will be able to get another swing before long.” Gradually the swing times got shorter and less frequent until, unless Brian was unusually extra-stressed, the swing at break time was enough.
But still Wednesday mornings were the worst. Wednesday was the day we were allocated the minibus. So, “Where are we going?” “What are we doing?” “Will we be back for lunch?” For all our preparations and
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explanations Brian’s initial reaction on coming in from the first swing on a Wednesday morning was “I’m no f______ going.”
That was actually quite a simple message but it was often embellished with punching the wall or cupboard doors and informing me that: “You cannae make me” and how there was a distinct possibility I might just “get my lights punched out” if I tried to do so.
Every Wednesday I adopted the same physical stance: the C.A.L.M. basic posture position with the arm nearest to Brian held up at shoulder level so that it could dampen the occasional clenched fist coming down on it without damage. This position was safe for me and non confrontational for Brian and would be maintained in silence until the tirade subsided. Then we would draw the programme for the morning; always starting from the bottom of the page and putting in “lunch at school” first so that there was no doubt about that and then we could concentrate on what we were going to do before it.
And usually Wednesday turned out to be a big success with “Brian the brave” being so pleased with himself that he would want to record his achievements in the afternoon art session.
So wouldn’t it be good if we could “kill the commotion” first thing?
Having done some “mirroring” of Brian’s behaviour in other less threatening, fun situations I decided to take a big risk. My risk assessment was not so much in terms of physical safety but rather would the Head Teacher, Director of Education or similar official person walk in and put me down for a disciplinary procedure!
Brian the Swinger
One Wednesday morning before Brian got a chance to speak I started jumping around, thumping the metal cupboard which made a spectacular sound, shouting “I’m no f______ going” etc and, at the height of my exasperation asking myself: “What am I going to do?” and producing instant pen and paper to tell myself, and anyone else who liked to watch, what we were going to do for the morning.
So I was delighted when, after a few miles in the minibus, Brian turned round to me in a seat behind and diagonally across from him and remarked:
“You were copying me, Gail.”
“Yes I was, Brian.”
Another few hundred yards and then: “You looked really stupid like.”
“Yes I did, Brian. But if Gail was copying Brian . . . and Gail looked really stupid . . . What does Brian look like when he does that?”
Silence for a few hundred yards and then Brian turned round, looked straight at me and gave a huge beaming smile. Message received: no words needed.
Graeme was a scurrier since his early years. This was not so obvious when he was small as he was nearer the ground anyway. Graeme’s type of scurrying was moving fast with head down and body bent forward from the waist and often ending in a “sit down.” The trouble was that the “sit down” could last for quite a long time and could turn into what we, in school, termed a “hole up.” A “hole up” could last even longer if, lucky for Graeme but not so for us, it took place in a corner. Two walls at an angle mean it’s not so easy to stand beside and shuffle along surreptitiously centimetre by centimetre until, hopefully, an appealing distraction / escape route presents itself. Then, still more hopefully, the holed up one will suddenly jump up and scurry: either back to base or on to the original destination.
So although the principles are the same, a big person scurrying always attracts more attention than a small one and some people can be quite big even at ten years old. We had done a lot of practice with Graeme at walking up straight and purposefully; starting with one doorway or one lamp post at a time and then further instructions to the next one or a backtracking return to base dependent on the reading of the situation. In the midst of all this progress a scurry was bad news as things could be going so well and be on track for being in time for lunch, for the toilet or even for the taxi for going home, and then: suddenly, the scurry, the “hole up,” the phone calls or the messages sent to put Plan B into action, to regroup and save the day for everyone. Another thing about hole ups is that they are exciting in their unpreGail’s Paper & Pens
dictability which is fine if you don’t have a bus to catch or a building that is waiting to be locked up. Back to Graeme, just because he didn’t scurry off on the way to the toilet yesterday doesn’t mean he is not going to do it today. Even if he had not scurried off in the supermarket for six months we still could never be absolutely definite about the time needed for a shopping trip. And often it was the shortest scurries that were most difficult to puzzle out as often, being on familiar territory, so many of the clues and prompts that we might give him already seemed to be in place.
