Our Story so far......
O has had Selective Mutism since he was quite young. We first noticed almost 4 years ago. At that time, he was in creche 3 days a week with his older brother. It was around this time several things coincided. O’s brother left the creche to go to big school, I had to change my working hours and the two mornings he was with me, he started going to a childminder instead. In addition, we were moving home, and I was pregnant with my fourth child and feeling quite ill at times. There were a lot of changes for O who is sensitive and probably had a predisposition to anxiety. None of these may be anything to do with why he developed Selective Mutism and there is no single obvious glaring reason but a combination of all the above, being a sensitive child and having a predisposition to anxiety is all that we can conclude. There is also some information I have read in recent times linking Selective Mutism to retained reflexes which is quite interesting. Of course, I have come to realise over the years that the reason is no longer important, what is important is finding a way forward for O and helping him overcome his Selective Mutism.
We were first alerted that something was not as it should be when the childminder mentioned to me that he did not talk to her. Initially we thought O may just be a bit shy and would warm up as he got to know her better, given his siblings and parents were all quite shy as young children. However, it became apparent that O was not talking to the teachers in his creche either or some of the other children there. There was one child he would talk to but only if he was out of earshot of everybody else. If he was within earshot, he would whisper to him.
My husband and I also noticed when we took the children to the playground that he tended to hang back unless he was alone with his siblings and then he would play as normal. We had never heard of Selective Mutism but after a google search it was very clear to us this is what O had. He stopped talking to my parents whom he did not see that frequently and for a period aside from immediate family he only spoke to his grandfather, (my father-in-law) who he saw frequently. Sadly, he no longer speaks to any of his grandparents although he adores them all and loves to see them. Selective Mutism is not very well known in my experience. This was the first we as parents had heard of it, but it is also not well known among many medical professionals in Ireland and possibly further afield, based on information posted by parents on the various support groups.
Selective Mutism is an anxiety-based disorder where a child is unable to talk in certain situations due to the level of anxiety they are experiencing. It can affect the throat muscles and produce a freeze response where the whole body tenses up and the child is sometimes physically unable to speak although they want to speak, they often describe that their words get stuck and young children soon learn to avoid talking as the brain associates the unpleasant feeling with talking.
Selective Mutism is similar to a phobia and in this case the phobia is talking to people in certain situations. This can elicit the same feelings and reaction in the body that someone who has a phobia of heights gets when presented with their fear. (Although many professionals note Selective Mutism is more than just not talking as children with SM often have other difficulties with any kind of communication, not just verbal, and other things such as eating in front of people, using the bathroom in strange places, giving and receiving eye contact and other quirks that can be individual to the child. It can often go along with social anxiety characteristics like the fear of being judged. The longer the child has the phobia the longer they learn to avoid their fear and the harder it is to expose them to their fear in order to overcome it. For Selective Mutism this process is approached in small steps using exposure methods such as Sliding In, Shaping and other defined strategies. The important thing is to have everyone in the child’s life on board with these strategies and this can be quite tricky for a parent. Removing ‘Maintaining factors’ are also important and these are outlined in The Selective Mutism Manual written by Maggie Johnson and Alison Wintgens.
There is a lot of misunderstanding about Selective Mutism, fortunately everyone that has crossed our paths have taken the time to learn about it and are sensitive to O’s condition, but it is still a challenge to fully educate everyone that meets your child. Our son recently had to attend A & E in hospital with a broken arm and as best I could I explained his condition in the limited time we had. The nurse was a lovely lady and O communicated to the nurse through whispering answers to her questions in my ear. The nurse said smiling “can you not whisper in my ear?”. An innocent comment which means no harm, but it is perceived as pressure from a child with Selective Mutism and can elicit more anxiety and often means the child is less likely to talk. It is times like these that as a parent of a child with Selective Mutism, I wish more was known about the condition throughout the wider community in Ireland.
One very common misconception is that the child is choosing not to talk, and this is not the case. Another misconception is that it is as a result of some abuse or mistreatment. There is a different type of mutism which can be triggered by a traumatic event where the child stops talking to everyone in their life. However Selective Mutism is different in that the child only finds it difficult to talk in certain situations and to certain people, usually people outside of their immediate comfort zone like immediate family or close friends and family. However, Maggie Johnson and Alison Wintgens do note in their book (The Selective Mutism Resource Manual) that it is possible that a critical event could trigger Selective Mutism such as “getting lost, being left with strangers or an overwhelming environment, waking up to find an unexpected baby-sitter or being teased about poor pronunciation by their peers. The situation is traumatic for the child as they are typically highly sensitive but “it is the child’s reaction to the event that is extreme, rather than the event itself”.
