Evelena & Selective Mutism


img_8363My youngest daughter Evelena age 11 has ‘Selective Mutism’.  Personally, I hate the name, it sounds more like she has missing limbs whilst being partial to a form of mutation! However all limbs intact Select Mutism is actually

A severe anxiety disorder where a person is unable to speak in certain social situations, such as with classmates at school or to relatives they don’t see very often

As a young child, she was developing well.  We had no worries or concerns.  She started nursery when she was 2 ½ years old.  She, as we thought, settled in well albeit she was quieter than her siblings, but we pu tit down to shyness, after all, she spoke and engaged with her friends no problem.  At home she chattered away nonstop, and was often arguing with her brothers & sister and at times answering us back!

More often than not we would be telling her to keep her voice down!!

Outside or in the company of family and friends she was quiet, but it was no biggie after all her older brother Keelan had been a shy little boy, we just assumed she took after him.

Starting reception at school, again she settled in well, played, laughed and talked with her friends, just like most other children of her age.

However, there most of the similarities stopped.  Unlike the other children in her class, she wasn’t participating verbally.

In the classroom, she wouldn’t answer any questions asked, preferring to keep her head down.  She wouldnt engage with the teacher or make any kind of eye contact.

When approached by the teacher it would leave her sitting motionless, eyes fixed firmly on the floor; this became an all too common practice.

A few months into her school year with no sign of any improvements, her teacher approached us voicing concerns over her ‘behaviour’.  He asked if we would mind someone coming in to observe her in class, he just felt something wasn’t right.

We refused, at the time we didn’t have any concerns, yes she could be quiet in social situations, but again we put this behaviour down to shyness and believed she would eventually relax and talk.

Fast forward to Year 1 at school and it was the same scenario.  Complete silence in the classroom.  Her only means of communication to the teacher were through her friends, who had by this point began to naturally speak for her when required.  It wasn’t odd to them they just naturally did it.

However, after some time it became clear things were not improving.  I began to think maybe her teacher was right maybe it wasn’t a case of her being shy there was more to it.

I started to question her about her seeming reluctance to speak, why wasn’t she talking to her teacher? Why this, why that……?  She had no real answer, I couldn’t seem to get through to her.  I began to threaten her that there would be no treats, or I would ground her if she didn’t talk.  Especially when someone had directly spoken to her.  It all failed to work.

The only guaranteed outcome at the time was I ended up getting incredibly frustrated with her.  I would often get angry and shout at her to ‘start talking and stop being so rude’.  I began to believe she was being stubborn.

If we went shopping she would chatter away nonstop until someone we knew would approach us.  If they said hello or anything to Evelena her face would glaze over and she would completely ignore them.  She would again, fix her eyes either directly at me or straight to the floor.

Again, I would feel so frustrated and, if I’m honest, embarrassed.  I would quickly bring any conversation back to me, I always imagined the other person to be thinking how rude she was, I know I probably would have!

I began to notice how she would stop talking to people she’d normally talk to if I happened to be around, it was like she was embarrassed to talk in front of me.  She had no answer for me when I questioned her about this; a shrug of the shoulders was the most I got.

At parties, family gatherings her silence was evident, if I spoke to her she wouldn’t respond, she just stayed glued to our sides.  After a “long warm up time” usually when the party or gathering was just about over she would be ready to join in.  If we were out with her friends she would tend to join in a lot quicker and be quite happy playing and chatting, but that would stop if we all sat down to eat.

I remember spending days and night googling her ‘symptoms’ the term ‘Selective Mutism’ kept popping up, and on checking the ‘symptoms’ I found myself ticking nearly all the boxes!

Was this my daughter? It certainly looked like it, but she did not seem to be refusing to speak. It seemed as though she was truly unable to speak.  I felt this was it, my daughter had Selective Mutism and she could not help her silence.

I decided to approach her teacher who had suggested having her assessed in class with my findings.  He told me that when I first refused his help, he had, in fact gone ahead and had her assessed due to his concerns.  He had been waiting for the ‘right time’ to tell me.  After some discussion a meeting was scheduled for the following week.

We met with the Speech Therapist, who originally assessed her and the in-house school SENCO.  The speech therapist shared her findings with us; it was as I thought, Selective Mutism.  She asked us lots of questions about our home life and I remember at the time really feeling under the’ spotlight’ as if we were hiding something.

Had there been any traumatic event in her life?  was the million dollar question at the time, we couldn’t think of anything, it was all a blank.

It wasn’t until sometime later, that we came up with what might have started it all.  When Evelena was 16 months old an accident at home ended up with her having to have stitches in her face.  A facial wound too deep to glue left the Doctors no option but to put her under general anaesthetic for stitches.

