Selective Mutism

This week on the blog, I’m interviewing Susannah Bryant. She’s a fellow Mum who has an abundance to share about Selective Mutism. Read on for a relatable story, as well as a bunch of tips and advice, applicable to parents and educators.

Selective Mutism (SM) has played a big role in your family over the past few years. Please introduce us to your story.

Our eldest daughter (E) was diagnosed with SM by a psychologist at 3y 1m old. She actually initially spoke freely by the time she finished Pre School two years later. Unfortunately, the school she was at mismanaged the transition to primary school; she regressed and became mute again. We moved schools and she began speaking one or two words again to her new teacher straight away. We were very lucky that in Year 1, her class teacher happened to be an expert in Selective Mutism and she began speaking freely by the end of Year 1. Her SM had been moderate-severe but she was very determined in herself to get over it. During Year 2 she completed her recovery, having had some residual general anxiety and difficulty asserting herself. She is now a confident 9 year old!

Our youngest daughter (P) is almost seven years old and was also diagnosed with SM at three years old. SM presents differently in individual children, even within the same family. It has been harder to treat her. She had a milder case of SM but because she was generally less anxious she had less motivation to change and had found workarounds. However, with much hard work from a very enthusiastic teacher and myself, she began to talk to her teacher for all of her needs by Term 4 of last year. We anticipate that after a settling in period with her new class, she will continue to gain confidence in Year 2 as her sister did. She is already talking a little with her new teacher but is struggling with the change of classmates at present.

When did you first realise that it was more than just shyness? How can parents tell the difference?

We had known that E was very sensitive since she was about 6 months old. She had more separation anxiety than the average baby. She was a very challenging toddler in social situations but was pretty good at home when it was just our immediate family present. We knew there was something really wrong when after a year of attending the same childminder one short day per week for a year, she had never spoken a single word. When we were about to move house, I asked for her to go three days in our final week so I could pack up. We figured that after three days in a row with the childminder she would surely speak. Instead, she became increasingly distressed. I googled ‘three year old not speaking at childcare’ and as soon as I read about Selective Mutism, I knew that was what she had. The following day I spoke to Elizabeth Woodcock of the Selective Mutism Clinic in Sydney and she was diagnosed over the phone after I filled in a parent questionnaire.

The way that you can tell the difference between Selective Mutism and shyness is the severity, the frequency and the duration of the problem. It will significantly interfere with normal functioning. For example, a shy child when hurt would cry and ask for help but perhaps in a shy way. A child with SM might not even cry and if she did, she probably wouldn’t be able to say what was wrong.

With P, we did not know whether she had SM or not until she started Pre School and also did not talk. She was less anxious than her sister and although she was a ‘reluctant speaker’ with new people she had generally spoken in front of new people. There was some thought from teachers and even the psych that she was just ‘modelling’ the behaviour she saw from her sister, but this was not the case because her sister was only mute at school, was not mute at the time her sister was diagnosed and she was not at school with her sister!

Describe the transformation that you see each morning between leaving home and arriving at the classroom.

E was extremely challenging in the mornings before school and preschool but would continue to talk to me right up to entering the classroom. Sometimes she could talk to me in the classroom but no one else. Because I was the only person she felt safe with, I was the emotional punch bag; we had a lot of negative behaviour directed at me because her social anxiety meant that she would never want to displease a teacher.

I wasn’t able to help her much as she was generally worse when I was there. Her body language once she entered the classroom changed completely – her face was white, her jaw set, and shoulders hunched up. When she was really upset she would hide under tables. She was lucky that she was still popular and I’ve no idea how her friends didn’t get sick of the unpredictable nature of her behaviour. On a bad day, when they said hello it would often be met with an angry grunt!  This body language was the biggest indicator of how she was coping given that she was an SM child who was determined to force out a few slurred words come what may. She was verbal for a long time before she actually looked happy at school. We also had a lot of meltdowns after school. She is an externaliser and would chuck huge wobblies from the age of about two (before we knew what was wrong) to ensure that we would remove her from social situations she wasn’t comfortable in.

P on the other hand rarely looked very anxious, seemed quite happy a lot of the time and would almost always talk to me in front of other people, albeit maybe in a whisper. She was generally more able to communicate when I was there and would often make progress on the days when I stayed to help so I was able to be her support worker. However she would often be very annoying and controlling of me when I was there. Her behaviour would be worst at the end of the day due to the exhaustion of living with anxiety and the frustration of not being able to get her needs met. She is an internaliser and would put on a brave face or withdraw completely at school but feel very sad inside.

How do you explain these two different personas to teachers?

I was told several times that E was ‘fine’ at school once she was talking (though only saying what people wanted to hear). Knowing through her body language that she was far from ‘fine’, I found the only way to show teachers the different personas was to video both girls’ true personalities at home and then show it to them when they weren’t present. I had a teacher later say to me: ‘I thought she was fine last term, but now I can see in retrospect that it’s only this term we’re seeing her real personality.’ This has also worked well with P.

I’m curious to hear how your children have felt about their Selective Mutism over the years?

