Suffering in Silence: Breaking Through Selective Mutism

By Donna Mac LCPC

Selective mutism is an anxiety disorder, and its currently one of the most misunderstood, under-diagnosed, and undertreated mental health conditions. When children with selective mutism feel expected or pressured to speak in social situations, they become terrified. Therefore, their level of anxiety significantly increases, but by remaining silent, their anxiety level slightly decreases, obtaining some relief for themselves. For these children, remaining silent is actually an ineffective coping mechanism, or a maladapted solution to create a sense of safety within themselves. Hence, their mouths freeze, and they are silent. This is temporary relief, but longitudinally, these children suffer in silence. Due to the fact that many children will display normative shy behavior or even socially anxious behavior at times, it can be challenging to discern if the childs behavior falls within normal limits or if the child actually demonstrates clinically significant behavior, signifying a selective mutism diagnosis. This can be confusing for parents, teachers, and even clinicians. This manual is meant to help clarify this distinction and will also assist you in figuring out how to seek help, ask the right questions, and what you can expect from early intervention services, school-based services, and holistic, therapeutic, and psychiatric services.

• Language: English
• Publisher: Balboa Press
• Release date: Sep 29, 2015
• ISBN: 9781504339179

Donna Mac LCPC

Donna Mac graduated from the University of Illinois and is currently a clinical therapist in a therapeutic day school, treating an array of mental health diagnoses. Donna and her husband live in the Chicagoland area with their three daughters and two puggles. Donna is not just some therapist offering therapeutic and academic ideas for selective mutism. Even more important, she is also a mom of twins diagnosed with SM. With Donna’s professional and personal experience combined, her goal is to offer hope and a sense of universality to the SM community, in addition to spreading awareness about this rare social communication anxiety disorder.

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Copyright © 2015 Donna Mac, M.S., LCPC.

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The author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being. In the event you use any of the information in this book for yourself, which is your constitutional right, the author and the publisher assume no responsibility for your actions.

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ISBN: 978-1-5043-3916-2 (sc)

ISBN: 978-1-5043-3918-6 (hc)

ISBN: 978-1-5043-3917-9 (e)

Library of Congress Control Number: 2015913227

Balboa Press rev. date: 09/28/2015

CONTENTS

Dedication

Acknowledgments

Disclaimer

About the Author

Introduction

Chapter 1 What Selective Mutism Feels Like for a Parent; What Selective Mutism Feels Like for a Child

What It Feels Like for a Parent

What It Feels Like for a Child

Other Circumstances

Chapter 2 What Is Selective Mutism? Is It Even a Real Condition?

How Is Selective Mutism Clinically Defined?

Selective Mutism is an Anxiety Disorder

When Is the Onset of SM?

Does SM Ever Go Away?

How Many People Have SM?

Chapter 3 What Causes Anxiety Disorders and Selective Mutism

Personality/Temperament

Environmental Factors

Genetics

Brain Differences

Neurotransmitters

Serotonin Neurotransmitter

Noradrenaline/Norepinephrine Neurotransmitter

Glutamate and Gaba Neurotransmitters

Limbic System (Emotion Center of the Brain)

Amygdala

Hippocampus

Hypothalamus

Conclusions

Chapter 4 Differential Diagnosis & The Issues that Delay an SM Diagnosis

Why SM is Usually Not Diagnosed Until First Grade or Later

Parents or Teachers May Not Know SM Even Exists, So They Are Obviously Unaware of the Symptomology to Watch For

Differential Diagnosis

Normative Shyness

Social Anxiety Disorder (Social Phobia)

Specific Phobia

Separation Anxiety Disorder

Autism Spectrum Disorder

Intellectual Developmental Disorder or a Learning Disability

Oppositional Defiant Disorder

The Child May Not Be A Behavior Concern at Day Care of Preschool, So These Children Slip Through the Cracks and Staff May Not Notice How Little the Child is Actually Using Words

Parents Witnessing Their Child Speak at Home and in Certain Social Situations, but They are Unaware of their Child’s Silence at School

Parents Being Concerned of Labeling Their Child

Conclusions

Chapter 5 Adverse Effects When a Child with Selective Mutism Is Not Identified Early On

Peer Relationships

Family Relationships (Parents, Siblings, Extended Family/Family Friends)

Parents

Siblings

Extended Family/Family Friends

School Functioning (Academic and Social)

