Selective Mutism: How to Beat Crisis, Screaming, Fear.

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Where do I start to share the story of selective mutism with you and how it has framed the past three years of our lives?

Since my daughter was diagnosed with selective mutism at the age of 4, I’ve been a curious fighter, a mom-protector with the purpose to share my struggles and the knowledge about selective mutism with other families.

There is power in knowing your enemy, or this is at least how I felt about selective mutism when the search for answers started in 2018.

My initial enthusiasm to know-it-all would lead me to various selective mutism Facebook groups where I hoped to find the “remedy” and, maybe, help my child to “grow out of it.”

Read this article to learn about causes, symptoms, treatment and school interventions for selective mutism.

The enthusiasm gradually wore out, and the selective mutism Facebook groups I was part of became just another reminder of how painful and long it has been to be a parent of a child with selective mutism. I dropped all the groups eventually because they reminded me of others’ pain whose stories were more heartbreaking.

One can find a clear and straightforward selective mutism definition on www.selectivemutismcenter.org. Selective mutism is defined as “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.” 

The scariest and most excruciating characteristic that selective mutism bears for parents is that you tend to take the blame for everything that happens to your child. One’s mind would continuously play the same tune until one believes in it, “I could have been a better mother, a happier mother to help my child. I could have spent more time with my child or gone on more trips…” 

And the self-blaming would get worse at times, and eventually, you start seeing how much worse and lonely it has become to fight selective mutism.  

For about three years, I was convinced I was the culprit of my daughter’s condition. In some sessions with my child’s selective mutism therapist, I would ask whether I might have triggered my child’s anxiety. My unhappiness with work, the overwhelm, and my inability to balance productively might have caused my child to be unhappy. 

I would crawl into the deepest and the darkest cave in my mind on days when selective mutism showed its ugliest side, and my daughter would suddenly wake up irritated, hitting the wall, and screaming “Stop!” when I smile at my husband. I would weep in the bathroom for the rest of the day, trying to pick my own brain and find where I failed as a mother.

“I just want her to be happy,” I confessed to the psychiatrist on our first day of evaluation before the medication for anxiety was prescribed. At this point, the selective mutism battle was not just about confronting selective mutism condition in a school, stores, playground; it was about happiness, family’s happiness… 

My daughter stopped going to the playground, turned more and more “depressive” and solemn, and would find every single opportunity to say that she was not loved or cared for. I would, of course, feel guilty, apologize and give her thousands of hugs.

Still, at the end of the day, the deep insatiable, sole-eating hole of my child’s unhappiness would absorb us all, and we all would feel shattered, guilty, shaken, and silent because we all failed at something.

I would dread some of the days, especially weekends, and would not want to wake up because waking up would be due to screaming most of the time. The reasons were varied, random, silly but serious to my daughter: her brother making noise, my husband and I sleeping in our bed, my husband looking at me, me wearing my hair in a bun.

Anything was a trigger. My six-year-old daughter would tell me I smelled or my clothes did not look good, or my face had pimples and spots. At times I tried to adjust, make it happen, avoid the sharp mornings to make sure we can make it through the day. 

But at some point, it would burst, explode anyway. My child would scream, and I would cry even louder because she would remind me how unhappy she was, and I would retake the blame.

One day during a trip to New York – a place that used to be a destination for fun and family activities, where she would dance in the park, pop bubbles, and enjoys the ice cream truck treat – it all just became too severe and scary. 

On that day, she got out of the car, walked twenty feet, and froze. Then she sat down, covered her head with her arms, and refused to move, saying over and over, “I’m shy, I’m shy, I’m shy.” 

I spent 20 minutes next to her, bribing with ice cream and promising a fun day. It did not work that time. That day, I realized how bad it became and how tangible the selective mutism had turned to be. We packed up and went back home.

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What does selective mutism look like?

• Smells, textures, noise, light, physical touch would be uncomfortable.
• Parents showing affection would cause creaming and hitting. It is painful for a child, but it can also be debilitating for parents’ relationships.
• We would not hold hands or sit next to each other.
• Speaking would be using a whisper, and smiling would cause a tantrum.
• Her being so specific about the routines, demanding and controlling would push me into a sickening mood, and I would start digging, again and again, to find where I failed.

One day my child’s therapist told me, “You should not think selective mutism is because of you or anything in your child’s behavior is because of you. You are not the cause of her selective mutism. You are just trying hard to be a good mother. It’s not you. It’s selective mutism.” 

