CHAPTER 10
Successful Combined Home and School Approaches to Selective Mutism
To paraphrase Mark Twin, a habit cannot be tossed out of the window; it must be coaxed down the stairs one step at a time.
Whether one speaks of descending a staircase or climbing a ladder, the key issue in the behavioural approach is gradualness. This chapter gives some inspiring examples of parents and children gaining control of anxiety-related Selective Mutism (SM) by means of ‘step at a time’ practice.
All children’s names have been changed in these examples to provide anonymity.
The story of Peter1
TOLD BY ALICE ON THE BASIS OF HIS FATHER’S ACCOUNT
Several of the SM children whose parents have approached SMIRA have had other diagnosed conditions. Peter was such a child.
At birth, he was found to have a cleft lip and palate, a condition that occurs once in 600 to 700 births (Royal College of Speech and Language Therapists 2006; McWilliams, Morris and Shelton 1990; Watson 2001).
This necessitated a repair operation soon after birth, followed by several other admissions to hospital. Cleft palate can interfere with articulation and there is a greatly increased risk of ‘glue ear’ due to malformation of the Eustacian tubes. At 18 months Peter had grommets inserted into his eardrums, and his response to hearing better was dramatic. He quickly learnt to speak, with a good vocabulary in English and Spanish, his mother’s native language.
However, on starting nursery aged three, he did not speak to his teacher or peers, even though he appeared to enjoy being with the other children. He continued not speaking on transfer to primary school. At home he spoke fluently to the family, as well as to visitors. The parents reported no other problems.
As no one at school was able to offer help for Peter, his parents became increasingly concerned for him. By chance, they happened to come across the term ‘Selective Mutism’ in a Local Authority booklet on special needs, and learnt about our charity SMIRA which was said to help the parents of affected children. The parents contacted us and were given our handouts which explained that SM was, in most cases, likely to be caused by anxiety about speaking at school, and that children could be helped by teachers and parents working together using a step-by-step approach.
Peter’s father then suggested to the teacher that they should put into operation a step-by-step programme to help the boy overcome his fear of talking at school. The father said he was willing to join his son’s class for three half-hour reading sessions each week and both the teacher and the boy were happy about this plan. Initially, the father saw Peter alone and the boy only managed to whisper in his ear, but after only two weeks he was able to read out loud in a corner of the classroom as long as they were alone. After a while, Peter agreed that one of his classmates could join them, but became silent when this happened. However, after only another two weeks, he began to use a normal voice in this boy’s presence. Gradually, more children were introduced, and Peter eventually managed to read and talk in groups of four or five classmates. At this stage an ancillary teacher joined this small group, although she did nothing active at first. After two terms Peter was able to read and speak even when the teacher was leading the group and his father could leave without affecting his confidence and willingness to take part.
Peter’s progress in the small group continued steadily, but at a frustratingly slow pace. He still couldn’t talk to his peers in the playground or when the whole class was present and he had never spoken to his form teacher. On the plus side, his attitude to school was very positive and he had become an enthusiastic drummer. The breakthrough came when a new and more understanding teacher asked him to perform in class on the drums. This went well, and his enjoyment of the experience seemed to help him to overcome his residual anxiety. The transfer to secondary school caused no further difficulties with communication and he settled happily there. From Sixth Form College, he achieved the advanced qualifications that he needed, and was accepted for the university course of his choosing.
This programme was carried out by a devoted family, with the school’s help, over a period of several years. Peter’s father also became a member of the SMIRA committee, using his experience to help other parents worried about their children’s SM.
The story of Ann2
INTRODUCED BY ALICE AND TOLD BY HER MOTHER WHO HELPED BY NOT GIVING IN TO ANXIETY
The next example involves a quite different type of person who behaved from an early age like a typical SM child. With regard to causation, she was probably genetically predisposed to being excessively anxious. She may have been ‘behaviourally inhibited to the unfamiliar’, a condition present in 10–15 per cent of newborns (Kagan and Snidman 2004). These children have a lower physiological threshold of reactivity with regard to fearfulness, especially in new situations, which explains their behaviour. It is thought that a percentage of SM children belong to this group.
Having already brought up a child, Ann’s mother was able to resist the trap of overprotecting her daughter. Instead, she lovingly and gently encouraged gradual exposure to mildly anxiety-provoking situations. The expectation she conveyed to Ann was that she would gain the confidence to succeed in time, which she did.
Like Peter, Ann was brought up in a loving, child-centred home. With this help and that of her school she overcame, step-by-step, her fear of unfamiliar people and situations.