Academic

Social

School Refusal

Self-Esteem

Physical Safety

Substance Abuse

Suicide Risk Factors

Chapter 6 Therapeutic Concepts & Techniques to Help Reduce Selective Mutism Symptoms

at Home, School, and in Community Settings

Outside Assistance

Intensive SM Camp Experiences

Cost

Conclusions

Therapeutic Concepts and/or Techniques

Adults Rescuing Child = Negative Reinforcement Cycle

Relationship Enhancement Strategies to Naturally Reduce Anxiety

Parent-Child Interaction Therapy (PCIT)

IQ Helpers/EQ Helpers in Combination with PRIDE

Implementing Child Directed Interaction (CDI) & PRIDE Skills from PCIT

Adult Directed Interaction to Elicit Speech

Forced-Choice Questions and Acknowledge the Gesture using a Behavioral Description Technique I see you…

Speaking Less in the Home

Plan B: ChanPhysical Distance/Change of Location

Plan B: Write Down the Question Technique

Do Not Ask a Question Over a Previous Question

Verbal Praise for Speaking

Stages of Communication Ladder; Selective-Mutism Stages of Social Communication Comfort Scale© in the Social Communication Bridge®

Operant Conditioning

Operant Conditioning: Never Punish a Child with SM for Not Speaking; Use Positive Reinforcement Instead

Operant Conditioning: Shaping Behaviors with Successive Approximations to Move up Ladders and Bridges

Operant Conditioning: Stimulus Fading with Sliding-in and Fading-out

Contamination

Eye Contact

Handover/Takeover™ Exercises

Reproducible Tasks

Building Self-Management Skills

Mindfulness (to Help an Overlearned Physiological Response)

Cognitive Behavioral Therapy (CBT) Techniques

Distraction Techniques

Setting Limits and Disciplining Anxious Children at Home or School

Negative Contractions and the Word No

How to Talk so Kids can Learn

Collaborative Problem Solving Model

Praise for being Quiet in School?

Removing Peer Interaction as Punishment at School?

Greetings/Pleasantries

Connotation

Talk

Won’t

Addressing SM

Addressing Anxiety

Don’t Expect too Much too Quickly

Morning Greet

Buddy School Counseling Sessions

Halloween

Play-Dates, Holiday Parties, & Birthday Parties

Play-Dates

Holiday Parties

Birthday Parties

Photo Opportunities

School & Church Performances

Restaurants

Random People

Extracurricular Activities

Play Therapy

Final Tips: The Do’s and Do not’s for Encouraging Speech

Chapter 7 Other Interpersonal Modes of Therapy

for Young Children with Anxiety Disorders

Animal-Assisted Therapy (AAT)

Music Therapy

Art Therapy

Nature-Based Activities (and Recreation Therapy)

Dance/Movement Therapy (DMT)

Conclusions

Chapter 8 Early Intervention Services (Birth–36 Months)

Department of Human Services

The EI Process

Transition Meeting

Chapter 9 Special-Education Law and School Accommodations for Children with Anxiety and SM

(3–21 years old)

Outside Assistance

Public School Evaluation for Special-Education Services

504 Plan

The Individualized Education Program (IEP)

IEP Eligibilities

Other Health Impairment (OHI)

Emotional Disorder (ED)

Developmental Delay (DD)

Speech or Language Impairment (SLI)

Hearing Impairment

Specific Learning Disability (SLD)

Intellectual Developmental Disorder (Cognitive Disability)

What If the Parent Does Not Want to Accept the Special-Education Eligibility?

Related Services

The At-Risk Population

Tuition-Paying Students and the Blended Model

Private School Distinction

Special Education Placement: Least Restrictive Environment

IEP Goals and Benchmarks

Present Levels of Performance

Example of an IEP Goal for a Student with SM Symptoms

Accommodations

Possible Accommodations and Interventions on an IEP or a 504 for a Student Demonstrating SM and/or Anxiety Symptoms

Modifications

Functional Behavior Assessment/Behavior-Intervention Plan

Medication

Adding Eligibility to a Preexisting IEP or Initiating an IEP after a Child has Already Been in School

Academic Achievement

Functional Performance

Cognitive Functioning

Communication Status

Health

Hearing/Vision

Motor Abilities

Social-Emotional Status

Parents’ and/or the Legal Guardians’ Roles and Rights

Common Core State Standards and Your Child with a Disability, Including Selective Mutism

