My Daughter Was Truly Suffering in Silence

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 teachers 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 terrified 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.

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 dont 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 Froggys throat. I asked her what she was doing, and she told me she was trying to operate in order to open up Froggys 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 effects 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 was a single father raising a teenager with Selective Mutism. He was a webdesigner by trade.

We decided to start a nonprofit organization, The Selective Mutism Group Childhood Anxiety Network, to educate and bring awareness to Selective Mutism.

From 1998, for what seemed like day/night and then day/night again, It was nonstop effort to meet the demands of those interested in wanting information on Selective Mutism.

As the years have progressed, the organization exponentially grew. Connections (support and informational distribution program) developed both nationally and internationally and now families, educators, and professionals have resources available to them.

Selective Mutism is NOT rare, it is more common than autism and effects 7.1 out of 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, it is apparant they exist much more than we have thought. The countless e-mails and phone calls that come in 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 accommodate the silent child in the classroom.

To say my work is missionary is true, to say the least. This is my purpose in life. This is my passion. No family or child should ever suffer the way my family and child suffered.

Although support and awareness is key in helping those affected by a crippling anxiety, a deeper understanding of SM is necessary. I have used my medical background to gain a greater perspective on those suffering from Selective Mutism.

Understanding SM from a neurological, physiological and biological perspective are necessary in order to truly understand the child suffering in silence.

I realize the importance of finding out the CAUSES to why a child develops SM, figuring out the factors that are propagating the mutism, and then determining a proper treatment approach to helping the child become confident, social and verbal communicators. These children have so much to offer society. They deserve to be happy, social, confident, and successful. These children will NOT just grow out of their ‘silence’ – they need help. They need their parents’ help, their teacher’s help, and support from all around them. With the right support and guidance, they CAN BEAT THIS!

I have learned that children with SM are not ‘just mute’ they have underlying reasons that lead to SM. These causes have to be determined. Understanding that children with SM are not ‘just mute,’ but often have difficulty engaging socially and communicating nonverbally is CRUCIAL to understand. To expect a child to SPEAK when anxiety is so stifling that he/she cannot even engage with people is a futile and frustrating way to approach children with SM. Children with SM are often ‘stuck’ in their silence. They literally do not know how to ‘just talk.’ They need help in transitioning in ALL settings from nonverbal to verbal communication.

Children with SM are suffering… they are debilitated. Their social-emotional development will become affected if not addressed, and many will begin to have difficulty in school as time goes on. These children are not defiant and then becoming MUTE to prove a point. They are mute and shut down due to their anxiety and therefore develop maladaptive coping skills to combat their anxiety, build up defenses, and try to avoid anxiety-provoking situations. This is misunderstood as defiance and willfullness. Having worked now with over 4000 children, I can confirm that defiance does not cause mutism, but mutism and defensive mechanisms can cause defiance, especially when others around the child are misunderstanding silence and the inability to effectively communicate.

I have founded the Selective Mutism Anxiety Research and Treatment Center and now treat countless children around the world. I have developed treatment approach called Social Communication Anxiety Treatment (S-CAT) that is being researched and proven to be a very successful means of treatment for these children.

I am training professionals to understand SM from a social communication perspective and WHOLE child approach. My associates and I work with children from around the world who suffer in silence. The average distance to our office is 2 1/2 hours with many families traveling from abroad and staying in local hotels to receive help. We do teleconferences and video web consulting.

I travel the country to speak to and educate parents, school personnel and treating professionals via SM Conferences, training workshops, seminars, etc. I work directly with schools to develop appropriate IEP/504 plans to help accommodate the SM child within the classroom setting.

My staff offers time and support to parents who tell me about the pain they feel when their child sits alone, acts out at home from intense frustration or wants to drop out of school because of the profound fear they feel every time they enter school.

Research is KEY to sharing my life’s work with the professional community. The good new is it is happening. From the generosity of a family from Chicago, Illinois, the Selective Mutism Research Institute (SMRI) has been formed and studies are underway!

I am accomplishing my life’s mission!

I have been a featured expert on national television shows such as 20/20, CNN, Inside Edition, Good Morning America as well as other local/national and international TV and Radio broadcasts. In addition, I have been recently featured in TIME Magazine, People Magazine and has interviewed with newspapers such as the New York Times, Chicago Tribune, Boston Globe, San Diego Tribune, Philadelphia Inquirer, and the Palm Beach Post.

I get it. I understand exactly what these parents are feeling and enduring. I understand the feelings of pain and the desperation of wanting so badly to help the child suffering in their silence as the world goes on around her…

My daughter is now 18 years old and graduating high school June ’12.  She happy, confident and assertive. Sophie was co-captain of the varsity tennis team and is a leader in her class.   She has a ton of friends and spends her weekends at friends’ houses and going to parties. She excels academically and is in all honors courses.  Sophie will be attending Franklin and Marshall College (F&M) in the fall ’12. She will be studying neuroscience and plans on going to medical school!

Nothing is holding Sophie back!

She is happy and enjoying her childhood. She is thriving from a social-emotional-academic standpoint. She attends SM Conferences and will answer audience questions. She wants to be a doctor and help others who are less fortunate. This is the dream that every parent wants for her child.

Sophia is a success story, but not everyone is as fortunate as we are. SO much has to be done to alert the public, educate professionals correctly, and teach clinicians, educators, and parents the truths about this potentially devastating childhood anxiety called Selective Mutism, where children are truly suffering in silence.

Although my daughter was the vehicle into the world of Selective Mutism, I treasure the knowledge I have acquired and can now share with others. I dream of the day when everyone understands that Selective Mutism is not about ‘not speaking,’ but is a Social Communication Anxiety Disorder that renders a child unable to comfortably socialize and are ‘communicatively stifled.’ I dream of the day when parents, teachers and treatment professionals can recognize and address the child’s social and communication difficulties when YOUNG, to enable these precious children to live their lives as happy and confident social communicators.

Written from my heart,
Sophias mother, Dr. Elisa Shipon-Blum