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6527212 December 09, 2009

Talkative Mute: An Aberration Story

... as parents, we need to let our children live as they are.

Sometimes I don't feel like talking to people. I'm usually quite the Chatty Patty at home, so when I suddenly become withdrawn, my husband usually asks me what's wrong. The truth is that many times I'm simply hit with the mood to sink completely into myself and recharge my batteries. I need a certain amount of peace and solitude. I'm an outgoing introvert. If I don't get enough solitude, I start to shut down when I'm around other people, even my family. For this reason, I've always said that my shyness is "situational."

It's weird. One day I'm the life of the party, and the next I'm standing in the corner feeling like I'm in some kind of bizarre bubble. It's literally painful. And I don't always know which it's going to be. I'm a loner at heart, yet I know how to pull out my social skills when needed. But sometimes I just don't feel like it; I can't bring myself to do it. This inconsistency has caused me trouble in the past, and has been frustrating.

Well, this is all peanuts compared to today's topic, Selective Mutism (SM).

I'd never heard of SM until last summer when a student wrote an essay for me on her aberration, which was SM. My guest today, Ivy, came across the student essay while researching SM, and contacted me. Her teenage daughter also has SM. Ivy wanted to share her story as a way to reach out to others who are faced with SM. It's a poorly understood diagnosis that has not only become her daughter's aberration, but also her own.

Your daughter has Selective Mutism (SM). Many people are likely unfamiliar with SM. Can you tell us what it is and how it presents itself?

SM is when a child is suffering from anxiety so extreme they become "unable" to speak in social settings (e.g., school, party, church, ordering off the menu or something we feel is simple as in greeting a new person, etc.). The key word to remember is "unable." Yet when at home around their siblings or parents, you may want to say, "Calm down, stop yelling, be quite!" like anyone else.

I can't tell you how it presents itself in other cases, as I can only speak for my daughter. It may be different with everyone else, but I can share my story and how it happened to present itself to us back in 1999.

My daughter was always so full of light and energy. She was always so talkative at home with me, my husband at the time, her older sister, one of the neighbors kids (her age) and her uncles, aunt, and grandparents on her dad's side. She would not say much and was more quiet around my side of the family, I thought she was "just shy" not seeing them often. The one thing I did notice, but did not really pay attention to, is she was clingy towards me. If she heard people yell, she would cover her ears and start shaking, closing her eyes and bowing her head down crying. she also would tend to point if she wanted something at times.

We felt she was just shy, until 1999, when she started public school. The first day she was full of excitement; she was going to be like her big sister, loving and chatting the entire drive over. I walk her in the class, kiss her and say "see ya later honey, I'm so proud of you." I head out the door and that is when it happened....the start.

I hear screaming as if someone was just hurt. "MOMMY, MOMMY, Mommy." I turn. It was my little girl crying through people to get to me. I ran over. She could barely breath shaking and crying. It brought me to tears. The nurse came over and took us to her office trying to calm the situation, and of course, the scene that was made in the hallway. I ended up taking her home and as we continued to try again. I basically sat in the class every single day inching out a little bit at a time until I finally made it out of the class room (patience is key to dealing with SM).

Still she never spoke. The entire year went like that. My heart would break because she would come home with wet clothes because she could not ask to go to bathroom, I've overheard other kids whisper "Oh, that girl over there, she doesn't talk." If they had a substitute come in and they tried to get her to speak, the class would say, "SHE DOESN'T TALK." The neighbor's daughter was in her class, so toward the middle of the school year, she would whisper to her as a way to answer people. It was her crutch.

The next year, It wasn't as bad to start. She still did not talk. I was brought in because the school wanted to officially evaluate her. I approved the evaluation to take place. They continued to try with her through the school year, and then finally I was asked to come in for a meeting again. That was it. I was "advised" that for the best interest of my daughter, she should be taken out of public school and sent to a school for Autistic children. Then the school explained how they are unable to access her, they don't know if she can read, write, let alone talk. I went into such a mood, I explained how she is fine, she reads better than her older sister did, we can't shut her up at home, etc... They said they had no other choice, basically she has a form of autism.

