Selective Mutism

My youngest daughter lives by her own rules; the only problem is no one else but her knows what they are. You may have seen her recently on ITV’s “This Morning” where she was featured.

Maya was a “normal” baby. She always had a stubborn streak, which I believe she inherited from her father, but she rarely showed this in public. Happy, charming and totally delightful on all levels, I often had friends and family telling me how wonderful she was. The thing is she hasn’t changed, however, the way others view her has.

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Maya was born in Germany. When she was a year old, our family moved from Germany to Denmark and then when she was two, we moved from Denmark back to the UK. Not long after, it became obvious that she was missing having children of her own age around, so I organised for a local child-minder to look after her two days a week. It started slow. One day she pretended to take her voice out of her mouth and handed it to me. It was very cute! I took it, and handed it back. She pretended to put it back in her mouth. That’s when it started.

First she stopped talking to the child-minder’s assistant, then the child-minder herself, then anyone in a child care environment. Slowly it spread from them to acquaintances, family and then before we knew it, she was no longer able to talk to her grandparents and other close family and friends. She went into this world where words were no more. She would pretend to talk on the phone to family and friends, but when put in a situation where she could in real life, she would freeze totally and you could see her throat tense as she tried.

She would talk to me, my husband and her siblings and rather randomly, any child who happened to be at our gym, but that was all. While fully interactive in other ways, she simply could no longer talk in certain environments or in front of others. At first we thought it was rather quirky; funny even. However, as it carried on it became more and more frustrating.

At its worst, she was unable to talk to us when she knew anyone was around. To give an example, we had her grandparents over for dinner one night. Even upstairs, in a room with doors closed, she could still not talk to me knowing they were downstairs.

Selective Mute

This was the stage she was at when ITV came to film us. We had recently got a diagnosis and were struggling to get the help Maya needed. They made us a promise, in exchange for our participation; they would put us in touch with Maggie Johnson. Maggie is a well-respected expert on this condition. After emailing with her, and buying her manual, we started working using the techniques she suggested.

We have seen improvement, however, it’s been two steps forward and one step back. To list the progress would take a lot of time, but while I can say I still don’t understand Maya’s rules, they do seem to be relaxing quite a lot.

Maya started school in September in the nursery. She has still not said a word to an adult or child in that environment but I am now hopeful that she will.

These things do take time. There is no immediate fix. I have to keep reminding myself that this is a real phobia and like any other, desensitising it is the answer. Maggie was recently interviewed for a radio station and she talked about ‘graded exposure’ with relation to a child with selective mutism.

Maggie’s example was of a child who was afraid of the dark, where a child has a phobia of the dark. In this case parents wouldn’t punish the child, wouldn’t force them into a dark place, and wouldn’t just leave them alone in the dark. A loving parent would put the child to bed, leave the light on, leave the door open, leave the landing light on, use a bedside lamp etc; all of those things that you would do to avoid the fear, and gradually reduce it. This is a graded exposure to the dark. This is how we must treat children with selective mutism. It’s about taking baby steps. We should expect two steps forward and one step back. This is normal, but it’s also very frustrating.

Every day she struggles. I see her body language and face change as we head to an environment where she doesn’t feel comfortable. I watch her open her mouth to try to say something and then remember she simply can’t. I act as her “interpreter” when she has something important she wants to say but can’t say it directly. I cry when she’s not looking…

She’s my daughter. I love her with every breath. Some may view her as different, but the fact is she’s like any other 3 year old. Loud, bossy and fun and one day, you’ll all see it too!

Parenting children with special needs is becoming more common. What issues are you dealing with?