The story of how one daughter's diagnosis, prompted a mother to wage her own battle against Selective Mutism and to help others affected by it.

By Bridgette Steinke

Let’s face it. Nowadays, there are more disorders than we can keep up with, much less stay informed on. However, as parents, particularly expat parents, Selective Mutism (SM) is a condition that we all need to be aware of. Not only have studies shown a higher incidence of children with SM relative to autism, Tourette’s and other more commonly known social disorders, but that percentage increases when children are raised in a bilingual household or foreign country. Yet, despite all this, research on SM remains scarce and few people really know or are equipped to deal with it. I know this because six years ago, my daughter, Storm, was diagnosed with SM.

So what exactly is SM? Simply put, SM is a complex anxiety disorder defined by a child’s inability to speak in certain social settings. I use the word “child” loosely because although it is often diagnosed before the age of 5, some do not realize they have it until they are well into their teens or later. Unlike shyness, a voluntary personality trait, those with SM are powerless in determining when, where and whom they speak to.

Our experience in the years prior to Storm’s diagnosis was similar to that of many other families with a child with SM: filled with worry and misunderstanding. After switching preschools in an effort to find an appropriate environment that would curb Storm’s “shyness,” we eventually heeded the advice of her kindergarten teacher and sought professional guidance from a clinical psychologist.

As with most disorders, early detection and proper treatment can lead to a fast recovery and failure to do so can lead to grim consequences. Over the years, I have met countless others whose children were either misdiagnosed and treated for social disorders that they did not have or were informed that it was simply a phase their children would grow out of over a period of time. SM is an anxiety disorder and needs to be treated as such; improper treatment can only cause a child to revert more into themselves. Fortunately for us, our clinical psychologist detected SM early and, after only six sessions, we saw progress. While previously she would only speak to one of her teachers, Storm soon began saying her first words to adults outside of her "talking" circle.

Things were looking up and we began entertaining the idea of moving to China. It had been on the agenda for a while and her support group remained confident. So, with as much forewarning as one can offer a 5 year-old, we took the flight east.

We carefully sought out a suitable school, all the while remaining open about her sensitive condition. Yet, despite all our precautions, adjustment disorder set in hard and Storm regressed. We watched as our little girl slowly transformed into a shadow of her former self to protect herself from those who did not understand and sadly, those who did not care to. The school simply was not prepared or equipped to deal with an SM child and, when our daughter began to have stomachaches nearly every morning before school, we knew that it was time to pull her out.

Going from pillar to post seeking help, we experienced heart-wrenching disappointment as we saw the already limited number of professionals diminish further due to over-booked schedules. The feeling was compounded as we were confronted with schools that were either too full or uninterested in dealing with an SM child. It seemed a fruitless mission and we were at our wit's end.

Thus, it was a stroke of luck that we found hope both in the form of The Learning Center and Anita Franklin, a dedicated teacher with Special Needs training. Moreover, Storm was subsequently accepted into a new school that demonstrated great potential for progress. Along with these changes, we relocated from the city to the suburbs and adopted a pet cat. With life resembling what we were accustomed to back home, her situation (and ours!) finally began to improve. Since then, we have welcomed a learning support aid who was kind enough to take the initiative to research and equip herself with the tools necessary for our daughter's remedy, and to whom we are eternally grateful.

As a proactive mom, I now allot all my energy into our daughter's well-being. Having attended an SM "power course" in New York and solidified increased support from her present school, we have seen amazing results. Storm now speaks to at least thirty kids and many adults.

I have also founded the Selective Mutism Virtual Support Network, an information group dedicated to spreading the word and familiarizing people with SM. My hope is to endow others with the knowledge and the ability to quickly identify children with SM and help them find adequate support and treatment as soon as possible. From sheer isolation, I found that I only had to scratch beneath the surface to find other families who were equally desperate for solidarity in fighting the same battle. After all, whether concerning SM or any other disorder, hope is found in knowledge and in its sharing.