Graeme had been doing well at getting in the water of the school’s hydrotherapy pool. We used the hydro pool as a prelude to the ordinary swimming pool as it was warmer and smaller and we could have it for an hour all to ourselves on a Friday morning. It had taken us weeks to get a toe in the pool. We had gone to the door several times with the photo and the bag of swim stuff. We had gone inside for brief forays but remained clothed. We had gone inside, put on swim stuff and then got wet in the shower. We had sat on the floor at the side of the pool and poured water on our feet. We progressed to sitting down at the top of the steps and then literally inching forward in sitting position with me physically supporting from behind and being guided by the excellent reading of Graeme’s expression by our class Learning Assistant who was in front and facing Graeme. Her right
hand kept in constant communication with me telling me: Thumb up: “This is looking good. He seems relaxed and happy so you can nudge a bit harder.” Thumb down: “Slacken off immediately and be ready to take alternative action.” Thumb and little finger waggle: “Looking a bit dodgy. Could go either way so slow down and be prepared.”
Then one magic day we were in and able to stand up in the water. Another day we could walk around the pool sides. Then we could jump up and down. In subsequent weeks Graeme could hold on to the big float and, eventually, not only accept help to gently move across the pool with feet off the ground but actually enjoy it. And better still, we could get out at the right time and get a shower and even a hair wash.
Then one day a scurry round the pool side and a sit down and the kind of sit down that looked like it might go on for a long time. We showed the symbols and we did the signs. We poured the water on the feet and we (staff) got in the pool and came over to Graeme’s side. All efforts were observed and accepted graciously but still no movement. So, with time expiring, I decided to call it a day and just go for the shower, but because Graeme followed me immediately and unexpectedly I made a split second decision to go close to the pool steps on the way. I have never forgotten the expression on Graeme’s face as he looked at the steps and looked at me. It was something of wonder, something of relief and something of gratitude that “I was lost and you’ve shown me the way at last.” We all went in the pool for a short but excellent session.
Although we had apparently done the same thing in the same way so many times before, on this occasion Graeme was puzzled. Maybe confused by his first scurry which had landed him on an unfamiliar side of the pool. Who knows? I know I was so pleased that I had made that tiny detour that enabled him to be successful and to get there in the end.
Dylan was an Oscar-winning performer. He loved to be heard and seen but could still put on a spectacular solo performance if there was no one watching. He was also good at magic tricks and loved to demonstrate for an audience. However, unlike the professionals whom he loved to study he had a tendency to abuse his audience. His obsessive nature spread to telling other people how to sit, what to say, what gestures to make and getting rather cross if his directions were not followed.
So what happens in a theatre at the end of a performance? The audience applauds, the performers take a bow, the curtains comes down, it’s finished and everyone goes on with their ordinary, everyday business. So that’s what we did at school.
The first “performances” took place in the snoezelen room as it was a bit theatrical in there anyway with music, coloured lights, fibre optics, bubble tubes and incense sticks. Ten minutes or so before the end of the session Dylan was allowed to put on a performance and Gail would be the supporting actor or the magician’s assistant. The session ended with a bow and the declaration: “The end” or “He hend” as Dylan always said. Then return to class as the show was over and no more “silly behaviour” allowed until the next performance. Initially extra performances were written into his programme fairly frequently to ensure success. Then as the strategy became established the intervals between them were gradually increased.
Paper & Pens
Around this time Dylan became really keen on children’s TV programme The Tweenies. There were four Tweenies; Milo, Jake, Bella and Fizz and their leader or teacher who was called Judy. He liked to watch Tweenie episodes every day when he returned home from school and Mum alerted me to the fact that I was known as Judy. Now this was a little bit too close to home as Judy wore boots and fleece-type tunic tops, always had a handful of felt tip pens and endeavoured to keep order in a calm and reasoned manner. Where we parted company was that she had a green face.
Eventually Dylan gave his Mum and Dad and younger brother Tweenie names, keeping purple faced Jake for himself. Then Jake started coming to school which wasn’t altogether a good thing as he replaced the somewhat more sensible Dylan. This was a wonderful opportunity as any undesirable behaviour “wasn’t me, it was Jake.” So Gail, the class teacher, decided that when working with Jake it would be more beneficial if she were replaced by Judy. So the day got off to a good start each morning when Judy, felt pens in hand, skipped into the room with a super bright and super cheery “Good morning.”
