Selective Mutism STORIES

This is a collaboration of stories written by those with direct selective mutism involvement. Some cast a positive light through their journey with the disorder while others are still struggling in the darkness. Each gives a unique perspective that only a person dealing with SM can provide.

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Here is the sheet we gave to high school teachers:

Anna Davis – Selective Mutism due to Social Anxiety Disorder

Thing we hear from friends, family & teachers:

  • “Anna doesn’t look scared” – but she is, she is terrified.  The more ‘blank’ the expression she has the more terrified she is.  Think of someone who is scared of water – when not around water they are fine.  Anna has to be ‘social’ all day and it is exhausting to her.
  • “If I try hard enough she will talk to me” – Anna cried at band camp this year because a young man thought he could convince her to speak.  She is scared of any attention – good or bad.  Calling her out for doing something good makes her equally terrified as if she were yelled at. 
  • “Just make her talk” – We tried this, four years ago.  Since 7th grade she has not said a word at school.  But she has made progress; she has spoken to us in the parking lot at school when no one is around! There is no ‘making’ someone do something they are frightened of, there is just making them feel comfortable and secure enough to do it on their own.
  • “Just give her medication” – The side effects of some of the anxiety medication are depression and suicidal thoughts.  Would you give that to your child who seems fairly happy most of the time?  We are very conscious of our eating, sleeping and exercise habits and that plays a large part.
  • “Why does she talk at home?” – She is very comfortable at home, it is her safe place.  She will speak to her friends at our house.  If any of you would like to visit us at home you are very welcome.  She is also taking a Chinese language course online.  She is able to speak into a microphone and send her recorded language to a teacher.  Could this be an option for you?
  • “Get her Therapy” – We do, she sees one of the top behavioral therapists in Dayton and does group sessions with other girls that have similar problems.  Anxiety is slow to fix and helping her to have positive experiences in High school and in life are our top priority.
  • “Home-school her” – So fixing a fear of water is to never get near water?  Not being at school will not help her fears of being social.

Things that help:

  •  Talk to Anna like any other student and watch her for non-verbal cues.  Give her time to speak, but do not get upset if she does not. 
  • Try to talk to Anna with no-one around (hallway, empty classroom).  She is more likely to talk if others are not around. 
  • Do not overly praise or overly criticize her.  The hope is Anna will talk when she is comfortable and when given attention she is not comfortable. 
  • Do not ignore her!  She doesn’t want attention, but she needs it.
  • A regular schedule – She will do a great job if she knows what to expect and what is expected.  If things are changed last minute or not communicated clearly she will not do well at all.
  • Be flexible – sometimes you think she understands because she is looking at you and/or nods yes.  She often comes home and says she doesn’t understand and she cannot force herself to ask.  Please be willing to answer her questions on e-mail and perhaps accept her work late because of it. 
  • Anna’s friends know her pretty well and will stick up for her.  She communicates to them mostly through texting and e-mail.  She may be using her phone to communicate, but don’t be afraid to ask her to put it away if it is distracting to the class or to you.
  • Be aware of her test results.  Are her test results correlating to her work or homework grades? One of our worries is that she is suffering from Test anxiety as well as social anxiety.  Please communicate to us if you think this is the case.  

Anna loves art, video games, drawing comics, writing stories (fan fiction in particular), Japanese and Chinese culture, playing in band and playing piano.  She is great with little kids and also loves animals, especially cats.  She is extremely creative and has a great sense of humor.

We know we are asking a LOT from you, but we know Anna is worth it and we will always be her number one advocates.    It is our hope that she will overcome her anxiety issues and be able to share herself with everyone.  As parents and community members we are willing to be advocates for any students with anxiety disorders.  If you know of others that would benefit from a support group, we would be willing to help!

– Jessi Davis

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-Fatima

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Melisa’s SM Journey

So where does it all begin with a selectively mute child? When I think back on the circumstances of her birth I’m reminded of the not-so-predictable nature of what it might take to raise a child. We have to consider what takes place in the womb during the pre-natal stage. For example, did the child get sufficient nourishment, what was occurring in the reproductive environment, in her mother’s psyche, and was she positioned correctly and have a normal enough delivery? Did all this contribute toward establishment of a proper rooting reflex? If not, as we later came to realize when we undertook many sessions with the Brain Balance Center, the child later on has a tendency to hold on to things longer than necessary, hence learned fears or social anxieties, and unhealthy attachment issues.