The Goal of CCSS and Who Uses Them

Parent Volunteer in the Classroom

Final Thoughts

Chapter 10 Medication and Holistic Measures for Anxiety and Selective Mutism

Medication for Selective Mutism

Selective Serotonin Reuptake Inhibitors (SSRI)

Possible Side Effects of SSRIs

Beta-Blockers

Possible Side Effects of Beta Blockers

Prescription Lingo

Locking up Medication

Diet

Chiropractic Care

Craniosacral Therapy (CS)

Acupuncture/Chinese Medicine

Chapter 11 Coping Skills for Parents of Children with Anxiety Disorders

Serenity Statement

The Fridge

Socialize

Spend Quality Time Alone

Music

Talk with Parents of Children with Similar Issues

Self-Talk

Stay in the Here and Now

Solution-Focused Thoughts, Relaxation, and Visualization

Three Positives

Be Who You Want Your Child To Become

Prepare for Bedtime Early in the Evening

Read

Farmer Analogy

Place of Worship, Prayer, and the Bible

Sensory Stimulation

Progressive Relaxation Method

Be Creative

Do Something In Honor of Your Child

Chiropractic Care

Exercise

Eat (Mostly) Right

Laugh

The Dentist

Professional Assistance

Chapter 12 Your Child with Anxiety and SM Might Be Meant to Swim

Works Cited

DEDICATION

Suffering in Silence: Breaking Through Selective Mutism is written in honor of my three little girls, Makenzie, Katie, and Jordyn Hailey. My identical twin daughters, Makenzie and Katie, have selective mutism.

As devastating as it is to watch my girls suffer with this condition, I am blessed that God gave these little girls specifically to me, as it’s been an incredible learning experience. Not as much was known about selective mutism when I was in graduate school learning to become a therapist, so their diagnosis of SM pushed me to read books on it, go to lectures and seminars on it, and learn from the best researchers and clinicians specializing in it, and now I have learned how to best help my own children at home, at school, and in the community.

My twins’ SM diagnosis also helps me to be a better clinician daily; I now not only see the children I treat in therapy as children I treat, but I see them through the eyes of their desperate parents as well. This experience of getting to be a mom of children with mental health concerns has given me new perspective on parenting, my career, and life in general. I never thought I would have been blessed with two children with selective mutism to teach me my lessons in life, but I am glad this is how it worked out, because I wouldn’t change my girls for the world! The goal is not to change them, but rather help them to experience symptom reduction so they can lead more peaceful lives.

ACKNOWLEDGMENTS

I would like to note all of the people I either quote, reference, or acknowledge and thank in this manuscript:

A) Professionals specializing in SM, working in SM treatment centers, and/or conducting SM research:

Steven Kurtz, Ph.D., ABPP, Rachel Busman, Psy.D., Lindsey Bergman, Ph.D., Carmen Lynas, Ph.D., Andrea Brandon, Psy.D., Ashley O’Meara, Ed.D., ABSNP, Elisa Shipon-Blum, D.O., and Aimee Kotrba, Ph.D., LP. Some of these clinicians have similar philosophies on SM treatment, yet some have differing views as well. However, they are all using techniques informed by research and have the same final goal of helping children to feel less anxious and more comfortable verbally communicating with others. There are plenty of other specialists in SM, and I can’t possibly address all of them or all of their treatment techniques. (As a disclaimer, these people do not endorse this book, nor do they agree or disagree with anything I have written in this book. If I quote them on something or reference them, it may be my personal interpretation. If a reader tries something that I quote, reference, or interpret from them, neither they, nor I, are responsible for any negative consequences or outcomes. If readers seek evaluation or treatment from any of these people, they cannot guarantee success or an absence of symptoms, and treatment is at each person’s own risk.)

