The night before I sent my 5 year old to his first day of kindergarten, I sobbed. I cried because I was afraid. We have had a tumultuous year of change and growth and sometimes, life feels uncertain and scary. As I walked in to kiss him goodnight, he had his shirt picked out for the next day: “Brave the day. See the world.” I wiped my tears, knowing that he was ready and I was ready. For the past year, he has taught me far more about bravery than I could ever teach him.
Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, “I will try again tomorrow.”
I have a confession. Until this past year, I had assumed that courage meant the lack of fear. I was a firm believer that being brave meant extinguishing fear. That is, until my little boy was diagnosed with Selective Mutism (SM for short). It was then that I truly learned that bravery isn’t conquering fear, but instead, discovering the the strength to move forward despite feeling terrified. October is Selective Mutism awareness month. Little did I know last October, that I would be thrown in the ring, fighting this battle alongside my little boy, who feels terrified every single day of something most of us brush off with ease: speaking.
What it is: Selective Mutism
Selective mutism is classified as an anxiety disorder. Don’t be fooled by the “selective” in SM. It sounds like my son has a choice in speaking. He doesn’t. There are certain times, places, activities, or people with whom he goes completely mute. For the most part, at home, he speaks like any typically developing child. However, last year, his symptoms became progressive and he was diminished to a whisper in our home. Nothing we did: speech therapy, play therapy (with a local therapist), or preschool helped. In fact, it made it worse. The discomfort of the expectation to speak is so overwhelming that children with SM are physically UNABLE to speak in those certain situations. It’s considered a spectrum disorder, so much like autism, no two kids are exactly alike. It can vary from mild to very severe, depending on the child.
SM affects about 1% of the population, with girls being twice as likely as boys to present symptoms. The average diagnosis age is between 3-5 and the average age of treatment isn’t until ages 6-8! That’s right, children are likely to not receive treatment for several years with this diagnosis. Very few people have the knowledge and background to diagnose this disorder and even fewer actually treat it effectively.
“The thing about being brave is it doesn’t come with the absence of fear and hurt. Bravery is the ability to look fear and hurt in the face and say
move aside, you are in the way!“
What it isn’t: Selective Mutism Myths
Trauma: Nope, it’s not caused by trauma-that would be called traumatic mutism. Selective Mutism is a mix of genetics and environment (by environment, think globally: as in when you ask my child how they are; it’s not just parenting, it’s EVERYTHING around him), nature vs. nurture if you will.
Bad Parenting: Teachers, friends, and doctors actually tried to tell us that our child just needed to be parented better. Again, huge myth. Please don’t assume that we tablet parent our children or allow Netflix nanny. This is a clinically diagnosed anxiety disorder.
Autism: Although many traits overlap and some experts concur that autism and SM can co-occur, autism is not the same as SM. Autism is considered a pervasive developmental disorder and SM is considered an anxiety disorder.
Defiance or opposition: While research studies conclude that kids who have SM are likely to have challenging behaviors, their inability to speak is not caused by willfulness, stubbornness or the desire to be oppositional. These kids generally express the desire to speak, but are unable to. My son would say things like, “My voice went down to my toes.” Or “There’s a light switch that turned off in my throat and I can’t get it back on.” Or simply, “It’s too scary to talk to grown-ups. My voice just stops working.”
They will outgrow it: This is one of the biggest myths of SM. While some children develop the skills to cope with their anxiety, many children actually “grow into,” their SM. The time spent by parents and professionals waiting for children to “outgrow,” Selective Mutism actually enables the child’s silence to become further ingrained, creating a situation that is incredibly difficult to treat the older the child gets.
Mental Health medical access is abundant: Let me just say, as a mom who has advocated like the craziest Mama Bear on the planet, this statement could not be more false. It took us 2 plus years to even get anyone willing to see our child and diagnose him. “Early intervention is key”, they said, “But we can’t really help kids as young as your son.” Even then, we had to walk in with our own diagnosis and demand that we have an evaluation elsewhere! Beyond that, getting services in school for a relatively rare mental health diagnosis was a long, drawn out process because our son didn’t fit nicely into the boxes that needed to be checked. We naively walked in, thinking “there are lots of resources available,” while we are still struggling, over a year later (after the firm diagnosis), to find providers who are skilled enough to help us and battle the insurance company for necessary services.
What you can do for a family of a child who has Selective Mutism:
The most helpful thing that people did for us was just to support us and our son. There is something to be said about being encouraged in your journey, no matter what your journey is. We were fortunate enough to find a group of wonderful friends who both supported us in parenting our child and learned the techniques of interacting with our child. They didn’t expect our son to speak. They didn’t challenge themselves as the people who get him to speak. They loved him. They loved us. They cried with us in the moments that we felt helpless, laughed with us when that was all we could do, and enveloped us with a village mentality. They learned, fought, asked questions, and in the end embraced all of us right where we were at.
Those people also got to celebrate with us. They sent us photos of our son talking with their children. They sent us texts celebrating the moment that they got to hear his sweet, sweet voice. They ate cupcakes in our dining room as we threw a special party commemorating the bravery our child had fought so hard to achieve.
Our story is much more detailed and complicated than I can write in one post. We are thankful to have found the team of providers and community that we have had. But it’s been hard! Selective Mutism has been a battle of silence. It’s a story of heartache and triumph, of pain and perseverance, of fighting and losing and winning and losing and hoping for another win tomorrow. Battling an anxiety disorder is just that: understanding that you will come back tomorrow and hoping, against all hope, praying that you will win, but knowing that the roar is there, even when it sounds like a whisper.