I wanted to start sharing the remarkable stories of adults, young adults and children grappling with the severe social anxiety disorder called Selective Mutism in hopefully what would be a series of guest posts.
My first guest post comes from Meagan, who has her own YouTube Channel to help her tell her story. She has agreed to tell me her story so I can share with the families who read my blog.
I am quite honored that she came forward to help others understand how selective mutism has affected her childhood, her struggles and triumphs and how she continues to navigate through life with the challenge of selective mutism. There is an abundance of information regarding selective mutism in children now and the outcomes are much more positive, whereas, not so long ago, it was a poorly understood and frequently mishandled condition.
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My life with Selective Mutism, by Meagan
I used to be five years old.
I started kindergarten in 1987. My teacher, the counselor, and the other students saw my failure to speak as a refusal to participate. I wanted more than anything to speak but the words just wouldn’t come out. They called me a disciplinary problem. I thought I was just a quiet and anxious little kid. My mother told them she couldn’t afford a therapist. This debate continued till I was in high school. Then my mom left my problems to me.
I used to be seven.
I had repeated first grade and stopped talking to my oldest sister. I have failed to speak to her since then. The list of family members I couldn’t speak to grew longer in the following years.
I used to be twelve.
I had sung in front of several crowds with my classmates. The final crowd was the entire student body. Instead of praise I received sarcastic feedback like “Oh so you’ll sing but you won’t talk.” The following school quarter, I left the choir.
I used to be sixteen.
I had started my freshman year of high school. During my entire high school career I got what I wanted, no attention. But I also got something I didn’t want…anxiety attacks. The attacks continued throughout my high school years. They eventually impeded my work performance and my attendance slipped. The attacks got so bad that I eventually quit after my junior year was over.
I used to be nineteen.
It was 2001 and I was working at my first job with my mom. She had told her coworkers that I didn’t talk in school. Big mistake. After I started as a data entry clerk, I couldn’t see the point of talking to anyone there. The way I saw it they already had a preconceived notion of what I was like. My mom repeated two words to me that she remembered in her debate with the counselors and teachers “Selective Mutism.” A year and a half later and I was laid off from the only job I’ve ever had.
I used to be twenty-two.
I started college in 2004. Every word that I spoke I considered an accomplishment. I’d tell my mom my day was good when I had an opportunity to speak in any of my classes. My first semester flew by and I started the next with online classes. After an overwhelming year of online classes I left.
I am twenty-eight years old.
My name is Meagan. I deal with Selective Mutism. I’ve been unemployed since 2002 and have no current prospects. I fill my time with music, online friends, and books. Writing became my only way of communicating at a very young age. This has evolved into emails and instant messages.
The failure to speak does not suit me. The more I want to talk to the people I love and care about the more I feel like a disappointment when they are around. My voice stops in my throat. The only way to ease this tension is to let go of the idea that I may ever talk to them. Some of them have never heard my voice. Other family members I just stopped speaking to at a very young age.
My mom raised me on her over generous, you win some you lose some, philosophy. It took both of my older sisters longer to realize how much our mom has done for us, but they figured that out eventually. She’s been my best friend and I can only hope that I’ll be able to take care of myself without her guidance someday. The most my mom has ever done for me is take care of herself. She never did that before a few years ago. My mom has held back on enabling my behavior for the past eight years. She basically stopped doing some things for me. The best thing she ever did was put a name to my failure of speaking.
Some things have changed. I can walk into a store and buy groceries without my mother. I can walk into the BMV and renew my driving permit. I can order my own meals when I’m with the people that I can talk to (that remains a short list). Now that I’m old enough I can walk into a Winery and take care of the wine list for a party on my own. I actually enjoy parties now, which I didn’t use to.
How I do all of the above is beyond what I thought I could do. I’m realizing a bit at a time what I am capable and not yet capable of. Journaling has become my auto therapist. I often write about my goals and then rewrite them. It puts reality on a level I can understand. Passing my time with learning new songs on the piano and recently taking up the violin gives me something I can stretch out with and relieve some of the tension I carry around with me. I can just be. I suppose music is my meditation.