The worst way to treat a child with Selective Mutism is to put pressure on them to speak or to say things like “has the cat got your tongue?” “Are you not going to talk to me today?”
“Ah he’s just shy!” These turn of phrases I have noticed through our journey are a little ingrained in Irish culture and people who are not aware of Selective Mutism, use them frequently in a playful manner and although there is no intent of harm, they are the last thing a child with Selective Mutism needs to hear and it raises the anxiety and maintains the Selective Mutism. In fact, it is considered a maintaining factor in The Selective Mutism Resource Manual mentioned above, which is essential reading for helping a child with Selective Mutism. Drawing attention to the child not speaking is also a definite for the list of things not to do. Over acceptance of Selective Mutism and removing all need and expectation for the child to speak in the long term is also a Maintaining factor.
Despite the evidence that Selective Mutism is not caused by trauma, a mothers first instinct of course is that of guilt, ‘what did I do wrong?’, ‘I must not have settled him into the childminder well enough’, ‘when his young siblings were smiling or laughing fondly at his cuteness on that one occasion when he was young at his funny pronunciation of some word or other was it that?’ ‘Did he sense the stress of our house move? ‘. These are all the questions that come rushing through your head. At some point you set about gaining as much knowledge as you can on Selective Mutism and you realise you must let go of the guilt and that it is not your fault and focus instead on how to help, and this includes managing everybody’s anxiety around the child not speaking including your own. If as parents we start worrying what if he never speaks how will be manage, how will he make friends, what if he hurts himself in school and cannot talk, what if he needs to shout for help in an emergency and cannot. (Incidentally evidence shows that in the case of an emergency the fear of the danger will trump the fear of speaking which is comforting to read as a parent).
However, these are all the things that race through a parent of a child with Selective Mutism’s mind when they are first diagnosed. The best thing to do is deal with your own anxiety first as children pick up on all of these things, it is like they have a sixth sense and Anna Biavati-Smith (a private Speech and Language Therapist who specialises in Selective Mutism and is also a Mum of a daughter who has overcome Selective Mutism), talks about ‘mirror neurons’ in her course and how we can transfer our anxiety unwittingly on to our children. Anna is based in the UK but has launched an online course on “Selective Mutism. Steps to Brave Talking” Anna also highlights the importance of selfcare first in order to help our children. As a parent once I had dispelled the guilt and got on top of my own anxiety around O’s Selective Mutism it became easier to focus on how to help him. Certainly, there is an acceptance phase and then you can move forward to help your child progress.
Where to go for help in those early days is a big question. My first step was to contact the public health nurse who referred us to another health department, and we were on a long waiting list. Eventually we received a letter from this department to say we needed to see another area of the public health system and were again on another long waiting list. This continued for some time as we were passed from ‘Billy to Jack’ much to our frustration. We felt we were losing valuable time knowing that early intervention is so important. Therefore, we set about looking for a private SLT while we waited on O to be seen in the public system. This was no easy task. There are very few SLT’s in Ireland who have experience with Selective Mutism in my experience and after many phone calls of being told the practice could not help me or they had no capacity to help as it would include intervention in school, and they did not have the resources for this we eventually found a local practice and started sessions.
O was formally diagnosed with Selective Mutism by his private SLT. We initially started to try the ‘Sliding In Technique’ which involves the child playing with a parent or someone he is comfortable talking to while the SLT slowly step by step over sometimes days sometimes weeks slides into the conversation. The full explanation can be found in the Selective Mutism Resource Manual and in The Brave Muscle Method used by Anna Biavati-Smith in her Steps to Brave Talking Course and in many other online resources.
There are lots of other strategies to keep in mind for example many children with Selective Mutism do not like a lot of face on eye contact when asked a question or expected to speak, as this is perceived as pressure to speak. Sitting side on and being occupied with a game is helpful. “I wonder” statements are particularly useful, by putting I wonder in front of a question it takes the pressure off the child and makes the question almost rhetorical, so the child has the option to answer, and it is recommended to wait 5-10 seconds after a question like this to allow the child the opportunity to respond. Not filling in that silence when someone asks your child a question and not jumping in to rescue them is something as a parent you need to learn. It is important as a parent to discover there are specific ways to deal with this and some are outlined in Maggie Johnson’s Resource Manual and also in The Steps to Brave Talking Course by Anna Biavati-Smith amongst other resources that can also be found online (see the resource list in the menu). Unfortunately, the Pandemic has meant we have been unable to do this therapy with O in school to date but hope to pick it up soon as restrictions ease.