Any behavioural issues were addressed by Judy in words or actions and sometimes with the ubiquitous felt pens to draw a story with a
It Wasn’t Me, It Was Jake
message that could be pondered long after words had disappeared into the air. Gradually Jake came to school less and less and Dylan was present more and more. We were glad to see him back and told him so and Gail was able to stay in class and not swap with Judy any more. Twenty minutes to act with Gail at the end of the day became a potential reward for being on task in the afternoon. These sessions soon became less fantasy and more real life and we took turns to do solo performances with the other person sitting back and watching without being allowed to interrupt. Dylan was extremely accurate in his portrayal of school staff, having observed a host of idiosyncracies in minute detail. No one needed video feedback as a performance evaluation tool. They just needed to come along and peep through the window in the door at our end of day drama sessions. For my turn I took the opportunity to act out an issue with a message, either school based or general, such as road safety or visiting a café, or something to do with home or family if we had been alerted about some difficulty there. Often I began with portraying the undesirable and its consequence which was good fun for me to act but had the serious purpose of letting Dylan see himself in the situation and hopefully see a reason for doing things differently. I think he did as he would often congratulate me when I got it right!
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Richard was twelve when he came to our school. This was a common age for pupils to join our school as in Scotland the move to secondary education takes place at age twelve and for some children who already had difficulties in coping with a school programme this meant that a different kind of regime in secondary provision was just a step too far. So Richard came along with a Learning Assistant from his previous school and within his first half hour he managed to pull down a set of curtains, demolish a decoration which had survived on a ceiling for eighteen months and terrify an anxious boy into taking refuge in an empty room all by himself.
He was a runner too and his Learning Assistant had learned to be a chaser in his previous placement and so that was the first skill to be unlearned. We did not do chasing and catching in our place. We ran silently, overtook and got in front and then responded accordingly to what happened next. Spoilsports: this removed some of the reinforcement element of the fun of the chase but also allowed us to better interpret what the run was all about. In Richard’s case it always seemed to have a purpose. He was always running for something and the “something” mostly fell into one of three categories. First, the perennial favourites: Argos catalogues and jigsaw puzzles. Second, something he had spotted earlier, such as on arrival at school or shopping centre, and had stored in his mind for a suitable opportunity for collection to arise. Third, something that needed tidying up, that was seriously not in the right place, such as a dead hedgehog in the
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middle of the road or a half empty juice bottle on a pavement. In the cause of safety Richard had come equipped with a harness for use when we left the school building. As our school was situated up a drive of almost three quarters of a mile from a main road and even had a nearby wooded section for interesting walks we decided to dispense with the harness when going out of school for local trips on foot. We just looked like very good friends going down the drive in such close proximity to each other, often with arms linked if the staff’s far-seeing eyes had spotted anything out of place, like a dead hedgehog on the road for instance! When out and about in public places we doubled up the support so that Richard had two chums: one on each side when needed. And still we weren’t quite quick enough to prevent a man relaxing in Princes Street Gardens from having his newspaper whipped from his grasp or the man in the café from losing the cake on his plate having only taken one bite.
Personally I have never been in favour of risk assessments. Perhaps I should qualify that statement. I have never been in favour of the risk assessments that are carried out on a particular location, written up and put in a file or on an institution’s computer server. That place has been done, ticked off as safe and, for me then, there is a danger that staff become complacent as the location has been approved and signed off by management; whereas an outing with some of the characters like those with whom I worked is one constant risk assessment. That’s why those of us who happened to be at the back of the group when we were out in a public place never questioned any instructions that came from the front. Even though they might not be what we had planned, we
knew there must be a reason which we would find out later.
This was particularly so when out with Richard. If we were about to go through a shopping centre and up the stairs to the food court for snack and the call came from the front of our straggled group: “We’re just going into Boots,” we all followed without argument knowing that there would be a good reason for this. Now the reason might be something like the staff in front had spotted a broken bottle of wine that was just about to be cleared up and didn’t need Richard’s help or, better still, a display stand of jigsaw puzzles in a shop entrance! This would necessitate an instant regrouping, preferably with Richard in the middle, and a marked increase in the speed of movement in order to safely negotiate the hazard and get to the stairs when the focus would hopefully then be on the prospect of an imminent snack. That is what I call a risk assessment but that kind of risk could never be planned for and ticked off in a file. But people who were proficient in that kind of risk assessment ensured success for Richard and his peers and greatly enhanced the quality of their life experiences by enabling them to access a wide variety of places.
Richard was extremely good natured, had a huge smile and did not get cross easily, but, unfortunately, in his presence other pupils were not so happy and could get rather cross when their last potato was whipped off their plate or their artistic creation was torn off the wall. His quick and apparently unpredictable movements caused great anxiety in some other pupils who could then react in an aggressive manner when they panicked as it seemed that control over their environment had been lost.