I’d like to tell parents what they could do for their kids but I can’t because I’m not a parent. I just wish I could tell these kids that are dealing with Selective Mutism what they can do for themselves. The one thing I’ve learned to do is take care of myself, because that is part of survival. I may never work in a traditional 9 to 5 job; again, it was so stressful I would have panic attacks on a weekly basis. The way my college classes were scheduled, I learned how much interaction I could stand and for how long. I have alternatives as so many of us do. Knowing yourself and knowing what you are capable of can be empowering and overwhelming. I still worry about my future but I always come back to what I’m doing today. I’m helping myself.
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For more information about selective mutism please check out these links –
http://www.selectivemutism.org/
http://www.selectivemutismfoundation.org/
http://www.selectivemutismcenter.org/
If anyone would care to submit a guest post regarding their selective mutism story or their child’s selective mutism story, please drop me an email at: raisingsmartgirls@yahoo.com
Raising Smart Girls 
Meagan…
I didn’t want to comment on the post, so I am commenting here. I wonder if you know that you are a beautiful soul for doing this for me. I appreciate so much you taking the time to share your story.
Because I am a mother, I understand how hard it is to hold back on the enabling. I’ve had to do it myself, to encourage my daughter to stretch beyond her comfort zone. It is hard, as a mother, when all you want to do is make the hurt go away and protect your child from the insensitivity of others. I understand that so well. I do.
Again, thank you so much for this.
Thanks for sharing your story. Your writing is very beautiful.
I have a young son with selective mutism (you can read about him on my blog), and I like to read about other people’s experiences with selective mutism. It helps me to know we are not alone, when so often we feel like we are. Thanks again.
Jillyme –
I’m glad you stopped by to show appreciation for Meagan’s writing. I agree. I think she’s a very beautiful writer too.
From what I have gleaned about children with selective mutism, oftentimes they have wonderful abilities in creativity and imagination. It does not surprise me at all that Meagan was able to write about herself so well.
I remember when we first started out on our journey, how lonely it felt and how painful it was to have a child who you knew had such wonderful qualities that many people did not see. Many times I could not sleep because I worried and researched into the night about it.
My heart broke for my child, and my heart goes out to all of the children and young adults and adults still struggling and the parents still worrying about their children.
I hope and pray that we can do some good work here with peer to peer and family to family support.
I will read your son’s story tomorrow and comment on your blog soon.
Best Wishes to you family and your son.
My main objective in the past few years has been to learn more and spread more information about Selective Mutism. Just seeing this makes it all worth it. Thanks for presenting this opportunity,otherwise, I might have never finished writing this short biography.
Meagan –
I am so pleased, so grateful to you. You’ve already reached one more family right now.
I am so glad that you have gotten something out of this too and I hope that you feel you’ve done some families some good (some may comment, others may just read and not comment, but you can be sure I get a lot of google hits for “selective mutism” and your story will be seen by those individuals), and I hope that you find some good blessings come your way for sharing yourself with others.
I believe the universe has a way of rewarding good deeds.
Many blessings to you in your efforts to grow and develop your emerging strengths and abilities.
I am a mum of a 9-year old girl with SM, and I’d like to thank you too, Meagan, for your story. The thing that particularly struck me is that you are saying it was the right thing for your mum to stop enabling and doing things for you. It is so difficult as a parent to know when to intervene/help and when not to. It seems so mean and cruel to let my child struggle and suffer in a situation where I could help. I did understand that it was the right thing to do to reduce her anxiety in certain situations, which is the aim as if the anxiety is lower, the likelihood of speech is higher. So you’ve given me food for thought, and I am so glad you are making some progress and doing things you didn’t used to be able to do. Remember that you have shown incredible strength and courage to come this far, and those same qualities will enable you to do even more in future.
Joanna –
Thanks for your support and encouragement of Meagan. It warms my heart to see her getting validating feedback and know that she is impacting families in such a positive way.
I think there could be some middle ground between watching your daughter squirm and be uncomfortable indefinitely and rushing right in to help.