A lot of professionals say you need to help a child be comfortable with being uncomfortable. In other words, don’t rescue them from the anxiety they are experiencing when someone speaks to them. As a parent the instinct is to save your child from the anxiety you know they are experiencing, but our job as parents is to help them tolerate that anxiety and use exposure strategies to expose them to their fear in a slow and supported way. Continually saving your child in these situations can be a maintaining factor prolonging the condition but equally putting pressure on your child to speak is a maintaining factor, so a balance needs to be struck to encourage your child and expose them to their fear in very small steps, slowly and at a pace they are comfortable with.
In the sliding in sessions at the creche with O it felt like we did make some progress. We got to the point where O and I were playing, and the childcare worker was sitting quite close in the room reading a book initially and O was happy to continue talking to me with the knowledge that his voice could be overheard. On one session we managed to have the childcare worker join in the session and play with us, he spoke directly to me in a quiet voice while they were sitting with us. Unfortunately, just as we were making progress Summer was upon us and O’s time in the creche came to an end and his friend whom he whispered to went to a different school. We tried a playdate with him afterwards, but he never whispered to him on the playdate instead they played in silence, and he gestured to him to communicate.
It was also during this Summer that the private SLT moved from the practice to another part of Ireland and the practice had nobody that could take on O. Fortunately, we got a call from the public system around this time. A lady spoke to me and said O needed to be referred to CAHMS by a GP. I raised O’s Selective Mutism with my GP at one point, and they had not been familiar with it and recommend some play therapy and suggested he may grow out of it which unfortunately is unlikely with Selective Mutism unless there is specific intervention. For the most part my understanding is that play therapy is not the first treatment for Selective Mutism unless the play therapist is a specialist in Selective Mutism which generally in Ireland is not the case, but I know of children who were referred to play therapy for their Selective Mutism. Every child is different and perhaps play therapy may help children on some level, but it is not the go to option for Selective Mutism, but you can understand why people are referred if there is little or no information provided to medical professionals about Selective Mutism. Coupled with little experience even by some Speech and Language Therapists in the field in the area of Selective Mutism. In the UK there are experts who specialise solely in Selective Mutism but not many I am aware of in Ireland but hopefully this is changing, and more courses are available now online then there used to be. It takes time to find people experienced and knowledgeable in Selective Mutism and it would be great to raise more awareness of the condition in this country. After speaking to the lady in the public system my GP referred O to CAHMS. As O started school in Junior Infants he was under a Speech and Language SLT in CAHMS with knowledge of Selective Mutism and had access to their multidisciplinary team also through the SLT.
Although he now was assigned a professional, a lot of the responsibility in helping a child with Selective Mutism lies with the parents. There is no specialist that will come in and suddenly wave a magic wand and enable your child to talk. You need to work with your child (as you are usually the talking partner), and the reality is you as a parent need to educate yourself and then educate everyone in your child’s life. There are specialists in the UK and the States that provide intensive weeklong treatments which may kick start the process for some people, but the work will not be done at the end of the week you will still need to implement everything you need to implement anyway. These intensives are expensive, especially given there are none on offer in Ireland and there for require specialists to be flown in from the UK or America. I have yet to do some research on these and it may be a topic for a future blog!
With support from the school, I started sliding in sessions initially once a week when O was in junior infants. Progress was slow and while he started to move forward, he then regressed soon after, perhaps we were moving too fast for him but he did eventually start to move forward again. As I became more familiar with the literature on Selective Mutism it became apparent that once a week was not sufficient for the sliding in therapy and Maggie Johnson’s Sliding In Therapy recommends a minimum of three times a week. I changed my hours in work and set about putting in place a career break so I could dedicate my time to helping O and educating myself as much as possible. I have four children and was just trying to juggle too much and was burning out trying to keep all the balls in the air!
At this time O was already participating in class nonverbally and had formed some friendships which was fantastic. He had a great bond with a wonderful boy who I am forever grateful to for his sensitivity and friendship with O. Sometimes when I would collect O from school, he would be tense and have a frozen or downturned mouth and stiff look on his face. It was difficult for him not being able to talk during the school day and he would have quite big meltdowns after school. His behavior could be difficult to manage after school in the early days as he released the tension and frustration of not being able to communicate during the day. He did not want to talk about his ”not talking” it was simply a no-go area for him in the early days at any time during the day and I have now learnt how to address it with him in a more subtle way which is more likely to get him to open up and talk about how he is feeling. Certainly helping a child with Selective Mutism involves not focusing on the talking and instead helping them reduce anxiety initially and removing all pressure to talk.
