When She Spoke - Hope's Story of Selective Mutism

Sarah Matacale, BSN, RN

This story is very personal to me and my family. I am certain I will cry my way through writing it, but it is an important story to tell. I believe it will help me heal in some way and help others as it is rare and misunderstood. It is a story of a child who has selective mutism due to emotional trauma and life events. I will refer to the very special little girl in this story as Hope. Hope is what I have always felt for her.

I was walking my daughter into class about 2 months into her kindergarten year in school. I will never forget this day for the rest of my life. This sweet, beautiful little girl scurried up to me and my daughter and grabbed her hand and held on all the way into the classroom. As we were walking, I asked her name and various other small talk questions until my daughter finally said, "Mommy Hope doesn't talk". I did not ask anything else that morning but thought about what my daughter said all day. When we got home from school, I asked my daughter to tell me about this little girl. She told me her name, that she was new to the school, and that she never, ever talks to anyone. Not to teachers, principal, kids, lunch people, her grandmother...anyone. My daughter said that Hope is her very best friend and she can tell what she is wanting to say so she helps her out a lot.

Over the next few months, I would ask about Hope and whether she is talking yet and my daughter always answered "Nope not yet". As I chaperoned field trips, I saw how inseparable these sweet girls were. Hope was full of hugs, hand holding and need for love, but never smiled....always looked troubled and never spoke a word. It broke my heart. Hope was all I could think about.

I started to ask questions of the teachers and school counselors of how I could help. Answers followed like, "we are taking care of her, she's on our radar...etc" but nothing changed. With walking my kids into school every morning, I came to know Hope's ways of communicating a bit better. I also noticed from seeing her dropped off, at school functions, that she was from a broken home. As it turns out she was "cared for" by her father who is in and out of prison, mother who is addicted to drugs and in prison often, grandmother who sees Hope as her son's problem to manage, a maternal great grandmother who is so fragile she can barely care for herself, and a maternal great aunt who fills in the blank and supervises Hope's visits with her mother(who has had parental rights revoked). WOW!

No wonder she doesn't speak. She sleeps in a different bed every night, unsure of her safety, eats whatever she can find, has seen more danger and insecurity in her 6 years of life than I have in my 40 years!

Someone had to help. As a nurse, a mother, a strong Christian and a "get-er-done" kinda lady, I found a way to make that person me. I introduced myself to all of Hope's family as I met them. I made sure that every day when I walked my daughter in, that I stopped to whisper in Hope's ear "Your voice matters, you matter. What you have to say is important and you are important! I care about you".

Hope started to come over for playdates with my daughter. She started to open up, relax, smile, laugh, hug a ton and not want to leave. Eventually, I asked if I could pay for her to attend summer camps with my daughter, swimming lessons, gymnastics. Her father allowed it. She became part of the norm around our house, but still after months, no words.

As her family life continued to decline, she started staying with our family. Dad would leave her with us for days without calling us or checking in. At times I had to take Hope to the doctor, and to the dentist for several cavities, etc. Dad assigned me power of attorney to help me care for her and be able to safely take Hope on our family vacations, meet with school counselors, attend and sign school forms and meetings etc.

She had kept her clothes, lovey bunny, toys etc with us. Had her own space and became a sister to our 3 kids. Our family carried on like she was one of our children. She got hugs, told we love her, tucked into bed at night, bedtime stories, time-outs when necessary, made to take a courtesy bite of the broccoli etc...just like our 3 kids.

Then, one evening, it happened! Five months into Hope's life with us, I was reading to the girls at bedtime, and I heard 2 whispering voices. My daughter's voice and one with a strong southern country accent! I had spent months talking to our kids about not making a big deal out of her first words when she feels comfortable talking. But I have to say I wanted to shout it from the rooftops! (I did not, or course). When Hope went to brush her teeth that evening, I asked my daughter if she was talking. My daughter said, "yeah, she has been talking to me for several days". When she is alone with my daughter at school she speaks to her, but not around anyone else. I'll never forget our daughter saying, "Mama...she is REALLY country sounding!"

A few days later during our daughter's piano practice, I was killing time with Hope and she just started talking!! As plain and natural as if she always had! Of course, I cried like a baby and hugged her. Told her how happy that it made me that she trusted us with her words! From that point on, Hope was a chatterbox in our home and to strangers when we went on vacations, but still not at school. I got her to read aloud to me as her teacher sat on the other side of the open door and listened so she could be tested. Eventually, she would read to me in front of her teacher. She called me Mommy and referred to our children as her brothers and sister.