B) General education teachers, special-education teachers, school counselors, school social workers, speech therapists, occupational therapists, itinerants, school psychologists, clinical psychologists, and specials teachers of art, music, and PE, in different schools or collaborating with schools, working with shy children, and children with generalized anxiety disorder, social anxiety disorder, and/or SM:

Anna Hammond, Psy.D., Marilyn DeStefano, M.A., LCSW, Becky Herman, M.S., MSW, Deb Zielke, MSW, Dawn Klancic, M.A.T., LSW, Erin O’Donnell, M.A., Michelle Frank, B.A., Kelly Grace, M.A., LCSW, Danielle Martin, M.A., Lauren Sanders, M.S., LCPC, Amanda Millard, M.A., Josie Stable, M.A., Kristi Boston, B.A., Sharalee Lewis, M.S., LCPC, Rebecca Lallier, M.A., Stacy Washington, B.A., John Gelnnon, Ph.D., Colleen Gjataj, M.A., Sue Craig, M.A., Jenn Kirberg, M.A., Caron Jones, M.S. OTR/L, Megan Miller, B.A., Laura Ehlert, Psy.D., Ken Sanders, Ph.D., Aimee Brito, M.A., Diana Daller, M.S., LCPC, Marc Ryan, M.S., Robyn Rider, M.A., Jeff Daggar, B.A., Lindsay McKibben, M.A. CCC-SLP, all the staff who work at my therapeutic day school, and all of the Oswego 308 preschool and kindergarten staff who have dedication to working with my own little girls and their SM, especially their general education classroom teachers, LBS 1 special-education resource teachers, speech and language pathologists, social workers, art teachers, music teachers, PE teachers, librarians, cafeteria staff, and administration. (As a disclaimer, these school staff members from a variety of schools do not endorse this book, nor do they agree or disagree with anything I have written in this book. If I quote them on something or reference them, it may be my personal interpretation. If a reader tries something that I quote, reference, or interpret from them, neither these school staff members, nor I, are responsible for any negative consequences or outcomes. If readers happen to have children who attend the same schools these staff members work, these school staff members cannot guarantee success. Sixteen of the thirty people in this section have their names changed to protect confidentiality.)

C) Parents telling stories of their own children with SM:

Kristen Banner, Dr. Michelle Fernandez, Regina Johnson, Kelly Kerlin, Katie McDermott, Sarah Jones, Jen Webber, Kristine Grace, Maggie London, Michelle Kraft, and my husband and biggest supporter, Jason MacDonald. (As a disclaimer, these parents do not endorse this book, nor do they agree or disagree with anything I have written in this book. If I quote them on something or reference them on something and a reader tries it, neither they nor I are responsible for any negative consequences or outcomes. Five of the eleven parents in this section asked that I change their names to protect confidentiality.)

D) My mentors and heroes in education, counseling-psychology, and psychiatry:

Susie Ozsvath, M.A., Keith Ozsvath, M.A., Rick Shaw, Ed.D., Shelley Naheedy, M.S., LCPC, Mani Pavuluri, Ph.D., M.D., Nancy Weijler, Ed.D., Ken Decker, M.A., Kim Redfield, M.A., Ross Kellan, M.A., Mark Duker, M.A., Lila Fagn, M.A., Kristin Kopta, M.A., John Glennon, Ph.D., Gary Kantor, M.A., LCSW., Dianne Surgess, M.A., Diana Majerczyk, M.A., Chris Strahs, M.A., Howard Gardner, Ph.D., Mike Carter, M.A., Lisa Grigsby, M.A., John Flannery, M.S., LPC, Mary Sue Parla, M.A., Sean Fritz, M.A., Anna Hammond, Psy.D., Sheila Eyberg, Ph.D., ABPP, Andrea Walleck, M.S., Marsha Linehan, Ph.D., APBB, Abdullah Sallaj, M.D., Aaron T. Beck, M.D., Albert Ellis, Ph.D., ABPP, Ross Greene, Ph.D., B.F. Skinner, Ph.D., Russell Barkley, Ph.D., Demitri Papolos, M.D., and all of the staff at my therapeutic day school, including special-education teachers, behavioral health counselors, clinical psychotherapists, expressive therapists, nurses, and administration. (As a disclaimer, these professionals working in clinical environments or education do not endorse this book, nor do they agree or disagree with anything I have written in this book. If I quote them on something or reference them on something, it may be my own interpretation, and if a reader tries something I quote or reference, neither they, nor I, are responsible for any negative consequences or outcomes.)