When the Pandemic hit in February 2020, I had my career break signed off and was due to start the following May so I could go into the school. Instead, we found ourselves in lockdown homeschooling. Of course, O then did not have to face situations of talking outside the family any longer as Covid restrictions meant we were very insular for a long time. However I think the break from his anxiety may have helped him in some way and he had lots of time to bond with his three siblings and lots of family time, during lockdown and he was in good form and behaviorally things were a lot easier. When O returned to school again in September he was in great form. There were less meltdowns.
I had worked with O through stories to try talk to him about his Selective Mutism during lockdown and perhaps due to his age now he was more open to talking about it and he was better able to verbalise his feelings. I was able to make him aware that lots of kids have it and they overcome it. One lovely way he communicated to me was through a story he wrote about a dog who could not talk, a dog who was to scared to talk to the teacher, a dog who’s mum rang someone to help him but it didn’t work and then the dog’s Mum helped him talk, a dog who had a dream that he could talk and then felt sad and wonderfully then at the end of the story the dog talked. This was a lovely moment for me, and I loved the happy ending. It showed me he had hope and it was an emotional moment for me as I saw it as a great breakthrough in him expressing his feelings.
In the December after O went back to school, he recorded a line of his school poem on video in a room on his own for his teacher. The Christmas poem was being recorded for the parents. This was a huge step as he like many children with Selective Mutism did not like photos or videos never mind being recorded speaking. His teacher was fantastic and rang me to let me know, such a small thing means so much to a parent with a child of Selective Mutism. The second positive step he took was that he started to whisper to his close friend in school. He did this on his own initiative, and I can’t tell you the joy this brought to us as parents even though there are different views on whispering from professionals.
Whispering uses different muscles to talking and too much whispering can cause nodules on the voice box, however some professionals accept whispering as a bridge to talking while others disagree on accepting whispering. Not long after this we ended up in lockdown again and back homeschooling. I took some of the strategies I learnt to try get O comfortable speaking on video. During lockdown we started recording him saying a different letter of the alphabet every day and then progressed to words until eventually O was comfortable saying jokes on video facing the camera and reading aloud in the knowledge that it would be sent to his teacher. However, I think this may have been made easier in the realisation that he wasn’t going to see his teacher for a while. This was all to desensitize him to having his voice heard. When he returned to school to see his teachers face to face, he returned to non-verbal communication with them.
Another joyous and surprising day was when his football went into the neighbour’s garden. He did not know the neighbour well and he said, “I’ll go get the ball”. I remember hiding behind our door peeking out to see how this was going to play out. I watched as the neighbour went inside and came out with the ball. After O had gone inside, I spoke privately and discreetly to the neighbour who was not aware of O’s Selective Mutism. He told me that O had said “can I have my ball back?”. I couldn’t believe it, I was elated in a way that only a parent of a child with Selective Mutism can fully appreciate. This seems to have been an isolated incident at the time, but it showed me how far we had come in a year despite the constraints of the pandemic and gave me great hope. When this happened and I am sure other parents of children with Selective Mutism will identify, you just want to jump up and down and high five your child and praise their bravery, but you can’t because every child is different but as a general rule not making too big a fuss is the right reaction. Praise can be interpreted as pressure to repeat the incident. Therefore, inside you are jumping for joy and pulling virtual party poppers in your head but outside you have a mask of cool calm and collective and instead subtly acknowledge his achievement almost without drawing too much direct attention to the fact that he spoke. Well, that was the best approach for my son, but every child is different.
We were on a roll at this time but just as we went back to school circumstances meant that he had a new SLT and new support staff. Summer was upon us, and he would have all new staff next year. Like the inability to go into the school to do Sliding in Therapy due to the covid restrictions I have learnt to accept these are all things that are out of our control and life events happen, life goes on and all we can do is our best with the circumstances we have and keep positive.
Just before school broke for Summer I started to do playdates with his best friend whom he whispered to in school and through using the recommended strategies including forced choice questions during a guessing game he started to talk to his friend. It helped that I had taken O and his friend to a playground, so his anxiety was lowered from physical exercise and he and his friend were on a spinning roundabout which I believe may have had a calming influence on him also. This was the beginning. We kept this up and as we drove home, and the words started to spill like an avalanche from O’s mouth. My heart filled with emotion to hear him, it was like everything he had every wanted to tell his friend came pouring out. He wasn’t really listening to his friend but just kept telling him lots of random things. I still well up when I remember that moment. But that was not the end of the work, and I knew it. I continued playdates as frequently as I could trying to keep them up at least once a week. When in the school setting O still whispered in his friend’s ear but when at home or in a playground with me, he eventually just spoke in his normal voice with little warm up required.