Where it All Began

When did we first notice something was different about Elif Melisa? Between 2 and 3 we noticed that in certain social situations, she either refused to talk or didn’t feel comfortable talking, or just using her voice, even when prompted with a question. My wife began wondering about this. We had seen her in family situations and with friends or in social settings, like our spiritual fellowship. It was a place of loving people, but a crowd or place that was kind of foreign to her just provoked her enough to express outright disdain for being in such a place. So as parents, we typically reacted to this by promptly removing her from her perceived adverse environment. She couldn’t verbalize what it was, just that she wasn’t comfortable remaining there. At our Fellowship, we noticed she didn’t like being in the meeting room, but up in an empty room on the second floor, where she could explore things and move around with individual attention, or play as she wanted without eyes on her. It was then we began sensing how she was more sensitive and self-conscious than perhaps other children.

We began reading up on some of the attendant behaviors and that bi-lingual children tend to speak a bit later than children who speak only one language.

At 3½ years old we enrolled Melisa in a pre-school just down the street from her mother’s condo in a modern city in Turkey. The teachers were quite lovely and devoted, but such a structured environment seemed to demonstrate even more that our little darling has a problem. She just couldn’t get herself to properly communicate with the teachers, and less so with her classmates. It was then that mom was beginning to relay her whispers to the director and her teachers. To an SM kid, communication is a struggle.

Following her first pre-school in Turkey for 2 months, upon arriving back home in 2017, we enrolled her in the Goddard School. Her teacher really loved her, but the same issues were prevalent. She could communicate somewhat with her teacher, but she didn’t interact with her peers in the class of 14. After a couple of months, she expressed to us that she didn’t want to go back to the Goddard School. Her teacher was upset about her departure. We then enrolled her in Bright Horizons. Her tenure in that school lasted about 3 months, as we saw a little improvement, but we decided to seek out another alternative. So we enrolled in a semi-private school with pre-k and kindergarten classes.

What We Discovered

About a month into the new school program, we began to see emerge a predictable pattern. Melisa began shadowing a younger and smaller girl and didn’t mingle with her other classmates. She preferred to pretty much be on her own, whether it was doing the Buddha Board, or painting at the easel. In the playground she was content swinging on the swing by herself or her little friend. Her friend, by the way, was also bi-lingual, who spoke Hebrew, and little English at the time. The school also has an outdoor classroom, so Melisa enjoyed all the tactile things the outdoors offered. She loves being outside in nature. She did mingle a little with the kids, but we still noticed that her interactions weren’t so natural. Her level of comfort was still an issue.

During circle time, Melisa would be the casual observer and not really participate. The teacher seemed to have a philosophy of ‘just letting the children be’, but in our case, that was a recipe for disaster, or sparing the hyperbole, not advancing her development. We just felt the teacher should be engaging her more. The problem is that her teacher didn’t really know what to do, despite teaching for 30 years. It was at this point that we brought in a speech pathologist, setting up sessions with goals and for her to come into the class and help Melisa with speaking and interactions in very small groups. My wife then found the SMART Center – a selective mutism research center. We got Melisa evaluated and she was diagnosed by the head psychiatrist with what my wife already knew. Selective Mutism. The center gave us a strategy for exposure therapy in working with SM kids. We began to go to stores, having her present the items to purchase, giving her the credit card to push into the reader or hand over to the cashier, accept the receipt and say thank you and good-bye.

My wife would create charts with goals for Melisa to accomplish for every time she spoke to someone, did a handover/takeover, or attended a social function. We arranged for structured play dates as well. However, despite these things, Melisa continued to have co-morbidities (other behaviors) like oppositional tendencies, defiant behavior, yelling, being controlling and disrespectful. These were just the various ways Melisa was communicating and having her voice heard. But this presented difficult challenges for parenting.

After applying the SMART Center strategies and even trying out cognitive behavior therapy (CBT), we realized that she’s too young for CBT. Moreover, the therapist was more interactive with my wife and not our child.

Now Melisa is in kindergarten and the teacher is quite aware of her being selectively mute, and she has begun to come out of her shell. It also helps that the teacher and assistant have only 12 kids this year, so 6 with one and 6 with the other, morning and afternoon. Plus there’s a lot of time spent outdoors. The key is that the teacher, who knew her from last year, is well aware of her condition, and is proactive in helping Melisa’s development. During late spring, we also enrolled her in the Brain Balance Center. My wife has been thinking outside of the box in finding more tools to assist Melisa’s SM. It may be a slow process, especially with seeing the disintegration of the co-morbid behaviors, like her worrying mind and but we are beginning to see progress, as she loves her kindergarten.