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So, in school I decided to take a big risk with Richard. This was not a physical danger risk but a big risk educationally as we emptied a room of everything, and I mean everything, including furniture and curtains. As Richard was a jigsaw fan we began by doing jigsaws with him on the floor until we were accepted as partners in completion. Then we had a stack of activities outside the door and brought in one at a time to be done in between the puzzle – but still with the puzzle in view beside us on the floor.
The next stage was to introduce a table for short periods: no chairs, only a table to start with as it might have to be moved out at short notice and to have the door open for too long was an invitation to escape. At a later stage we graduated to a table and two chairs and later still we were able to take in the computer trolley for some touch screen interactive programmes. Then more ambitious still, some art materials and then some cooking ingredients, but all removed from the room again once the session was over. This was so positive ignoral could take place safely as on the occasions when Richard was in super silly mode and out of his own control I could just sit on the floor in a corner with my face covered by my hands pretending that I wasn’t watching him while he safely roamed round and round and vocalised and laughed and shook his head.
Then the big day arrived when we were going to move out into the nearby big room with other pupils; albeit for five minutes and complete with jigsaw puzzle. The first trips to the snoezelen room were only for two minutes on the timer as what was meant to be peaceful
Within about eighteen months the empty room became almost redundant, but we kept it empty both as a back track strategy if needed and also so that another new pupil could benefit from it. Richard had an established place in the big room: in a corner with a wall on one side and a member of staff on the other and seated at two tables taped together as that made them harder to get under and away swiftly and also harder to tip and get over. He was very happy in his place as he could take part in everything but in a controlled manner so that he could cope and be calm enough to enjoy it.
He graduated to one table, to a full session in snoezelen and to being able to go to the toilet and come straight back. And going to outside places like a café or an adventure park: well, we always had a puzzle in the bag as you never know when you might need a seat in a corner with your very own “security blanket” and a pal beside you. There’s nothing like being in control, especially of yourself!
Paper & Pens and relaxing was far too stimulating at this point, with balloons in a net hanging from the ceiling, coloured lights, strings of fibre optics and big tubes full of water: all major possibilities for tidying!
Harry was not diagnosed as being on the Autistic Spectrum. He had learning difficulties, a very low sense of self esteem and also anxieties about his security. From an early age he had been in council day care as his parents were not able to manage with Harry and his brother at home during the day.
Later on when they began to attend school they were fostered by a family near their home area but for some reason unknown to us Harry was moved out of that situation and placed with a foster family in a completely different location. So, to him, that meant two mothers who had not been able to cope with him and therefore immediately there was any kind of difficulty in his current placement he thought he was heading for rejection by three mother figures.
He became very adept at making reasons for all this and when he became stressed and exhibited undesirable behaviour the reason / excuse (or “scoose” as he called it) was always “I miss my real Mum and / or my real brother.” He also became adept at describing his home life as he thought it should be, even to small details like, “My Mum knitted this jumper for me,” when it was obviously a mass manufactured garment with a well known label in the back.
Unwittingly, in engaging in this fabrication of his home life he made it more difficult for anyone to help him as we were working not exactly in the dark but in a kind of twilight zone in which no negativity was
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allowed. The slightest hint of anything negative in a conversation became a damning criticism to Harry. On occasion we observed him talking to his own image in a mirror, telling himself: “You’re so ugly . . . you’re so dumb.”
We quickly learned about his sense of humour too. Any form of good natured teasing or banter was bad news to Harry and we would be accused of “getting at him,” or, even worse, of “getting at him because he was so stupid or so ugly.” As fun played a big part in our school ethos this state of mind was a bit of a disadvantage for us! So one day one of our support staff taught him a big lesson which was the foundation for lots that we could build on later and, in fact, was a lesson for life. After lunch one day he came to ask if he could get his Milky Way bar that he had brought in the morning and stored in our fridge. The staff member, somewhat dramatically, said, “Oh Harry, is that the one that was in the fridge?” “Yes please,” he replied. Then “Oh Harry, I’m really sorry but I’ve eaten it.” Then with perfect timing; just long enough to sink in but before the tears, the anger or the slinking off could occur . . . “Come with me.” Open fridge door and behold, a Milky Way. “That’s a joke, Harry. I played a trick on you. It’s only pretend. I know it’s your chocolate and I would never eat it. It’s only joking. It’s fun.” Then the member of staff and a beaming Harry, who even seemed to have grown a little bit taller, went to tell all the other members of staff who all gave appropriate and positive response to “the joke.”