E) People who have supported this book monetarily:

Patrick MacDonald, Cyndi Heurter, Barb Sullivan, Shannon Murphy, Jackie Barbanete, BJ Perez, Kathy Perez, Marilyn DeStefano, Ryan Williams, Kelly Williams, Linn Vanvoerkom, Cindy Rousseau, Rich Rousseau, Anna Webb, Mike Webb, Haylee Kalkman, Sarah Black, Jon Black, Andrea Walleck, Jimmy Walleck, Corena Spiron, Doug Spiron, Renee Selby, Caron Jones, Dan Jones, Matthew Mahan, Tara Wiegand Finke, Monika McGuire, Colleen Gjataj, Kleid Gjataj, Kelly Talaga, Catherine Melka, Vicki McDonald, Shannon Gutierrez, Flo Gutierrez, Sharon White, Tom White, Erica Smigielski, Dave Smigielski, Michelle Kraft, James Kraft, Kathy Morrow, Joan Mueller, and Ted Mueller. (As a disclaimer, these people do not endorse this book, nor do they agree or disagree with anything I have written in this book.)

F) People who have evaluated and/or treated my children: medically, emotionally, academically, spiritually, musically, athletically, and in recent care-taker roles:

Pamela Huang, M.D., Charlene Brown, M.D., Paula Gewarges, D.O., Cyndi Heurter, Jack Flight, LCSW, RDDP, CSOTS, Carmen Lynas, Ph.D., Andrea Brandon, Psy.D., Ashley O’Meara, Ed.D., ABSNP, all of the Adventure Camp staff volunteers at Advanced Therapeutic Solutions, all of the Oswego School District 308 employees, all of the Palmer’s Gymnastics coaches and Phenom Gymnastics coaches, all of the staff at Community Christian Church’s Kids’ City program, and recent care-takers of Amanda Terry, Lisa Gendusa, Kim Redfield, Holly Potter, Kelly Norton, LSW, Teagan Ziegler, and Joan & Ted Mueller. Combined, these people have allowed my girls to live more peaceful lives! (As a disclaimer, these professionals do not endorse this book, nor do they agree or disagree with anything I have written in this book. If I quote them on something or reference them on something, it may be my own interpretation, and if a reader tries something I quote or reference, neither they, nor I, are responsible for any negative consequences or outcomes.)

G) People who have guided me spiritually:

Carter Moss, Shannon Gutierrez, Jen Vergara, LCSW, Andrea Walleck, John Rinehimer, Aimee Brito, Marianne Costales-Roman, LCSW, and Melissa Novacek, LCSW. (As a disclaimer, these people do not endorse this book, nor do they agree or disagree with anything I have written in this book.)

H) Advocates for SM

Becky Herman, M.S., MSW, has written a proposal advocating for SM research and programs, in hopes that UIC will make it into a formal research project. Eve Keepings de Jesus, M.S., needs to be commended for her dedication to SM: She is currently producing a documentary to bring awareness and exposure to SM. Her website is www.unifilmprod.com.

I) Publishing Company

Of course, I have to thank Balboa Press for the opportunity to publish this work! (Balboa Press is not responsible for any negative outcomes of readers trying techniques in this work.)

DISCLAIMER

It should be noted that Donna Mac does not work in private practice, so she does not seek to treat individuals with SM in a clinical setting, nor is she an SM specialist. She works as a licensed clinical psychotherapist in a therapeutic day school with children with an array of anxiety disorders, including SM, and other mental health conditions that come to her therapeutic school based on public school districts’ recommendations.

As a disclaimer, nothing in this book, Suffering in Silence: Breaking Through Selective Mutism, is intended to formulate a diagnosis, rule-out a diagnosis, or offer treatment. The information provided is strictly intended for a parent to look over with the child’s treating clinician, or for school staff members to look over with the child’s parents and treating clinician. Each child’s individual clinician will best decide the approach to take with the child at home, in community settings, and at school. They will consult with the school staff members about the means and limitations to those suggestions within each specific school setting.

Donna Mac, the people she quotes, references, and/or acknowledges and thanks in this work, in addition to Balboa Press, take no responsibility for the consequences and outcomes people experience who read Suffering in Silence: Breaking Through Selective Mutism. It should be noted that the people Donna Mac references may be based on her own interpretation of their knowledge. Some of these clinicians specializing in SM she references have similar philosophies on SM treatment, yet some have differing views as well. However, they are all using techniques informed by research and have the same final goal of helping children to feel less anxious and more comfortable verbally communicating with others. There are many other specialists in SM, and Donna Mac can’t possibly mention all of them and their techniques. If readers seek evaluation and/or treatment for their child with one of the leading specialists in SM mentioned in this book, they cannot guarantee success or an absence of symptoms, and treatment is at each person’s own risk. In addition, specific therapeutic techniques mentioned in this manuscript also cannot guarantee success or an absence of symptoms.

