Selective Mutism (SM) is a widely misunderstood diagnosis. It is often misdiagnosed or under-diagnosed. Children and their families have few resources upon which they can rely and few people they can turn to in order to understand how to effectively cope with this disorder.
I have been raising a daughter with SM. She was diagnosed just after her 2nd birthday. One of the youngest children to be diagnosed in the specialists’ practice. This was partly due to the keen eye of a young teacher who worked with my daughter and partly due to the kind of parent I am. I do not turn blinders on when it comes to my child or anything in my life for that matter. I deal with these things “head on” as painful as they can and may be.
Soon after my daughter’s diagnosis, I began researching as much as I could about the disorder. I put together a presentation for my daughter’s school and educated them. I ordered resource books and decided on a strategy for how I was going to begin working with the educators and my daughter. I relied on a child psychologist in our immediate area who was open, supportive, and helpful in assisting us through the process. We became a strong Team.
Part of our strategy for dealing with my daughter’s mutism was to begin by educating the caregivers/educators in my daughter’s life about how to approach her and what not to expect. It meant they had to be very careful about what they said, how they asked questions, and what they expected of her. In time, she did slowly begin speaking to the teachers and her peers.
Another part of our strategy was to bring the teachers (and some of the children) from the school into our home. We began by selecting the teacher that had first recognized my daughter may have mutism. We paid her to come to our home every Saturday to work with our daughter. They played. It was as simple as that. For a while, my daughter did not speak at all to her. She used non-verbal communication only. For anyone that doesn’t understand what being non-verbal is about, I can tell you that children with SM become professional mimes. They make you guess what they want. They point to things. They nod their heads. If you didn’t think about the disorder, you would see nothing wrong with these children. You would even convince yourself you’d had a conversation with them. But, all of it would be non-verbal.
So it was that her teacher came every Saturday and every Saturday they would play together. One day, my daughter “whispered”! When asked a question, instead of nodding or instead of pointing, she whispered. This was the breakthrough. The teacher went on as if everything was normal. She did not get excited, did not make a big deal out of the speaking, and went on with playing, but inside she was shouting from the rooftops about the fact that she had heard my daughter’s voice! It was exciting and wonderful to watch the transformation.
All of our communication took place outside of these play times. It was important to never speak in front of my daughter about her inability to speak. It was imperative that we email back and forth instead or speak on the phone away from my daughter’s perceptive ears. She could not be made to feel “different” or have attention drawn toward her since this would have only increased her anxiety and may have caused her to revert back to her mutism.
Over time, the whispers became talking softly, and then talking softly became talking normally. Eventually, I would dismiss myself from the home and run errands so that there would be no adult in the home other than the teacher. Eventually, I would come back from my errand and I would hear the running, the shouting, the jumping and the laughter from her and her teacher. We had broken through the anxiety and she was acting as ordinary as she did when no stranger was in the home.
Children with SM will act like any other child with their parents and siblings. Typically, it is in the school setting or a public setting where they will become mute. These are times when there are expectations to speak and children with SM have anxiety that increases with expectations or situations that increase their anxiety.
As my daughter has grown older (she is almost four now), she has become very perceptive about the fact that she has a hard time speaking to people. When we drive in the car, sometimes she will ask if other people can hear her. When people come into our home, she will become mute. Sometimes, she will not speak the entire time they are here and other times she will feel relaxed enough to speak to us, even whispering at times, and sometimes she opens up completely and speaks to the company we have. Some of this is due to how familiar she is with the people that are in our home and how familiar they are with her. If she is not pushed, but allowed to open up at her own pace, she does better. If there is no expectation whatsoever from the other person, this is ideal.
Unfortunately, life is life and people are not all trained about SM or a child with SM. Often times, when we are in public, people will call her “shy”. They will attempt to speak to her and then when she doesn’t answer, they will say to me or directly to her, “Oh, she is shy”. This word has become so common place, my daughter has begun calling herself “shy”. SM is the opposite of shy. Children who are shy eventually warm up and begin speaking. Children with SM never will speak to a stranger. They become frozen in time and the more they are pushed, the more distressed they become.
An example of this was in our local supermarket. My daughter was excited because she was getting lollipops. She was sitting in the grocery cart waiting for them to come down the line. The man bagging the groceries saw them and looked up at her. As soon as his eyes met hers, she froze. Her face became expressionless. Her body posture tightened. He was nice enough. He asked her if those were her lollipops. She looked at me. I answered for her, “Why yes those are!” He proceeded to make a big show out of putting them in a special bag and then he handed them to her. I said, “thank you” for her because she could not say that to him. Instead of taking her cues, he proceeded to take the bag from her and asked her to say, “thank you”. This happened several times, each time my daughter’s eyes became more and more distressed until tears began to form in them. Finally, the cashier, noticing that my daughter was distressed, told the bagger to look at how upset she was getting and that my daughter was very “shy”. There was that word again.