The Three Keys

The three keys to keep in mind are teacher, parents and therapist. The goal of Brain Balance is to balance out the left and right hemispheres of the brain. The result should be that certain behaviors will right themselves as the brain gets nourished with the right combination of sensory stimuli, activities and exercises that will put the brain into a balance state. That goes for social anxieties, attention deficit disorder, ADD and ADHD, and of course SM.

Raising an SM child takes a lot of careful and deliberate parenting, social exposure, play dates and generally placing the child into slight uncomfortable situations that can foster his or her growth. As we may hear the constant refrain from those adults who don’t know better, “he/she will grow out of it”, we parents of these disaffected kids, know better and must take the steps to resolve their discomfort in social settings and pave the way to their greatest potential.

Ralph Nigro

Ebru K Nigro

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My daughter was originally diagnosed at age 4. I talked with her doctor about her “overwhelming shyness” and requested a referral to a child psychiatrist. A short time later, we went in for our first appointment and left having learned the term Selective Mutism. Unfortunately, we only got a couple of appointments in before our world turned upside down and we had to move into her grandparents’ house to start over. Admittedly, I did not think much on her diagnosis, but kept her in some kind of activity like the psychiatrist had suggested. That Fall, my daughter went into VPK/K-5/Pre-Kindergarten and was away from me for 3 hours every day. She struggled slightly, but it was not too bad, however, her teachers let me know that she would not speak to them, give them eye contact, nod/shake her head yes and no, etc…. She did play with her peers well, which I was extremely grateful for.

I decided with our new doctor to put her in with a child counselor who used “play therapy” and we saw her for about 2.5 years. 

In those years, her Selective Mutism got no better, but her behaviors got far worse. During this time, we chose to have her evaluated by another professional, who immediately diagnosed her again with Selective Mutism and recommended a psychiatrist and medication. 

Following her plan, I put my daughter in medication, and we saw some progress. She seemed less anxious and was not willing to attend school, she even eventually began to speak to her teacher and read to the whole Kindergarten class. After a few months, the medicine began to get harder and harder to give because it was concentrated and had to be mixed with 4 ounces of fluid. That’s not something you can force someone to take, so sooner or later, my daughter just stopped. 

Come first grade, she had the worst school year of her life. She had been lucky to receive her same teacher, but due to a family emergency, she had months of endless substitute teachers and eventually a new permanent teacher. Her behaviors became angry and violent, forcing me to send her younger sisters to live with their Father in a different state, so I could keep everyone safe. 

We got back on medication, but this time they gave us the pills. Again, we were successful and saw some great progress, until one day the pill didn’t go down, and caused a serious fear in my daughter. She began to refuse the medication, and as her Mother, I could not justify traumatizing her by forcing it down her throat. 

Second grade went very well! She loved her teacher and had several friends from previous years. She was whisper reading in class from almost the first day, without being on any medication. I was so proud, and we got to leave counseling. I thought this was us finding the light and being able to move on with our lives. However, once the year ended, Third grade was not as great. She faced bullying and discomfort in the classroom. She never could explain why but made a couple of friends who helped her survive the year. Unfortunately, this was the year COVID hit, and she would not actually finish in school. During the past 6 months, she has become miserable. She is back on medication, but not an SSRI like she has been on before. We currently are not seeing much progress, but our hopeful we will soon. 

Among all of these past years, we have found hope in Selective Mutism groups. We have seen the programs people used, like doing Brave Buddies, but it’s been so far out I’d reach for us financially. We were finally referred by someone at CMI to reach out to the FIU MINT program. My daughter is going to be starting an intensive group treatment at the end of September this year and we are praying for relief. Our hopes are very high that this will be an answer we have been waiting long and patiently for. 

From our experience, it seems that SM has a lot of characteristics and can have its good and bad days like most other things in life. My advice to anyone who knows someone that struggles is to be supportive & patient. This is so hard for the people going through it, and I fully believe it does not ever get easier, but it can get better. 

Thank you for taking the time to read our story. 

-Alysha Whitted

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My son is now 13. He was diagnosed with SM when he was four, much to the relief of his preschool teachers. They thought there was something they were doing wrong that caused him not to talk to them. We’ve had numerous occasions for people will say “I’ll get him to talk to me”. While well intended, that is the worst way to approach him. He won’t even make eye contact with those people. More recently he will react audibly to people though not verbally. He speaks exponentially to close family members only. As he’s reached teenage years he is texting friends so I feel there is some progress in that regard. During this time of quarantine we are doing school online which he loves. It is a situation where there are no online meetings where he has to show himself on camera. But if presented with such he will do so but just scooch down so you only see part of his face. We’ve tried meds with no luck. Did not change a thing about him. He’s a great kid I just wish he would let others see it.

