Selective mutism: When the words won't come out
I will never forget the day I realized why my 7-year-old son Jacob stopped speaking. He was diagnosed with the social communication anxiety disorder known as selective mutism (SM).
He was not choosing or "selecting" not to speak, he physically could not speak. He once told me he felt that the words were stuck in his throat and couldn't come out.
When Jacob was home, he was loud, funny and active. It broke my heart every time I dropped him off at school and a boy stepped out of the car who was so frozen with fear and anxiety that he could not speak.
For the next eight hours he became a mime who would shake his head yes or no, write questions in a notebook, and if he got hurt he would "act out crying" but not a sound would come from his mouth. This went on for two years.
Family and friends would come over, people with whom he used to speak freely, and the words were stuck. As soon as our company would leave, I had my son back. Well-wishing people would try to bribe him, force him and beg him to speak. I later learned that if a selectively mute child feels an expectation to speak, this only heightens the anxiety and makes it worse.
My mother and I attended a conference on treating selective mutism in Jenkintown, PA., held by Dr. Elisa Shipon-Blum, president and director of the Selective Mutism Anxiety Research and Treatment Center (SMart Center). When I returned home I was so excited to put what I learned into practice.
We were very blessed with two amazing teachers who were Jacob's guiding hands during school hours. Brenda Haddox and Susan Martin, both teachers with Pickerington schools, were incredibly patient and understanding - which is crucial to SM recovery. They paid close attention to Jacob's progress and didn't pressure him to speak.
Jacob viewed himself as "the kid who didn't speak," which is how many SM children are comfortable and why they stay in this pattern if left untreated. They learn to adapt through non-verbal communication. Parents and teachers can enable this behavior if they do not encourage the next step. I'm talking about encouraging, not forcing. The selectively mute child needs to feel in control.
My son's journey began with whispering to his teacher, provided they were the only two in the room. As the year progressed, he began to whisper in her ear while other people were in the classroom. She became his "verbal intermediary."
By the end of the second grade, he felt very comfortable with Mrs. Haddox. It was crucial for her to help Jacob with the transition to third grade. She introduced Jacob to his third-grade teacher, Susan Martin, at the end of second grade to help ease the anxiety.
Susan created a Star Wars talking club and even created club cards. As Jacob felt more comfortable with his teachers and classmates, he would take them individually outside the classroom and whisper to them. Once he was able to do this they were in the Star Wars club. This gave Jacob a sense of accomplishment and his peers cheered him on.
Eventually he was able to whisper loud enough to be heard by his teacher and classmates. During that same year, I wanted Jacob to use his voice inside the classroom, but I knew he wasn't ready to speak in front of a live audience. He agreed to video tape himself reading his oral report and show it to the class.
However, it was crucial that his peers not embarrass him by making a big deal about his talking. While the video was playing he looked uncomfortable, but was smiling because it was one step closer to speaking.
According to recent studies, roughly one in 1,000 children has been referred for SM mental health treatment. The true number is possibly much higher because of the families who don't seek treatment. Unfortunately, many children are misdiagnosed with autism, mental retardation, or labeled as being "just shy." The lack of awareness and knowledge of this disorder is profound and is leaving many parents frustrated. More importantly, it leaves many children silent.
When looking for a therapist or a pediatrician, ask about his or her treatment philosophies and goals. If a doctor responds by saying her goal is to make your child speak, keep looking. If a doctor's goal is to determine what is causing the anxiety, to increase your child's self-confidence and to focus on the whole child, you may have found someone who "gets it."
To interact with an SM child, have the child shake his or her head to answer yes or no. Give him or her tools to communicate (pen and paper or whiteboard). Take the focus off the child by talking about something with which he or she is familiar. "Tell me about your pet," for example.
Rehearse asking questions. Write them down so your child can read them to someone if he or she feels comfortable. Ask a younger child what sound a cow makes. The more the child interacts, the more the child believes in himself.
Selective mutism is different from person to person and setting to setting. For example, your child may speak to you at home, but not in a restaurant. Your child may speak to his sibling, but if another child to whom he hasn't spoken enters the room, then he may not be able to speak.
On the last day of third grade, Jacob, Jacqualyn (his twin sister), his brother Jordan and I were the only people in the hallway of his school. I knew Jacob was ready because he told me so. I said "Jacob, do you want to say 'hi' right now?" He smiled and for the first time his voice was heard in the hallway. He has never stopped talking since!
Jill C. Gross is a single mom going to school for graphic design. She lives in Pickerington with her three children: Jacob (9), Jacqualyn (9) and Jordan (7).
The Ideal Classroom Setting For the Selectively Mute Child, by Dr. Elisa Shipon-Blum
My Friend Daniel Does Not Talk, by Sharon Longo
Selective Mutism Resource Manual, by Maggie Johnson and Alison Wintgens
These will depend on where your child is on the comfort level. NEVER FORCE YOUR CHILD TO TALK!
- Telephone game. (Child whispers a word in the ear of a person with whom he or she feels comfortable, and that person whispers the same word to the person next to him or her. Continue down the line and see if the last person says the same word your child originally said. Have your child shake his or her head yes or no to answer if the word is correct. This will encourage social interaction and increase self confidence.
- Have your child write down a list of yes or no questions on an index card. Have the child give the card to a person of his or her choice, and have that person ask the questions. Your child can shake her head, whisper the answer, or say the word -- whichever is most comfortable.
- In a restaurant, have your child show the host or hostess how many people are in your party by using his or her fingers.
- Have your child write down a question to ask a store clerk, such as where to find something in the store. The clerk can read the question off the card to take the focus off the child.
- Video tape your child speaking and ask your child if it is okay to show the tape to one or two friends, family members, or even the classroom. I video taped my son reading his oral report and showed it to his class. This was a very big step!
- Tell your school they need to have a 504 plan in place to ease your child's anxiety! I made sure the classmates Jacob was able to whisper to, and eventually speak to, were always in his class.
- Educate the school about selective mutism so you can all work together. It's imperative to your child's progress and will educate teachers about how to help future students who may not yet have a diagnosis of SM.
- Have your child meet his or her new teacher privately before the current school year is over and again before school starts. Ask that your child help set up the classroom one-on-one with the teacher so he or she can get to know the teacher and feel comfortable in the classroom before it's filled with other children.