I don’t blame the bagger or the cashier for using the word shy. I don’t blame them for treating her like any other child that may have eventually said, “thank you” in order to get their lollipops. As a mother though, I feel very sad inside when I see how much difficulty she truly has relating to others in a public setting. And, it is harder than one would think to intervene on this type of situation as a parent.
After this distressing moment in the grocery store, I pushed her out of the store. I could see that she was still very upset about what had just happened. She wasn’t crying, but her face spoke volumes. I could tell she was holding back tears. I leaned down and kissed her on the head. I wanted to cry myself. Instead, I asked her if she was feeling upset about what had happened. She nodded to me (not even able to speak to me at that point) and I told her, “It’s okay, don’t worry okay?” And she nodded her head “yes” to me again. I then asked her if she was upset because of how hard it was for her to speak to people. She shook her head yes again, and I just told her that it was okay and as she got older, this was going to get easier.
As we got back to the car, the moment was gone and she felt free to speak to me. She was back to herself and the man had been forgotten. But as a mother, I was upset inside. It is so hard to see your child go through something that causes them distress. Of course, when a child is in pain, there is a reason for it. You deal with the pain with medication. You may take a band aid out and offer it to cover the boo-boo. You are able to nurture the child in that way. But what about anxiety? What about what happens to a child with SM? It is complicated and it is harder than you think.
Parents of children with SM can often feel isolated. Very few people, if any, truly understand it. There is a lot of stigma still associated with the disorder. There are still professionals out there that will assume such horrible things about us as a family, my daughter as a child, and what caused her SM. But the truth, well the truth is very different from the ignorance that continues to exist in this world. The truth is, my daughter has anxiety. That is it, plain and simple. She was born this way just as a child can be born with a club foot or a birth mark. She was born with a heightened sense of others, her perceptions, and the world around her, and this causes her much anxiety.
No, my daughter didn’t suffer any major trauma. She was not sexually assaulted. She is not abused. We do not over protect her or keep her from groups of people or people at all. There is nothing untoward about her childhood. In fact, she is a very precocious, very intelligent (beyond her years), very caring, and very nurturing young child. Those that she allows herself to open up to get a very special glimpse into a very funny and smart little girl’s world.
So many times, our family has run into ignorant people and ignorant professionals. People who believe our daughter will outgrow this disorder are wrong. People who believe this disorder is caused by any single event or untoward events are wrong. People who believe that my daughter is stubborn, willful or defiant, are wrong. Selective Mutism is an anxiety based disorder that my daughter was born with biologically and biochemically.
There are many different strategies we are using as a family to help my daughter. I have tried suggestive hypnosis. For example, when I see my daughter’s anxiety increasing, I ask her to picture her favorite color pink. I ask her to think of this color coming up over her head and flowing down over her body and hugging her and protecting her. I ask her if it makes her feel better. Sometimes, just like us all, she is more open and receptive to this suggestion and other times she is too smart for me and not open to it and will tell me, “Mom, I don’t want to think that and I don’t want to talk about it”. Yes, at four years old, she understands, just a little bit more, even without being able to explain exactly, what will work for her and what won’t, and if she even wants help from me to decrease her anxiety symptoms.
Just recently, she has told me that she is okay if there is only one friend but if there is a group of friends, she isn’t as good with that fact. She said it in her own way. Pretty straight forward. Selective Mutism is a social anxiety based disorder. The symptom is mutism. The fear is not of speaking. It is fear of being heard and being watched. It is fear of being on public display. It is fear of being judged and ridiculed. Children with SM do better in a small group than in larger groups. They do not do well with public speaking and they do not speak in front of people they do not know and even have difficulty speaking in front of people they do know.
The trick is to decrease the anxiety. Using techniques like we have as a family with desensitization, slowly introducing one person and then bringing more into a familiar environment, using strategies to decrease the anxiety so she is able to verbalize, is key to progress. Another strategy that works for my daughter now, since she has made progress, is to tell her that her pants are black (when they are pink). We are adamant about it, in a joking, silly manner, I will say, “Are your pants black?” And she may not be able to answer. I will continue, “Yes, those pants are black”. Slowly, she will be able to verbalize, “No, pink”. She may whisper this answer, and she may have uncomfortable body posture, but if we make it a game, she is able to decrease her anxiety and open herself up to speak out loud in front of someone. Usually, this is when we are alone in a room with her pediatrician, or a nurse, or one friend. It is small groups, not large, but it is progress.
For anyone helping a child with SM, it is important to understand the disorder and the steps needed to decrease the anxiety and increase the opportunities to desensitize the child. It is important to start these steps at a young age. The older the child gets, the harder it becomes to break down that wall of fear and break through the bad habits that build as a result of trying to cope with anxiety. Any step is progress and any progress is healthy for a child that is learning and growing and building their self confidence.
Source – Personal Knowledge and Experience