That was a turning point for Harry and we were able to do so much more to help him cope with his mixed up life once he realised that
he was worthy of teasing. That raised his status enormously. He was one of us and he was fairly quick in ascertaining if the acceptance was mutual. One day when I had asked him to do something he very determinedly stated “No.” This was something very routine and very ordinary and should normally not have been a problem so “Why not?” I asked. His eyes danced with mischief and he plucked up all his courage to splutter out “Because you’re just a big wind . . . get it?
I got it alright. In fact I was really pleased that he felt able to do that. We all told him it was a really good joke as he was right: a gale (Gail) is a big wind. We still had a long and highly complex journey to go with him but at least he wasn’t standing still or going in the opposite direction which would have been a whole lot worse.
The following incident gave us a lot of encouragement. One morning just before snack time Harry and Brian were overheard plotting to kidnap me! So they duly came to arrest me and marched me out into the school grounds where I had instructions to stand facing the wall and not to move or they’d shoot. They then stealthily crept away and, after a suitable interval, I too crept stealthily away, authentically keeping undercover of bushes in case they were watching. They
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weren’t! They had gone back into our unit, closed all the doors and were in the kitchen with the others all sitting at the table having snack. So I knocked on the kitchen door and when asked to enter I said, “Excuse me. My name is Gail and I used to work here and I’m just wondering if anyone remembers me?” Harry, who had just taken a mouthful of blackcurrant juice spluttered it all over the table as he caught on so quickly and was so amused. He laughed until tears ran down his face (which, in itself, was great to see) and then announced in such an old fashioned manner, “Eeh, this is a crazy school, this is.” To which one of our Learning Assistants immediately replied, “Yes, Harry, it is and that’s just the way we like it.”
Now in that story the blackcurrant juice was a significant component. When Harry first came to our school to have spilled juice could have triggered a major incident. He would have expected big trouble and would have been so stupid and nobody liked him so that would have been a reason for, at the least, putting his head in his desk for the rest of the morning, or at the most, walking out of school and away into the surrounding woodland. And I’m not joking about that!
Ben was a computer wizard and he was well aware of his superior skills. Staff members tried to learn from him but he was far too quick with his clicks for any of us to replicate his technological journeys. If something needed sorting on the class computer we were totally dependent on his goodwill towards us at the time as nothing could make him change his mind if it was fixed in “mischief mode.”
Ben did not speak verbally and was not highly motivated to communicate with either signs or symbols as he did not show a spontaneous interest in anything much apart from all things computer: PC, iPad, iPhone, anything which allowed internet access. He got quite gleeful whenever his actions succeeded in causing a big mess and/or winding up staff but that wasn’t something to be encouraged in the cause of teaching expressive communication by means of symbols or signs.
The undesirables of wanting constant computer access and not moving at the appropriate time were the major pieces of information that preceded him when I first made his acquaintance. For someone who was big for his age and did not move on a regular basis he was amazingly agile and the immoveable position was often taken up on top of a fence or window ledge or a favourite one: in the middle of the swimming pool.
Along with the Speech and Language therapist I undertook
Gail’s Paper & Pens
some sessions of structured teaching of the PECS method of communicating. He learned the technique very quickly but really didn’t see the need to use it. Everyone who worked with Ben was of the opinion that there was a lot of ability and untapped potential in him but we could not develop it on our own and he seemed very unwilling to humour us with even a micro amount of collaboration. We managed to lessen his use of the computer by interspersing it with other activities of our choosing. When it was his “time to choose” we knew he would choose computer but he still had to ask us via PECS (Picture Exchange Communication System) and when it was his choice he was allowed to use the computer on his own as he let us know on no uncertain terms that he did not welcome interference! However while I was “monitoring the environment,” i.e. guarding the door to prevent escape from the computer room, I was surreptitiously watching his screen and noting down some key words around his current interests.
