Learning About Selective Mutism

Melissa Ottumwa, IA — Mon, 11 Feb 2008 15:39:43 GMT

I was so interested to see this story. I am a Kindergarten Teacher with an advanced degree in Special education. I have known of other students dealing with this disorder but until this year have never had a student in my own classroom. It is a very interesting, challenging and frustrating thing to deal with for the child, parents and educators. We all are struggling to find ways to reduce this child's anxiety so he will make attempts to communicate with us. At this point he will rarely attempt nonverbal communication such as gesturing which makes it very difficult to assess what he is learning or what he needs.

Learning About Selective Mutism

Vi147, Blytheville, AR — Mon, 11 Feb 2008 15:48:26 GMT

I have a 16 year old who has this condition. We first noticed it when she was 2yrs old. At home she talks nonstop, tells jokes, a joy to be around. In public she rarely speaks. She is a "A" student taking avanced placement classes in school. When we first noticed her condition she would not speak to strangers at all. Now at 16 she will answer her teachers, her pastor, and speak one word maybe two word sentences to her friends. And she interacts with others with jestures and smiles.

Learning About Selective Mutism

Erika Brillon, Westport, MA — Mon, 11 Feb 2008 15:49:59 GMT

HI!
My daughter is 8 years old and we didn't know about "selective mutism" until about 2 years ago. Her pedi just kept telling us she is shy and will grow out of it. She only talks to a handful of people. At home she just a normal 8 year old. In public, at school, she looks like a normal kid, playing with other kids, laughing, having a good ole' time except she doesn't speak to them...no sound at all. We finally saw a show on tv about selective mutism that described her perfectly. Right away, I brought her in to her doctor and told him this is what's wrong w/ my daughter get her help now! She has been in therapy for some time now and is on Prozac. She has come a long way, she is now "mouthing" words to her teachers and is whispering to a friend she never talked to before. She still has a long way to go, it is a long process which is why, if this is a concern to you, get help right away!!! I still think that if this disorder was talked about more, she would've gotten help in preschool and she'd be talking by now. YOU ARE NOT HELPING YOUR CHILD THINKING HE OR SHE WILL GROW OUT OF IT...THEY WON'T..PLEASE GET A THERAPIST AS SOON AS YOU CAN..THEY WILL ONLY BENEFIT FROM IT!!

Learning About Selective Mutism

Peggy Oitker, Nixa, MO — Mon, 11 Feb 2008 16:00:41 GMT

My daughter was diagnosed with selective mutism a few years ago. Looking back, having learned about selective mutism, I see signs of it early on. From early on she would wait until she was comfortable with people before she would talk to them. After her father died when she was 4 years old she went silent for over a year and a half. She was silent in Kindergarten and first grade. She spoke to me (her mother), her sister, and her brother-in-law. That's all. She was actually a wonder with words, in private. It broke my heart to see her pain. It was obvious to me that she desperately wanted to talk to others, but couldn't. People didn't understand even when I tried to explain it. Well meaning friends accused her of being rude, which only added to my daughter's anxiety. She was seeing a therapist for play therapy, and she enjoyed the interaction, as she enjoyed interaction with people in general, but she was not making any progress. After more than a year and a half of silence, her grown sister found a way to help her. It was Christmas vacation, and my young daughter was spending a few days with her older sister and her family. Some friends (that my youngest knew) came over and everyone started playing the word game Taboo! My oldest daughter suggested a way for her younger sister to play with everyone: she told her to whisper in their ear "hello," which seemed to break the ice, then they played the game, with my young daughter playing along with no anxiety. Part of her anxiety had to do with her not wanting people to say, "You talked!" By playing the game, her friends were busy trying to guess the right word and didn't comment when she spoke. After playing the game, my daughter would feel comfortable talking to the people she played with. We started playing the game with everyone we knew, and before long, she didn't know who she'd played with and who she didn't, and she was talking to everyone! Today she is a very chatty 12 year old girl. No one would know she ever had a problem. She still gets quiet when she is upset, but she has no problem participating in school, she is active in choir, drama club, and media club at schol. She's an awesome girl and I marvel at her!

Learning About Selective Mutism

Deana Alldredge — Mon, 11 Feb 2008 16:11:21 GMT

My daughter was diagnosed with selective mutism when she was she was three. On Friday Feb. 15 she will be 13 years old. We've have had quite a road with this. I have much to offer on this subject. I will give it briefly but I can give even more helpful info if someone chooses to contact me.