Holding her hand as the anesthetic took hold, a nurse handed me a pager. She told me they would page me once she was in the recovery room so I could be there when she woke up.

As with most well-laid plans this did not go well.  By the time they paged me it was too late.  As I neared the recovery room I could hear Evelena screaming, she sounded very distressed.  As I neared her I could see she was totally disorientated and in a very distressed state.

It was a very, very long, night spent in hospital.  She was crying throughout the whole night.

It was only when recalling this to an Anaesthetist some years later, that this traumatic event could be seen as a potential ‘curve ball’.  He told me how when kids wake up from the anesthetic, they will often be disorientated and it can be a very frightening and traumatic experience for them if there is no familiar face for them as they wake up.

However, this event is only an assumption of the cause; we don’t know for sure, but there is nothing else we can narrow it down to.

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We discussed how to moved forward, and guide Evelena through her primary school years.  It was agreed the school would allocate her a dedicated person to follow a plan called ‘Breaking Down the Barriers’ a 7 step structured plan for schools working with a child who has Selective Mutism.  In addition at the start of each term a contract would be drawn up between Evelena and the teacher with a list of achievable goals she would sign to shown her understanding and agreement.

This was to be an all new experience for us as a family and for the school, who up until that point had never had any dealings with a child with Selective Mutism.  It was an unwalked path for us all.

I cannot thank the school and staff involved enough for their continued support in helping Evelena through, her primary school years.

So our journey began, learning to understand Selective Mutism in order to help her on her way.  Looking back, I remember regular pangs of guilt following me around, reminding me all the times I had got cross and frustrated with her, all the while her struggle was real.  Desperate to speak, she just couldn’t find her voice when she wanted to.

Believing I had added to her anxiety rather than helping was not a good feeling.

Her younger brother, in particular, had been her ‘crutch’ for many years.  With only a year between them they are very close.  Often he would speak for her and there were times when fed-up he would tell her she would have to talk for herself, as he had had enough!  Of course, that never happened, they were just idle threats.

It upsets her if I question her why after all this time and continued progress she can’t say a simple “yes” to her teacher at register time, however that aside she has come so far over the past few years now able to hold eye contact and nod a simple yes or no a big achievement in itself.

Ciara, my eldest daughter has a theory that maybe it’s because all the other children will take more notice of her suddenly talking and make a big thing of it that she feels unable to verbalise a yes at register time, I don’t know but it’s a good theory.

However,  Evelena assures me she will talk when she starts Secondary school,  often saying it will be easier as no one will know she never spoke at Primary.

I truly believe she means it, I know she has the want and I hope this will be the case, but certain failed targets tell me it might not be that easy.

To this day I find people confuse my explanation of Selective Mutism with shyness, unlike a readily identifiable disfigurement or a more well know condition few, if any have heard of it, then again why would they I hadn’t until my daughter presented with it.

Puzzled looks are often what I see, some even saying isn’t it just another name for shyness, telling me she will be fine and probably grow out of it even that she probably does it on purpose for attention!

Evelena now is happy to ‘fly solo’ at her friend’s parties, houses and even sleepovers, as long as I, at her request, explain to any adults unfamiliar with her that she will not speak,  so our explanation of this to people is she is very shy that way people understand after all who doesn’t know what shyness is!

She is not a child to hide away in a corner and often puts herself forward at school to take part in various drama parts, albeit no speaking part.  It saddens me when she stands on the stage doing all the actions knowing she would like nothing more than to have a speaking part, but I am just truly grateful that she is able to put herself up there in front of everyone and am very proud of her for this.

So that’s how it all started for us,  as a family we have learnt to not ignore or treat her with kid gloves surrounding her Selective Mutism, yes it upsets and frustrates her greatly sometimes but then life can be full of upsets, fears and anxieties we can all have them,  it’s how we learn to deal with them.  Alongside her Selective Mutism come other anxieties, whether they are connected to Selective Mutism or not we don’t know.

Bedtimes are a big ‘thing’ in our house and I will be dedicating a piece around this ritual of which I hope we can all, at some point recognise or relate to.

The more people hear about children who are chatterboxes at home, but silent in social situations, the more we will find out that they exist much more than we have thought and help can be given.  In fact Keelan has mentioned a boy in his year has Selective Mutism and another child in Evelena’s school with Selective Mutism has since started.

If you can relate to any of what I have written or have your own account, ideas, anything doesn’t even have to be specifically on Selective Mutism, it could be other anxiety issues please get in touch I would love to hear from you.

Sometimes you just want to read that one account you can relate to, I know I did but was unable to find any such article.

You want to feel that you aren’t getting it totally wrong or are not the only one dealing with a problem.

I have learnt that there is no wrong or right way,  just the way that works for us.