I cried and cried and cried. Clearly I thought these people are crazy. She is fine. I knew she wasn't fine, but I also knew it wasn't autistic. Come on, I see her at home all the time. A week or
so goes by and I'm watching 20/20. I look up and something catches my eye, so I turn up the volume and listen intently as I began to cry and shake. My older daughter says "Whats wrong mommy?" "Why are you crying?" I said: "That's it, that is your sister! Selective mutism!" A story ran on Selective mutism and the girl was showing every bit of my daughter. I knew it. I decided to take her to a therapist and thankfully because I saw 20/20, I was able to ask for someone familiar with SM. I found one and sure enough, my daughter was diagnosed with SM! Not autism, SM. We had also discovered that her dad suffers from SM as well, but has never been treated and he rejects SM, even to this day. Which explains so very much.

SIDE NOTE: If SM goes untreated, the person can turn to drugs and alcohol as a way to be able to come out and express themselves.

The psychiatrist then prescribed Ritalin in a small dose. She would not take it, therefore I put it in her oatmeal. She knew it tasted weird, but didn't figure it out that I was putting it in her food. It worked, she started coming out of her shell. However, I read info on Ritalin and I was scared about having her take it too long. Besides, her dad nor I had the money at the time or insurance to continue to go to this psychiatrist. So we thought it was over and she was getting better.

BIG MISTAKE! I basically had to try and deal with SM and everything on my own. I had no support as a single mom. It's been a crazy roller coaster.

Having support from your family is extremely important. If you don't have that, there are support groups. Although the SM children are suffering, we are suffering as well because we so want to help and we can't. We get frustrated and just want to SHAKE them to speak.

Throughout the years, here are some difficulties I've had:

1) Giving her shower/baths (she did not like help, was difficult for her to get comfortable). I always had to talk to her and say we are all the same, etc.
2) When buying clothes and asking her to try something on, she would not come out to show me. She would just say no or ok. As a parent we want to make sure it fits appropriately.
3) She never asks for anything. If I said "Do you want this? "She would bow down and say nothing.
4) When she came home from school if we asked her how was her day she would almost cower-like and not respond or say huh.
5) Never participated/raised hand in school.
6) Oh! I almost forgot, compulsive disorder also came with SM! She would measure her socks and shoe laces, if they were not even she would scream in tears until I fixed it and she measured it.
7) Wet herself because she would not ask to go to bathroom.
8) Never look at faces, even when she draws, she does not draw a face.
9) Cower if someone said hello.
10) Can only deal with one friend at a time.
11) Picks nails.
12) Refuses to go to doctors of any kind
13) I never knew when she had her first period. I still never know when she has it. I make sure I have pad/tampons etc.
14) She refuses to be labeled or accept SM.
15) She does not attend parties, social functions. If she does she sits and never says anything or moves.

Out of nowhere:

1)She performed in school talent show solo (I cried in disbelief)
2) Became a cheerleader
3) Played HS football (only girl and was an actual player) (110lbs soaking wet)
4) Loves being around children and animals

How did you initially help your daughter once you understood the issue? Has that changed over time, and how?

I wish I can help my daughter today. I tried the best I could early on as stated above, but now she needs to accept it. She needs therapy. I suggested that she could be of help to kids dealing with SM. Through her creative skills she can impact many. I put the material in her face to just read about it. She ignores it. She basically "shuts down" at any type of confrontation. Whether bad or good, she cannot respond or make a clear decision. What do you want to eat? Silence, look down, whisper "I don't know." It is the same response for any and all confrontational questions. She can not even accept a compliment as it seems confrontational.

I recently decided to start a support group in my area. I do try and speak to the teachers, because many do not seem to read the section of the report explaining she had been diagnosed with SM.

How has her SM impacted the family? As your daughter grew up, did her SM change or shift in any way, or has it remained constant?

We are now a blended family consisting of my husband and five daughters. The strangest thing is the dynamic between us all. I had given my husband the heads up about my daughter and since the very first day, she showed no sign. Of course everyone thought I was crazy. They did not see anything that I described. She instantly bonded with everyone. It was great.

