It's Been a Privilege
Helene Cohen • 7 July 2019
Appearances can deceive
As one who has taught for over 34 years, I have naturally worked with so many children, but some make a bigger impression than others. Today I’m going to talk about a young man who I’ll call Fred. I use the term young man deliberately as, although good at clowning around and playing make belief games, he also was one of those old heads on young shoulder types. I worked with Fred on a daily basis for two and a half years, so got to know him extremely well. I was his English teacher as I taught the set with children who all had various SEND that impacted on their English, and I’m both an English teacher and a dyslexia specialist teacher.
When Fred first joined my class I did a lot of counting to 10! He had come from another school, and I didn’t then know the negative experiences he’d been through. All I knew of him was that he had Cerebral Palsy (CP). He seemed reasonably mobile, was extremely chatty, had the most off-the-wall sense of humour I’d encountered and more avoidance strategies than most. He could easily come across as lazy with writing that was unreadable and sentences that simply weren’t sentences. A total mismatch of class contributions and what was on paper. He was one of those children who make taking a deep breath a requirement before entering the classroom – what challenges will he pose for me today!
I decided that he should trial using a laptop in English because I couldn’t read a thing he wrote and he couldn’t remember what he’d been writing to read it back to me. What he thought he’d written bore no relation to what was on the page – this was in Year 4. He loved having a laptop, however I still needed him to explain what he’d written as letters seemed to be randomly chosen with not even a hint of phonic accuracy for the most part. Checking back on records from his previous school showed no indication of there being any need other than CP, yet he was surely dyslexic!
At about the same time his physical therapist (PT) and occupational therapist (OT) booked in for their first visit since he’d joined us, and I asked to sit in. It was only then that I gained a true insight into what Fred went through on a daily basis. Fred was in pretty much constant pain. His smiley manner and constant jokes were a mask that helped him to get through the day. He never complained about being in pain so I hadn’t even thought about routes around the school that would minimise stairs and offer him short cuts, as children in that school had to move around a lot between lessons. The OP and PT asked me and Fred to walk them through his usual day, and then commented on where he might be finding things difficult. That first visit we set up a few new routes and a buddy system so that he’d have someone with him. I learned a lot that day, as I did with every visit from the OT and PT. Another visit taught me about the ‘twist n write’ and ‘pen again’ pencils and pens and how they would ease the pain for him when writing. Yet another visit had me requesting handrails in various parts of the school. All the time I was learning not only about Fred’s needs for physically coping with CP, but also just how resilient he was.
Alongside all of this I had meetings with him and his parents. It transpired that at his previous school there had been a personality conflict between him and his class teacher – I said that he had a quirky sense of humour and his previous teacher didn’t ‘get him’. This teacher had instead seen this as laziness, so was always complaining to him and his parents about him being lazy, being untidy and not being bothered about his work. Nothing could be further from the truth. His father and siblings were all dyslexic, and screening showed that Fred would likewise get assessed as dyslexic. The laptop helped him to organise his thoughts and reorganise the words when he tried to read back what he thought he’d written. His dyslexia went far beyond spelling and reading: his working memory was weak; his ability to sequence on paper was very weak, with reversals far beyond letter orientation and order within words - the words within the sentences were in an apparently random order too; there was a mismatch of different processing skills, all of which added to the difficulty with getting his thoughts down. However, being able to be his English teacher, in a very small group, I was able to help him to become a fluent reader – comprehension was always far better than accuracy for Fred – and he learnt to spell, maybe not accurately, but at least so that others could understand what he meant. Gradually accuracy also developed, as did letter and word order.
Another aspect of working closely with Fred was his wheelchair. He didn’t need this all the time, only when his day was particularly demanding with the timetable including Games and PE as well as DT on another part of the site. There was also a reasonable walk to the dining hall for lunch. Although everyone in his key stage knew Fred and simply accepted the way he walked and the use of the wheelchair, once we were either off site or in the senior area of the school I saw the constant stares, sometimes snide remarks and oft times talking to the wheelchair pusher as opposed to Fred aspects that he dealt with on a regular basis. Whilst I knew this did get to him, he always ensured that others didn’t see this, keeping the smile and witty retort always at the ready.
The wheelchair highlighted something ridiculous in our system. Fed needed to walk as much as possible in order to strengthen muscles and keep mobile for as long as his CP will allow, so he doesn’t use it constantly. However, in keeping mobile there are days and times when the wheelchair is a necessity, as he has simply worn himself out. He insists on playing rugby and cricket, having a runner for him in the cricket, and loves it when playing for his school. However all of this mobility means that there’s a constant threat of having his wheelchair benefit removed. How mad is that? The authorities want him to use it more if he has it, and yet he needs to use it less if he is to best manage his CP – although obviously still needs it, just not all the time. There was an outing tha was basically a very physical day. He had his older sibling with and was lushed around all day, amid lots of joking. This initially looked like laziness on his part – he could have walked it – however, the final activity was an assault course and he was desperate to do that. He therefore saved all his energy and mobility for just that activity, and he loved it. So there you have it, using the wheelchair in the way that best accommodates his needs. How can they deny him that!
In two and a half years I only once recall seeing him truly upset. He was to be one of our school guides on an open day, but due to the amount of staircases, could only be a guide for KS2 tours. Everyone who came wanted to tour both KS1 and KS2. When I found him crying, and was told why, we asked him to take one of our school governors on a special tour to show how he moved around the building, taking different routes from the rest. He puffed out his chest with so much pride taking such an important person around. Just shows, there is always an answer and we can include so much more if we think of creative solutions.
The key messages from this snippet into my time with Fred are:
·Remember co morbidity – what other areas of need might there be?
·Just because someone is smiling doesn’t mean they’re not hurting, whether that be physically or emotionally
·Work with and gain the trust of our charges so that we know what they need
·Make the most of all of the experts we are privileged to meet
·Creative solutions are so important
·Please let the benefits system get sorted so that it’s not a tick box exercise but looks at the real needs of the claimants.
Thank you ‘Fred’, it was a privilege to work with you.