I made a decision to not care about certain situations, such as being polite to strangers. My daughter often got insecure around people that were intimidating for whatever reason (I think sometimes they just looked weird to her). I realized that while it embarrassed me a teensy bit to have her ignore their greetings, I didn’t push it but I did expect some sort of acknowledgment like a hello. If she was given a special treat by someone she didn’t know, I didn’t make her say hello, but I did require she acknowledge the gift non-verbally, like a high five or a handshake. I would tell her, “you don’t have to say thank you, but you have to show your thanks in some way”.
At 5-6 years old, I would ask if she’d like to hand the money at checkout counters. I didn’t require her to speak, but still, encourage to her participate non-verbally. At first she declined to do that for me, but I always asked “would you like to give the cashier the money?” She’d often decline. Eventually (and definitely after being worked with by the school), she started accepting the challenge. And yes, I marveled the day she whispered to me, “mommy, can I give her the money?”
After she was worked with in school, and she gained confidence in school to start speaking, they spent 30 minutes a week taking her out of her comfort zone – the speech teacher took her on errands around the school – delivering messages to the school principal, the nurse, the lunch lady, other teachers. At first the speech teacher gave her an opportunity to greet, say hello, whatever. When she declined, the speech teacher answered for her. When daughter gained familiarity and confidence (and I gave her sensory occupational therapy at home and did Yoga with her and sent her to ballet for sensory calming activities, and making one-on-one playdates with classmates she liked outside the classroom – often at the park because of the sensory opportunities), she began to speak. In time, the speech teacher took a back seat and let daughter take charge of the encounters.
When going to restaurants, we’d always pause to allow middle daughter to choose what she wanted by pointing to it. Eventually, when she became more verbal in other places, she’d hesitate and looked like she WANTED to say something but still couldn’t, but we’d wait to see what she would do before jumping in to tell the waitress. One day, she surprised us by verbally told the waitress in a small voice and husband and I were stunned and we had tears in our eyes. And then we realized every small opportunity like this was an opportunity to encourage and praise her baby steps, of course, in our eyes, this baby step was HUGE!
Anyway, these are a few examples I can think of to nudge daughter out of her comfort zone a little bit.
As long as she had both non-verbal and verbal choices…I think that helped take the pressure off her, but there was still an expectation to participate, just no pressure to do so (if that makes sense). Every social encounter with another human being could be an opportunity to practice.
I just wanted to add a “thanks” as well, Meagan, for sharing.
I know that before our K was diagnosed, I – like your teachers – assumed she was being stubborn, obstinate, or just doing it “on purpose”. It’s interesting and useful to hear what’s going on “on the inside” and how you’ve been able to cope.
I’m glad to see that this has had an effect on all of you. I hope you don’t mind Casey but I talked a bit about your blog in a recent video. It’s part shameless promotion and part complimenting you if that means anything.
It means a lot Meagan. And, well, as you know, sharing stories – both good and bad – helps someone.
I will check out your video.
Thank you so much.
Blessings
Casey
I wasn’t quite sure where you had to write your selective mutism story, but I’ll comment under here to tell you it 🙂
Leanne –
Thank you so much for sharing your story with me. I turned it into a post, and fixed the email address so it’s more clear where to send the stories. I appreciate so much your story.
I posted it here:
Your story is very inspiring to me. I to am an adult who still suffers with selective mutism and I am slowly working on my story so I can also share it. I will let you know though that you can receive disability benefits. I’m 30 and I have been on it for the last 3 years. it might take awhile or you might luck out like I did and 4 months after filling out the online application I received my first check. Its not a lot of money but it dose help to have an income for yourself. Yes some might criticize you for being on social security but it was put there not only for retirees but also for people with disabilities that prevent them from being able to work or gain substantial income.
Lori – Thanks for the information.
Yes, I can see how SM as an adult would prevent you from finding employment. In that regard, it IS a disability and that is what disability benefits are for.
I really need to contact the SM groups to find out how what techniques can help with adult SM, because there are more and more older children and adults who are still continuing to struggle with the condition.
I’d like to find out more information to help those people who weren’t helped as children because they didn’t have the resources available to them that is out there now.
