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Speechless: Our selective mutism story

My daughter has selective mutism. It took almost six years to give her symptoms a name, but a Google search led me to this diagnosis and I once I read about it, I knew almost instantly that my daughter had it.

Selective mutism is a rare childhood anxiety disorder in which a child is unable to speak in certain situations or to certain people. Selective mutism is not shyness, nor is it an intentional refusal to speak; children with selective mutism experience such distress that they are incapable of speaking.

The Gabriella I know, ready to shout to the world.

The Gabriella I know, ready to shout to the world.

Our Story 

In hindsight, Gabriella has experienced anxiety from birth. The day we drove home from the hospital, she screamed the entire way home. I’ve had two other children now and know that sometimes babies cry in the carseat and that is normal. But Gabriella screamed, painful screams, in her car seat for more than two years, and I now believe that was the first sign of separation anxiety.

She also couldn’t sleep alone, even in a bed right next to me, so we coslept at night and for naps for more than three years. She wouldn’t let anyone hold her as a baby, even family. I can count on one hand the number of people who were able to hold her and that was still only on rare occasions.

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Gabriella at 7 months with her uncle, whom she adores, at her baptism

By 18 months, we knew she had trouble being around other kids. We’d play at the park on the slide and she’d go up and down over and over having so much fun, but the instant another child started climbing up on the slide or getting near her she would have a complete meltdown.

When she turned 2, we enrolled her in a part-time mother’s day out program at a small preschool. The teachers were wonderful, we had friends that attended the school and she was learning a lot. But, she never smiled when I dropped her off or looked excited when I picked her up.

She went to the school for 18 months and I’m not sure she ever smiled, played with friends or spoke to a peer the whole time. I kept saying that I felt like the school was stealing her spirit, which is a big reason I pulled her out and decided to homeschool.

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Gabriella as a baby sitting on the lawn at the library watching kids play.

She excelled at academics and extra-curriculars, but was always very timid and never enthusiastic about activities, unless we were at home. She took swim lessons for six months and week after week she looked terrified and disturbed to be there and barely participated, though when we got home she would tell me all about how much fun she had and she could demonstrate all of the skills she learned perfectly when we were at the pool alone.

When we moved last fall, I decided to enroll Gabriella in another preschool program as a supplement to our homeschool kindergarten. After taking notice of her social shortcomings at swim class and music class, we wanted her to be around more kids and work on building confidence.

We adore the school she is attending and she seems to love it too. She tells me stories of nature hikes and creative adventures and brings home custom artwork made from recycled goods. She cannot wait to go to school every Tuesday and Thursday and loves to talk about it when we’re at home.

After a few weeks at the new school, I started noticing the same behavior that we saw three years ago at her last school. Every morning when I drop her off, her face is blank and unemotional and she moves quietly and cautiously as she enters the classroom. She doesn’t run in and start playing like the other kids, she needs a teacher to help guide her to an activity.

When I pick her up, she has a blank look on her face and her eyes seem almost empty, like there is nothing behind them. She doesn’t rush to tell me about the exciting things they did or show me her artwork like the other kids. I have to physically usher her to gather her belongings so we can leave. We usually have a quiet ride home and then the words and excitement start rushing out as she unleashes every amazing things that happened at school that day and all of the fun that was had.

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Gabriella having lots of fun at a birthday party, but unable to show it with facial expressions

We live in a small town now and often see her classmates around town at the library, at the park, walking in town or at the grocery store. I started getting worried that maybe there was something more than just shyness going on when we would see a classmate out around town Gabriella wouldn’t acknowledge them, even with prompting.

It was after a morning at the library with one of these encounters where a little girl from Gabriella’s class sat next to her saying, “Gabriella! Gabriella! It’s me! Hey, it’s me! Gabriella!” while Gabriella sat motionless and stared straight ahead without flinching completely ignoring her friend that led me to Google and ultimately to discovering selective mutism. divider_polkadot

About Selective Mutism

From Psychology Today:

The onset of selective mutism is usually between the ages of 3 and 6. Most children who develop selective mutism also suffer from social anxiety, or social phobia. Temperamentally, they are timid and cautious in new situations, even as young infants. They may experience separation anxiety.

Many show physical signs, such as awkward body language, stiffness, and lack of facial expressions. Those who are comfortable in a situation may be mute but have more relaxed physical characteristics. A child with selective mutism may speak in some select situations but not in others, or with select people but not with others. For instance, the child may speak normally at home or with close friends, but not at school or other social settings, where there is the expectation or pressure to communicate.

Some children with selective mutism can use nonverbal communication, such as nodding their head or moving their hands, while others may appear frozen. Others may experience so much pressure for their selective mutism that they become mute in all situations, with all people. To be labeled selectively mute, the symptoms must continue for at least a month, not including a child’s first month of school.

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When considering selective mutism, we look at ability to communicate in terms of people, places and activities. To simplify Gabriella’s selective mutism, she is able to speak and act without inhibitions at home with immediate family at all times. She is slow to warm up with extended family and close friends, but generally able to speak and act without inhibitions after the initial warm up period.

At school, she is slow to warm up but is able to speak some and play some, unless my husband and I are present. In public, she is visibly anxious and unable to respond or initiate conversation with people we don’t know or people she knows out of their typical setting (i.e. a friend from school we run into at the library).

To learn more about selective mutism, the Child Mind Institute is a wonderful resource and has a some great slides detailing the disorder.

What next? 

The night I put a name to my daughter’s challenges, I cried. A lot. I beat myself up for missing the warning signs. I wondered how any good mother could go almost six years without realizing their child can’t speak. I pictured her blank stare and empty eyes and imagined the anxiety tormenting her for so long. My husband is the best and wiped my tears and helped put together an action plan for helping her.

The good news is that selective mutism is completely treatable, often with just behavior therapy. After connecting with a few local parents and speaking with a couple of local therapists who we have worked with before, we realized the benefit of receiving care from experts in selective mutism.

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Gabriella has always been loud, full of smiles and a ham in front of the camera…as long as we are at home.

Without any local options for help, we opted to make the trip to New York City for a week of intensive behavioral therapy at a specialized facility. Gabriella was officially diagnosed with selective mutism, and we were able to work with a team of clinicians to jumpstart her journey to healing. We have learned so much, and I no longer feel the despair that I felt the night I first read the words “selective mutism.”

My daughter is a complete joy. She is smart, funny, sassy, caring, rambunctious and lights up our whole home with her stories, laughter and songs. It’s been far too long for us to keep this joy to ourselves and we’re ready for her to light up the world, too.

Overcoming selective mutism isn’t easy and we’re just beginning this journey. We’ll need help from all of our friends and family in building Gabriella’s “brave muscles.” My next post has more on how you can help when you are around us or another child with selective mutism.
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