This is taken from a chapter I wrote in a book called ‘Selective Mutism in our own Words’ by Carl Sutton and Claire Forrester. It is an account of my time working with a girl who has selective mutism, during her time in primary education. Her name has been changed for ethical reasons. Working with Chloë has been one of the most rewarding, frustrating and emotional experiences of my teaching career. It was certainly the longest! I had encountered children with selective mutism before, when teaching in Secondary Schools; however, they were the ones who had managed to use the transition from Primary to Secondary to find their voice. Therefore, the selective mutism was no longer evident by the time I was teaching them. Allow me to introduce myself. I am Hélène Cohen; ‘Miss’, or Mrs Cohen to thousands of children, many of whom are now adults. I have been teaching for over 30 years, initially in the secondary sector, but more recently at a small, independent primary school. Working with all aspects of Learning Support has been my main interest, although I am also a teacher of English, leading the subject in the school referenced in this account. That’s probably all you need to know about me. So, back to Chloë. I shall be calling her this, having asked her to choose her name for the purpose of this account. That epitomises our relationship – everything up front, no tricks, no lies. She is the focus, after all. I first met Chloë soon after I started at her school. She was in the reception class, and her teacher expressed a concern about a little girl who wouldn’t speak in school. She would happily, indeed noisily, talk at home, but only around a very select few people. Not knowing where to start with this, I went on a course. I decided that three of us should go: her current class teacher, the one who would most likely teach her the following year and me. Thus I met Maggie. Maggie Johnson was running the course and it was she who opened my eyes to the fundamental nature of selective mutism: anxiety. This was a revelation to me, as Chloë could be seen playing happily with friends, especially when she thought we weren’t looking! Whilst appearing extremely shy, she always seemed happy in school. Initially, I worked with Chloë from a distance, offering support to her teachers, as they attempted the various steps as laid out in Maggie’s book. All was going well, slowly but well. Chloë started to record her reading at home to be played back to her teacher, she would quietly talk with a select few of her closest friends in school – definite progress. Then changes happened in her home life, and the little talk there was became less. I was also aware that Chloë would be moving up to KS2, across the road and with a very different regime, so the transition needed managing. There would be more teachers, most of whom would be new to her, and more movement around the school on a day-to-day basis. Added to this, Chloë was evidently an intelligent girl. I decided to work with her on a weekly basis, to build a relationship, so that she would have continuity when transferring to KS2. I always took her out with another child, to help her to feel more secure. This is when I saw, first hand, the full extent of the anxiety behind selective mutism. We used to play games that would develop her logical thinking skills. This would require Chloë to make choices, which is where the anxiety showed. Whilst whichever friend was joining her that week (there were 3 who would take turns) would happily select a response, placing a tile in the square of her choice; Chloë would sit, anxiously tearing at a tissue, reluctant to commit to her choice unless 100% certain. She would work away at the tissue, gradually shredding it, and select her response by holding this tissue and tile in both hands and slowly move her whole body gently forward until she touched the square where she needed to place her tile. Her face looked anxious, her shoulders tense - I find it hard to describe in words just how closed in and full of anxiety the movement would be. During this time I needed to do an assessment of her receptive vocabulary, as it was hard to place her academically due to her anxiety about getting an answer wrong. Using a picture based assessment, where I would say a word and Chloë would need to select one of 4 pictures that best fitted the word, her score was average, a standardised score of 102 where 100 is exactly average. For this assessment, Chloë only answered when absolutely certain of the answer and did this showing immense anxiety. My experience and intuition meant that I felt that this was not a reflection of her true ability. This is a concern for those who display selective mutism. The underlying anxiety means that a test situation will often not reflect true potential, so such a child could easily be placed in a set at school at a level below her ability, which will further undermine self-esteem. This can easily become a downward spiral, as self-esteem is essential to successful learning as well as to breaking the silence of selective mutism. To be continued next week…
As I worked with Chloë, I gradually gained her trust. The aforementioned honesty when working with Chloë was essential for this. I always outlined what we were doing, talked openly with her about her voice, and appealed to her innate sense of fun. This was helped by the introduction of home visits during the holidays. In her own environment, while she still didn’t speak in front of me, her sense of mischief started to shine through. We tried the various sliding in techniques as outlined in Maggie’s programme, but Chloë was not yet ready for this. Being sensitive, she picked up on how much her mother wanted her to succeed in speaking outside of the home and that in itself added to her own pressure and anxiety – all resulting from the mutual love between her and her mother. So instead, I drank coffee with Chloë’s mother and we would chat, so that Chloë could become more comfortable around me. There were small steps of progress surrounding the transition, the first being Chloë’s ‘accidental word’ in school. Here are the notes of the incident: “Today, at lunch, R saw Chloë being a bit silly and she was crawling on the floor, so he asked her if she was OK and she said, “Yes, fine.” Then quickly put her hand to her mouth, as if realising that she had said it out loud. R then asked her to fetch him a glass of water, which she did – albeit slowly. He then continued to eat his lunch quietly, without trying to make any conversation. C will inform Chloë’s mum of this incident. Hopefully Chloë will be able to reflect favourably on this.” This utterance was denied by Chloë, and still is to this day, although assurances were given that this didn’t mean that she would now be pressured to speak in school. Having established earlier than usual who would be Chloë’s teachers in Year 3, I ensured that all of the KS2 teachers and TAs underwent some basic selective mutism training with Maggie Johnson, so that none would put undue pressure on her and all would have some understanding of how communication would work. In Year 3 we also started on a range of activities with a small group of Chloë’s friends, all of which took away the pressure of making choices; things such as blowing bubbles and playing silly games. It was also agreed that I should be in the pool with Chloë for swimming lessons, supporting her and another child, to help them to become comfortable in the water. All of this seemed to help Chloë develop confidence around me and this was first seen when I redid the receptive vocabulary assessment. This time, albeit reluctantly, Chloë agreed to have a go even when unsure. This had a tremendous impact on her standardised score, which went up by 15 standardised points, a score much more in line with my understanding of her natural abilities. This in turn was a super boost to her self esteem and marked the start of her real cheekiness when working with me – it turns out that Chloë cheats, not to win, but to ensure that I lose! The transition to Year 3 was positive. I was able to monitor her progress more closely, being based in the KS2 part of the school. Chloë’s confidence gradually grew and she would sometimes ‘forget’ where she was and was even seen running, when she thought no one was watching. This confidence was noticeable in several ways. In Year 3, Chloë’s movements became bigger: from the closed in, anxious movements, tearing (or as we referred to it, killing) a tissue, she would now make ‘body sounds’, tapping, stamping, pinging a ruler on the table, and would even reach across to write on the class white board. Her silent, puppet-operating performance of ‘Head, Shoulders, Knees and Toes’ to her entire class was extremely entertaining and she even played the piano in assembly as everyone was filing in. Added to this, she started to record herself making the body sounds, and allowed me to play these to a select few members of staff. She also, through the dedicated work of an exceptionally patient teacher, started to join in with PE and Games for the first time. Every step of progress, for example with throwing and catching a netball, would then be shown to me so that she could build on this, and not deny her achievements. Her mother would then ensure that she rehearsed these skills at home, away from prying eyes. Notice how casually I threw in that Chloë played the piano in assembly. This was huge! It also involved tears – not hers. Her mother had, as agreed with Chloë, waited outside. I was in the hall. I managed to hold it together the whole time I was in Chloë’s presence, then quietly slipped out after her performance. The full force of the emotion and the enormity of what Chloë had achieved then hit me as I cried with her mother, quietly, outside the assembly hall. This epitomises the intensity of working with someone who has selective mutism. The emotional investment is high, but the rewards are higher. To be continued next week…