E is a highly insightful, intuitive and articulate child. I think this was enhanced by having SM and there is no way I can put into words her experience as well as she has explained it to me in the past. Once recovered, she said that looking back, she used to feel very sad, sick and scared inside and that she used to just wish and imagine that she was at home in her room in her bed with her comfort blanket, or with me and her sister. She is happy to talk openly about having had SM in the past and isn’t embarrassed about, nor does she get upset remembering it now. She has been a huge help to us in treating her sister by giving us lots of ideas of things she thought might help, having been through it herself. She’s just a normal, happy little girl now. She’ll always have that tendency to anxiety but she’s learned how to manage it from a young age and develop healthy coping strategies so I’m hopeful about her long-term mental health.

It has always been hard to get P to articulate her feelings and she is also quite young and still in the recovery process. However, she will occasionally come out with something incredibly sad or sophisticated just when you are not expecting it. We used to have a lot of negative self-talk from her: ‘I can’t do it because I’m shy’ type of thing, very defeatist. But as she’s almost recovered now, she focuses on what she can do, can see the end in sight and takes great pride in her achievements: ‘I told my teacher about where we went at the weekend!’ ‘I spoke to someone from the other Year 1 class today!’ etc.

Have friends and family been supportive to you on your journey or has it been an isolating experience?

Most people have tried to be supportive, but as with most things in life, if you haven’t experienced it yourself, it is very hard to fully understand another person’s experiences. People try to empathise but they probably don’t think through the potential life long consequences if treatment had not been successful and how much it affects our whole family everyday. For example, imagine how it feels to have as just ONE of your many worries, the fact that if a stranger entered the school and snatched a child, YOUR child might not even be able to scream! Unfortunately, there are also a significant proportion of people who don’t take it seriously and/or think of us as ‘those parents who have to have a diagnosis for everything these days – aren’t they just shy?’ I’ve found this to be the case with other parents at school too. Many parents delight in telling me when their child has reported to them an increase in our girls’ communication, are thrilled if our children wave at them or read to them in class, ask how things are going and ask the best way to approach an SM child in class. They have no problem if their child is a whisper buddy or needs to help our children with something. There’s always a few who see us as neurotic parents, a bit of an inconvenience or a drain on resources, but that’s life: most people are nice and a few are not!

I have found that one of the most useful things for me has been to befriend another local mother who has children with SM. Other parents of SM children are not all that easy to come by, but I’m happy to act as a central contact point to put people in touch with another family in their area. Selective Mutism Australia also has a Facebook Group where people can connect online or at local meet-ups.

If you can’t befriend another parent of SM children, then reaching out to parents of children with other special needs can also be very nourishing. At times you feel like a bit of a fraud because at least your child has something that can be treated rather than just being managed over a lifetime, but there are certainly things that you have in common. Whenever a child has extra challenges, it inevitably means more work. Other mothers of special needs children understand what it takes to coordinate and attend the myriad of medical and allied health appointments that a child might attend; to constantly advocate for their child at school and regularly liaise with teachers, the financial strain and time pressure that all of the above create, as well as possibly missed career opportunities for parent/s as they shoulder this burden.

What successful modalities of intervention have you used thus far?

Because we tried a lot of different things at the same time it’s difficult to be 100% sure what helped and to what degree. I do believe that all of these things played a part in varying degrees.

  • The Move to Learn program as taught to us by Clare along with some Rhythmic Movements

  • Specialised chiropractic treatment to integrate retained primitive reflexes

  • Meditation

  • Homeopathy

  • Making sure there are no other underlying health issues, allergies or deficiencies which may be exacerbating the anxiety – finding a really good natural GP helped with this and lots of my own research.

Including:

  • Treating their MTHFR gene mutations with activated B vitamin supplements (that is a whole other blog post in itself)

  • Supplementing with magnesium and high quality fish oil

  • Minimising additives and feeding them the best possible diet within budget and time constraints

I believe all of these things helped reduce anxiety but none were a silver bullet for SM. There’s no short cut.

We tried a couple of psychologists and while important for diagnosis and advocating for our children’s needs with the schools, we found that psychologists tell us what to tell the school to do. The hard part is getting the school to provide what’s required since there’s no funding for SM now. Working with a child with SM in the psychologist’s office may be helpful to a degree, but what they really need is help in the classroom putting theory into practice. Therefore we privately paid one of the Pre School’s SSO’s to come and work with P in her reception class for 30 minutes twice per week. In the end I took over that role myself as I still had to coordinate with the teacher & SSO and funds ran out.

Unless a child gets over SM at 3 or 4 years old just by parents and teachers being aware of what the problem is and removing all pressure to speak, the only thing that really works for a primary school age child is the teacher and parent working together to provide structured opportunities for the child to practice getting over their anxiety in tiny baby steps. By far the most important thing is a sensitive teacher.

For educators reading this, what classroom strategies have been the most effective for helping your daughters to feel safe and confident?