Here is Ann’s story, as told by her mother.
We have now been free of SM for over a year. People used to tell me that once the child started speaking, it was amazing how quickly things progressed. I never believed them, until I saw it for myself. I once heard Maggie Johnson speaking and she said for most children with SM, one day it becomes such a dim and distant memory that the ex-sufferer can hardly believe it ever happened in the first place. I was even less inclined to believe that, but I think if I were to tell my daughter what it was like for her three years, two years or even 18 months ago, she would think I was making it up.
I would like to stress that in my experience, with lots of hard work, time and dedication from the child and their family, you can get over it, completely.
We have a happy, stable family with a Mum and a Dad and three children; three chickens, a cat and a rabbit. My middle child, my only daughter, is the child who suffered from SM. She is nearly eight years old as I write this. I feel that my daughter Ann was born with SM, but it wasn’t until she was around three years old that I realized it was more than just ‘her personality’. (I didn’t have a diagnosis – a staff member at play-school said she thought it was SM and I Googled it. It was like reading a description of my daughter!) We worked intensely, aiding recovery from when she was around three years old, and the recovery process began with significant steps in the spring of 2012 when she was six years old. Until that point nothing that I tried ever worked at all, but I kept on trying, hoping that one day it would. And sure enough, there came a point when she was ready.
My daughter was always aware that she had SM, that other children had it and that it would get better. I always stressed that the older you got, the better you got at everything, talking included. I told her that there was no rush and that everyone would be patient, but that one day she would need to tackle her fear. I encouraged and pushed and gave her opportunity wherever I could. I never ever used SM as an excuse for anything. We would find a way around everything so that Ann didn’t ever miss out on something because of the SM.
Until 2012, Ann had only ever spoken to 11 adults and six children in her whole life. Up until then she was unable to speak to aunties, uncles or any other family members, family friends, neighbours, shop assistants, other mums, any staff at school – the list is endless. She was always able to speak to my husband and me and to her two brothers, and eventually she was able to speak to three close friends she made at play-school after many, many play dates, but only out of earshot and sight of school staff!
Whilst Ann was suffering from SM she was able, once comfortable with a person, to communicate non-verbally with nods and shakes of the head and pointing but could not attempt any more complex forms of non-verbal communication. For instance, she was not able to perform the actions to songs, or wave hello/goodbye to people. At home Ann always was, and still is, extremely chatty, happy, funny, energetic and rather bossy! She is loud and talks excessively. All through the lifetime of her condition, when we went out as a family to places where she felt she was anonymous, she would be very loud and very much herself, often the loudest child in the café/supermarket/on the beach. I think she perhaps felt safe in the knowledge that she would never see these people again.
I can remember attending SMIRA events when Ann was three years old, then four, then five and being in the same position every year with very little, if any, progress made each year.
I can remember when Ann was five years old and we’d been attempting to tackle it for over two years. At one of the annual SMIRA meetings I was saying that we were no further forward, but I recall that a man who was attending who had an older child recovering from SM said that you may not see the progress now, but perhaps when she is older, that’s when it will all pay off. He could not have been more right! So even if you see no results of your efforts, from experience I believe that all the effort is likely to be small building blocks leading very slowly to recovery.
We did not get any professional help – I would advise that you do not let this worry you too much! Become your own professional. Read up, buy literature and take the lead. Do not wait around for appointments with anyone! Get started, as recovery takes so long there is no time to waste. Over the last four years I obviously did a lot of research; I contacted SMIRA, I went to SMIRA events and also, as I live in Leicestershire, I joined the SMIRA committee. I approached my daughter’s school before she had even started there, and I set in motion the things I thought would help Ann. In the 16 weeks prior to her starting school, we visited the classroom once a week for 20 minutes after school where I, my daughter and her brothers (and eventually just I and my daughter and finally just my daughter and the TA) played alongside the teaching assistant in the classroom. I was always very aware when dealing with the school that Ann was one of over 400 children in the school; I did not expect any special treatment or even too much extra time. I appreciated how busy everyone was. I put in all the work.
I drafted the IEPs (Individual Education Plans), I made the suggestions, I drafted and went in to lead the ‘sliding-in’ programme. When I made suggestions that they couldn’t accommodate, I simply put forward a suggestion that involved less of their time.
