The national campaign to increase awareness of SELECTIVE MUTISM: ‘not being able to talk is not the same as having nothing to say’

Imagine a world where you can talk perfectly freely, normally and maybe even eloquently in some places, such as your home, but you cannot talk at school or work or social situations. The words just won’t come out, the harder you try, the worse it may become. It’s the stuff of nightmares, a bit like falling from a height but you wake before you crash-land, only this is not a dream, it’s the living hell for around 1 in 150 children in our nurseries and schools.

Libby Hill, Speech and Language Therapist, says, ‘Our knowledge of the condition has changed massively: we used to think they were choosing not to talk and were wanting to manipulate the adults around them’.

‘SM is now seen as a manifestation of social anxiety or phobia, occurring in temperamentally predisposed children who are unable to take normal life events in their stride, particularly when the reactions of others reinforce silence rather than speech,’ (Maggie Johnson, 2012).

This means they may WANT to speak but are unable to and they may become increasingly wary of any form of communication which could lead to an expectation to speak.

The national charity for information and research into Selective Mutism (SM)SMIRA are having their national awareness campaign during October, when people from all over the UK will be holding awareness events to try to increase the understanding of this very much mis-understood condition.

To raise awareness here in Staffordshire, Libby Hill and the team from Small Talk Speech and Language Therapy are providing a FREE training day at Fountains Primary in Burton on 28^th October. 'We really want to help raise the seriousness of the problem but also show that there’s lots we can do to help children and young adults,’  says Libby. There are parents and professionals coming from as far away as Bristol and London.

Libby is very excited to be able to include Natasha Dale, from Uttoxeter, in the training day.  Natasha suffered terribly as a child and teenager with the condition which really blighted her early life. Fortunately with her family’s and friends’ support, she has worked hard to over-come this and one of her challenges is to speak about it in public.

‘Natasha is a great example of how awful life can be with SM but also how it can be over-come,’ reports Libby. ‘I work with many teenagers who feel that they can’t access the usual rites of passage of teenagers e.g. taking driving lessons, interviews for jobs/college etc They can’t see a way around the chains of SM. However, when we work on small steps, we can achieve what they really want. Natasha is a perfect example of what can be achieved’

Small Talk have the first speech therapy dog in the UK, chocolate Labrador, Ralph, who helps in their work with SM. He is a shoulder (or neck) to cry on or he takes part in therapy programmes. There is a wealth of evidence to show the power of animals in reducing stress and he loves to help.

If you have a child who does not talk at nursery or school, she may not be shy and may not ‘grow out of it’. It may well be Selective Mutism.

For more information: www.private-speech-therapy.co.uk

 Natasha’s Facebook page Selective Mutism Recovery - Natasha's Journey

www.smira.org.uk

Selective mutism: a personal story

Guest post by Natasha Dale

After struggling with Selective Mutism for many years, I finally found the courage to film and post a video of my story (see below)

 What is Selective Mutism? – Selective Mutism is a severe anxiety disorder where the sufferer displays persistent failure to speak in certain situations. I do feel that the label ‘Selective Mutism’ isn’t very accurate, as for me and many others it isn’t purely about the inability to speak in certain situations, it’s the inability to use many aspects of communication.

 Selective Mutism took control of my life for many years and resulted in me feeling extremely trapped, unhappy and guilty. During this period of my life I could only wish to be able to sing happy birthday to my parents, to give eye contact to those I cared about, to eat in public and enjoy social family gatherings, to walk to a nearby shop independently, to clap and congratulate people who deserved it, to be able to cough when I desperately needed to, to cry when in pain, to laugh when happy, to be able to ask to go to the toilet, to answer the register, to say thank you when I was given help, to tell someone if I felt unwell, to make friendships and to live my life as myself; instead of a tiny bit of myself with a huge amount of the disorder that is Selective Mutism.

 I began my journey into recovery at the age of 18 when I joined an agricultural college and worked alongside animals. Here I was given 1:1 support every second I was on the college grounds. This intense support along with being around animals, seeing a counsellor once a fortnight and of course the constant support from my family, allowed me to begin to recover.

It is now my passion to help those with additional needs and my ultimate goal is to be able to work with people struggling with Selective Mutism. I am not fully recovered yet, but I am so very close. I am happy to be able to use my experience with the disorder to raise awareness and to help others going through what I did for all of those years.

Support the Stafford NAS and have a great night too!