Your story is very inspirational. I have had selective mutism all my life. I’m now 24. And still got it bad. I can not work. And I never finished school it was that awful. I was lookin for adults that still had SM, and came across your story. Glad I did, its great and should inspire others.
I just found this post, and am glad to see that this is more than simple shyness. I grew up in the 70’s with thid, and the advice to my parents then only exacerbated the anxiety and problem. I was so loud at home, my mom thought my report cards indicating my lack of speech were on some other student. The school finally had me see a psychologist, who said I was just a quiet person, no problem (afterall, I was very obedient, made good grades, and never needed attention-nor did I want it. I just remember childhood as stressful as the approach then was to put me on the spot to force speech. I am in my 40’s now, and speak freely. I managed to graduate college and have a career. I wish medication had been available at a young age as I feel I needed something to get my anxiety somewhat decreased so I could take those baby steps at speech. I know medication is not for everybody, but with a small dosage of paxil, I was able to initiate the therapies suggested.
Megan,
The sharing of your story has touched me and given me some hope. I am a 44 year old mother. I have suffered from selective mutism and though I am able to work as a teacher, the anxiety that I have when speaking or being the center of attention is overwhelming. I have been able to “deal” with it enough to hold a job, yet it remains a problem in social situations.
My 10 year old daughter suffers from the same condition. She is a bright, caring, loving and artistic young lady. Her father and I are so proud of her, yet we ache for her and want her pain to go away. She was so fortunate to have a teacher two years ago that was concerned and made every attempt to help her. Our daughter made tremendous progress and we felt she was on the upswing. She gets good grades and although doesn’t speak much in class, gets outstanding marks in citizenship.
During her student led parent teacher conference last week her new teacher, was insensitive and cruel. This happened in front of my husband and I and we are very concerned about how she was being treated while we were not around. After the conference, I held my 10 year old daughter in my lap, just outside of the classroom. She cried like we have never seen. We have recently taken her out of the school that she has been in since kindergarten due to the fact that her teacher has been insensitive to her situation and is not being supported by the administration. We cannot place her back into a situation that is so terrifying and not conducive to her growth or well being. We will be placing her on an independent study until we can resolve the issue and raise some awareness about this disorder.
I know, as you do, that no one would choose the feelings that come with selective mutism. I hope you continue to progress and feel some relief in the fact that there are others who have compassion toward your situation.
Thank you for having the courage to share your story.
Pamela
Pamela –
Wow. How awful. I am so sorry to hear about what happened to your daughter. I think that the teacher was irresponsible and needs to be educated on SM as well as given some lessons on compassion.
I can not imagine what goes through a teacher’s mind when they do such a thing to a child, though I DO remember being humiliated by one of my science teachers in front of the entire classroom once. I think some teachers can do a lot of damage.
I sent you the Suggestions for Teachers as well as a file from the American Speech- Language-Hearing Association that may help to educate your daughter’s school administration about the issues she faces. I hope that will help you open up communication with them.
I wish you and your daughter the best of luck.
Casey
It was a recent post on Casey’s Sprightly Writer blog titled Seeking the Sacred
that brought me back here so I thought I should leave an update of what’s changed since I wrote my guest post here . It’s been a month long of tears since but I think I’m willing to put it out there that my mother died just this past month on February the 15th. This isn’t something I felt up to talking about, but writing about it in my journal has helped me a lot. I feel like I’ve lost my best friend. I feel overwhelmed and lost by the fact that I have to move on without her. But I remembered that I wrote about her and to have reminders of her like this has become more important.
“To laugh often and much; to win the respect of intelligent people and the affection of children…to leave the world a better place…to know even one life has breathed easier because you have lived. This is to have succeeded.”
– Ralph Waldo Emerson
I have breathed easier because she has lived not only for herself but also for everyone else that she loved and cared for.
Meagan –
I’m so sorry for your loss. I know our loved ones pass on in body, but they never really pass out of our hearts and minds. And, I am sure, that in your quiet moments, you’ll hear your mother’s wisdom come through to you. She’s out of sight…but never out of reach, not really.
