My daughter was truly
suffering in silence
By Dr Elisa Shipon-Blum
Sophia was the sweetest little 3 year-old who would laugh and sing out loud as she danced around our living room chanting her favorite song for the day. At bedtime Sophia would boss her lil’ twin siblings around telling them to get ready for sleep while she read a book to her older brother. Sophia seemed like the happiest little angel alive!
But, unlike other children who go to school, play with other children, participate in the classroom and laugh with their friends, Sophia stood expressionless staring into space when she entered her classroom filled with children and two teachers.
Sophia did not initiate play with other children nor did she answer the teacher’s questions. She played alone in silence. When her preschool teachers told us this about Sophia, we were so perplexed. We knew she was quiet in social situations,, but we just assumed she was shy.
Days, then months and finally a year went by and still no verbalization within the classroom. We kept waiting and trying different tactics to help our daughter. Within our home and in other ‘comfortable’ situations, Sophia was not only talkative, but she chattered nonstop! We often had to tell her to keep her voice down in order to hear the television or what someone else was saying. But, in school nothing. As the year progressed, Sophia eventually would smile, and respond nonverbally, but she never uttered a peep.
As a medical doctor, I tried to remain objective, as a mother I was petrified and emotional. I spoke with colleagues, child psychologists and other peers within the medical and psychological community. At first, everyone said the same thing. She is shy and will out grow this. Just relax and give her time. My husband, a physician, is also quiet. We figured Sophia just took after him and would soon open up.
But, as the next year came and went, the same scenario occurred over again.
Complete silence within the classroom and most social situations.
Her silence was evident at parties and family gatherings. She would often 'hang' on us or hide behind us...sometimes feeling comfortable after a 'long warm up time'..usually when the party or gathering was just about over...this led to much frustration since when most were ready to leave, Sophie was ready to see what was going on!
Yet in the market or in the mall she would chatter to us without a problem until someone approached us or asked her a question when she would stop, become 'scared' looking and completely ignore the other person.
She would speak to a few close friends, but was mute with most relatives and friends outside of the home. When someone would ask her a question. She would stop speaking, become expressionless, mute and look away. When we talked about her ‘inability to speak,’ Sophia would just tell us that the words just don’t come out and she felt scared. She would often tell us, ‘next week Mommy, I will talk. The words will come when I start camp or I go to gymnastics. The dates that she thought she would start talking would come and go, utter silence and disappointment would be the end result of her attempts.
From reading my childhood psychiatry textbook, I found a small paragraph that seemed to describe my daughter. ‘SELECTIVE MUTISM; when a child REFUSES to speak in social situations, despite the ability to speak quite normally when at home. ‘
Was this my daughter???? Sounded like it, but she did not seem to be REFUSING to speak. It seemed as though she was truly UNABLE to speak.
I used this term with the professionals I took my daughter to but their responses were all different. One professional told us, right in front of our incredibly perceptive child, that she was severely learning disabled and handed us literature. Another professional told us that SM was a variant of autism and to consider sending her to a ‘special school’ for kindergarten where they could address her ‘special needs.’ Another professional told us that Sophia was purposely not speaking in order to prove a point. He suggested we withhold privileges until she speaks. Another professional implied there was ‘a family secret’ that we were not revealing.
Honestly, I was angry. I knew in my heart that these so-called professionals were wrong about my child. To say we were frustrated was an understatement. Were these professionals describing the precocious little girl who would run up to us and tell us how much she loved us or the child who has been reading chapter books by the time she was 3 ½ years old and then describing what she read? Was this the little girl who refused to watch the wizard of oz because the bad witch was mean to Dorothy??
A complete paradox!
One night, while playing dolls with Sophia. I decided to do some role-playing. Using one of her dolls, I asked her why Froggy did not talk in school. Without hesitation, Sophia told the doll that Froggy wanted to talk very badly, but the words would not come out. She then started doing something to Froggy’ s throat. I asked her what she was doing, and she told me she was trying to operate in order to open up Froggy’s voice box to let the words come out.
I knew, then and there, that my daughter was truly suffering in silence. She could not help her silence. She was not refusing to talk nor trying to show us who was boss, she was truly UNABLE To speak. Sophia was trapped in her silence.