I’m sorry for any spelling or grammatical mistakes.  Its only now I realise how right my parents and teachers were, I should have paid more attention in class, especially English!

IMPORTANT NOTE                                                                                 

Please note I am not a professional, therapist or any kind of expert just a mum of a child with Selective Mutism.  The resources offered here are not intended to be used instead of seeking professional advice that is something you will need to figure out what is best for your child and seek professional help.


18 Comments

  1. April 18, 2017 / 10:17 am

    Sharon I had not heard of Selective Mutism before reading this post and at the beginning as I was reading I was thinking that it sounded just like my eldest who has always been a bit reticent about speaking up. So it easy to see how it could be overlooked. Thank goodness for a mother’s instinct! Your daughter is lucky to have you fighting her corner and I hope that in time she will make more progress. Sometimes small steps are the most effective. Thank you so much for sharing this with us. #TweensTeensBeyond

    • Shazzab
      Author
      April 18, 2017 / 3:23 pm

      Hi it was all very new to me as well! Thanks for reading and thank you for your kind words. Sharon

  2. April 18, 2017 / 1:33 pm

    Sharon, this is really interesting as I hadn’t realised that this was a condition either. Like Jo, I can certainly recognise these traits and I guess the difference here is being able to distinguish between general myth and where this condition is affecting ones quality of social interaction. It sounds as though Evelena has made great strides forward though. Well done you and thanks for sharing this with us at #tweensteensbeyond

    • Shazzab
      Author
      April 18, 2017 / 3:25 pm

      No, I hadn’t realised it was a condition either and if I’m honest I still think some people I know think I have made the name up!! However, she is making strides and for that I’m grateful. Thanks for reading. Sharon

  3. May 13, 2017 / 12:00 pm

    This is very informative and I had never heard of the condition before even though I could think of many examples of having encountered it. #blogstravaganza

  4. May 13, 2017 / 9:54 pm

    When I taught I had two selective mute children in my class- both girls and it really was both interesting and challenging for me.

  5. May 14, 2017 / 8:42 am

    Some very interesting and thought provoking nuggets. I hope she can work out a way to cope at secondary school and that it is easier not harder. A big challenge it be sure. #blogstravaganza

  6. May 14, 2017 / 1:57 pm

    Bless her, I hope that secondary school is the fresh start that she feels she needs. A new place and new people can work wonders! Thanks so much for sharing with #Blogstravaganza xx

    • Shazzab
      Author
      May 15, 2017 / 10:15 am

      Thank you & thanks for reading x

  7. May 25, 2017 / 9:19 pm

    My mum was a teacher and I remember she had a child in her class with Selective Mutism. It’s definitely a very misunderstood condition and I’m sure it must be heartbreaking for you to know that it is an anxiety issue that is causing it. You have explained everything so clearly in this post, and I really think it could be just the thing that other worried parents of similar children need to read. I’m definitely going to share. #coolmumclub

    • Shazzab
      Author
      May 26, 2017 / 2:11 pm

      That’s really interesting to know your Mum used to teach a child with SM. Its not always easy but hopefully she will battle her way to. Thank you for you reading, your comments and for sharing.

  8. May 26, 2017 / 6:17 pm

    Wow I had no idea about selective mutism I guess it must be so hard to break out of at school once the precendent has been set and I really hope she will be able to break out of it come secondary school, Thanks so much for linking this up to #coolmumclub xoxo

    • Shazzab
      Author
      May 30, 2017 / 9:29 pm

      Thank you, and thanks for reading x

  9. May 31, 2017 / 8:05 pm

    This is the first time I’ve heard of selective mutism, fingers crossed like your daughter says, when she goes to secondary school she’ll start talking. I love that her siblings talk for her – as a child, I had hearing problems so when I spoke it didnt come out properly and it was only my sister who understood me and needed to translate! #coolmumclub

    • Shazzab
      Author
      May 31, 2017 / 8:56 pm

      Thank you & thanks for reading 🙂

  10. Gill Clitheroe
    November 6, 2017 / 8:39 pm

    Hi. Are you sure it isn’t ASD. My daughter was labelled with selective mutism by a teacher at her school but was later diagnosed with ASD.
    Does your daughter have any sensory issues, scratchy clothes, aversions to food etc? It is just a thought as she sounds just like my daughter.

    • Shazzab
      Author
      November 6, 2017 / 9:25 pm

      No its def. SM as she has no sensory issues. The only thing she likes to do, but its like a comforter is to twiddle her clothing.

  11. Hayley F
    November 23, 2017 / 10:03 pm

    I’ve just come across your blog. I’ve heard of selective mutism but dont know a lot about it. I really hope your daughter gets on ok at secondary school x

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