This leads me to make mention of how we communicated, negotiated and came to understandings. It was largely through writing and drawing. This would be done on mini whiteboards to allow for wiping things away. Chloë liked to be in control of the whiteboard. If I set out choices, she would draw little boxes in which to record a tick or cross to show her preferences. Whenever I drew a box, it was never neat enough for her exacting standards, and would be erased and replaced with one drawn by Chloë! Through this communication, I learned that she was texting some Year 6 girls, and had wished she had spoken the first time they had played together. This not only shows just how important each first encounter is, but how selective mutism is not a choice, not stubbornness, but deep rooted anxiety. Then the first real sound that I heard from Chloë, her giggle! Like Champagne being poured from a bottle. I have already mentioned her sense of fun, so the talking tasks were built around this. The friends chosen to join in were all gigglers, and as Chloë relaxed, so her laughter escaped. This helped her to move on to some silly sounds –‘huh’, tongue clicking and sucking against the roof of her mouth. These may all be tiny steps, but each marked huge progress for Chloë. Working with those who have selective mutism requires constant patience alongside tiny steps that each move things forward. It is so important to keep some momentum and not stay still, however tiny the steps may be. To further build on this, I became her Form teacher in Year 4. The only subject I taught her was spelling, as we don’t have all subjects taught by the Form teacher in our school, but it meant that she and I could touch base throughout the day. ‘Thumbs up’ became Chloë’s first form of communication with the now increasing number of teachers that she encountered daily. We built on this with technology. The first step was Chloë recording things at home for me to hear, including conversations with her mum and sister, reading and then questions for me, so that we were conversing remotely. Initially I heard these recordings alone, then with Chloë in the next room and eventually with her in the same room, so that she, her voice and I were in the room together. The emotion of hearing Chloë’s voice for the first time was overwhelming, so I was relieved to have been alone for that. Having focussed on the whole ‘underplay’ element – “no pressure, your voice will come in time” etc – had she witnessed my delightfully tearful response, it would have been hard to convince her that we were relaxed about her selective mutism. We then agreed who would be allowed to hear the various recordings, each initially being heard without Chloë present. The teachers would let Chloë know when they had heard her voice, and even those who thought they could distance themselves, were moved beyond their expectations by the impact her voice had on them. Her voice, an ordinary little girl’s voice. What had we all expected? I don’t know. Yet we all had the same first response – she sounds so normal! Recording Chloë’s voice progressed over the time she was in the Junior School. We used it in a structured way so that Chloë could demonstrate her learning to her teachers. This included explaining ‘forces’ to her male Science teacher; reciting numbers in French – a super French accent - and even telling us when things were troubling her. Throughout all of this, Chloë was supported by her friends. Everyone in her class was reminded that Chloë hadn’t yet found her voice, but would do so in time, so that the openness was there throughout. While Chloë was in Year 4, I saw Maggie Johnson’s television programme on selective mutism. In this there was a child who would communicate with her grandfather by texting. I thought this would be a good idea to introduce at school, as it would allow ‘in the moment’ communication between Chloë and her teachers. We’d tried a mini whiteboard, but these ‘show me’ boards are still a fairly public form of communication, which was quite daunting for Chloë. I purchased two extremely basic phones, one black and one pink, that each had the other’s number saved so that they could be used solely for texting each other. This proved a success. Chloë was able to answer questions in class and even let me know if something was bothering her. Hers was the pink phone, naturally! The amazing thing is how accepting the other children always are. The worries of their reaction to a child having a phone in school, albeit a basic one, were short lived. Having seen it, and had the reason for it explained, they simply accepted it. This is true of so many interventions for learning support. I remained Chloë’s Form tutor for Year 5. We had a fun activity of writing riddles and her classmates would be called on to offer theirs to the group. How could Chloë join in? Chloë and I agreed that she would record her riddle on a talking postcard, which I could then play to the class. This would be a big step for Chloë, as most of her form had been at school with her for several years by then without ever having heard her voice, so this needed to be considered carefully. Eventually we agreed that we would use the talking postcard with several children first, so that it wouldn’t automatically signal that the voice was going to be Chloë’s. Then when the day came to play Chloë’s riddle she would first leave the class, ostensibly to run an errand for me, so that she could be out of the room when it was played. Then, after the class had heard it, I would explain that it had been Chloë. I made one mistake. I forgot to tell her closest friend what I was doing. All went to plan and Chloë went to fetch something from my office. I played her riddle and noticed that Chloë’s closest friend was looking daggers at me. Credit due, she didn’t say a word to indicate whose riddle we were hearing. She just sat there, staring at me, pure anger in her eyes. After solving the riddle, one by one children started to ask whose riddle it was. I looked straight at Chloë’s friend and explained not only whose riddle it was, but that she knew that I was playing it to them, which was why she was out of the room. Her friend relaxed immediately and I apologised for not having forewarned her. Key to this stage was to explain to the class that they were not to make a fuss about this when Chloë returned to class. This is the crux of what she had been dreading, the attention made of her once everyone realised that they had heard her voice. To be continued next week…
Later in the same year I introduced an inter-house poetry recital. Every child in the school had to learn a poem by heart and recite it to the rest of the year group, then 4 children in each year would be selected to represent their house on stage, in front of the entire Junior School. Chloë was to be no exception, so she duly learned her poem – naturally a silly one – and recorded it. We played that recording to the whole of her year group, with her in the room, another huge step forward. Every teacher and TA were allowed to hear this, so that now her voice had been heard by many. Chloë was widening her circle of friends and even speaking with some of them in school, out of the hearing or adults. Transition time again. As Chloë started year 6, we needed to consider her best interests for secondary school. It was felt that she would benefit from moving school, having a fresh start, as the key obstacle to her talking was now the fact that she hadn’t already done so and it would be a break from the norm for her. At a new school there would be no expectation of her silence, making it easier for her to speak. Our main target was for Chloë to be able to speak when starting secondary school. To that end, the summer break between years 5 and 6 included several home visits. We started by developing the use of the phone. Initially I wasn’t allowed to speak, just listen. I would text Chloë a question, ‘What did you have for breakfast?’ Chloë would have time to prepare her answer, then text me so that I knew the phone call was coming. I would answer the call and say nothing while Chloë spoke. This was using speaker phone at her end. The call would be ended. Gradually I was able to say ‘Hello’ and ‘Goodbye’, and then ask the question while on the phone, making it more like a conversation, albeit very structured. One advantage of the phone call is that it could happen throughout the school holiday, so that there was no break in communication. When I went away, we could still have our regular ‘chat’. As stated before, we have to keep the momentum going, moving forward in these small steps, so I brought the use of the phone into the home visits. For some time now we had been playing the card game ‘Fish’ as the talking task. Progress had been slow but constant, so I arranged for a home visit on a day when I could spend as long as was needed. Here’s how it went: We started by generally chatting, that is to say that I chatted with Chloë’s mother while she and her sister played. We then moved to the game 'Fish', using the ‘sliding in’ technique. I stood just outside of where they were playing, round the corner but within the room itself. I could just about make out Chloë speaking very quietly, but what was really noticeable was that her younger sister initially reverted to whispering herself. Being only six years old, when she forgot that I was there – as she couldn't see me – she started to talk properly. This was an important observation, as it showed how her sister had been mimicking Chloë’s behaviour, making herself at risk of selective mutism. Stopping the game, I spoke to Chloë alone and explained to her what was happening with her sister. As stated before, I have always been extremely open and honest with Chloë and she acknowledged that her sister was doing what I'd said. Although concerned that I might be putting pressure on her, I felt it important that Chloë understood this impact of her own difficulties. I then got Chloë to go upstairs and use my phone as a recording device to simply say her numbers, Ace to King as used in ‘Fish’. After she'd done this a few times, and her voice had become normal on the recording, I suggested that she phone me from her room to my mobile. Initially she did this evidently using speakerphone, so I suggested that she put the phone to her ear and repeated the numbers after me each time. I said, ‘Ace’, then she said, ‘Ace’; I said, ‘2’, then she said, ‘2’ etc. She did this in a clear normal voice, responding to me each time. I then got her to repeat the process standing in the upstairs hall, then sitting halfway down the stairs, then in the doorway to the lounge – with me reassuring her that I had my back to the doorway, then partway in the room, then to sit on the couch behind where I was and do it without the phone, repeating the words after me. Then I got her to stand directly behind me and repeat the words after me. By this time the words were in a very squeaky strained voice, but they were voiced not whispered. Chloë and I then played a game of ‘Fish’, where she was looking at me the whole time while saying the card she wanted. Again her voice was very quiet and squeaky but it was a definite voice and I could understand which card she was asking for each time. We then played the game once more with her mum and her sister joining us. Then before I left I got her to say, ‘Thank you’ for the cookies I'd taken in, and say goodbye to me. I still don’t know how I did that in such a nonchalant manner. My heart was racing and I wanted to shout my delight at this progress, but I knew that any indication that this was a big deal would blow it! I calmly walked to the car, drove round the corner and out of sight of her house, then allowed the pent up emotion to flow through my tears. Such feelings could only be shared with one who’d understand, so I phoned a close colleague who’d been sharing this journey. Together we could allow the necessary outpour. Year 6 was a year of key development, with colleagues emailing me examples of her progress. Chloë completed tests and exams, answering all questions, allowing her to achieve grades closer to her abilities; she joined in a dance routine in the school talent show; she was on stage for the sharing assembly, and played a recording of herself saying ‘Moo’ – she was a cow – in front of not only the entire Junior School, but many of the parents too; she had a go on the ‘Bucking Bronco’ at the summer fete, for all to see and joined in the Science revision quiz, pressing her loud buzzer and holding up an answer on a ‘show me’ board. The transition wasn’t straight forward and necessitated an appeal to get her into a school that was small enough to allow her to flourish. Our contact has also not ceased. How can it when it has been so intense? She is speaking at her Secondary School. However, the anxiety doesn’t miraculously disappear. As I said earlier in this chapter, selective mutism is not a choice. Her speech is quiet, and mostly in response to direct questions. She misses her friends from our school, although has become closer to one of the two girls who moved to the same school as her. The anxiety now shows through feeling unwell. Initially she was physically sick each day. This is no longer the case, but she still struggles to eat properly throughout the school day, depending on a good breakfast and food as soon as she returns to the security of her home. I don’t know if Chloë will ever talk calmly with me, but while I can’t deny that I would love to be able to chat easily with her, it doesn’t matter. It’s about Chloë. It always has been. It’s always about the person with the difficulty, it has to be. That’s the nature of the job. Our part is to come up with the steps that will facilitate progress, being patient throughout and keeping our emotions away from the child. The rewards are worth every second of time, drop of patience and tear shed. Postscript I visited Chloë’s mum (who I’ll call Naomi, to make this flow better while keeping the anonymity) after Chloë had moved to Senior school, which is how I knew of her progress in school. I have an open house once a year, and after a year had passed I invited Naomi to join us for this, along with the girls. My son does magic, and during this open house day, he performed card tricks for the girls, unaware that Chloë had SM. Chatting with my son later that day I discovered that Chloë had been talking with him, joking while he was performing the magic. I was both surprised and delighted. A few months later still, I was visiting Naomi during the school holidays. I had thus far only visited in term time, while Chloë was at school, as I felt she needed the space to move on. On this occasion, we were all in the living room, girls on their phones while Naomi and I nattered on. As usual, Naomi would turn to Chloë and we would include her in the conversation, with no expectation or pressure for her to talk. Then Naomi said something that she was a bit confused about and Chloë just corrected her, talking as though this was something she always did with me there, totally naturally, and Naomi and I just carried on the conversation as though this were the norm. Gradually Chloë joined in more and more with our conversation, joking, chatting, and of course, still playing or texting on her phone – she is a normal teenager after all. She popped into the kitchen to get a drink, taking her sister with her, and Naomi and I did a silent , excited, arm waving scream, quickly re-setting our grins into a normal facial expression before Chloë returned. As I left that day we did a silent excited ‘dance’ on the doorstep, out of Chloë’s sight and then I texted Naomi about how excited I felt about this and she texted back something similar. We were both surprised and delighted, especially as she had said, years earlier, that she wished she could talk with me but felt she never would. This was huge. I still visit and see the family when out and about – they live near to me. Each time we meet Chloë chats with me and it still feels wonderful, especially as her voice is natural and relaxed on these occasions. The shame is that people can assume that once there is speech the anxiety has gone. It’s sadly not that simple. There are still situations in which it is hard for Chloë to speak and some of the anxiety has transferred to other behaviours, such as eating in school. Chloë remains one of the most amazing communicators I know. Her eyes are full of expression, and she can convey meaning with or without words. When she speaks, aloud, she does so with that sense of fun and mischievous twinkle that was there when she was silent, making her more expressive than ever. I owe Cholë a great deal, as through her I have learned so much about small steps approaches, working with the specific child’s needs and strengths and ensuring that the child is always placed at the heart of any support. Patience is so important, and after all, my own rewards became far greater than I could ever have hoped. I meant what I wrote about it not mattering that Chloë hadn’t talked to me, but it mattered more that her silence had been broken so that she could access more at secondary school; however, I can’t deny the amazing glow of warmth every time we share our chat.