This was the moment that changed my life forever.
I was going to do whatever I could to RID THE SILENCE of this not-so understood disorder and find out all I could in order to help my child.
I gave up my then busy medical practice to focus on studying and learning all that I could about this misunderstood disorder called Selective Mutism.
I read day and night. I spent days in the library researching and searching for answers. I went to every ‘anxiety’ conference I could in order to learn about the affects of anxiety on the body. I needed to know.
Since I could not find a professional that could help my child, I took it upon myself to treat my then five-year-old child. I devised my own treatment program consisting of various behavioral tactics to help Sophia at school and at home.
I worked with Sophia all the through the summer, day and night, prior to the start of Kindergarten.
I had taken Sophia to the classroom throughout the summer and had met her teacher, and she even talked in the classroom throughout the summer to us. But now, the first day of Kindergarten was finally here. I walked Sophia to her classroom passing other adults and children in the hall. NO sound yet. My heart was pounding in my chest. I tried so hard to smile and not let Sophia see my own internal anxiety. When I took her into the classroom, her teacher took her hand and I let go. I looked at Sophia, smiled and said, “bye, I will see you later.”
She turned to me, smiled and said in a soft voice, ‘Bye Mommy.’ And walked off with the teacher. I quietly left the room, but inside I felt as though I was truly going to explode! I wanted to scream and shout!!! I wanted to hug and kiss every person I saw and scream out to the world, “SHE SPOKE!!” My heart was pounding even harder. SHE SPOKE, she spoke, “ was all I could think about. I started to cry and I grabbed my cell phone as I walked out of the building. I called my husband and my mother and everyone else that I could think about. SHE DID IT, was all I could manage to say, SOPHIA TALKED.
I knew that my little angel, who had been suffering in silence for so long, was going to be fine. She was going to be ok!!!
Throughout my dealings with my daughter, I had found a gentleman in Florida, Robert Helta, who had a website called the Selective Mutism Group Inc. He was a single father raising a teenager with Selective Mutism.
I sent him a letter describing my situation as a physician and my frustration with the medical, educational and psychological community. I asked if I could supply him with research and literature and I would be willing to help as much as I could.
Bob and I clicked from the minute we started working together. I supplied him with information, and he posted. Within a few short months, the hits on the website started going up and parents, teachers and professionals started contacting us for more information. We looked for some volunteers, and we started a member site to help with basic costs. I did ASK THE DOC in order to answer parent’s questions. One thing led to another and before we knew it our website had over 5000 pages of information and top professionals from around the world were interested in our work.
To date, The Selective Mutism Group Childhood Anxiety Network averages 400,000 website hits per month.
We have top anxiety specialists from around the world on our advisory board. We have wonderful volunteers helping us every day. We are setting up support groups throughout the world and our membership is growing every day! We offer support to parents, teachers and professionals’ searching for ways to help the ‘silent child.’ We have a quarterly newsbook, interactive forums, chats and regular e-updates. We are working with institutions on various research projects in order to prove the truths about our selectively mute children. We hold yearly family retreats to help bring families together to share and learn. We are starting a Kid-To-Kid program where children/teens have a place to ‘go,’ learn, and interact with others, who like them, suffer in silence while the world around them verbalizes with no effort whatsoever.
Selective Mutism is NOT rare, it is more common than autism and affects 7.1/1000 children. Selective Mutism is just less known and less understood. Our work is just beginning. We have so much to do to adequately educate and promote the early diagnosis and effective treatment of children/teens who suffer in silence.
The more that people hear about ‘children who are chatterers at home, but are silent in social situations;’ exist much more than we have thought. Hundreds of e-mails and phone calls every day are proof that Selective Mutism is anything but rare.
Unfortunately, what we are realizing is that not only do so few know of the term, ‘Selective Mutism,’ but when they do, few treating professionals know how to adequately treat our children and teachers often do not know how to help the ‘silent child’ in the classroom.
We have a lot of work to do. We need funding and support in so many ways to help our children. We work nonstop to find ways to help acquire funding to help us with just our basic needs…paying for printing and mailings of material to send to families, phone calls to contact families back who are desperately looking for ways to help their child.. It is endless, but necessary.
To say my work is ‘missionary’ is true, to say the least. This is my purpose in life.