by Lindsay Whittington, Co-ordinator and founding member of SMIRA
35 years. It’s a long time, but that’s how long my involvement with selective mutism has been, both as a parent and through my work with SMIRA.
My daughter was just 18 months old when, on reflection, the problem started to show. She had been a happy baby, able to sit on the knee of anyone who wanted to hold her, but she had become very shy and ‘clingy.’ We thought it was just a phase she was going through, as most toddlers do at some point, but rather than go away it started to get worse. The word ‘anxiety’ didn’t particularly come to mind – although she would scream at any cat or dog that appeared in the street, at age 2 she had confidently climbed a ladder left at the side of the house and had to be rescued from the top of a flat roof!
By age 3, on starting at Playgroup, it was obvious that she was more than just shy and our own worries increased. Although she already knew some of the children there and had visited on numerous occasions with her older brother, she always cried when left and was unable to join in with the other children, remaining silent for the whole morning. Questions began to be asked; the Health Visitor sent her for a hearing test, which she passed with flying colours, and I began to feel the finger being pointed at me, her mum. No-one knew of selective mutism in those days, it was unheard of and there was total ignorance. One of my worst days was when I collected her from Playgroup and was handed a sponsor form – would I please ask people to sponsor my child in a ‘sponsored silence?’ Really? Why would I want to reward my child for staying silent, when all I wanted was for her to speak in public? Even today, I can’t put into words my feelings that day.
With the situation worsening, I prepared my daughter for starting at the local village school. Her brother was already a pupil there, just two years ahead, and I was able to go in and help as a volunteer, taking my daughter with me for one afternoon a week. She knew the teacher, knew the premises and knew a lot of her classmates. Still she remained silent, her body language often stiff or ‘frozen.’ I was called in for meetings, there were questions, ideas put forward – the Headteacher even tried bullying tactics which of course didn’t work and made things worse, – but everyone was running out of ideas. Frustration was mounting and, yes, I cried. We were sent to see a Psychiatrist, who told us she had ‘Elective Mutism’ (the name was later changed to ‘Selective Mutism’) and it was to be hoped that she would grow out of it. I asked what would happen if she didn’t – he just shrugged his shoulders as if to say ‘I don’t know.’ We were on our own with the problem.
Mums at the school gates were generally unsympathetic. I was asked:
‘Is it your little girl that doesn’t speak?’
‘CAN she speak?’
….and then there were looks of disbelief when I said yes, she could speak perfectly well at home and had a vocabulary well above the level for her age.
It was all very isolating. I felt I was an outcast; I had a ‘freak’ child.
I’m a great believer in fate. I know some people say that you make your own destiny, but I believe it was fate that brought about a chance meeting that eventually lead to SMIRA being formed. My daughter’s Headmaster was on sabbatical leave, I believe on a course at Leicester University, when he mentioned her case. Someone there told him they knew a lady who might be able to help and I was subsequently asked if I could be put in touch. Naturally I said yes – we were clutching at straws and anything was worth a try! A phone call or so later and I had a visit from the lady concerned – Alice Sluckin.
Alice, it transpired, was a retired Psychiatric Social Worker and during her career had come across several children with behaviour similar to my daughter’s. She had done some work with these children, based on psychology strategies, and gone on to carry out some research. She wanted to help.
Alice befriended us as a family and gave some advice to the school, suggesting various things to try. I went into school regularly to try and get my daughter to read to me in a quiet room, but without success. Her teacher was becoming terribly frustrated (it isn’t just parents it happens to!) and Alice suggested that we tape my daughter’s reading at home and the teacher could play it back to assess her reading level and offer any advice. This went well and we had weekly meetings after school, but we weren’t making any progress with speech. My daughter wouldn’t open her mouth for the Dentist or Doctor, or eat or speak outside the home. If a stranger visited she would run and hide in the cloaks cupboard. If we were in the village shop and I asked her what sweets she might like, I had to interpret the slightest movement of her little finger as a ‘yes’ or ‘no.’ She was the child who could laugh in school without making a sound.
There were some brighter moment, that offered us some respite, some hope. I had helped to organise a craft fair at the school, taking a stall myself. Both of my children came to me during the day, asking for some money to buy snacks from the stall in another room. They came back clutching their snacks and went off to eat them outside. I assumed my son had ordered for both of them – but no! Apparently my daughter had gone into the room and the ladies in charge, knowing her, had wondered how to handle the situation. They needn’t have worried – she went straight in and asked for ‘a bottle of pop and a packet of crisps please’! On Monday morning we were back to silence.
Time was dragging on and I was going through a lot of difficulties in my personal life. I have never been an over-protective parent – I believe that our children need to understand that they have to stand on their own two feet to make their way in this world. In hindsight, I had pushed my daughter’s problems from the top of the list and in so doing had taken the pressure off. There were signs that things were improving – she started to speak a bit to neighbouring children or to visitors. We were moving house, away from the village and into a more suburban environment – the day we moved, she spoke to the assistant in the (new) corner shop!
I continued to drive my daughter to the village school each day – afraid to move her from a small school where she was comfortable to the local school of over 300 children. The day came when this was unsustainable – I had a new baby and the journey back and forth each day was just too much. Alice and I had a chat and she offered to approach the local school to see how supportive they would be. Fortunately, they were happy to help and we underwent a managed transition – for anyone interested, this is set out in SMIRA’s download ‘Guidelines for Changing School.’ It was agreed that I would go into the class once a week to help out, taking the baby with me (which the children loved!) and I am happy to say that my daughter spoke from the very first day! She was still very quiet and had a lot of catching up to do, but we had made the breakthrough!