The key points from my experience would be firstly and perhaps most importantly that progress is very slow, and steps of progress taken are so small you can barely see them. I was only ever able to measure that there had been any progress of any kind by looking on an annual basis, when I could say, for example, that this year she can wave hello and last year she was unable to. I would say to always bear this in mind. Just because you have been trying a strategy and it hasn’t worked yet doesn’t mean to say that it is not going to work or be of some benefit in the future. Even tiny, insignificant steps are still steps.
Second (and I think it is equally as key), keep at the forefront of your mind that SM should be temporary. Try not to define your child by it or use it as a reason for your child not to do something – there are ways around everything! I treated all three of my children the same: they all learned to ride their bikes, they all had swimming lessons, they all bought their own chocolate bar in the shop – the only difference was that Ann did it silently! I have never made allowances or exceptions because of Ann’s SM. This helped to build my daughter’s confidence and this way she always knew I had confidence in her. She always felt she could do anything she wanted to do. Why on earth not?
I believe that another important part of recovery is to get the child to take responsibility themselves. Nobody wants to do something that cripples them with fear; it’s much easier to just avoid it altogether. But I think it needs to be made clear that you cannot live your life this way. I have heard SM parents supporting their child’s difference, saying everyone is different and that is fine. But a life not speaking to anyone – that was not going to be fine for my daughter. I was not prepared to celebrate this difference!
From the beginning, Ann was aware that she had SM. I also made it clear that it was a temporary thing, that others had it, that everyone was scared of something and that eventually that something became less scary. When she was around six years old and I felt she was mature enough, I made it clear that no one would put pressure on her and that she could do it in her own time but she would HAVE to overcome her fears, there was no choice in this matter. I began to introduce more steps and strategies which took her on her journey very, very slowly. I never stopped gently pushing and challenging her and getting the teachers to do the same.
From the age of five years until she was seven years she took a herbal remedy that claimed to relieve anxiety and shyness in children. We called them her ‘brave’ tablets and said they would eventually make her feel more brave about talking. Within four weeks of taking them she made her first ‘sound’ (a nonsense sound during a phonics lesson) at school so I definitely feel that they had an impact, whether actual or placebo. Prior to taking them she could not even make a sound at school, not a cough or an animal noise.
Another key thing for us was that I spent a long period of time trying to bribe or offer rewards for things – and it simply did not work, she could not be bribed. But then we reached a point in the journey where she began to seem open to the offer of an incentive for very small steps that I was trying to encourage her to do – for example, hand a note to a teacher, take in a Dictaphone message.
She collected ‘Hello Kitty’ stickers in an album and they were bought as a reward each time she did a very small step. A significant and more long-term incentive was that she wanted her ears pierced and I told her that I would have liked her to be around nine years old. But then I added that if she worked really hard at overcoming her fears, at the end of the school year when she had made enough progress that she could do everything in school that she needed to speaking-wise, she could have them done, however old she was. I said that there was no rush. She had them pierced one year later at the age of six and a half!
For us, small, painfully slow steps were the key. We didn’t rush any of the steps and we didn’t move on until she was totally comfortable with the step we were tackling. But I did make sure that I was constantly gently pushing and challenging her. The process, for me, was exhausting and constant. I never ever stopped thinking or planning – even through the night!
Ann did not speak or make a sound for all her play-school years and the entire first year of her primary school life. Now, aged almost eight years, she will respond with speech to anyone. And that’s anyone in the school or anyone outside of the school. Whilst her answers may not be long, whilst she still may appear like a quiet, shy girl when she asks a question (she is not!), she can do it. She even takes on speaking parts in school plays! Who would have thought it was ever possible?
In my experience, small steps that seem to lead to nowhere are the way forward. Here are some of the examples of small steps that we practised in school to get Ann able to speak to staff in the school:
1.In 2012 (Ann’s second year at school), pass notes to the two teaching staff in her class. She was not required to speak, merely to hand over the note to a staff member she was familiar with. Even this was a challenge at first.
2.Once she was comfortable with the physical passing of notes, we told her she must read the note out to the receiving teacher and the teacher ensured that she was looking away from Ann (back turned) as she read. Reading a script usually holds less pressure as it is the uncertainty of what to say which causes us all most concern. She did this for a number of weeks. It wasn’t easy, and took quite a few attempts, with a few barely audible messages passed!
3.We then moved on to reading the note out to the teacher with the teacher facing Ann directly. This was a big challenge and was practised for a number of weeks.
4.Then we asked Ann to memorize the note and re-tell it to the teacher, keeping the note in her hand.
5.We then asked Ann to put the note down on a desk before re-telling the contents of it to the teacher. This step once again lasted a number of weeks.