As I worked with Chloë, I gradually gained her trust. The aforementioned honesty when working with Chloë was essential for this. I always outlined what we were doing, talked openly with her about her voice, and appealed to her innate sense of fun. This was helped by the introduction of home visits during the holidays. In her own environment, while she still didn’t speak in front of me, her sense of mischief started to shine through. We tried the various sliding in techniques as outlined in Maggie’s programme, but Chloë was not yet ready for this. Being sensitive, she picked up on how much her mother wanted her to succeed in speaking outside of the home and that in itself added to her own pressure and anxiety – all resulting from the mutual love between her and her mother. So instead, I drank coffee with Chloë’s mother and we would chat, so that Chloë could become more comfortable around me. There were small steps of progress surrounding the transition, the first being Chloë’s ‘accidental word’ in school. Here are the notes of the incident: “Today, at lunch, R saw Chloë being a bit silly and she was crawling on the floor, so he asked her if she was OK and she said, “Yes, fine.” Then quickly put her hand to her mouth, as if realising that she had said it out loud. R then asked her to fetch him a glass of water, which she did – albeit slowly. He then continued to eat his lunch quietly, without trying to make any conversation. C will inform Chloë’s mum of this incident. Hopefully Chloë will be able to reflect favourably on this.” This utterance was denied by Chloë, and still is to this day, although assurances were given that this didn’t mean that she would now be pressured to speak in school. Having established earlier than usual who would be Chloë’s teachers in Year 3, I ensured that all of the KS2 teachers and TAs underwent some basic selective mutism training with Maggie Johnson, so that none would put undue pressure on her and all would have some understanding of how communication would work. In Year 3 we also started on a range of activities with a small group of Chloë’s friends, all of which took away the pressure of making choices; things such as blowing bubbles and playing silly games. It was also agreed that I should be in the pool with Chloë for swimming lessons, supporting her and another child, to help them to become comfortable in the water. All of this seemed to help Chloë develop confidence around me and this was first seen when I redid the receptive vocabulary assessment. This time, albeit reluctantly, Chloë agreed to have a go even when unsure. This had a tremendous impact on her standardised score, which went up by 15 standardised points, a score much more in line with my understanding of her natural abilities. This in turn was a super boost to her self esteem and marked the start of her real cheekiness when working with me – it turns out that Chloë cheats, not to win, but to ensure that I lose! The transition to Year 3 was positive. I was able to monitor her progress more closely, being based in the KS2 part of the school. Chloë’s confidence gradually grew and she would sometimes ‘forget’ where she was and was even seen running, when she thought no one was watching. This confidence was noticeable in several ways. In Year 3, Chloë’s movements became bigger: from the closed in, anxious movements, tearing (or as we referred to it, killing) a tissue, she would now make ‘body sounds’, tapping, stamping, pinging a ruler on the table, and would even reach across to write on the class white board. Her silent, puppet-operating performance of ‘Head, Shoulders, Knees and Toes’ to her entire class was extremely entertaining and she even played the piano in assembly as everyone was filing in. Added to this, she started to record herself making the body sounds, and allowed me to play these to a select few members of staff. She also, through the dedicated work of an exceptionally patient teacher, started to join in with PE and Games for the first time. Every step of progress, for example with throwing and catching a netball, would then be shown to me so that she could build on this, and not deny her achievements. Her mother would then ensure that she rehearsed these skills at home, away from prying eyes. Notice how casually I threw in that Chloë played the piano in assembly. This was huge! It also involved tears – not hers. Her mother had, as agreed with Chloë, waited outside. I was in the hall. I managed to hold it together the whole time I was in Chloë’s presence, then quietly slipped out after her performance. The full force of the emotion and the enormity of what Chloë had achieved then hit me as I cried with her mother, quietly, outside the assembly hall. This epitomises the intensity of working with someone who has selective mutism. The emotional investment is high, but the rewards are higher. To be continued next week…
This is taken from a chapter I wrote in a book called ‘Selective Mutism in our own Words’ by Carl Sutton and Claire Forrester. It is an account of my time working with a girl who has selective mutism, during her time in primary education. Her name has been changed for ethical reasons. Working with Chloë has been one of the most rewarding, frustrating and emotional experiences of my teaching career. It was certainly the longest! I had encountered children with selective mutism before, when teaching in Secondary Schools; however, they were the ones who had managed to use the transition from Primary to Secondary to find their voice. Therefore, the selective mutism was no longer evident by the time I was teaching them. Allow me to introduce myself. I am Hélène Cohen; ‘Miss’, or Mrs Cohen to thousands of children, many of whom are now adults. I have been teaching for over 30 years, initially in the secondary sector, but more recently at a small, independent primary school. Working with all aspects of Learning Support has been my main interest, although I am also a teacher of English, leading the subject in the school referenced in this account. That’s probably all you need to know about me. So, back to Chloë. I shall be calling her this, having asked her to choose her name for the purpose of this account. That epitomises our relationship – everything up front, no tricks, no lies. She is the focus, after all. I first met Chloë soon after I started at her school. She was in the reception class, and her teacher expressed a concern about a little girl who wouldn’t speak in school. She would happily, indeed noisily, talk at home, but only around a very select few people. Not knowing where to start with this, I went on a course. I decided that three of us should go: her current class teacher, the one who would most likely teach her the following year and me. Thus I met Maggie. Maggie Johnson was running the course and it was she who opened my eyes to the fundamental nature of selective mutism: anxiety. This was a revelation to me, as Chloë could be seen playing happily with friends, especially when she thought we weren’t looking! Whilst appearing extremely shy, she always seemed happy in school. Initially, I worked with Chloë from a distance, offering support to her teachers, as they attempted the various steps as laid out in Maggie’s book. All was going well, slowly but well. Chloë started to record her reading at home to be played back to her teacher, she would quietly talk with a select few of her closest friends in school – definite progress. Then changes happened in her home life, and the little talk there was became less. I was also aware that Chloë would be moving up to KS2, across the road and with a very different regime, so the transition needed managing. There would be more teachers, most of whom would be new to her, and more movement around the school on a day-to-day basis. Added to this, Chloë was evidently an intelligent girl. I decided to work with her on a weekly basis, to build a relationship, so that she would have continuity when transferring to KS2. I always took her out with another child, to help her to feel more secure. This is when I saw, first hand, the full extent of the anxiety behind selective mutism. We used to play games that would develop her logical thinking skills. This would require Chloë to make choices, which is where the anxiety showed. Whilst whichever friend was joining her that week (there were 3 who would take turns) would happily select a response, placing a tile in the square of her choice; Chloë would sit, anxiously tearing at a tissue, reluctant to commit to her choice unless 100% certain. She would work away at the tissue, gradually shredding it, and select her response by holding this tissue and tile in both hands and slowly move her whole body gently forward until she touched the square where she needed to place her tile. Her face looked anxious, her shoulders tense - I find it hard to describe in words just how closed in and full of anxiety the movement would be. During this time I needed to do an assessment of her receptive vocabulary, as it was hard to place her academically due to her anxiety about getting an answer wrong. Using a picture based assessment, where I would say a word and Chloë would need to select one of 4 pictures that best fitted the word, her score was average, a standardised score of 102 where 100 is exactly average. For this assessment, Chloë only answered when absolutely certain of the answer and did this showing immense anxiety. My experience and intuition meant that I felt that this was not a reflection of her true ability. This is a concern for those who display selective mutism. The underlying anxiety means that a test situation will often not reflect true potential, so such a child could easily be placed in a set at school at a level below her ability, which will further undermine self-esteem. This can easily become a downward spiral, as self-esteem is essential to successful learning as well as to breaking the silence of selective mutism. To be continued next week…