Donna Mac interviewed many clinicians and school staff members from a variety of clinical settings and school settings and grade levels, in addition to parents of children with SM. If readers have children who attend these same clinical programs or schools, those staff members also cannot guarantee success. In certain circumstances, the names of children with SM and their clinicians, parents, school staff members, or schools have been changed to protect confidentiality.

Donna Mac also cannot disclose the therapeutic day school where she works or the town in which it is located, and her last name is a pen name, but her master’s degree, license, years of experience, and specialty of treating suicidal adolescents in both individual therapy and group therapy, in addition to working with teens in therapy suffering from bipolar disorder, psychosis, borderline personality disorder, ADHD, and an array of anxiety disorders are all accurate. In this book, all of the personal stories she shares about her own children and other children have not been altered, and the stories come with raw emotion of sadness, fear, and joy from watching these kids’ struggles as well as their successes. The first names of Donna Mac’s own children do remain the same, as does the school district they are educated in.

ABOUT THE AUTHOR

Donna and her husband, Jason, live in the Chicago-land area with their identical twin five-year-old daughters, three-year-old daughter, and their two Puggles. Donna is not just some teacher or some therapist offering therapeutic and academic ideas for a child with the anxiety disorder of selective mutism; even more important, she is also a mom of twins diagnosed with selective mutism (in addition to ADHD and apraxia of speech, which is a speech delay). With the combination of Donna’s personal and professional experience, her goal is to offer hope and a sense of universality for the SM community, in addition to bringing awareness to this rare communication anxiety disorder of SM.

Donna Mac earned a bachelor’s degree from the University of Illinois at Urbana/Champaign, where she was the section leader of the Marching Illini and Vice President of Mu Phi Epsilon, a professional fraternity. Donna earned her master’s degree in both clinical mental health counseling and school counseling. She holds an LCPC and also earned Type 10 and Type 73 certificates.

Donna has worked professionally with children for 16 years, as a teacher in both regular and special-education settings for 6 years, a summer camp director with typically developing children and children with mental health concerns for 9 years, a Special Olympics Coach for track and swimming for 2 years, and currently as a licensed clinical therapist in a therapeutic day school for 8 years, where she also serves as a Spiritual Ambassador, guiding staff spiritually. At the therapeutic day school, Donna specializes in treating suicidal adolescents in both individual therapy and group therapy, in addition to working with teens in therapy suffering from bipolar disorder, psychosis, borderline personality disorder, ADHD, and an array of anxiety disorders. Donna has been a leader in helping school staff to write IEP goals for children with anxiety and other disorders, as well as giving presentations on effective lesson-planning for group therapies, and also developing and implementing proper protocol for effective case note writing, in-line with risk management policies.

Donna also has another mental health book on the market, also intended for clinicians, teachers, and parents. It’s a 476 page manual titled, Toddlers & ADHD, so most assume it just focuses on the 1-5 year-old population suffering from ADHD, but the 17-chapter book actually covers ADHD across the lifespan, so teachers or parents of children with ADHD of any age can benefit from reading it. The reason it’s titled Toddlers & ADHD is because chapter 6 focuses on the differences between normative toddler behaviors and ADHD toddler behaviors, indicating clinically significant symptoms for that particular age range. Toddlers & ADHD was published by Balboa Press in March of 2014, and for more information, her website for the book is www.toddlersandadhd.com.

Regarding ADHD, Donna has also been published in numerous journals, magazines, and newspapers, and websites, and has been interviewed on four radio shows, including Chicago’s Mix 101.9, and she has been on two TV interviews, including Fox News.

INTRODUCTION

Selective mutism is an anxiety disorder, and currently, it is one of the most misunderstood, under-diagnosed, and undertreated mental health conditions. When children with selective mutism feel expected or pressured to speak in social situations, they become terrified. Therefore, their level of anxiety significantly increases, but by remaining silent, their anxiety level slightly decreases, obtaining some relief for themselves. For these children, remaining silent is actually an ineffective coping mechanism, or a maladapted solution, to create a sense of safety within themselves. Hence, their mouths freeze, and they remain silent. Silence actually provides temporary relief, but longitudinally, these children suffer in silence.