6.Then the teaching staff got her to pass the message without a written note. The first time this was requested of her, I’m told, she looked a little bewildered, but the teacher stood firm and asked her to quickly do it. She did.
They did this for weeks until Ann was totally comfortable with passing on verbal messages between her own teacher and her own teaching assistant. From this point there seemed to be an easy transition from being able to repeat something the teacher had asked her to say to her being able to just say something that she wanted to say when the teacher asked her a question.
7.Then they moved the scenario out of Ann’s classroom and the steps were carried out around the school to the Head, to other teachers and to the office staff. Notes were passed; then read; then messages repeated. We found that as she had already completed the process in her own classroom, she was able to repeat the steps very quickly outside of the classroom. Generalizing to the rest of the school took just a couple of weeks.
For Ann, this process was in small enough steps that she was then eventually able to function very well around the school. I did a similar process at home, encouraging her to do more interaction in shops, cafés and with family members.
Once this process started (around March 2012), it was incredible how quickly her new-found skills transferred into other situations and the boundaries of what she was able to do blurred; she was soon answering questions at school and offering information to her teachers. We had no part in this; she simply did it herself.
In June 2012 she asked if I thought she had conquered her fears enough to have her ears pierced. She was still unable to answer the register at this point. I told her that she would need to answer the register too before she could have them done. I can still remember the look of horror on her face, but I knew it was important that I pushed her. One week later she pushed herself enough to do it; she was very determined!
As I have already said, I know that now she has trouble remembering how it used to be. We don’t talk about it at all anymore – I made a decision not to refer to it after the ear piercing, so that she was able to move on and re-create herself. She had no trouble transferring years at school last year or this (into the juniors – I haven’t even been in to see her new teacher!), and last month Ofsted (school inspectors) visited her school and they randomly chose her to read and then answer questions about the story she had read to them. I’m told she did it like a professional!
Animals helping children to talk at school and with unfamiliar people
Touching and relating to undemanding animals has long been thought to soothe disturbed emotions. Interestingly, the University of Leicester was recently seen to provide a small ‘petting zoo’ during the examination period, having been told that students could derive benefit from just this type of interaction. Over the years, we have heard of several SM children appearing to be given confidence by relating to pets who could not possibly put them under any pressure. A selection of such stories is included here.
Becky (not her real name) was seven years old and lived with loving parents who were members of SMIRA. She had been diagnosed as having SM at the age of three as she did not speak at nursery and had hardly improved when starting primary school. The parents then read that children with SM responded well to pets. Though not having had a pet before, they decided to add a dog to their small family and Becky was delighted. Once they had acquired Bobby, the news spread in the neighbourhood and children came to the door to make Bobby’s acquaintance. This led to Becky acquiring new friends and she began to speak to them. The next high point was Becky being asked by the teacher to give a talk about Bobby to the class. She was able to speak clearly and with confidence. This was a real breakthrough for her and from then on she continued to make steady progress.
The parents were greatly relieved and shared their joy with SMIRA.
Another child diagnosed with SM found the confidence to speak after his SENCO recommended that he should attend therapeutic donkey-riding as well as seeing an SLT. It was hoped that, by learning how to give instructions to the animal, the boy would lose his fear of talking. As predicted, he started to whisper ‘Stop’ and ‘Start’ and was able to get louder, shouting instructions at times. Within a year, he was speaking to children in the playground and answered his teachers when they asked questions.
This family appears to have been helped by speech and language therapy and the Elizabeth Swendsen Trust for Children and Donkeys which has riding therapy centres in Birmingham, Ivybridge, Manchester, Sidmouth and Leeds.
Another family who are members of SMIRA includes a son with SM and Asperger Syndrome who had begun to talk after being seen by an SLT who started him on a programme derived from the Johnson and Wintgens (2001) manual. He responded well to this and began to talk at school.
Unfortunately, he had been discharged by the SLT department, although like many SM children, he was apt to relapse into silence at every transition point in his school life – for example, on joining a new class or meeting a new teacher.
The situation was saved when the family acquired a kitten. Very soon, boy and cat became close friends as she was spending most of her time in his room. The boy was heard speaking to his pet and this was probably what eventually led to his becoming able to express some of his feelings and starting to talk again at school with his peers and with the teacher.
The thorough preparation which had been undertaken previously via the Breaking Down the Barriers programme will also have played a part.