-Kate Barrett

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Hi. My name is Jessica and I have SM. I’m 16 years old and don’t have many friends. Making friends is hard when you don’t talk. I text my best friend all the time and she accepts me. I’m lucky to have a good friend. When I was little, I couldn’t make friends and would stay away from others. I was left alone because I was different but that was ok with me. It made me nervous to be around others especially when they tried to get me to talk. That was hard. Now that I’m older I still don’t like being around people who try to make me talk. But I’m not as nervous as I used to be when I’m in public. I can look at people better now and even smile at them when they say hi. Nobody seems to care if the word hi comes out of my mouth or not, as long as I smile. Someday maybe I’ll be able to talk to everyone but until then I have my friend.

Jessica

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Hi I’m writing part of my story. School was horrific. They were very neglectful and abusive. I don’t remember too much about preschool but when I got into elementary school that’s where all H*** broke loose. I would speak to some people in kindergarten but mostly would sit in the corner and watched the other kids play. I got into 1st grade I believe I spoke to one teacher but not too many others in the building. I got into second grade I stopped speaking to teachers altogether except for 1 in the resource room. Second grade I believe is where I literally got punished for not speaking. They came up with this contract that I signed I had no idea what I was signing but they told me to sign it and I did. What it was was a contract where no one in the building (authorities) would speak to me because I didn’t speak to them. Then they came up with another plan where a teacher would single me out and call on me in the classroom and if I didn’t answer her Verbally she would put a mark on the board and after a certain amount of marks I got sent to the principal’s office and then suspended for not speaking. I was so frustrated because I couldn’t speak that I acted out so then they labeled me as behavioral and they put a tutor with me who was also instructed not to speak to me. They wrote back and forth to me. It was horrible I was the only one in the school that had that. I got to 3rd grade I think it stopped then, but they were making the marks on the board and sending me to the principal’s office and suspending me. Well one day the class was watching a movie and I had to go to the bathroom so I got up to take a ladies room pass and the teacher yelled at me and told me I HAD TO ASK to go but yet ANY of the other kids in my class could get up and just take a pass and go to the bathroom they didn’t have to ask. So, she didn’t let me go to the bathroom so I wet my pants because I couldn’t ask.    

Then about halfway through the 3rd grade they sent me to a different school, a school for behavioral disordered children. I wasn’t like those kids.

Anonymous1

**(note from Gaye James): While “Anonymous1” still struggles with selective mutism and anxiety, I am proud of her for reaching out and sharing her darkest memories. To heal, we must face our fears. Unfortunately, selective mutism is still so misunderstood by many teachers and educators. Spreading awareness is the first step to helping people understand. If the teachers understood the challenges “Anonymous1” was facing as a young child, she may have never been labeled as disobedient. Her life might have played out differently. But we can’t change the past, we can only make a better future. Educating others is the first step to preventing children from being mis-labeled.

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I’ve had selective mutism my whole life. Both of my parents were really reserved and quiet, so me being shy fit perfectly into the picture. No one suspected anything was wrong. At first. Throughout school, I couldn’t use my voice to talk to anyone. And back in those days it was common to be hit by a flying chalkboard eraser by the teacher if you were misbehaving. I got pretty good at dodging those things, since they came my way more than I’d like to admit. Even though the erasers didn’t hit me, life did. My self-esteem was severely low. I would watch the other kids chatting away but just couldn’t bring myself to join in. A part of me thought I didn’t have anything valuable to contribute and an even bigger part of me couldn’t figure out why I couldn’t join them. Maybe it was fear, I don’t know. But life was hard, that’s for certain.

As an adult, I had trouble getting a job. Talking to adults was the hardest thing to do. If only a child would do the interview, I could often talk to people younger than me. Children seemed less threatening. Maybe because I was a kid once and could understand what they were going through. I would practice for an interview for a week straight but only to discover when I was in the actual office face-to-face, I could barely say my name. Needless to say, I struggled to get employment. So I decided to go back to school and become a pre-school teacher.

I have been working as a preschool teacher for a few years now and loving it! I can talk to the kids, they don’t judge me. I still have a hard time talking to adults, but each day is getting a little easier. I became a teacher to help those kids that struggle. What I found out is that those kids are helping me. They are my therapy and it’s working. Baby steps.

Anonymous2

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