We kept up the playdates through Summer and with staycations and holidays there was a break in the playdates. O was due to go back to school with a new teacher, new support teacher and all new staff in the class and a new SLT . It felt like we were starting all over again and I have to admit my anxiety around the whole situation was elevated, the unknowns as school started although I had learnt the impact this has on O and tried to mask it as best I could.
So this is where we are on our journey, O is nearly 7 and now has Selective Mutism for quite a number of years so it is quite entrenched. When I started writing this O only spoke to immediate family and one close friend and only when that friend was in our home or in a playground where nobody he knew (like other school children) were there. In the last few days, he started to speak to a second friend from school at our home. He also started talking to his younger cousin who is 2 years of age during the summer if his other cousins were not around to listen which was another step in the right direction. He is much more comfortable chatting to me when we are out and about with passersby within ear shot. I have found online support groups for Selective Mutism quite useful. You pick up information and feel like you are not alone. One piece of advice that really stuck with me was from a parent on an online group was simply to look back this time a year ago. This really helped as the journey with Selective Mutism is a slow one and patience, positivity and hope are very important in my view (but this realisation only comes with time). I look back a year ago and think of all his achievements no matter how small and this keeps me positive and focused, and any wins show he can and will move in the right direction and to remind myself to stay patient and keep positive and believe in him and myself.
O unlike many children with Selective Mutism does not appear to mind being the center of attention, he is quite social and enjoys interacting with people non-verbally. Last year in school his teacher held a teddy bears picnic where the children could bring in a teddy bear. O decided he was going to bring in a giant gorilla teddy larger than him belonging to his sister. When we suggested given, it was twice his size that it just might be a little big for him to carry, he came up with another idea. With his mischievous wit he decided he was going to be the teddy bear. I gently reminded him that perhaps his teacher meant bring a teddy bear, not actually be the teddy bear! He of course knew this but begged me to let him wear a Panda head (we had lying around the house) into school. I let him and I have to say I laughed at the sight of this tiny body and a large Panda head happily running into school.
We have started off the school year with a great start, lovely helpful understanding staff going above and beyond to help O. O shows me the songs he’s learnt in school with the actions that go along with them, it makes me smile knowing he can do the actions even if he can’t sing along. He started to whisper to some more children on his table in school recently showing how far he has come. He is very comfortable when we are out and about chatting away to me as people even that he knows are in close proximity and I am positive and hopeful for the future.
Family and friends don’t know O as well as they might his three siblings who have no problem telling their news at every opportunity. O is sensitive and kind, a great listener, has a great sense of humor and is a great brother to his siblings. Although he doesn’t speak to people outside of the family, he has a glint in his eye and a mischievous grin when he is relaxed, that people warm to and his personality still shines through. I can only hope that someday he will overcome Selective Mutism and he will have an interesting anecdote to tell his friends about his early childhood but no matter what the future holds we will be there to support him.
O often considers carefully his occupation when he grows up, bin man, car mechanic, chef are some of his recent considerations based purely on him surmising that you don’t have to talk for these jobs. I remind him that long before he is grown up it won’t be a problem for him, and he will be able do any job he wants.
October is Selective Mutism Awareness Month, and this is why I decided to write this primarily to raise awareness of the condition but also to tell my story in case it introduces Selective Mutism to even one person out there and helps them understand it a little more or in the hope it might help even one parent feel less alone.
More information can be found in the resources listed in the menu that I have gathered and used to help me educate myself. There are links to different professionals’ websites and content that is available online or book recommendations I have come across. It is important to note not all professionals and specialists in the field have the same view on everything and the resources listed are from different parts of the world. My observation is that some countries take slightly differing approaches to particular aspects of treating Selective Mutism, and individuals may have different opinions, but the overall advise is fairly consistent. Of course, there is no right or wrong way because every child is different, and one thing I think all professionals agree on certainly any that have crossed my path, is that as a parent you are the expert of your child, and nobody knows your child better then you, so you are best placed to help your child and have confidence in yourself to do this. This can feel overwhelming at times but put in supports in school and other parts of your child's life advocate for them and above all else be patient with yourself and the process.
My humble advice from one parent to another is to use the knowledge you have of your child along with all the information out there and go with your gut. If you get it wrong, it is not the end of the world we are all on a journey in life and learning and growing is part of that. We as parents are not at the beginning of our journey, we have gained some miles along the way but there are many roads ahead for us and we will try face them with positivity and bravery just as we would want O to do.
Keep smiling!
" A smile is the shortest distance between two people" Victor Borge
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