As most of you know, we are a specialist team of speech and language therapists working with children with ASD and we take this role very seriously. We do what we can to support families with children with ASD. As a consequence we are sponsoring the Stafford branch of the National Autistic Society for their latest fundraiser. Mandy Binns and her colleagues work really hard  so please help them make this night a success. It will be fun too!!

More Than Words: a 10 week course for parents of pre-school children with ASD/Social communication difficulties

Let's Talk with your baby: great 8 week course for parents of babies aged 3- 12months

Team work makes it so much easier...... the A Team!

On Tuesday I went to see a little girl aged 4 years at home, who I'll call 'A'. This time last year, she was at the 'own agenda' stage of development where she didn't really see the point of communication. Her attention span was extremely short and she was more interested in my bangle than me. I couldn't see any verbal understanding. Her only expression was echolalia.

This week, we have a bright, little girl who will be starting school in September: she has a developing attention span, can understand  short instructions, uses language to get what she needs and to express herself. She can even tell you what she doesn't want very vocally! Her social interaction is developing well with children and adults. She now has a diagnosis of ASD. The only thing I'm worried about now is that she will be overlooked as she is so well behaved. 

Is this a miracle? Yes in a way it is, but it's actually the result of fantastic team work. At the centre is a parent who has done absolutely everything suggested, even when that meant making life harder for herself e.g. as part of getting A from 'own-agenda' to the next stage there was no helping herself to chocolate, she had to request a piece at a time, which was in a clear plastic box which she couldn't open on her own. As you can imagine, A wasn't happy!

• The key worker/SENCO who had worked tirelessly to achieve all the targets set, 
• The nursery who allowed it to happen
• The extremely knowledgeable, Early Years Advisor who co-ordinated everyone
• The lovely and very patient, NHS SLT who reviewed, set targets and saw as often as she could
• An excellent paediatrician who recognises ASD in girls
• me: I've worked through individual coaching for More Than Words and then worked on components of language and communication.

We've all worked together for the good of A. Well done to the A team! :-)

www.private-speech-therapy.co.uk

0844 704 5888

office@smalltalk-ltd.co.uk

The delayed effect of anxiety on children: 'complete fabrication on the part of the parent'

My role is to see children with ASD, Selective Mutism and complex communication difficulties. I don't mean complex needs, I mean complicated profiles and even more complicated situations. Many of these children are very anxious. I know that the more complex the case, the more simple my explanation needs to be. Time and time again, I see parents who describe their child one way and schools who see something different and completely refute what the parent is saying, even if they have the scratches and bruises to confirm it.

It is described as a 'delayed effect' or the 'pressure cooker' situation. I like to see it as 'the bottle of pop phenomenon'. the child keeps it together, maybe doesn't like to draw attention to themselves or can 'just about manage' until 3.30pm. There might be small signs, that someone who who knows the child well or someone experienced in childhood anxiety can spot, such as slight eye or vocal tic or the picking at the skin on their thumb.Then when they get home all hell erupts. The bottle has been shaken all day and the top comes off at the door. The door where they feel safe and secure with a parent who understands them, won't judge them or hate them whatever they do.

I've had this reported 12 times in the last few months alone,  but there is little written about it which might help professionals understand that what they see isn't always the true picture:

• the child with anxiety who smiles, so can't be worried at school
• the child who is sweet and polite so can't have sworn uncontrollably at their mum last night
• the timid, quiet child who can't possibly have inflicted those bruises because the lessons changed today
• the 'normal' child who does as he's told can't be demand avoidant at home
• The child who seemed happy for a new member of staff to take the class as he didn't say anything, can't have trashed the house when he got in
• the girl who said nothing  in class can't possibly have had a melt down at home because they'd moved the cupboard to the other side of the classroom
• the kind, helpful girl can't have scratched her mum so badly she drew blood when all she was trying to do was to give the ipad to a man to take to repair
• the 'ideal pupil' who loves school can't really hang onto the door handle and fight both parents every single morning because he doesn't want a bath

These are all real cases and some of you reading this will know who I'm talking about.

It must be parenting, it must be the parent, the parent must be fabricating........ I think NOT!!! We need training for staff in spotting the (often well hidden) signs of anxiety. It can be directly related to language and communication difficulties as they struggle to cope to understand or fit in......bit like a swan paddling away furiously underneath. It's exhausting for the swan and he needs a break after  a short time. It may also be related to sensory issues or both.  One thing is for sure, the parents need support not disbelief.

www.private-speech-therapy.co.uk