I’m republishing this blog, having just reviewed a new book on girls with autism – I’m Maisie and I’m Autistic, by Alison Handley. It shows how easily girls with autism can be overlooked as well as how they might present differently from boys. It offers tips for supporting any difficulties they may have as well as highlighting the positives. In a similar way, Kathy Hoopmann is publishing a revised ‘All Cats’, now including the female perspective. This is an area that really interests me as research has developed so much since I first learned about autism many years ago. It was always thought that autism was typically a boy thing, even described as extreme maleness. Whilst every child is unique, after working in the field of SEND for several years, you can find yourself noticing the boy likely to have autism. There are of course a range of learning needs that might initially appear to be autism, such as Attachment, so it is always important to learn as much as possible about a child’s behaviours at home as well as at school and in a range of contexts within the different settings. Background information is really important and there are often sensitive and emotional discussions that need to happen with family members to ensure that the best understanding is reached. However, usually the behaviours are there to prompt the discussion. This is not always the case with girls. There’s the girl who seems on the surface to fit in, but then says or does something that just doesn’t sit right. Her movements are just ‘off’, she seems to try so hard and just ‘miss it’. She can talk to us as teachers for ages, yet she’s always just on the edge of every social group, preferring to play with those in the year group below. Something niggles, but what is it? She seems silly and immature at times, and then so thoughtful and caring at other times. There’s another girl who just refuses to do certain things. Her responses vary – sometimes a complete meltdown, shouting out, full of frustration, all directed towards herself. “I can’t, I just can’t” shouted over and over, biting at her fist. Other times she starts writing and pages of beautiful imagery flow with the ease of someone far older than she is. She might ball her fists and rock gently, but there’s no indication as to what could be causing such anxiety, then she’ll suddenly, from appearing to be totally uninvolved in the discussion around her, come out with a remark that totally stops you in your tracks. Then again there’s the girl who seems totally happy all day at school; she has friends, she works hard, she is a bit of a perfectionist but nothing even rings an alarm bell. Occasionally she gets a bit upset, but quickly recovers. Her mum catches you at the end of the day and starts to describe a child you just don’t recognize. She has tantrums at home. She gets so angry. We fight over her homework. When we go out she sometimes just totally refuses to wear anything even remotely appropriate. She’s awful if we have to visit people, especially if she doesn’t know them well. You question whether the girl they’re describing is the girl you’re thinking of as none of that occurs in school. What’s going on? Well the first one took a while to work through. We considered dyslexia, having seen her writing, and then dyspraxia with these clumsy movements, but it was the lengthy discussions with parents about her behaviour at home that gave the first clues. She had meltdowns. Huge meltdowns, before and after school. Fortunately I’d been looking into autism in girls and the right bells started to ring in my head. When eventually I shared Kathy Hoopmann’s books with the girl’s parents so much started to make sense to them. Always a tricky one, how to bring up the possibility of autism, but luckily this girl had parents who were receptive to any ideas, just pleased that someone had worked out that something needed exploring and their little girl wasn’t simply being naughty or lazy as previous schools had told them. Also they weren’t being over fussy parents. Discussions with the girl, some adjustments in class and some explaining to teachers about appropriate strategies made a huge difference. At home they were able to have a lot of conversations about things in advance of them happening and modify demands on their daughter so that meltdowns gradually reduced. For the second girl the first priority was that she stop biting herself. Chewbuddies! There’s now a wonderful range of chewable ‘jewellery’, made from silicon that those with autism or sensory needs can have on them at all times to bite down on, or chew at when feeling stressed. This child also had other sensory sensitivities, one of which being the feel of paper. This is a real issue at school, when touching paper occurs in every lesson. This is then magnified as the girl is extremely artistic. Two solutions, a fingerless glove reduces contact with paper and the use of a computer not only supports this but helps with the mild dyslexia that she also has. A safe place was needed for her to calm down and a general awareness in both staff and children so that someone would fetch me, or other key people, when she had a meltdown. Lots of discussion prior to changes was also a part of the support in place. Again, the wonderful parental attitudes were so helpful in getting the right support in place. For the third girl I’ve mentioned in this blog I relied so much on good parental relationships. We had lengthy meetings when her mum first voiced her concerns and eventually, once we agreed that they would be going for a diagnosis of autism, I was asked to share the Kathy Hoopmann books, that I had shared with them, with their daughter so that she could better understand herself. We changed demands about homework, and ensured that she had fully understood the expectations and the tasks set. Her teachers ensured that she knew that she wouldn’t be in trouble if her homework was late. That had been a key cause of meltdowns, as she would be exhausted when arriving home from school, having masked her difficulties all day. Then she would struggle with homework and wake up worried about being told off for getting it wrong or not completing it. It was like a downward spiral, as she would meltdown before school, then meltdown again about being late, then be exhausted before she even entered a classroom. We explained to the girl that if she had a meltdown before school, she was to come in late and would not be in trouble for that, which alleviated some of the anxiety. Obviously a range of other strategies were in place for the three girls. These are only snapshots of 3 of the amazing girls with autism, with whom it’s been my privilege to work. There have been others, and there is even some overlap between them, but they are all so very different and individual and have at times been overlooked when it comes to assessments for autism. I’m lucky. I’ve attended several conferences where I have met and heard from different women with autism. Two who come to mind, who have been amazing to learn from, are Ros Blackburn and Robyn Steward. If you get the chance to hear either of them speak – take it! I have learned so much from them and know that I still have so much more to learn. It’s a growing area in research and one that we need to be aware of if we are going to provide the support that these girls need. Without the support, there will be serious mental health issues for some of these girls so we have a responsibility to learn, to ask the right questions, to not make assumptions and to offer support. Also worth taking a look at www.bornanxious.co.uk as they have a range of clothes without labels.
I have an amazing collection of puppets, which I have amassed over time. These have proved so useful over the years. The thing about puppets is to practice first, so that they blend in when talking to people. It’s a hard one to explain. Most of my puppets are animals, as they can then seem very realistic, if used properly. I can be having a conversation with someone while absent-mindedly stroking my cat puppet that I am moving almost imperceptibly. I hold the puppet close to my body, so that it’s harder to spot that my hand is inside, adding to the realism. I said that I practice – well I have even been told, when practising puppetry while out having a coffee with a friend, that cats weren’t allowed in the café! That’s when I know that the puppet is ready to be used. So how do I use them and with whom? It depends on the puppet and the reason. I had a puppet of a person, one that has hands that you can put your hands in, like a glove. That one was used with two children for very specific reasons. One was a hearing impaired girl who was reluctant to practise her sign language. Having hands and fingers meant that this puppet could be used to sign. I would sign using the puppet, which the girl adored, and then she would both sign back to the puppet and then use the puppet to teach her friends some of the signs. I also used this puppet with a girl who had selective mutism. Whilst this girl was unable to make any big gestures or movements, keeping her body very closed in on herself, she was able to get the puppet to act out ‘heads, shoulders, knees and toes’ while I sang, even eventually doing this in front of her whole class. She could hide behind the puppet, and this was just one of the methods used in helping her to communicate with her classmates. That particular puppet has now been passed on to my daughter-in-law who works as a teacher of the deaf. Small finger puppets, mainly of mice, birds and other small creatures, have been used as small reassurances for children with anxiety and with ASD. These, again realistic, are small enough to stay on the desk or be put in a pocket and they seem to remind the children that they are not alone and are being cared for; a simple reassurance that can be carried around with the child on a day when they are especially anxious. Likewise, smallish puppets of rabbits, cats and even a porcupine have been used for children who are struggling with partner work. They take the puppet as their partner and talk things through with the puppet. There have been a few ASD children who have found this a gentle way in to actually working with a real partner –‘Ratbag’ has been a favourite for this. When I am on playground duty, I invariably have a puppet with me. My owl, my dog, my cat, my large long-haired rabbit and my tortoise are firm favourites here. As I said before, I tend to largely ignore the puppets, absently stroking them as I wander around the playground. Children always come over to talk to the puppet and stroke it. They know it’s a puppet, yet treat it as something real. They will often tell the puppet if something is bothering them, giving me the opening I need for a further conversation. Sometimes a child who is struggling with break time will borrow the puppet. The puppet becomes a magnet for other children and soon the puppet is returned to me as the child now has people to play with. The tortoise is good for this as its head can be pulled into its shell, slowly coming out and then retreating again, displaying its shyness. Puppets are also useful for problem solving, as the puppets act out the situation that has gone wrong and the children will happily tell the puppets what they should have done and how they should be behaving, This can be a super starter for some difficult conversations, whereby the children find their own solutions to difficult situations through the puppets. I have used puppets in secondary schools as well as primary schools. Their success depends not only on the child but on the skill of the puppeteer. Big bold gestures scream out ‘I’m a puppet’, but the realistic approach seems to go down better with older children than might be expected. Sometimes the chid just wants to handle the puppet themselves, knowing it’s a puppet, but somehow that is more legitimate than holding a cuddly toy. The handling of the puppet can be soothing, helping a child to relax and to talk. It’s important to be relaxed and not self-conscious when using puppets. I’m no good at doing voices with them, so I let the puppets ‘talk’ by simply being. I act as though the puppets are real animals, and the children end up doing all of the talking. I strongly recommend using them yourself in everyday situations before using them with children as you do need to know the puppet and be natural with it for this to be a useful strategy. Worth a go and lots of fun!