For the last eight years, I have been a licensed clinical therapist working with children in a therapeutic day school who are diagnosed with many anxiety disorders, among many other disorders from many different classifications of mental illness. For six years previous to this, I was a teacher and taught special-education students who had an array of diagnoses, plus I directed a nature-based day camp for nine summers with some campers identified with mental health conditions. But more important, I am a mom of identical twin girls diagnosed with selective mutism. I live the life every day and can empathize with other parents. With the combination of my personal and professional experience, my goal is to offer hope and a sense of universality for the SM community, in addition to bringing awareness to this rare communication anxiety disorder of SM.

Due to the fact that many children will display shy behavior or even socially anxious behavior at times, it can be challenging to discern if the child’s behavior falls within normal limits or if the child actually demonstrates clinically significant behavior, signifying a selective mutism diagnosis. This can be confusing for parents, teachers, and even clinicians. Suffering in Silence; Breaking Through Selective Mutism is meant to help clarify this distinction, although it is not to be used to formulate a diagnosis, rule-out a diagnosis, or provide treatment. This manual will also assist you in figuring out how to seek help, the right questions to ask, and what you can expect from Early Intervention services, school-based services, and holistic, therapeutic, and psychiatric services.

Suffering in Silence will be helpful in aligning therapeutic techniques and coping strategies to the needs of a child with this condition. You will also find information on how to effectively maneuver in public with your child who has a social communication anxiety disorder and ways to respond to others’ negative judgments of your child or your parenting skills.

This is a heartbreaking illness to watch unfold in your child (you will read personal stories of my own tears), so you will learn coping mechanisms for yourself to handle any sadness or stress it causes you. Newfound self-management skills for everyone involved should lessen enough stress for your family to get back to a baseline level of functioning.

This guide is also helpful for teachers and clinicians, giving examples of why these children are sometimes mistaken for shy children, defiant children, intellectually delayed children, or autistic children. I discus differential diagnosis in terms of normative shyness, social anxiety disorder, separation anxiety disorder, autism spectrum disorders, intellectual disabilities, learning disabilities, and oppositional defiant disorder, and I discus the possibilities of different comorbid diagnoses. I share how it came about that SM is now officially considered an anxiety disorder, when it didn’t actually begin within this classification of mental illness. I also discus when it’s recommended to medicate children with SM.

I answer questions as to why a child who does not seem to have SM in certain environments or situations actually has SM. Finally, you will learn research informed therapeutic techniques that can help children with SM to thrive and break out of their silence.

Many of the ideas in this book can also be applied to shy children, socially anxious children, and children with other anxiety disorders, too. So, even if the child does not specifically have SM, this manual can still be helpful! Living the life with two children with SM, in addition to working with children with an array of anxiety disorders, I am able to offer many examples! However, before trying any of these techniques, it’s recommended to check with the child’s treating clinician.

CHAPTER 1

What Selective Mutism Feels Like for a Parent;

What Selective Mutism Feels Like for a Child

My identical twin daughters were diagnosed with selective mutism (SM) at age four. From my own experience, and in speaking with many other parents of children with SM, I gathered some common questions we, as SM parents, hear on a daily basis:

• Is she just extremely shy?

• Does he know how to talk?

• Why isn’t she talking?

• Why is he so defiant?

• Can she understand words?

• How come he is so rude?

• Is she autistic?

• Is he developmentally delayed?

• Is she intellectually delayed?

• He’s scared to talk? What do you mean, scared to talk? What’s there to be scared of?

These questions are all too familiar to parents of children with SM. Most parents hear these types of frustrating questions on a daily basis, and they themselves might actually wonder the same things that strangers or close friends and family ask of them! These parents might even begin to question their own parenting skills, and therefore, feelings of guilt multiply, thinking their child’s mute behavior is somehow their fault!

These parents might actually have a child with a diagnosable and treatable disorder of selective mutism (SM), but some don’t even know it: Selective mutism is not an everyday phrase such as ADHD, depression, or obsessive compulsive disorder, so many people don’t even know this disorder even exists to even begin to ask the doctor about it.

