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Verna From: Nanaimo Website: E-mail: v_h12345@hotmail.com	Hi, I’m the parent of a 36 year old daughter who was diagnosed with SM in the last 2 years of school. Wow, after reading all the information on your website I couldn’t believe how closely everything reminded me of the problems my daughter has had all her life. My daughter was a slow starter when she was a baby. Before she started school a psychologist said she had childhood aphasia and she learned to talk with flash cards. She has a beautiful voice and sang before she even talked to anyone. She spent all of her school years in special education classrooms with little or none of the appropriate support. This has also hindered her progress. She went through testing at several different hospital facilities over the years with the conclusion she was low intelligence. I feel some of the testing only made things worse. We went through visits with the mental health looking for answers with no results. We moved to a new city the last 2 years of school and she was finally diagnosed as having Elective Mutism (now referred to as Selective Mutism) by the speech therapist. A plan to work with her was set out including recording her talking and bringing it into the classroom to associate it to her classroom setting. The speech therapist worked with her with limited available time. Unfortunately, this was the last years of her schooling and was too little too late. Her way of relating to and communicating with other people (outside of her home) was so ingrained in her whole life that change was very difficult. I could see she was struggling every time she was expected to talk. When she tries to force herself to talk she swallows and apparently acid was coming up into her mouth. She was never comfortable with going to the dentist or doctor. When at the dentists she would not open her mouth for any work to be done. Part of her symptoms was her refusal or inability to open her mouth. The dentist she goes to now says the acid has been wearing down her teeth. The acid reflux was also affecting her oesophagus as she was complaining about pain. She has been taking an anti-acid for the acid reflux and an anti-anxiety medication for a year now. As a result, she has been able to sit in the dentist chair and allows him to work on her teeth. She still has difficulty talking to anyone outside the home. She is overly verbal and tries to control people in our home. She talks freely with me and has always talked through me to communicate with other close family members. She talks to her father somewhat. She is in a program with 14 other adults with different challenges. There is one worker in her program who she is starting to communicate with on a one to one basis. I urge all parents with children with SM to never give up and try to get help for your children as early as possible. There seems to be a lot more resources now. I tried but I faced problems of my own as I was also very quiet and often had a difficult time asking for help. I really didn’t know what kind of help my daughter needed and often felt very alone with no were to turn for help. The SM is still a struggle for my daughter and she alwaahe is working on it (talking that is). She has a good sense of humour and we take it one day at a time. My heart goes out for those who face the challenge I know it is not easy. Added: March 1, 2009
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Jamie From: New Hampshire Website: E-mail: jkn310@hotmail.com	I was diagnosed with Selective Mutism in elementry school (the early 90's) when this disorder was even more unknown. I was put through pure hell by my teachers, principals and councilors. In kindergarden I was was held inside from recess for not saying thank you like everyone else when a paper was handed back to me. In first grade my principal took me into his office and told me that my friends would no longer like me if I didn't starting talking to them (my friends had never express this me, but I believed my principal). In third grade my friend said "here" for me during attendance in gym class and the teacher called me up in front of everyone and yelled at me for not saying "here" for myself, and then made me stand with my nose again the wall for the rest of the class. In fifth grade I got an F on an oral report because I wouldn't get up in front of the class, but on the written report I got an A. My mother went to numerous meetings at the school in my defense. She defended me when they thought I wasn't smart, and thought I wasn't learning anything (altho I was getting A's and B's, but still they couldn't see). She defended herself when they accused her of abusing me. She did everything in her power to prove to them that I was normal in every way but. They still didn't understand. My mother also had Selective Mutism. She told them that if they backed off a little, I'd get through it. But they still persisted. Finally, the summer before I started high school, I decided I'd had enough. I wasn't going into a new school with all kinds new people, just to have to go through it all again. All summer I psyched myself up. I told myself if I didn't do it on that first day, it'd only get harder as the days went on. So I did it. I did it when there weren't people constantly telling me I HAD to do. I said "here" for myself when the teacher called my name. I did it on my own and I feel stronger for it. But unfortunatly what I went through has geatly effected my self esteem. I never questioned if people liked me until I was told that my friends wouldn't unless I talked. I never felt except for who I was. Still to this day I question if people actually like the real me, because I grew up believing that being too shy was unexceptable and wrong. I'm hoping that someone can read my story and say "well, at least I don't have it that bad" or "this is definitly the way we shouldn't go about this". This is a great website. This information is very accurate and useful. Thank you. Added: February 21, 2009