Then surprise, surprise, at table work time the next day his literacy might centre on the names of places he was looking at on Google maps and the numeracy used bus numbers as he had been consistently investigating the Lothian Buses website. This could have gone horribly wrong as there was potential for his becoming very angry if someone invaded his computer world. However his world was genuinely interesting to me as I could see how he was navigating his way through it and increasing his knowledge and making connections on the way
and I am big into making connections myself or, perhaps it is truer to say, big into learning how to make connections for other people. As for Ben, at first he did a literal double take: looking right into my face twice as if to check this really was happening. She is talking my language! At first I treaded very carefully and intertwined his website topics into the people and places I knew were familiar to him in everyday life. He was in control of his subject and so was more amenable to answering questions: just simple “yes” and “no” questions at first. Nothing complex as it was the communicative aspect of answering me that was important at this stage. We used “yes” and “no” symbols to begin with so that all that was required was a touch or a point but Ben added in a little vocalising too. So I capitalised on this and the higher squeak said “yes” and the lower grunt said “no.” Ben found this quite amusing at first and so did I! We had fun at this level for two or three weeks before getting a bit more serious and introducing “writing.” This was when I drew a face with a big speech bubble. The “Gail face” said something about Ben’s programme or asked what he would like when it as time to choose – and the “Ben face” would supply the written single word answer.
With all this conversation and turn taking communication activity there was a secondary benefit as Ben was also letting us see his ability to decode written text. Knowing that he was likely to close his shutters if he realised how much information he was giving away I sometimes had to pretend that I didn’t know some things so that he could tell me. Another staff member joined in this strategy too and we were both on the receiving end of wonderful smirks of superiority from Ben.
Gail’s
Paper & Pens
Through the Speech and Language therapist we acquired a netbook for Ben’s use. It was loaded with a personalised predictive text programme in the hope that he would use it for requesting his needs now that we knew his ability to do so using written text. But, true to form, something we offered and introduced was definitely a “No Way!” So the next move in this game was Gail’s. At the “choosing time” after assigned tasks were completed we knew he was 99% likely to ask for the computer and so he was required to ask for the big computer by means of typing his request on the netbook. Just a small step but Ben’s next move was a much bigger one. He suddenly started asking for things such as drink, toilet, balloon by typing the word into the search bar while using the big computer and calling someone over to read what he had written.
In tennis terms this was definitely “Advantage Gail” as he had now invited us to come to his computer when he was using it at his own personal choice time. So I then started sitting beside him when he was doing his “internet research.” I remained still and silent while the computer wizard moved speedily through his current interests which were often related to some aspects of everyday life that had caught his interest, such as a particular place he had noticed on a car journey or even a brand of fence paint that his neighbour was using. When I had something to say I wrote it and left it in silence for Ben to “notice.” Gradually he got curiouser and curiouser and would actually put his own agenda on hold to watch the words developing from under the tip of my pen. In this way I could comment on his subject matter, extend it and often link it up with something else. Great stuff, which got even
better when Ben began to ask me to write to clarify something and even shocked us all one day by actually getting up off his chair to go and get me a pen! At first this request might be for something like a correct spelling for his search but gradually the exchanges became more complex and we were able to give him credit for this by ticking off some of his own computer choice time on his programme as an official learning “work time.”
A long journey of tolerance, through acceptance to - dare I sayappreciation of another person joining in along the way. A long way round, but I’d say we wouldn’t have got there if we had tried to take a short cut. And it wouldn’t have been half as much fun!
Robert was anxious to the extreme: an extreme which wasn’t very comfortable for anyone in close proximity to him as they might be subject to a sudden kick, clothing grab or hair grab.
There wasn’t much point in not standing in front of him to prevent kicks as he was just as likely to kick backwards or out to the side. His piano player long flexible fingers were perfect for twisting clothes and hair until they were almost inextricably entwined.
But unfortunately he had to have an adult right up close to him at all times or he would not have moved anywhere at all. Sometimes he went over the top in the closeness stakes and actually wriggled himself under people’s T shirts, while they were still wearing them, that is. Before Robert came to our class, the females in his previous class were in constant danger of indecent exposure in an educational establishment! However, if Robert were forced into a solitary situation just by people not going close to him and his not being able to get himself together enough to move, then he became very distressed and would start to punch his head, kick his own legs with his heels or knock his hips hard with his elbows. This was very distressing both for him and for staff and
Gail’s Paper & Pens
his parents.
Helmets, pressure vests and weighted blankets had all been trialled in the cause of helping to alleviate his anxiety by giving him the feel of close physical contact but without an actual person. He seemed to like pressure across his back and would put staff’s arms into this position himself, hence the Occupational Therapist’s idea of the pressure vest, but no; it had to be a real person.