I remember it was elating to hear it finally after three years of constant guilt and fear. And now that I finally allowed myself to accept it, I’ve felt in control of what I can do to make this journey less agonizing.

What Can Parents Do When If a Child Shows Symptoms of Selective Mutism?

What am I going to do now?!” – I was in complete panic mode when my daughter’s pre-K teacher broke the news of Milania’s not talking to anyone since the beginning of the school year.

• “That’s just some weird comment.
• It’s just she is adjusting to the school environment.
• Maybe, she doesn’t like school.
• I have other problems to think about. What the heck is Selective Mutism?”

I did not want to have some new puzzles to solve or new problems to have at that point in my life. All I wanted is to have Milania enjoying her childhood and being a regular kid.

My life-long motto, “Knowledge is power,” really started to bring results and to shift the unpleasant and unknown reality of dealing with selective mutism to something we can handle.

The biggest questions for many families with a selective mutism kid are: “Where do I start? What’s now? How big is it?” 

It can be paralyzing, although it does not have to be.

As a parent, I always tend to minimize the family’s threat even if it’s mysterious and seemingly not affecting anyone physically as selective mutism. Nevertheless, the rabbit hole your mind might attempt to throw you into can be debilitating. And here is when the “knowledge is power” mentality can get you out and put you on the right way.

The list of action steps comes in handy. Knowing what to do, being serious and intentional about all the changes you plan in your life with selective mutism is crucial to make a shift from fear to “we-will-handle-it-together” mentality.

I’m sharing a list of steps I created going backward in time to record what had been done in our family to address our kid’s selective mutism condition.

1. Get a Crash Course on Selective Mutism As Parent.

Learning about selective mutism is essential for you to understand your child, how this condition affects children, and what needs to be done to provide emotional and academic development. This is the list of resources that were very helpful to me.

1.    What is Selective Mutism? – a concise article that can be explored on selectivemutism.org.

2. Selective Mutism Parent / Teacher handout provided by Speak Up Speech.

3. The articles from the Child Mind Institute organization, answering questions about:  

2. Look For a Selective Mutism Specialist in Your Area.

That can be pretty tricky. No surprise here!

I assume selective mutism being so rare, it does not have a well-established field of professionals, especially those who work within your Health care plan. That can be a problem.

The go-to resource to find a selective mutism professional can be found at selectivemutism.org.

Contact the treating professional in your area, enquire if they work with the insurance plan.

Unfortunately, no many of them do. The therapist we work with is not in our health care plan network. However, my choice of the therapist was based on some other considerations, like an excellent educational background and experience in selective mutism.

While your priority can be financial converge of the treatment, my recommendation is the following: contact your health care provider DIRECTLY to find a selective mutism professional in your network and ask for further options in case there are no professionals within your network. 

3. Start Selective Mutism Treatment.

According to selective mutism professional resources, early detection and treatment are essential to get progress in overcoming selective mutism. Progress might be slow, but as long as progress is happening, many therapy techniques need to be considered before a certain one will start positively affecting a child.

The Selective Mutism Association (you can Google it) provides a general overview of selective mutism treatment; however, as you work with your selective mutism therapist, you will get more details about selective mutism therapy activities and speak about how this treatment can be infused in a school setting.

4. Take Care of Into-School Transition For a Child With Selective Mutism.

Transitioning to school is the most significant set of issues selective mutism child’s parents need to address. It has to be discussed with your child’s treating therapist as they can provide valuable information about the steps you are to take as a parent in contacting the school.

In our situation, I contacted the head of the Special Education department, the principal, the teacher of my child and provided them with all the information I had in hand. It was an official diagnosis from the therapist and a letter from the pediatrician. As soon as the school is aware of selective mutism, its administration and the child’s study team create a plan to address the selective mutism situation.

Go to section #4 in this “Selective Mutism Parents Guide“ for the convenient clickable links to find resources for school.

5. Keep on Educating Yourself, Teachers, Administrators About Selective Mutism.

Continue the conversation with your chosen selective mutism therapist about the condition, treatment, causes, how it affects a child, a family. Ask questions and look for answers.

There is a Facebook group you might want to check out. It might work for you. Also, the #selectivemutism hashtag will help you connect to people on Instagram and start communication.

For me, dealing with selective mutism in my child has created a great deal of anxiety and worry. But what makes a dramatic change is educating oneself not only on the topic of selective mutism but also on child’s psychology: aggression in kids, reasons for child’s disobedience and laziness, how to cope with upbringing children without burning out.