I'm republishing this with a new take. The latter part refers back to the United Nations report on the UK's welfare system, so please do read it. However I first want to mention matters in line with the related video blog out today. When we think of vulnerable people in connection with the Coronovirus, we think of those over 70 and those with underlying health issues. What is not being discussed as much are our vulnerable children. Not so vulnerable to the virus, but vulnerable due to the steps necessarily taken to manage and contain the virus - school closures. There are children for whom school is where they access a proper meal. These children come hungry to school and possibly get no food when away from school. There are charities who help during school holidays, such as 'Feeding Britain' 'Fare share' and ' Akshaya Patra (see the article: Foundation ' https://www.theguardian.com/education/2020/mar/09/charities-feed-children-if-coronavirus-shuts-uk-schools ) However, this is something that needs addressing on a greater scale than these charities can manage, and I've heard nothing from the endless news bulletins to address this area. There are other children where home is not safe, the abuse they endure is often first spotted at school. If schools are to shut, how will these children be identified and receive the support they need? There are also many child carers, for whom school provides 8 hours of respite. Again I ask how these children will cope. This then leads me to raise the concern of social workers. Our social workers, like others in caring professions, visit the houses where hands are not regularly washed and infection kept at bay. They then are vulnerable to infection and the need to self-isolate. This then leads to a shortage of social workers, when our most vulnerable children most need them. I don't have the answers, but I believe the issues need raising by those who might be able to support these children. We have a duty of care as a society to protect our most vulnerable. Each of us, within our own communities, can try to do our bit. I still feel that this needs a more focused effort and we need to push government towards addressing this before the concerns are exacerbated due to the inevitable school closures. UN report by Professor Philip Alston about the UK welfare systems. The report is only 20 pages and available at: https://www.ohchr.org/Documents/Issues/Poverty/EOM_GB_16Nov2018.pdf It’s worth the read! Damning and deeply concerning, but unfortunately, not surprising. The criticisms it makes are focused and well evidenced, showing that while the UK remains the world’s 5th largest economy, a fifth of the population live in poverty. The welfare system is described as being one that is punitive to the most vulnerable in society. What does this mean for us as teachers? For some of us, depending on where we teach, it may not mean much in terms of the children we work with in our classrooms, however there we have an learning opportunity so that those fortunate not to be included in the poverty statistics have an awareness of the good fortune and develop the social conscience that’s needed moving forwards. Most teachers will be teaching some children who are part of the statistic, especially since, according to the report, recent changes in social support mean that child poverty is on the rise. Add to this that nearly half of those in poverty have a family member with a disability and the problem grows. The area where a school is situated will largely determine the socio-economic position of the children, with some schools having a wealthier or poorer catchment area. However, in most schools there will be a mix, which gives us as teachers a responsibility regarding our expectations and our actions. We can’t change the world, but we can do our bit. Many teachers I know, including myself, have taken food into school to ensure that the children they teach have eaten before they start to learn. No we shouldn’t have to do that. Yes there is enough food produced in this country so that no child should arrive in school having not eaten since their school dinner the previous lunchtime, but yes it does happen and more often than is largely realised by society. Another small thing that can make a huge difference is recognizing that a child having difficulties learning school may well have parents who have similar difficulties. We regularly send home written information to parents and then tell off the child who hasn’t returned the form. What if the parent has been unable to read the letter? We often assume levels of literacy in parents, simply because we can read. A simple phone call home asking if they received the letter about… can make a huge difference without causing embarrassment if handled well. Today I was reminded of the charity The Hygiene Bank: https://www.thehygienebank.com/ Whilst we are all aware of the need for and use of food banks, hygiene is an aspect of poverty that can easily be forgotten. Poverty means that people have to make stark choices, ones that the majority of use, especially as teachers, find hard to imagine – food or soap? Food is needed to stay alive, but without the access to maintaining personal hygiene the children we teach suffer humiliation, loss of dignity and social exclusion. How then can we expect these children to be focused on Maths, English, Art etc? These are real issues. There have been articles in the press about girls missing school because they can’t afford sanitary towels. This is happening in the UK, yet I grew up assuming that was only an issue in other, less wealthy countries. My local ASDA store have a red box for hygiene and sanitary products to help combat period poverty. Easy to contribute, although the need should not be there! We can’t solve these problems. We, as teachers, often provide toast for pupils who arrive at school hungry, but this is a tiny fix for a tiny aspect of the issue. We can try to raise our awareness and be mindful of the lives to which those young people in our charge will be returning at the end of the school day. We can help parents when they have to fill out forms - always filling out forms when in need of support. It’s often tough filling out forms when you’re literate and well educated. Imagine having to do that when you have literacy difficulties. It can also be humiliating to ask for help, especially if school was a negative experience, so how we make the offer of support needs sensitivity. When a child is refused an EHCP, it is the parents who have to appeal, not the school. With our workload being what it is and the other applications we have to make, the easiest thing is to move on to the next application and leave the parents to it. We are often leaving them to a task they are ill-equipped to face. Not so for those who have the resources to make these appeals, financial and educational resources, but for those in poverty making an appeal is too daunting. The language itself creates a power exchange that is hardly in their favour: appeal, tribunal, legal advice. Time taken by a teacher, a HLTA or a SENCO to sit down with a parent, go through the process and help them to complete forms can make a huge difference, as can accompanying the parents to the tribunal or to any meetings with professionals and legal advisors. We can do this. I have accompanied parents to GP and SaLT appointments so that they have the confidence to raise any concerns, or even to raise concerns for them. Then after the appointment taken the time to go through the outcome and next steps so that they understand what has been said and what they have to do. None of this should be necessary. We trained to teach. However, in our society in its current state, how can we ignore the realities of our most vulnerable? ©Hélène Cohen