This had huge implications for parents and respite carers as he could not go to bed without this physical contact and the essential personal care activities of daily life such as toilet, bath, dressing and undressing were all nightmare scenarios as it was absolutely essential to remove a hold of one limb at some point in these procedures. The difficulty with that was that the released limb would instantly re-stabilise itself but usually on the assisting adult. Checkmate! Neither part could move. Another little drawback was the intestinal problems that affect so many people on the Autistic Spectrum. If Robert’s interior was not functioning at its best the cling-on effect was greatly exacerbated. So when Robert moved to our class it just seemed imperative, absolute priority that we lessen the “startle and grab / kick effect” and endeavour to help him to cope with his anxiety by other functionally equivalent means. We introduced him to a very tight and initially predictable structure in which pictures, photos, symbols or single words were used for everything, and I really do mean everything. Communication was really intensive. I usually sat next to Robert for snack and lunch and even if I were just going to stretch slightly across Robert
the table to reach something I told him first: “Gail is getting butter, milk, spoon, whatever…” Otherwise my slight leaning forward and raising off my chair would have panicked him into the split second response: “She’s going. I’ll be on my own. Grab and keep her here.” Even a changeover of staff would necessitate the second person’s hands on his arm before the first person withdrew theirs.
After he became familiar with all the methods of us communicating with him with our consistent use of symbols, signs, photos for staff or destinations along with basic drawing we then started to give him the means to communicate with us mainly by using Boardmaker symbols and photos. It was then that we began to see the smart, mischievous personality emerging, but at this point I am just going to give one example of that. It’s one with which I was absolutely delighted.
Robert’s diet wasn’t the best or most varied and we were always trying to encourage all our pupils to eat some healthy foods. He loved marshmallows and Haribos or similar chewy sweets and we had to get a special lidded box on a shelf to make access a little bit harder as if he was feeling either very confident or very pushy he would endeavour to help himself. Just before the home journey each day the boys had a small snack and we were managing to get Robert to eat a few slices of apple before getting his sweets of choice.
However, one day when I was sitting beside him at the table he must have decided he’d had enough of that system and asked me for
Gail’s Paper & Pens
“Sweets, please” by means of his PECS symbol and Signalong gesture. I answered him: “Apple first, then sweets.” Again, “Sweets, please,” and again I gave the same reply. Becoming more insistent he turned my head towards him by means of a hand under my chin to make sure I was watching as he pointed very deliberately with his forefinger to his symbol and signed “please” most emphatically.
So I too decided to become more explicit and added in a symbol for “finished” so my symbols then read: “Apple finished (empty plate), then sweets.” With a flourish Robert picked up his plate and in that split second I expected it to become an angry frisbee in flight across the room, but no, he carefully tipped the apple off his plate and onto the table, put his plate on top of the apple thus hiding it from view and then again, “Sweets, please.” Well, empty plate, apple gone, that’s what I’d said! Robert got his sweets immediately and lots of praise for being so clever, and Gail took note to be three steps ahead in future negotiations.
Jack was a really likeable boy with learning difficulties but his ADHD tended to exasperate a lot of people before they got to know him. And constant nagging exasperated him too and when it got too much for him his coping strategy was to walk out of the situation after uttering a tirade of well chosen, guaranteed-to-annoy words. Eventually Jack reached a point at which he was either outside the Head Teacher’s office or mooching around the playground for longer than he was actually in a room engaging in some purposeful activity.
When I first encountered him he gave the impression that he thought he was pretty useless at the conventional sitting at a table with pen and paper activities. He lost patience with himself very easily and so did not stay around long enough to be helped. The first time I worked with Jack was when I had accompanied him back to his classroom base after he had “blown it” and opted out of one of the specialist subject lessons. I started to draw a mini programme of what we could perhaps do before the rest of the class came back to the room. Writing at top speed I did some worksheets of really basic number and writing as I did not have much idea about his ability and didn’t want to put him off by making the content too difficult. We also did a quick “story” about what he had done positively. He was so pleased with himself that he looked for blu-tak to stick his page on the wall and he got a good, positive response from the person to whom he showed his work. “Great,” I thought, “We could work together on this.” But the next day I found out that this person was a student who was only in
Paper & Pens
Jack and His Paper one day a week, and most of the responses of the regular staff were not so positive. “He had opted out, hadn’t he?” “He was never where he should be.” “He had sworn at so and so before he left the room.” “He’s a law unto himself.” “He’s totally out of control.” Sometimes they were so overwhelmed, and quick to sanction that their hand was on the phone to contact management before he was really sure about what he was going to do. The phone call probably helped him to make up his mind: “If I’m going to be out of the room anyway I might as well leave in my own way!”