The mother has written a book about the way her son has managed to overcome SM with the help of their pet. In a prologue, she describes the boy giving a most competent talk at school about ‘Jessi-Cat’. The book is The Cat that Unlocked a Boy’s Heart: Jessi-Cat by Jayne Dillon with Alison Malony (2013).
The Story of Holly3
INTRODUCED BY ALICE AND CONTINUED BY THE FAMILY
The final example tells the story of a family who had to cope for years, as many families do, without recognition of SM and even with feelings of blame and criticism. Eventually, they heard about the step-by-step approach through SMIRA, and came across an enlightened teacher with 20 years’ experience who worked with the child with great success. The account shows what a difference an excellent school can make to an SM child and her worried family.
Like many SM children who fully recover, Holly is anxious to tell her story, hoping that it will benefit other children. Here is her story, as told by her parents, and continued by Holly herself.
When Holly was at nursery, it was brought to our attention that she didn’t speak to the teachers, but we didn’t worry about it. When she spoke to her friends, but not to teachers, at primary school, we got no support from the school; in fact, they made us feel it was our fault. This went on for two years and ended with a blazing row with the Head. Because of this, we moved Holly to a small village school where she was much happier, but she still didn’t speak. By Year 4 we moved her again to fit in with her sister’s transfer to secondary school and the new staff were much more supportive. Holly joined one of the school clubs and the teacher who ran it told us about SMIRA.
I phoned Lindsay Whittington at SMIRA, who was great. We got the DVD Silent Children and all the information. When Holly started Year 6, her teacher was brilliant. She took the DVD home, cried, and was ready to work with us. She gave up time after school and we did the ‘sliding-in’ method. By the end of the first week, Holly was in the classroom on her own reading to this teacher. Their co-operation went on for months; they read, played games and went round the school meeting the rest of the staff, who built up our daughter’s confidence by chatting with her.
When the time came to change classes, both teacher and pupil were crying and hugging each other because they knew that a real difference had been made.
Holly is now 12 and nearly ready to leave Year 7. The teacher in her new class was also lovely and worked with us from the start. She arranged to meet us the day before term started in an empty school. Holly has done really well. She has sung with the choir in a variety of venues, enjoys drama and has given a ten-minute presentation at school about one of her interests, baking.
We want children and families where SM is a problem to know that, with the right approach, there is light at the end of the tunnel.
Holly herself has kindly written this letter:
Dear SMIRA,
I am very proud of myself since I started Year 6 because last year was the very first time I had spoken to a teacher, or even near one. I spoke only quietly, but it was still such a big step for me that I cried with happiness.
Then I stayed after school a few nights each week to play games with my teacher. One night, I decided I was confident enough to talk to the Head Teacher. I walked to her office with Mrs Walker, and when I spoke to her she was so happy. I realized then what a long way I had come and decided I could speak to other teachers too, so I did.
Then I decided that I wasn’t going to let anything stop me joining the children’s choir because I love singing. The teacher who runs the choir seemed scary at first and I didn’t want to sing to her on my own, but after about a month I thought ‘I can do this’, so I sang in front of her. It was quite quiet, but I still did it and that’s what counted for me and since I started this letter I have moved up to the girls’ choir.
When the big day came to leave primary school, I was sad to leave my kind teacher and all the other staff I had got to know. I was worried that I was going to get scared in the bigger school and not be confident enough to ask someone where to go. Luckily, I found my way around after about two weeks. The important thing about starting secondary school is that I have started afresh and talked to the teachers the first time I met them and never looked back.
I’m having a lot more fun at school now and I’ve made tons of new friends. It’s like opening up a whole new world. I’m a lot happier since I started talking to the teachers at school.
MY ACHIEVEMENTS
•Now I can go up to the corner shop by myself and buy a newspaper.
•The other day I went up and ASKED for a mobile phone top-up.
•I have joined the choir, talked at school, sung by myself, talked to shop owners.
•I’ve been to the supermarket by myself.
•In drama (my favourite subject) I’ve taken the role of the narrator.
•With the choir, I’ve performed in the opera house.
•At school, I’ve spoken in front of the whole class.
•I’m going to be one of the people showing the new children around the school.
So, I really want to help other children like me and tell them that there’s nothing to be scared of. I’m sure teachers will be happy when you talk to them and there are people who will help you and be happy to do so.
I want you to understand that there’s a pot of gold at the end of the rainbow. I know it’s hard, but you can do it.
Well, that’s my story and I hope it helps other children and families.
Thank you for all the help and support you’ve given me.
From Holly
Notes
1Not his real name.
2Not her real name.
3Not her real name.