6. Stay Away from Negative Information That Does Not Come From Reliable Sources.

Apart from many valuable, trusted resources, there is a plethora of information out there that might not be helpful but can cause more unnecessary worry and overwhelm.

Is selective mutism caused by trauma, abuse, hostile atmosphere at home?! What?!

Do not succumb to the pressure of unwanted “what if’s” and “how’s it possible” ideas. Consult only the resources you trust, and don’t overthink.

7. Get Your Family Members On Board About Selective Mutism.

Getting all the family members on board with selective mutism and its treatment is essential. It is necessary because the child’s behavior needs to be understood. There should be no confusion about others’ behaviors that can create a positive environment and support the child in handling selective mutism.

You might want to start with “frequently asked questions for parents” that you can find by exploring the Selective Mutism Association website.

8. Don’t Ever Think of Giving Up.

Treating selective mutism is hard.

Selective mutism affects not only the child but the whole family. Depending on the severity of the child’s condition, various behaviors and complications are possible.

No matter what, don’t stop fighting for your child.

Don’t ever think selective mutism is permanent, and you can do nothing.

It’s up to you to start this battle for your child.

Most importantly, don’t demonize selective mutism, don’t hate it.

Whatever you hate happens to become more abundant in your life. Instead, acknowledge that selective mutism is part of the current life period.

Don’t stop enjoying regular activities with your family.

Don’t stop believing that this, too, shall pass one day.

Get all this information in one place – “Selective Mutism Parents Guide.“

What Helped My Selective Mutism Child Verbalize For the First Time During Therapy.

“Be ready not to have your child speaking in public too soon. It might not happen in a few months or even the first couple of years,” – if you work with a selective mutism specialist, you probably heard that in one way or another. It proved to be true in our family.

When we first started working with a selective mutism therapist, we did not intend to get our daughter speaking right away but rather to find out more about the condition and equip ourselves with all the tools necessary to know what direction we need to go. Learning was happening fast.

Consistency matters when coping with a big challenge because consistency allows tackling the invisible “enemy” piece by piece, one step at a time. 

As I remember it now, my daughter’s treatment of selective mutism went through phases:

1.    getting to know the therapist and making friends,

2.    developing a close friendly relationship through games to lower anxiety level,

3.    introducing yes / no questions that were expected to be answered non-verbally,

4.    presenting what/who/how/where questions and prompting to respond through a whisper to a parent’s ear,

5.    whisper getting louder and louder.

The physical expression of anxiety also went through some stages:

1. overwhelmed and hiding behind mom in the therapist office,

2.    engaging in a silent game,

3.    starting to giggle and laugh awkwardly, covering mouth,

4.    making sound noises during a game and being silly,

5.    whispering to mom’s ear,

6.    whispering loud and feeling comfortable in the presence of the therapist.

All this took a couple of months, on average, two sessions per month. 

And then, there was a dramatic change, an improvement that happened thanks to HAND PUPPETS.

During one of the sessions, Karen (my daughter’s therapist) took out hand puppets of animals and offered Milania to play with them. We all chose our animal roles – and BOOM! – Milania burst into talking with animals as if all this time she was waiting for the opportunity to do so! My jaw dropped, and I looked at the therapist. Karen continued the game without expressing any emotion. And that was correct. 

Remember, emphasizing that the child speaks can only trigger the “snail-in-the-shell” effect and push the child into an abrupt stop. So we all continued playing, and Milania spoke as if nothing ever happened. That was our most effective session that finally brought some results. It took us 5-6 months to come to it, but it happened, and it was worth waiting for. 

With selective mutism, the treatment always happens in stages. If certain milestones like whispering and talking are reached, they can be transferred to any other setting. 

For example, if a child starts speaking to one friend at home, it might be transferred to a school setting (if they are classmates), and this friend becomes a buddy. This trusted friend can be a critical social worker at school with whom a child spends some time.

Situations differ. But the point is to plan those stages and work towards them. It might take a couple of months or even longer than that, and that’s the most challenging part about selective mutism – treatment is gradual, results are gradual, and it all requires consistency and patience. 

Milania still doesn’t speak in school, not even to her friends, although she started whispering to one of her best friends in the Boys & Girls Club. Whispering doesn’t happen consistently, but we are happy the ice finally started to crack.

We know that there is a long way ahead of us. It is often frustrating in many ways. Some days are better than others.