Basically, she was diagnosed the same way Jacob was but she was in preschool. I remember taking video tape into many teachers and school staff so they could see what a wonderful and happy child she was at home. They couldn't believe it. I would even video tape her reading at home so the teachers could evaluate her reading abilities since she couldn't at school. We were able to find a psychiatrist who had treated this disorder in the past. The most successful medication is an anti-depressant. It was extremely difficult to put my small child on a medication like this but it worked. She began to whisper to her teacher only in Kindergarten and in 2nd grade spoke out loud for the first time at school. We tried very hard not to pressure her but encourage her and reward her. This wasn't about choosing not to talk - she couldn't. This is classified as a severe anxiety disorder. She has made much progress over the years. There was a time, she was in ballet and would perform on stage (of course talking wasn't part of that) but she still got up in front of people and performed. She also played soccer and did well. Later in school (around 5th grade) she started to actually raise her hand and fully participate in classroom discussion. She was and still is behind socially. Is she cured? No. For my daughter, the anxiety simply took on other forms. She still deals with this everyday. Talking isn't as much of a problem but she still has severe anxiety. She worries about everything. She just had chair challenges in her 7th grade band class, she got so nervous that her fingers were shaking so bad she could not play her flute. She then went into the bathroom and vomited. That has been another issue for her. In first grade, she was diagnosed with anxiety induced stomach problems. If she worries too much, she gets very sick and sometimes vomits. She has been hospitalized many times for this because she cannot reverse the affects and then becomes dehydrated and has to have IV's and on occasion has to be given a muscle relaxer to force the anxiety to be calmer. It becomes a domino effect. She is a great girl with many accomplishments. She knows she has this and tries to overcome the obstacles she faces. The doctor on your show talked about not tracking some of these kids and knowing older kids with this to know if this goes away or gets better. I obviously have much to offer on this and would love to help others. Would it be helpful to do a story on an older child and give some of these parents some hope that at least the mutism part of this disorder can get better? Let me know if we can help. There is very little awareness on this. The schools MUST handle this correctly or they can make it worse. We worked closely with schools and we still do in 7th grade. When my daughter was newly diagnosed with this, Barbara Walters with 20/20 did a story on this and interviewed a young teenage girl. It was very helpful for us. I still have the video tape of that and took it to schools to help educate the people who were caring for her at school.
Thank you for doing this story again. I haven't seen coverage on it in 10 years. Again, would love to help these parents with little hope. Especially if any of them are dealing with GI problems as a result and don't know it is the anxiety. It took more than 2 years to find that out for us.
Thanks.

Learning About Selective Mutism

Karen Stockmal, Exton, Pennsylvania — Mon, 11 Feb 2008 16:28:18 GMT

My 5 year old daughter was diagnosed with Selective Mutism at age 3 when she was unable to speak or communicate in her preschool class. Since she spoke non-stop at home, we knew something was not right. I searched "does not talk in preschool" on the internet and found out about SM. We took her to the national expert - Dr. Elisa Shipon-Blum in Jenkintown, PA - who guided us through the steps of helping her first to engage others, and then gradually become able to communicate nonverbally and then verbally. We also used a small dose of prozac which reduced her anxiety enough that she could try communicating. It was a long road of worry and a lot of work, but it paid off. Now in kindergarten, my daughter is no longer mute. She is fully communicative, well-liked by her peers and enjoying life. If you have a child with SM, do not push your child to talk. Get help from a professional. Each child is different and needs an individualized approach. These kids are so easily misunderstood that they can get labeled defiant, stubborn and worse by teachers, family and friends.

Learning About Selective Mutism

Yulia Hancheroff, Seattle, WA — Mon, 11 Feb 2008 16:30:37 GMT

I just watch this on TV, my daughter is 9, she had this condition for 5years, till she turn 8 y.o. We did everything possible to help her, took her to children' phycologist, bring teacher home, record videos, talk about that all the time. Nothing help, we new she wants to talk and she was ready to talk, it just she needs to be comfortable. We sell our house, move to different area, change schools, first day in a new school I was so nerves, we walk in to the class room and new teaches says, what is you name, I was going to answer for my daughter, like I usually do, but my daughter say very calm, "Sasha". Than teacher say you can go and since this day my daughter never has this problem again.
Just want to write this for a parents of a boy on TV. I know he will grow out of his problem, I see him and it EXACTLY what my girl did, it like I went over this again, I want to cry watching this boy.I know he needs a change but very positive, comfortable change, I know it will be the best for him to talk with everyone with out worry.