I was sent this article by my doctoral supervisor. She pointed out a few that applied to me, something which made me somewhat emotional and reinforced just how much she ‘gets me’. We know that dyslexia is a specific learning difficulty with the written word, but it is so much more than that. This article, while obviously dealing with generalities, points out some of those other aspects of living with dyslexia. To understand a bit about how this applies to me, please watch the related video blog. The Article It’s hard to understand it, isn’t it? If you’re not one of the ten to fifteen percent of the population with dyslexia, it’s really hard to understand what it’s like. It’s easy to think that it’s a bit of a scam. That if people with dyslexia worked harder, and really applied themselves, they could “get over it.” But that’s not the case. Life is actually much more difficult for people with dyslexia. They have brilliant minds, but they’re hard to focus. Dyslexia is a gift—the gift of being able to see things from lots of different points of view, all at once. But the gift comes with a curse, and the curse is that it’s hard to prioritize, or make sense of, all those perspectives. People with dyslexia can be hard to live with, and hard to love, because their brains work so differently to ours. Even if you love someone with dyslexia, the day-to-day living with it can drive you insane. Because they can forget things, believe they’ve said or done things they haven’t, be incredibly messy and disorganized, and be less socially aware than other people. The best thing you can do is to understand more about dyslexia, so you’re less exasperated and more sympathetic. This is an insight into how their minds work. 1. They have lifestyle challenges. Dyslexia is much more than just having difficulty reading, writing, and using numbers. They see the world in a completely different way, communicate differently, and have trouble organizing things. Some people describe it as a lifestyle challenge, others as a lifestyle curse, because it affects almost all aspects of their lives. 2. They can seem weird. Despite their high intelligence, and because they see so many different perspectives at once, they can appear incoherent in conversation. They can come out with strange ideas and lack the ability to check if their thoughts are suitable for conversation. They can seem almost autistic because they’re often unaware of social rules. 3. They find details exhausting. Because their brain is less efficient at processing letters and sounds, it has to work harder—much harder. So any time spent reading, using numbers, or focusing on details is really, really exhausting. 4. They function differently on different days. Some days they seem to function better than others and can appear to be improving. Other days, it’s like everything is getting worse. There’s no reason, and no pattern. It just is. 5. They are highly creative. Their ability to view the world from all perspectives makes them highly creative. They can come up with wildly creative ideas, partly because they’re not constrained by the laws of physics, mathematical logic, or the impossible. 6. They see things that others don’t. Like words moving on the page, or even off the page, and letters flipping about. You know how challenging it can be to read letters and numbers in captcha? Imagine reading a whole book like that. Or reading a book through a magnifying lens that a child is holding, and moving about. They can even see the word cat more than 40 different ways. 7. They get overwhelmed by what they see. They see so many possibilities that their thoughts can become garbled and distorted. It’s hard to sort through all that information and work out what’s important or appropriate. Without the ability to filter, this special gift becomes a tragic, confusing, disability. 8. They are more likely to have ADD. People with dyslexia are more likely to have ADD. About 40% of people with dyslexia have ADD, and 60% of people with ADD have dyslexia. 9. They can experience thoughts as reality. They can fully believe they’ve told you something, that they haven’t, or swear that you haven’t told them something that you have. Often, they express themselves in such a unique way that their message hasn’t come across coherently. And they may not realize that this aspect of their communication is part of their dyslexia. 10. They may not know they have dyslexia. According to the Mayo Clinic, dyslexia can go undiagnosed for years, and may not be recognized until adulthood. This is one reason why it’s hard to calculate the number of people with dyslexia. And, unfortunately, people with undiagnosed dyslexia often label themselves as stupid or slow. 11. They think in pictures instead of words. Not surprisingly, they tend to be highly visual, think in pictures, and utilize visual aids to help them plan and organize their lives. Rather than using self-talk, their thought processes are more subliminal. Most people with dyslexia are not even aware that they do this. 12. They will always have dyslexia. They can learn to read and spell, but they will always have dyslexia. To make life easier, a font and a dictionary specifically for people with dyslexia are on the way. The font is designed to avoid confusion, and add clarity, while the dictionary will favour meaning over alphabetical order. 13. They use their brain differently. People with dyslexia don’t use their brain the same way that most of us do. Their brain underutilizes the left hemisphere —the area required for reading—and the bridge of tissue between the two sides of the brain (the corpus callosum) doesn’t function in the same way. So, their brain doesn’t always direct information to the correct place for processing. 14. They get it from their family. Dyslexia is inherited, and most people with dyslexia have an aunt or uncle, or a parent or grandparent with dyslexia. Scientists have discovered that the DCD2 appears to be a dyslexia gene. 15. They often have low self-esteem. People with dyslexia are just as intelligent as the rest of us. And they’re fully aware that other people can read and write much more easily than they can. So they feel stupid compared to other people. As Albert Einstein said: “Everybody is a genius. But if you judge a fish by its ability to climb a tree, it will live it’s whole life thinking it’s stupid.” 16. They have different symptoms. Dyslexia is a tricky thing, because no two people have the exact same symptoms. Some lose things or have poor organization skills. Some are slow at reading or have poor comprehension. Some may have difficulty organizing ideas to write, or have difficulty processing auditory information. Some also have difficulty sequencing the days of the week, or months of the year. 17. They are full of contradictions. They may be highly aware of their environment, but appear lost. They may recognize, or read, a word on one page but be unable to recognize it on the next. Their brains are often very fast, but they appear slow, because they’re filtering through all the possibilities that they see. 18. They have great strengths. People with dyslexia are often very good at reading people and have great people skills. They usually have fantastic memories and rely on them. They’re often good at spoken language, and frequently spatially talented (think architects, engineers, artist and craftspeople). They are highly intelligent, and intuitive, with vivid imaginations. 19. They can be incredibly successful. People with dyslexia can be incredibly successful, often because of their dyslexia. Famous people with dyslexia include entertainers like Whoopi Goldberg, Jay Leno, Henry Winkler, Danny Glover and Cher. As well as artists like Leonardo da Vinci, Tommy Hilfiger, Andy Warhol and Pablo Picasso. Carole Grieder and Baruj Benacerraf utilized their dyslexia to become Nobel prize-winning scientists. People with dyslexia also go on to be writers and journalists like Scott Adams (of Dilbert), Agatha Christie, F Scott Fitzgerald, and Fannie Flagg (the author of Fried Green Tomatoes at the Whistle Stop Café). 20. They can change the world. People with dyslexia can, and have changed the world. People like George Washington, Richard Branson, Henry Ford and Stephen Spielberg have changed, and continue to change, the world we live in. People with dyslexia are kind, creative, highly intelligent beings who are just as frustrated at their inabilities as you are. They just can’t take a break from the way their minds work. Instead they rely on the people that love them to help them interpret the world, and to help them function in a world that’s not adjusted to their needs. Yes, they can be frustrating to love at times, but they have incredible, unique, world-changing gifts. With your help, maybe the person you love can change the world too.