The simple measure of drawing instructions for him really appealed and he very soon began to take ownership of his “paper” and instead of my taking it along to specialist subjects he took it himself. This was by no means a programme for the whole day or even a whole morning or afternoon. It was a one step at a time job, an example of which might be just leaving the classroom base to go to another room, another subject, another teacher and remaining there until the end of the lesson and returning to base. There were lots of positives about this micro programme. He could never be entirely sure about what was coming later in the day and so maybe he might regret planning an opt out. It also gave us a chance to tick off what had been done, acknowledge the good stuff and suggest starting again with the not so good. Also, and this is the bit that really seemed to appeal to Jack, it gave him a chance to watch the next stage, the immediate future becoming a reality as my pen moved over the paper. This slowing down of the giving of information allows a little extra time for processing that can make all the difference and measurably increase the likelihood of a successful
outcome.
If we were not sure of the finishing time of an activity or if it was the kind of session that did not have enough structure for Jack which made it more susceptible to disruption I put a timer on the programme and set the required number of minutes. This gave us more flexibility as if things were going well when the timer sounded we could renegotiate and put in a further timer, but if Jack had only just managed to hang on until the time was up at least he had kept his part of the deal. After a short while of using this strategy Jack asked if he could take the timer himself in his pocket. “OK,” I said rather reluctantly, thinking that I have got a spare one at home, as I fully expected it to come back smashed, or even not to come back at all having landed on the roof. But no, I was wrong and the timer survived unscathed, as did its minder for increasing lengths of time.
He showed his real appreciation and internalisation of these strategies when we went out for an activity day at the end of term. This was meant to be a free and enjoyable day so not an obvious one for programming and on arrival at the woodland adventure park Jack went to go running in ahead. He suddenly skidded to a stop and came back to me: “Oops Gail, you forgot my paper.” “So I did,” I admitted and we wrote “the paper” on top of a tree stump. Jack folded it up, put it in his pocket and it remained there, in the pocket, redundant. Well done Jack!
But, remember Jack had a history, a reputation which went before him.
So, whilst Jack quickly took ownership of a new coping strategy the grown ups were not such quick learners.
One day at the unstructured time after eating lunch and before afternoon classes began I happened to be the only member of staff in the room. In the cause of disruption avoidance I was reading a story with one of the pupils. If the pupil cannot read enough to tell me I am “saying it wrong,” I often simplify the language or personalise the story according to the situation. So instead of Dad coming in from the garden to get a bandage I said it was Jack who had been digging in the garden as he actually had been out digging not long beforehand. While continuing to read I was conscious of Jack going across to the kitchen area, unbolting the door and going inside. I kept reading with an eye and an ear on the kitchen. Then Jack reappeared carrying not one but two First Aid boxes which he presented to us: “Here you are, Gail. This is what you need.” So our story made a detour around the use of the First Aid box and being sensible and keeping safe.
I was delighted with his intervention, and surprised that he had actually been listening but what I was really pleased about was that I had been the only member of staff in the room otherwise Jack would not have made it to the kitchen. In fact he would probably have been
Jack and His Paper
outside the Head’s office or mooching in the playground as, if the teacher was occupied reading a story, support staff would have jumped on Jack as he moved to the kitchen “heading for trouble.” He would then have reacted badly and the real story would never have been told.
Things are not always what they seem.
Actions are not always saying what you think they are.
Gail Keating loves live music, live theatre, real life cinema: in fact, live art of all kinds made by creative people. She considers herself fortunate to have spent all her working life as a teacher with very-much-alive people, beginning with a primary remedial class in a very old school near Middlesbrough docks and ending with pupils with complex learning difficulties in Midlothian.
She particularly loved working with pupils who were described as “challenging the services” and believes that school should be fun for staff and pupils. On retiring from school she became involved in working with adults with learning difficulties in Literacy and Numeracy classes in Edinburgh. She is a true believer in Life Long Learning in all its forms.
To Dave the first pupil to show me the power of paper and pens.
To the colleagues and friends who had the idea on my behalf that I should write these words in the hope that they might help some people to think differently when communicating with people with autism or learning difficulties. They were very persistent and they know who they are.
To John, a parent, who told me that you can plan all you like but “they have to let you in.”
To Kara who spotted this book’s potential and Mollie and Albie who made it come alive.
Praise for Gail’s Paper and Pens
“Wonderfully refreshing, practical, realistic and personally motivational ... A delight to read.”
Frank Quinn, Learning Disability Nurse Training Tutor
Illustrated by Mollie Ray