You can still talk to her in your mind. You can even still ask for her guidance. It’s just in a spiritual way, rather than in a physical way. It’s not much different than praying to God. No one has seen God, but an awful lot of people still believe they can talk to him and God hears them. This is no different.
I’m touched that you found the courage to open up about it a little bit, because of my post on the other blog. I’ll share it here so people know which one you are referring to.
I wish I could give you a hug. I do agree with your quote and, if you think about it, sharing your story here has inspired others and I am so grateful to you. In this way, you’ve touched other people with your story. Have you thought about writing your story and getting it published? I think that would be something to think about. There’s much written about young children with SM, but not so much about adults with SM. I think that would be an important contribution to the world. I think that would be something you could do that might bring in some income as well.
If need to talk to someone, let me know. Do you still have my email addy?
Best wishes Meagan. Keep your spirit burning bright.
Thank you for the support. I should have your email in my contacts list. I will keep you in mind if I need someone else to talk to.
You’re welcome.
Take good care of you. 🙂
Casey
meagan, i have had selective mutism for 39 years. it began with a traumatic experience at a hospital when i was 3 years old. before that time i was the most outgoing child in my sunday class, at my teusday and thursday class. i could go up and talk to anyone. it was all taken away and i never got it back. i want to post my story on here also, but i will need to write it out first. it was only today that i found there was a name for what i have. i had thought i was the only one in the world.
Crystal – thank you so much for replying.
Yes, I think there are a lot of others finding comfort knowing they aren’t the only ones struggling with condition. When people share their stories, I think it’s both helpful for the person telling the story, and for the young families whose children are diagnosed.
I remember feeling so worried for my daughter and alone and stressed out. I can say now, how wonderful it is for other people to have the knowledge that they aren’t the only ones struggling.
Best wishes and when you are ready to share your story, you may send it via email it to raisingsmartgirls@yahoo.com.
Best wishes,
Casey
This post really struck a chord with me. I have just learned of the term “selective mutism” recently, and realize that I’ve unknowingly had this all my life since I started school. I used to blame myself, as other people have accused me of being unwilling to participate, or uninterested, or just eccentric, or just overly shy in social situations. It is not just shyness, nor is it a lack of desire to speak and be part of a social group. I have never been able to explain to people why I can’t talk in situations, even though there seems no reason why I can’t – I am obviously a very creative and intelligent person, and do have something to say, but no matter how aware I am and how hard I try, it is near to impossible to break through this crippling silence. The loneliness and the shame that comes with it is equally as crippling.
I am now 28. Unable to cope with art school, I dropped out – could not function in such an interactive environment. I have become isolated and unable to look work, and have been on disability since then. I have made many strides in my adult life, like I always make eye contact with people as much as I can now, I am a little more at ease in social situations (but still rarely participate as I’d like to – I still freeze up all the time), I make big efforts to push myself out of my comfort zone and do things to help me connect with the world. I am further along the path than I have ever been but there is a very long way to go. I am almost 30, and have to learn to be ease with things that most people learn how to do in elementary school.
It would have been a lot easier if I had gotten help when I was younger, but there was very little knowledge about it back then.. No one thought there was anything wrong with me aside from extreme shyness. My teachers were concerned, but I did so well in school that it didn’t matter that I didn’t speak. There seems to be very limited information for it today, for adults. I mean, there is so much information and help for social anxiety, but this goes beyond that… there specific aspects of this condition that even mental health professionals do not understand. Doing certain exposure exercises used to treat social phobia is not helpful in addressing my inability to speak in certain situations. How does one find help/support for this as an adult, after these patterns become so ingrained? It is certainly helpful to read about others experiences, to know that there is a name, an explanation! I will continue to do more research and learn as much as I can about this.
Thank you for your post Megan. I am very sorry to hear about the passing of your mother.
Rebecca –
No, you are not alone. I hope you find your voice and the support you desire to continue to make strides in your life. Have you ever thought about becoming a writer? That is one occupation where it doesn’t matter if you are eccentric, or are uncomfortable speaking.