Learning About Selective Mutism

Rachel Hanson, Lake Elmo, MN — Mon, 11 Feb 2008 16:42:54 GMT

I suffered from selective mutism when I was a young child. I remember only talking to my parents at home, and then when I was around anyone else, I would not say a word. Not even to my grandparents. I went through preschool, kindergarten, and part of first grade not speaking. This was in the middle 1970's. At that time I don't think we knew it had a name. All I remember is being filled with anxiety. One day in first grade I was called to the front of the class to read what was on the board, and I just started reading it. I don't know why I started talking when I did, but from then on, I spoke to people. I am now in my late 30's. I am still very shy, but doing much better, because I have put myself in situations where I have to communicate, like my job. Thanks for listening.

Learning About Selective Mutism

Stacey Stringer, Ada, OK — Mon, 11 Feb 2008 16:46:14 GMT

I too have a teen who was diagnosed in the 4th grade with SM. We have been down the bumpy road as well. Her Kindergarten teacher all but accused us of abusing her. I had done much research before I ran across Dr. Shipon-Blum. After an in depth assessment with her we came to the diagnosis. Molly started using Prozac at that time and also had put in force an IEP at the school. Please get the information to the teachers if your child has this anxiety. Molly still takes the Prozac and we have since moved. The amazing outcome is that when we moved she began to talk to anyone who did not previously know that she has this anxiety. She still won't talk to any relatives outside the home, but other than that no one would ever know she has a problem. My main peice of advice, please don't let anyone try to "force" your child to speak. That makes things much, much worse. I would be happy to speak with anyone who would like to know more.

Learning About Selective Mutism

Mark Hancheroff — Mon, 11 Feb 2008 16:46:54 GMT

Our daughter Sasha was diagnosed with selective mutism in preschool, and was typical for that case. Talking at home, but quiet at school. No talking with freinds, teachers, or anyone. She even stopped talking to the Grandparents and other family. We eventually got her to a phychiatrist who she was able to talk with, and he gave us our first bit of good help. We were against getting her on medication unless there was no other choice, and the doctor agreed. instead he was able to teach her coping skills for anxiety that she was able to understand at her age (6 then).
With this in hand she started to show signs of improvement. She first started opening up at Gymnastics classes, talkuing with coaches and kids there. Then she began opening up with family again, and finally, we moved across town, to a new school and she had her big breakthrough. Here is what I wroth about that at the time:

"Along with our move, my daughter started at a new school. We have been pretty nervous about this, as she has Selective Mutism. The short form of that is that it is an anxiety disorder that means that she cannot speak in some situations. Specifically, she is in second grade, but has not spoken a single word at school since preschool. Not. One. Word.

She talks fine everywhere else, but it is a situational disorder.

So when we filled out the paperwork for the new school, we added all the information about this and explained to the teacher what to expect. On her first day, we walked her in and introduced her to her teacher. Her teacher looked at her, smiled, and asked her her name.

She replied, "Sasha"

That was the first word she had ever spoken at school. I almost cried. She kept answering the teacher's questions while we were there. After we left, she was talking to the kids in class, and after class.

We had visited psychologists for months to help her with coping skills, and t see what to do, but changing the environment was the breakthrough. You begin to think a situation is hopless, until something gives you hope. In this case, it came to us because of other actions."

We can't be sure that those kind of skills and environment changes work for everyone, but it worked well for her, and us.

Learning About Selective Mutism

Panas, Albuquerque, Nm — Mon, 11 Feb 2008 16:48:06 GMT

My child was diagnosed with selective mutism. There is many things I wished you would have stated. Most children who have selective mutism are smarter then their colleges the same age. When their speech locks up they can become like they are on a tall building. They want to scream but nothing comes out. Every day is stressful to go to school with a stomach ache. They get sweaty palms and may shake.
With care they learn to overcome it. Without knowledge they are harrased by teachers and pupils. I am lucky to have such a good school who works with us. I was lucky to find out when she was in Kindergarden to make progress by 2nd grade. My child is top of her class earning highest grades except in communications. Her reading levels are higher then her fellow students. She is a science wizz earning top marks on the science fair. They really think differently and are so aware of their surroundings they notice every detail.

Learning About Selective Mutism

K. Peterson, Seattle, Wash. — Mon, 11 Feb 2008 16:48:33 GMT

Our granddaughter (we have raised since birth) will be 20 years old on Feb. 18th, she too has had a long struggle with this condition and until 3 years undiagnosed. She repeated kindergarten because she hid under the table the whole first time (the teacher only "mentioned" it to me in April of that school year!!). She has had a many challenges due to her birth circumstances but what we now wonder what was her true diagnosis? She suffers such severe anxiety disorder. We worry that she will never be able to function well enough to be self-sufficient. We are now in our late 60's and worry what will happen to her. She is such a talented young woman but not able to follow through on a job or school (although now in community college, she is much more successful, taking one class at a time, than she has been at anything). She has had many problems with relationships. She gives her whole heart to her boyfriends but feels she cannot relate to other girls, she finally has one girlfriend she can hang out with once in a while. We are hopeful she will find her place in this world and that the world will appreciate this beautiful and really interesting young woman.