I wish I could say that Hope is still with our family. Through many court battles that we did not win, she is now staying with her paternal grandmother who has come to love her. She is in a clean house, fed well and cared for. She is still missing some of the childhood necessities that are important to a child with mutism, such as extracurricular activities, birthday parties with friends, sleepovers with her BFFs, but her primary needs are met. Her family does not allow us contact with her as they feel she was too attached to our family to grow with her own family. We grieve every day; some days worse than others. I have truly felt like I lost a child. I cared for her as if she was my own and love her deeply. She is a beautiful, resilient, strong spirit. I get an occasional note from one of Hope's family members (our kids are no longer in the same school). I live for those notes. The best one I received was this Christmas. Hope had a SPEAKING part in her school play in her new school! I cried for days! I am so proud of her for finding her voice in the world!

I thought long and hard after that note came my way. I realized that my family and I made a difference in that one little girl's life that will stay with her forever. She will not forget us. She will remember how a "normal family" functions. She will forever know that her voice matters to the whole world! I have hoped and prayed for this child so much and HOPE is exactly what I have always had for her. I HOPE she stays on a solid path in life, I HOPE that she uses her strong voice to help others, I HOPE that she stays true to herself no matter the circumstances around her, but most of all, I HOPE that we get to see her and have her in our life again someday!

What is selective mutism?

The Selective Mutism Center says: "Selective Mutism is a complex childhood anxiety disorder characterized by a child's inability to speak and communicate effectively in select social settings, such as school. These children are able to speak and communicate in settings where they are comfortable, secure, and relaxed." Selective mutism effects children for various reasons.

What causes Selective mutism?

Some causes of selective mutism are severe social anxiety, sensory processing disorders, hearing issues, speech problems, instability in the child's life and sadly some due to witnessing traumatic events. More than 90% of children that suffer from selective mutism have an underlying social anxiety or phobia. Most children are genetically predisposed to anxiety. The human body has a built-in mechanism, the sympathetic nervous system, that is triggered when a fearful situation is faced. Children with selective mutism have an actual fear of speaking, or even communicating in a non-verbal manner. This nervous system response is the body's way of protecting itself from danger. Mutism is a symptom and the emphasis should be on what is causing the mutism.

What does selective mutism "look" like?

Blank facial expression
Never seem to smile
Awkward body language
Seemingly uncomfortable
Appears unhappy
Avoids eye contact
Withdraws from group

What to do with/ for a mute child?

First and foremost, a child who is mute should not be forced into speaking. Children are often mistreated by adults or peers because of the thought that the "child is just being stubborn".It is important to understand that some children with Selective Mutism may start out with mutism in school and other social settings. Due to negative reinforcement of their mutism, misunderstandings from those around them, and perhaps heightened stress within their environment, they may develop mutism in all settings. These children have progressive mutism and are mute in/out of the home with all people, including parents and siblings. The earlier the child is seen by a physician and a treatment team is established including, parents/caregivers, teachers, speech therapist,and psychiatrist the easier time a child may have transitioning to speaking. The longer the child stays mute, the more difficult social situations become. The following 9 types of treatment may be used to treat this disorder.

Behavioral Therapy using primarily positive reinforcement and desensitization
Play Therapy, Psychotherapy, and other psychological approaches which decrease the stress to talk
Cognitive Behavioral Therapy by specialists trained to redirect fears
Medication which may help decrease anxiety levels using SSRIs
Self-esteem boosters emphasising positive attributes the child has
Frequent socialization encouraging as much socialization as possible without pushing the child
School Involvement which will educate the staff and teachers that the child can truly NOT speak. May need IEP or 504 Plan to accommodate learning needs
Family Involvement and Parental acceptance
Social Communication Anxiety Therapy (SCAT) which is an individual treatment plan set forth for each individual child

When diagnosed and treated as early as possible, the prognosis for mutism is excellent. The child needs to be in a safe home where patience and acceptance of the child is present. Education to those involved with the child's daily life is important to decrease the anxiety and misunderstanding of this disorder. This disorder is very painful for the child, we all need to take part in educating and providing the best care possible to help the child overcome this hurdle. Remember that the child is not being stubborn or disobedient, there are true reasons that the child is not speaking. We can make a world of difference to this one child.

There are several excellent websites to learn more about mutism. If you have an experience you would like to share, I would love to hear it. This disorder is rare, so support of those suffering (parents/caregiver and child) is crucial.

Reference:

Selective Mutism Association |

When She Spoke - Hope's Story of Selective Mutism

What is selective mutism?

What causes Selective mutism?

What does selective mutism "look" like?

What to do with/ for a mute child?

About Sarah Matacale, BSN, RN

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