But as our family continued on, although we are all very very close, the signs come out. How did the additions handle it? Proudly I say ... very patiently. They don't push, it is the worst thing to do as they (those with SM) tend to shut down more if you do. One of our daughters is doing her college paper on SM.

My husband, however, has been having the hardest time as of late. When discussing colleges, she shuts down, starts to cry. The dialogue is normally "We are so proud of you, where you want to go? Let's plan it out." "What needs to get done?" She will look away, look down, pick nails and then we ask "What's wrong? Why do you look like your going to cry?" She shuts down and cries.

She also appears to dumb herself down when someone, anyone, asks her a question. Even though she hears the question she says "Huh, what, huh???" It is simply avoidance.

What are the top three signs that a child may have SM?

1) Extreme shyness in any new environment which does not allow them to speak
2) Shows NO emotion
3) "shuts down" and freezes

Life is full of surprises. What has raising a child who has SM taught you about parenting, life, or yourself?

I learned that, as parents, we need to let our children live as they are. We need to let them take their time with their own issues, not to push or expect anything more then they can give. We cannot control everything or continuously do for them. We must let them fall while we are available to be there for them. Some day we won't be there and then what? But most of all, PATIENCE. I, by far, am the least patient person in the world, yet dealing with SM, I continue to learn and work on patience.

The biggest thing is that it is not always about me or me being the salvation for my children and it does not mean they don't love us.

Every person is unique and has so much to offer the world. What do you see in your daughter that is unique and wonderful?

My daughter is a beautiful soul with the biggest heart for others, particularly children and animals. She is extremely talented and creative in writing, film production, and music (self taught in piano, guitar). What others think or say or have does not matter to her. Although she is very beautiful, she has no clue. What she does have is a pure genuine, old soul.

_The light and dark of my daughter today_

At the age of 17, she continues to not show emotion. When she hugs, it seems extremely awkward for her to do and lacks the affection she used to show. She continues to not participate in school. Her activities continue to be in the creative/artistic field (non-confrontational). She still has same three friends from elementary school. She stays home if it's just her and one friend maximum, possibly two friends if they are going to Starbucks, a movie, or the bookstore (all places that are quiet). The only time she is loud and full of life is when she is with her sisters at a tailgate event or if the one sister closest in age is with her. You see a difference in her as if there was a bright light on her.

Most recently, I questioned myself thinking maybe she is better, maybe she doesn't have SM. When we went to see her college of choice (very small college, smaller than her HS), where her sister goes (safety), she was so excited on the ride out. She spoke all about it. When we arrived her sister met us with her two friends. My daughter shut down completely. I never saw that around her sister. She kept her head down, would not take a picture, would not speak, hands in pocket or simply picked on her nails. When I would ask her something, she could not answer or would say "Huh?".

When we all went for pizza, she whispered what she wanted so low that one of the girls repeated for her. My husband and I decided to walk behind the girls to observe their interaction and we saw her walking behind alone with her head down, hands in pocket. One of the girls said, "Come on!" and hugged her back up front with them (she uneasily walks pulling away from the girl, never taking her hands out of her pockets or talking.

In closing, I need to say as days and years go by, I continue to learn and face new obstacles about SM. I recommend that people who think they could be dealing with SM in their families do your research! The Selective Mutism Group has a great website with tons of information.

For more on:

Selective Mutism
Being a Loner
Autism, here and here.

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6527212 June 22, 2009

Selective Mutism: A Teen Aberration Story

Most people think I’m just shy. They’re not wrong; not really. It’s just that there’s more to it than simply being shy. At age 4, I was diagnosed with Selective Mutism. I didn’t really know what it meant back then, only that it was difficult for me to make friends every time I moved to a new environment.

Selective Mutism (SM) is a little known mental disorder similar to autism. Children affected by SM have an extreme fear of speaking in public places, reaching the point where it becomes physically impossible for them to utter a simple string of words. Many parents of children with SM aren’t even aware of their child’s condition. There isn’t much information on the subject, so most people just dismiss their behavior as shyness. Often, children with SM are thought to be stubborn, misbehaving kids who refuse to speak on purpose. It’s not that we choose to remain quiet, however. Children diagnosed with SM are actually physically unable to speak. The success rate for SM is low, and many of the affected never really grow out of their fear.