  • Sitting them next to two friends that they feel comfortable or are verbal with

  • Not putting them in groups with kids who make them feel anxious

  • Putting them in groups with one of their friends

  • Not springing surprises on them, they need warning of changes like kids with ASD

  • Allowing the use of help cards and signs when managed carefully to be accommodating not enabling (more information at the Selective Mutism Classroom Support Facebook Page).

  • Spending time with them one to one with Mum or Dad after school for a short time once or twice per week doing non-verbal activities to build rapport

  • Working with child and parents to set, reward and review achievable targets every week to break down the process into bite-size chunks

  • Setting them up with kids to play with at lunch & recess if they can’t initiate it themselves

  • Working as a team with the parents

Once a teacher understands the concept of pushing an SM child only a tiny bit outside their comfort zone and rewarding bravery, but without ever pushing them too far, they can soon adapt this to any situation. As an example, the testing of reading levels.

How a child may progress incrementally towards being able to have their reading tested:

  1. Child can’t talk to teacher

  2. Child will talk to Mum in front of teacher at 1:1 time

  3. Child might allow Mum to record her reading a book from home

  4. Child might allow Mum to show this to teacher when she is not present

  5. Child will say a few words to teacher at 1:1 time

  6. Child talks freely to teacher at 1:1 time but not in class

  7. Child might whisper to Mum or a friend in class

  8. Child might read to Mum outside classroom with no one around

  9. With many steps in between….

  10. Child might whisper basic needs to teacher

  11. Child might read one page of a very easy (well below their reading level) book from home at 1:1 time

  12. Then read a harder book at 1:1 time

  13. Then read an easier book in the class with one or two friends present when others are at P.E

  14. Then read an easier book of their choice to teacher during quiet reading time

  15. Finally working up to reading formal levelled readers not the testing books and no comprehension questions

So you can see how many steps it takes to get from a child who can’t talk to a child who can have their reading level tested in the class like every other child.

It’s also important to keep in mind that your goal is to help the child overcome SM so that they can fully participate in school. It is not your goal to find a way to assess the child’s reading level. Not knowing the child’s reading level at age six or seven pales into insignificance when you consider that they can’t talk to get their needs met all day. By treating the SM, you will then be able to assess the child accurately later on.

And finally, what parting words of advice or encouragement do you have for other parents who have a child with Selective Mutism?

Prepare yourself for a long, hard slog! Although some very young children can get over SM in as little as six months with the right help, and if you are lucky in getting intuitive sensitive teachers, more often than not it takes a couple of years even if you are doing absolutely everything possible. It only takes one teacher that your child doesn’t click with (often through no fault or their own they may just happen to a be trigger person) and straight away that year is added on. However, don’t give up, keep slogging away at it because this is a disorder that your child can completely recover from. The earlier they get over it, the lower the chances of long-term problems. This puts a huge amount of pressure on you. You will probably get anxiety from worrying about your child’s anxiety disorder, but this phase won’t last forever!!

You have to be your child’s advocate. No one is going to make this happen apart from you. It’s very hard to do this when you are emotional. If the school is not helping your child as much as you would like then you may also be angry AND emotional, which is an even worse cocktail! I love the school we are at now and cannot sing their praises enough as the teachers have given up their own time to build a rapport with my children after class, have been prepared to work with me and respect me as the expert on my own children and have allowed me access to the classroom whenever I’ve needed to be there. Most of all I’m proud of what I’ve achieved and how hard my girls have worked to overcome SM and manage their anxiety. It was a horrible time but if I hadn’t been a polite but insistent thorn in everyone’s side, keeping the ball rolling, then things would have progressed much more slowly. It’s common for children to get to a certain point of communication and then just ‘stall’. SM children can very easily slip through the cracks.

Finally, knowledge is power. Most teachers and even psychologists know very little about SM unless they have a special interest. I read every book I could find on SM and scoured YouTube for every recorded seminar and documentary to get ideas on how to help my girls. When you are negotiating with the school and you sound unsure and confused, you are less likely to be successful than if you are clearly very well educated on the topic.

How can readers connect with you Susannah?

I’m a former midwife, so advocacy has been an important part of my professional life, which certainly helped equip me to for this task. I thought that once my own children had recovered from SM that I wouldn’t ever want to think about it again, but it seems a shame to waste those thousands of hours I spent reading, writing, worrying, preparing and working in classrooms and I want to reach out to other people in the same boat.

Answering these questions for Clare’s blog has made me realise that I really should write a book on this before I forget it all! For now, I’ve set up a Facebook page where you can find loads of useful tips and links.

I would like to be able to provide some support to other families with a Selectively Mute child alongside my main work as a private breastfeeding & sleep supporter to new parents. This may be as a coach to help parents take on the role of support worker themselves, by being the support worker myself and/or by advocating for the child and parents with the school. You can find me at Hills Postnatal.

 

A massive thank you goes to Susannah for sharing her journey and tips. If you know a family on their own journey with SM, please share this post with them. 

Comments 2

  1. My son has selective mutism to 1230 shyness and I wondered about the MTHFR because I am compound heterozygous and so is my mother

    1. Super interesting Tammy. I also have one of the MTHFR gene mutations (I can’t remember which one). I had SM as a child and my daughter (now 6) does too.

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