Alice and I remained in touch; she kept an eye on ‘progress’ whilst carrying on with her research and helping a number of other families. One day she rang to invite me to a meeting she had organised with a few people – another Leicestershire family, a lady who had had SM and a few professionals. I recall a meeting in offices close to Leicester University, where we were given a room in the attic and told there were coffee making facilities, but they were in the basement – 4 floors down! There was a good turnout though and I came away thinking that for the first time the professionals had actually been interested in what I had to say and what my experiences as a parent had been.
That meeting was the very beginning of SMIRA. Alice decided she wanted to form a support group for parents, gave it a name and registered it as a charity, getting a grant of £50 from Leicestershire County Council along the way! We got off to a slow start, holding evening meetings just every few months in a local school, and it was a few years before I took over the role of Secretary.
I gradually became aware of more cases. One popped up in a magazine; I wrote to them and they put me in touch with other correspondents, mainly parents. I recall asking Alice how many SM children there might be in the country – she thought there could be ‘about a hundred or so.’ We now know the incidence is 1 in every 141! Interest grew, I started a newsletter with an initial circulation of about 30, but it grew issue by issue.
Our first Parents’ Meeting took place, with about 10 families, but the pattern was set and from then on numbers increased year on year. This was the forerunner of our Conference, which is now open to parents, professionals and people who themselves have SM.
SMIRA went on to produce leaflets for both parents and professionals and was fortunate enough to obtain a grant in 2004 from the then Dept. for Education and Skills to make a video and an accompanying book, which are still available today.
Like so many organisations, SMIRA has benefitted from the growth of the internet. It has become so much easier to make contact with our members, not only in the UK but all over the world. From small beginnings with a Yahoo! Chat group, the move was made to a website with a forum, although this was later discontinued and the move was made across to a Facebook group, which at the time of writing has thousands of members from all over the world and a large collection of information files.
Thankfully, Selective Mutism is much more widely known about these days. Over the years we have seen the introduction of Maggie Johnson & Alison Wintgens’ Selective Mutism Resource Manual and numerous other publications on SM, including the book ‘Tackling Selective Mutism’ edited by Alice Sluckin and Benita Rae Smith, SMIRA’s Vice-President. SMIRA has been a member of The Communication Consortium, part of The Communication Trust, since its inception; an organisation that covers all Speech, Language & Communication problems and in turn feeds into Government .
Looking back, it has been hard work at times but rewarding. It can be an emotional experience, talking to parents on the phone who are new to SM or who haven’t known where to turn. There are often tears, either through their sheer frustration or, more often, because they have finally found someone who understands SM and has some idea of treatment. Only the other day I found myself wiping away a tear on reading a particularly effusive letter of thanks from a parent – I’m not immune, even after all this time!
I am now SMIRA’s only paid employee, as Co-ordinator, working just a few hours a week (the rest is voluntary!) and in the 2010 New Years Honours List Alice was awarded the O.B.E for her Services to Children & Families. My daughter now has 5 children of her own and until recently worked in retail – she has become a very chatty young lady!
So, where do we go from here? We have worked hard to raise awareness, and SM is much better known now than it was all those 34 years ago, but there is still a long way to go.
In recent years we have seen the introduction of the first care pathways for the treatment of SM and they are gradually spreading throughout the country. They do, however, vary from Local Authority to Local Authority, some being based with just Speech & Language Therapy Departments whilst others are multi-agency. It is probably wishful thinking at this point in time to hope for a national care pathway!
The Royal College of Speech & Language Therapy has recently set up a Clinical Excellence Network for Selective Mutism, to share experience not only amongst Speech & Language Therapists but also other professionals, which can only be to the good. The launch in York on 1st October 2015 was timed to coincide with the start of Selective Mutism Awareness Month.
Further afield, intensive therapy camps for SM have sprung up across the USA and we are seeing similar – but not identical – initiatives in other countries too. We are watching with interest, as I’m sure it won’t be long before we have something in the UK. Needless to say, it won’t be available on the NHS!
In 2015, quite out of the blue, we received an offer of both finance and expertise from the Straight Charitable Trust, who had seen us as a small charity that was perhaps over-performing on a shoe-string budget, and wanted to help. Although we have always said that ‘every day is awareness day at SMIRA’ they took our comment of ‘wanting to do something extra for Awareness Month this year’ and ran with it, bringing on board Redleaf PR, who masterminded our Awareness Campaign and helped to raise the profile of both SMIRA and Selective Mutism. It would be remiss of me not to mention the gratitude we feel towards both organisations. There is a lot of work we could not have done without their backing.
For the last few years we have been looking for a fairly high-profile celebrity with some connection with selective mutism, who might agree to become an Ambassador or Patron of SMIRA. Although Radio 4 Presenter Helen Keen and Miss England 2013, Kirsty Heslewood, have both admitted to having SM as children and even Paul McCartney has written a song about it, we are still no nearer finding that one special person we are looking for. Maybe one day……
As far as SMIRA is concerned, I am sure there will be changes – and challenges – ahead. A number of those who were with us from the very beginning have either retired or sadly passed away, whilst others are starting to feel their age! On a personal level, I have said that I am prepared to carry on for a while yet, health permitting, but I will not stay around past my sell-by date! It has been gratifying of late to see a number of younger members come along who are prepared to commit themselves to working for SMIRA, albeit on a voluntary basis, which augers well for the future. The Facebook group has been growing steadily for some time, under the watchful eye of our supportive Admin team, and will probably continue to do so as it has become recognised as one of the leading groups for SM information.
I have every confidence that SMIRA will continue to grow and operate well into the future!
© Lindsay Whittington 2018