Selective mutism is a widely underdiagnosed mental health condition. This is partly due to the fact that researchers and clinicians are still getting the word out there about what this is, and the other is due to the fact that most children, especially very young children, will display some shyness or even socially anxious behavior in certain settings, so it can be challenging to discern if the child’s behavior falls within normal limits or if the child actually demonstrates the clinically significant symptoms of the social communication anxiety disorder of selective mutism.

These undiagnosed children with SM will struggle with speaking in certain social situations, even if the parents use consistent behavior modification techniques. Untreated, these children may not progress at all, and in fact, they make take steps backward, significantly worsening their condition and deepening their silence and social isolation.

However, once a parent learns strategies specifically for SM, lives can begin to improve! These children can make significant strides if they also receive intensive therapeutic services, proper interventions at school, receive holistic strategies, and/or if they take medication. A combination of these treatment techniques can significantly reduce the child’s level of anxiety and increase speaking behaviors. Increased speaking behaviors can lead to more social opportunities and therefore, less isolation, which will also decrease levels of depression and/or anxiety. Subsequently, when parents witness a happier and less stressed child, it will reduce the parents’ stress levels, which in turn can improve family functioning back to a baseline level. Some relief might be possible in the future!

Once diagnosed with SM, parents try to explain their child’s condition to others, in hopes these people will better understand their child, not judge their child, and not judge their parenting skills. Some responses they hear are the following, not so helpful, statements in response:

• I’m sure she’ll be fine.

• I bet he’ll eventually get over it.

• It’s normal! All kids are shy sometimes.

• Have you tried time-outs? (You will learn why this is the most ineffective strategy in chapter 6.)

Parents of children with SM wish their child was just shy or that this was somewhat normal. However, parents of children with SM must remember that the people responding with their comments are just trying to be helpful by offering normalization, hope, and ideas. If parents of children with SM feel dismissed by these types of responses, they must keep in perspective that these other people really have idea what it would be like to have a child with SM, so it’s hard for them to know what to say: This is why joining a parent support group for SM may be helpful. There’s just something about being surrounded by people with similar thoughts and feelings that can promote feelings of comfort and hope.

What It Feels Like for a Parent

Parent visitor day at school- I woke up feeling excited for a day off of work and a day to see my twins in their respective preschool classrooms! I walked in to Katie’s classroom, waved to Katie and said, "Hi! but she looked at me like a deer in headlights. She’s nervous, I thought to myself. It’s okay, I reassured myself. I will calm her down, I thought. I took her over to her favorite area of the classroom, the dramatic play area, to help her feel comfortable. Nobody else was around, and I tried again. I whispered this time: Hi, Katie." Instead of acknowledging me, she looked like she was scared to death- of me. Her mommy. Her protector. She looked like a child after being with an abusive captor: blank, expressionless, and dead on the inside. I wanted to shake her, let her know it was me, and let her know that she was safe.

A few minutes later, the children sat down for circle time. Katie was seated in the circle next to the teacher’s left side. The teacher started the circle-time question on her other side, so Katie would go last. (This was a great intervention, so Katie could hear the other children and mimic them if her mind went blank from anxiety when her turn came around.) The question was, "What animal do you like best? Every child answered the question. When it was Katie’s turn, she looked at the ground. I couldn’t even tell if she was breathing. Dogs, I thought. You like dogs. Just say it. It’s okay. It’s safe here. You Like Dogs. Please Talk! PLEASE," I pleaded in my head, and my anxiety spiked.

The teacher gave Katie ample wait-time and then offered her a forced-choice question: "Katie, do you like cats or dogs better? This was her chance. She was going to say it. I could feel it….She could do it…Instead, she nodded. I let out my breath that I didn’t even know I was holding. I smiled at Katie for reassurance that she did a good job," and then I excused myself to go to the bathroom- where I sobbed more intensely than I had ever cried before. As a clinician, I knew what I was seeing. I knew it was selective mutism and social anxiety disorder comorbidly together. The teachers had described it to me on the phone, but I didn’t comprehend the full extent until this very moment… and I had never in my life been more scared as I was in that moment. Believe me, I had seen her frozen expression, the mute behaviors in other environments, but this…this was worse than I had ever imagined.

Later that week at home, the twins began expressing to me how they felt- but not with words; I walked into their bedroom, and all over their bedroom walls and ceiling (above the top bunk), they had drawn people- people without mouths. Faces with just eyes. They looked like creepy aliens. There were at least 50 of