Selective Mutism is, in a way, my aberration. Throughout my whole life, I’ve struggled with communicating with others and making new friends. Signs of my SM started showing up when I first started preschool. While the other kids liked to play on the monkey bars during recess, I would sit on a bench in the corner and draw lions. I was fascinated with their silky coats, dagger-like fangs, and majestic manes; no other animal was quite the same.

I remained the typical, sugar-fueled preschooler at home, however. My mother didn’t notice a thing until our school’s Parent-Teacher Conferences came around.

“All the child does is sit in the corner and draw. She doesn’t talk to the other children,” Ms. Wahn said, sniffing as she shuffled her papers around and crossed her legs. “We have a guidance counselor. I’m sure you two can swing by anytime you’d like,” she added, pushing the bridge of her glasses up her nose.

To be honest, I don’t remember my sessions with Cathy very well. I’d get pulled out of class every week on the same day, at the same time and we’d play a game of Monopoly Junior or UNO. She also had this little dollhouse stacked under a box of memory cards of Winnie the Pooh characters and a chessboard in her closet of games. She may have asked me a few questions about school or what I was doing on the weekend. I felt comfortable around Cathy. She was quiet, like me, and when she smiled her eyes would sparkle and the creases around her eyes would show.

In third grade, I stopped going to see my psychiatrist. People were asking why I kept leaving during class, and for some reason, I felt embarrassed to tell them. Deciding that I no longer needed therapy, I told Cathy and my mother that I was better and that I didn’t want to go anymore. They accepted my decision and I didn’t see her again. I vaguely remember feeling both sad and relieved, knowing that I wouldn’t ever see Cathy’s tiny, lavender-colored room again as I walked down the hallway back to my classroom.

Luckily, third grade was the year that Myra came to our class. Myra and I were complete opposites. Bubbly and energetic, Myra approached me in her color-coordinated outfit on that first day during lunch: green T-shirt, green sweater, green skirt, green headband, green socks.

“Hi. What’s your name?”
I looked up from Harry Potter.
“Hi, I’m Myra. Whatcha reading?”
Slightly annoyed, I looked up, yet again, and closed the book. “Harry Potter.”
“Oh. Cool.”
I could tell she didn’t know what I was talking about.
“I like Nancy Drew.”
My eyes brightened. “Me, too!” I liked all books back then.
“Mysteries are fun.”
“Yeah. Harry Potter’s kind of a mystery.”
She examined the school’s copy, slightly worn with years of use. “It’s kinda thick.”
I took it back from her. “It’s not that bad.”
“Oh. Okay.”
We sat in silence for a while, not knowing what to say. I smiled awkwardly and eyed the book, wishing I could get back to it.
“You can keep reading and stuff if you want,” she finally said.
“Okay,” I said, relieved. “See you later.” I picked up the book, flipped back to the page I had dog-eared, and waved.
Smiling politely, she left the table and headed to the next one, her wispy, platinum blond ponytail swinging behind her as she sat down and introduced herself to another of my classmates.

We ended up becoming best friends. That year, I had my first sleepover at her house, where we gossiped about our teachers and classmates. She liked to lie, probably for the attention. I could always tell whenever she was making something up, but I listened to her anyway and went along with her stories. Gradually, I pushed myself away from Myra. Finally, in fifth grade, I heard that she’d started to talk behind my back. I was too timid to approach her about it, but our friendship was never quite the same after that. I still haven’t seen her in two years.

Although SM has been tough on me, both Cathy and Myra helped me greatly. Cathy was my confidante. She was probably 50, maybe even 60, but she was my friend. As for Myra, I was definitely hurt to hear that she would say anything bad about me, but eventually, I realized that she couldn’t change her personality and that it would’ve happened sooner or later. Besides, she helped me learn how to make many of the friends I have today. I don’t know if I’ve completely gotten over what happened with Myra, but I think, overall, I’ve gained more than I’ve lost.

I used to think of my SM as a burden. Of course, I’m not always glad to have SM, but it’s taught me to value friendship and family even more than I normally would. And that’s what keeps me going.

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