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eileen From: bronx,ny Website: E-mail: sashaleen@aol.com	My daughter as had selective mutism since pre-k ,at first i was told she would come out of her shyness but all teachers and staff always came back to me to ask if something was going on in the home...I took her to get evaluated ...they told me she was suffering from selective mutism and explained what it meant ,then prescribed some meds. its been 6 years now shes been seeing a phychiatrist and a therapist and guess what no results. I am so heartbroken about this because my daughter is now 14 years old and still fears the world .and i fear everyday that goes by my daughter will always live in silence. Added: February 20, 2009
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rachel lewis From: virginia Website: http://lewisfamilyadventures.net E-mail: thelewises2001@yahoo.com	i believe my daughter has this and has had this for most of her life, she will be 3 in march. thanks for providing so much information. i am going to look into getting a formal diagnosis because her symptoms seem to be getting worse. Added: February 17, 2009
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maree From: mccullys gap Website: E-mail: mareec08@hotmail.com	hello, my name is maree, i have a 15yr girl, who has just being diagnosed with selective mutism, autism, and language and intellectual disabilities. her selective mutism is getting worse, where she is only speaking to myself, and her brother jonathan and sister tara. It would be really good to talk to other parents in the same situation as myself. It becomes very lonely when there is no one to help and speak to. Added: February 12, 2009
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B From: Ohio Website: E-mail: infernodragon02@msn.com	SM is a neverending battle I've been fighting for at least 8 years, still undiagnosed. My life is black and shadow. Help your kids before they become me. It has destroyed me completely, taken anything I had left. Added: February 11, 2009
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Pam Thornburg From: fayette co ohio Website: E-mail: mt_pthornbur@mveca.org	I am the parent mentor for our county, I would like information for teachers and parents. Added: February 10, 2009
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robin cash From: clover sc Website: E-mail: egilleland@carolina.rr.com	Private post. Click to view. Added: February 10, 2009
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karla curtis From: St. Thomas, Ontario, Canada Website: E-mail: kbcurtis@rogers.com	Hi, I am responding to Maria B's post on January 16, 2009. My 5 year old son has SM and is in Senior Kindergarten. You need to IMMEDIATELY speak to your daughter's teacher and educate him on SM. Your daughter should not be held back just because she doesn't talk to her teacher. Last year when our son was in Junior Kindergarten and was diagnosed with SM, we immediately began working with him in the classroom just 1 on 1 about 15-20 minutes twice a week just to get him comfortable talking in the classroom. That has progressed over the last year to where he is now whispering to me when another child is present and can hear him talking. He will also speak to me in his normal voice with the teacher right beside me but he won't talk to her. Last year and again this year, we did the testing for the teacher because she couldn't do it because our son wouldn't talk to her. She gave us the papers and when we were having our 1 on 1 time we did the testing while the teacher stood close enough to hear our son talk but where he couldn't see her. When we got his first report card (before his diagnosis) we were devestated when the teacher said he didn't know his numbers, letters and didn't know how to count. I thought, are you kidding me, this 4 year old can count to 100, knows all his letters, numbers and most of the sounds. I went to the school speech pathologist and teacher and asked what I could do to help my son. I didn't wait for them to ask me. You need to get very involved in your daughter's school life, if at all possible, and help her to the best of your ability. As well as working with my son in the classroom, I try to volunteer at last once a month. I have a 10 year old (not SM) and last year we also had him go into the classroom during a recess to see if that would help his brother and it did a little bit. If you would like to know more of what we did/are doing with our son, please provide your email address and I will send you more information. Good Luck. Added: February 1, 2009
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Carla From: Florida Website: E-mail: iceblink@bellsouth.net	I've been fascinated by SM for years...I teach deaf children but also teach Sign Language to hearing children during the summers. One year I had identical twin sisters--both with SM--take my summer signing class. As is the case in many of the comments I read on this site, these girls would whisper to other students in class, but wouldn't communicate verbally with me. Thankfully, they could sign with me, so we communicated that way. There is a novel I just finished about a girl with SM called 'December' by Elizabeth Hartley Winthrop...I wonder if anyone has read it? Added: January 29, 2009

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