But in the end, the only way to keep going is to do it consistently, not giving up and proceeding no matter what. 

Doing it for your child is worth it. 

What I Have Learned From my Selective Mutism Child.

“You know this cute little princess?” – our pediatrician smiled at one of the nurses – “She doesn’t talk to anyone but mom and dad. But I hope she will make up her mind one day, right Milania?”

Well, that’s not exactly the truth. My daughter talks to her three brothers, charts with her big brother’s girlfriend, gets into a talking marathon with her 9-grader cousin whom she usually sees once a year. They are her choices today, selected confidants that are trusted to hear her voice.

Since Milania started working with a selective mutism specialist, a lot of things changed and happened: my new reactions to her nervousness and clinginess, her own labeling as “Mommy, I’m so shyyyyy,” continuous pet talks about “just take your time, sweetie,” the way my own family tries to understand selective mutism.

It’s been hard mostly at the start when selective mutism was a mystery, and the only question I had was, “So, what does that mean?” As we grew to handle selective mutism in our family, things became more relaxed, and most importantly, much happier.

In fact, a lot of things I do and learn every day are inspired by my daughter, her crazy giggles, her contagious energy at home. What happens in the outside world is a matter of time.

Until you face it too, you are rarely occupied with other people’s problems. Non-existent for me before, the selective mutism community is huge on Facebook. Each day, moms and dads post struggles and wins, challenges and joy. Some of them share tips, others frustrations. It was hard for me to b part of that community. I opted out many times and went back again.

In our everyday life, selective mutism is also handled strategically. Yes, indeed, selective mutism is not just “not talking to others”, it’s a pattern of behavior, habits, reactions, emotions. For the past year, I’ve learned to tackle many of the ups and downs of my daughter, and so let me share some of them with you.

• The anxiety to talk to others, although may absolutely not seem to be, is legitimate. The anxiety often hides at the deeper level, but sometimes it reveals through clinginess, hiding behind the parent, covering the mouth with hands, hiding the face.

• Selective mutism is not always adequately understood by a child. My daughter attempts to give many descriptions of what she is experiencing: shyness, feeling uncomfortable, fear to be different, fear to show her voice. A lot of the times it’s also bewildering “you know, mommy, that I don’t talk at school. I talk only at home.”

• Emotions can complicate a child’s condition. Imagine not being able to talk most of the day, and then not understood or not given an opportunity to talk at home? This can escalate into a storm. I’ve learned to recognize patterns of behavior my daughter shows. I can tell when she is down, when she wants to share, when her anxiety is low and when it’s not handled well.  

• Verbalizing a child’s feelings is important. I’ve taught my daughter not to use the word “shy”. Instead, she is learning to say how uncomfortable she might feel. I also describe her feelings, teach her to accept what she feels and that’s there is nothing wrong with it. “You will talk when you feel ready or comfortable” – I say to Milania and she seems to like this “no pressure” condition.

• Ice melts slowly. The idea of Milania not talking in school at times freaks me out. I fall into a panic mode and feel helpless. And yet, therapy, constant talks, acknowledgment of her anxiety, and just growing up bring changes. Milani talks to her therapist and her aunt who previously were on the list of “not to talk to” people.

• Selective mutism children like patterns and order. My child like to be occupied, like the predictability of events. She functions perfectly in a structured academic environment with activities, games, relaxation time, learning time.

Every day brings new experiences. As Milania is growing up, we learn something more about Selective Mutism. The biggest struggle remains to be school.

Although the teachers and the administration of the school might be very open to learning about selective mutism, it is still a mystery in the educational field. Schools don’t have a specialist to assist selective mutism children. Most teachers are not trained and do not really know what to do with a selective mutism child in a classroom.

Special Education services often misinterpret or mislabel the selective mutism condition, and if parents are not actively involved in figuring out the situation, many children are left to be “shy” and, as a consequence, struggle academically, socially, and emotionally.

Reading about selective mutism gives general pointers about how to tackle it. With each child’s individuality and emotional profile, selective mutism becomes a very unique journey. However, some tips and tricks do help in making a child progress and grow beyond anxiety.

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STAY CONNECTED:

• I’m a mom to Milania and Luka. I’m also an educator, and I create resources for classroom learning.
• To explore the social-emotional learning/mindfulness activities, worksheets, and other resources for a classroom, stop by the Mindful Message Shop.
• Hang out with me on my Instagram @alwaysthingstodo.

Don’t forget to stay in touch!

Talk to you later!

Yanina.