I’m glad you shared your experiences a little bit. I think it’s better you found out now, than at 58, right? I am still looking for resources that might help adults and the best I can do is keep my ears out.
Here’s a young adult with an SM blog and in addition to a really interesting article that I like
http://selectivemutismonline.com/blog/7-benefits-of-selective-mutism/
perhaps you can find out some information about dealing with SM as an adult.
Best wishes in your journey.
Casey
Hi, those who have selective mutism. There has been recent information that shows that things like stuttering and selective mutism are happening because of an injury to the cerebellum. You might want to consider seeing a neurologist to see if this is why you are having this issue. I’m not saying that everyone has this type of injury, but having just a bump to the head-like a fall from the monkey bars or a minor car accident can cause enough damage to lead to this phenomena. I am working with an individual now (an adult) that developed his after a brain injury. I just thought I would share. Best of luck!! (hmmm…keep in mind though, if you had this issue develop when you were a child the injury might no longer be apparent on a MRI.)
A-H,
Thanks for your comment. That is an interesting point you bring up about possibly getting SM from a bump on the head. That certainly makes sense.
My daughter with selective mutism actually ran headlong into the corner of a wall when she was being registered for her special needs preschool and it split her forehead open a little and she had to be taken to the ER for it. She already had the mutism though. And at the time, since she didn’t have any other problems (we kept an eye on symptoms of concussion), we didn’t get any MRIs or other testing.
I was reading a bit of your blog and my heart goes out to you. I hope that things will improve for you. I have mild memory lapses, but it’s mostly because I can’t stand using a planner (I started to now that I substitute teach and never know where I am going on any given day), I can’t even imagine what it would be like to have an actual brain injury that would make it a more permanent situation.
Best of luck to you, too!
Casey
this is crystal from the august 25th post. i am still writing on my story. it just takes me forever, because there is so much in my head. i am trying to find a way to put it all together. i might have to write more than one story. i hope you are doing well megan.
No worries Crystal, Take your time.
Take care,
Casey
It is so good to hear stories like this. My little brother who is now 15 almost 16 has not yet been diagnosed because its so hard and sad to say, but I come from a very poor broken family but I think this is what he’s going through.. I’m broken hearted because I’m realizing that this has been ignored or excused for teenage behavior for a few years now. I’m sad, and in tears because I’m hoping that it’s not too late for him to be happy in life with this condition. My brother is so extremely intelligent and creative an avid artist and can learn to play any instrument. But, he won’t talk to anyone anymore.. He will write things down for me to read. But, I would say he stopped talking altogether 2 years ago, my mom is on welfare and cannot afford any kind of therapy he finally did get a school therapist and he said it didn’t help… He is truant from school because if his fear of talking and is now hopefully getting social services to help him. But, even if he gets a social worker and therapy I’m worried I don’t want him on anti depressants.. And I’m worried that with the therapists in our town he won’t find anyone to help… Please some advice? He hast even been diagnosed but he tells me that he wants to talk I can tell he just can’t.. Should talk to him about it? Maybe if he knows other people are going through it, it will help?
Anon –
You are such a caring sister.
School therapists usually have little to no concept of what is going on. I don’t know many therapists who do. However, I wonder if you could encourage him to read and maybe contact some of these resources:
http://www.selectivemutism.org/
http://selectivemutismcenter.org/home/home
http://www.selectivemutismfoundation.org/
There is a research project going on at that last one, perhaps he’d like to participate? Maybe he could get some information from them as well.
I really ought to contact these groups myself and find out what could help for older children and adults. There’s a lot of information available to young children, not so much for adults (yet).
Maybe there is someone willing to work with your brother on a sliding scale. He sounds like he is gifted and he has a lot of positive qualities. He sounds like a remarkable young man.
I’ll send you some resources, if he does get a social worker and therapy, he doesn’t HAVE to go on antidepressants. He’s not depressed. It’s an anxiety disorder. I know they like to prescribe AD’s, but he can refuse to take medicine until every other avenue is used.
Would you like me to send you some information for your brother to read? I think you had to leave your email address to leave a comment, so I’ll send you something if you’d like.
Casey