Learning About Selective Mutism

Laura Enterline, Tucson, AZ — Mon, 11 Feb 2008 16:55:29 GMT

My 7 year old granddaughter was diagnosed with SM when she started preschool at 4 years old. She would not talk to anyone in class, including the teachers. Before starting school, we noticed she was shy with strangers away from her home. When we ran into children she knew away from home, she would "freeze". She was always comfortable, animated and talkative at home or at her grandparents' homes. When she started Kindergarten and still wouldn't talk in class, the doctors wanted to put her on medication. It was frustrating because we knew that she was incredibly intelligent, but the school didn't know that because she wouldn't communicate. As her grandmother, I wanted her to get the medication, as I hated to see her suffer like that. However, my son, her father, insisted that she could work her way out of it. Sure enough, she is in the second semester of first grade now and is talking in class like any first grader...raises her hand to volunteer to answer questions in front of the class, plays with other students..."normal." When she was in kindergarten, she had many IEPs, which allowed trained professionals to work with her one-on-one. She also attended summer school. She is down to one-half hour a week being pulled out of the classroom now. My granddaughter did a lot of it on her own....she is always very determined to conquer her fears. I'm very proud of her and how far she has come. I'm also happy that she did it without medication. The first step...diagnosis. Good luck to everyone who has a child with this disorder. It can be corrected.

Learning About Selective Mutism

Stacy Heintz, Sammamish, WA — Mon, 11 Feb 2008 17:01:24 GMT

I am certain my 16 year old son has this "disorder". He is like two different people. At home completely normal, but in social situations and at school the kid is lost. He has it all, very funny, fabulous looking, athletically gifted in numerous sports, very bright with all A's and couple of B's thrown in. Doesn't drink or do drugs. Yet he would sooner die than go to a dance, or a school game, etc. He is so shy he can't even talk to his aunts/uncles & cousins at holiday gatherings without extreme effort. It kills his father and me to watch him struggle so. We only have a year and a half and he will be going to college. His pediatrician said he would "grow out of it", so do past shy friends of mine, while in some ways he seems better, he is still very far from having the social skills to even handle a job or college entrance interview. Then other well intentioned people tell me he needs therapy or medication. The thought of putting him on medication really scares me due to possible side effects. He is missing what is supposed to be the best carefree years of his life. I welcome all ideas.

Learning About Selective Mutism

Teresa Puyallup WA — Mon, 11 Feb 2008 17:03:29 GMT

I have a six year old son who was diagnosed with seperation anxiety disorder and selective mutism in November of last year. The therapist really didn't have anything in the way of a treatment plan. So we had her refer us to a behavior specialist. This just happened last week within 15 miutes she said she wanted to set him up with an autism consult. I finally feel we are on the right path. As we are getting started is there anything that you other parents have learned that could benefit us.

Learning About Selective Mutism

Carol, California — Mon, 11 Feb 2008 17:12:09 GMT

My daughter is 9 years and has selective mutism. The story shown this morning was the exact image of where she was at 7 years old. Two years ago, we moved and changed school and she started talking. I remember her saying "well nobody knows me at the new school, I will talk". She is still an anxious child but at least we have progressed forward and she now speaks in front of her classroom. This is for us an amazing accomplishment. There is still a lot of work to be done but I am staying positive,I will work on helping my child feel less anxious,it is an ever going process.

Learning About Selective Mutism

Tina Fonteneau Lund — Mon, 11 Feb 2008 17:18:05 GMT

I was so stunned to see this story on the Today show this morning. For years I dealt with a school system and court system that instead of trying to find the answers to my daughter's problem, accused me of 'abusing' her. Although there was never any evidence to this otherwise, they assumed that because of her appearance of 'being scared' that it must be out of fear from her parents. Note that I have three other children and NONE of them display any social disorders at all. They are all quite the opposite. I went through an awful divorce a few years back and although my husband had witnessed our daughter going through the same characteristics as mentioned in the piece, and my advocacy for a clear diagnosis-he used the school's opinion in order to gain custody of her and the other children. He has since fled with them to the other coast and unfortunately my daughter will not get the help she needs for this disorder as long as he retains custody. I hope that no one else has to go through what I and my children have. This illness just like many others is misunderstood and not well publicized. More education is needed on the school and social work levels on this topic.

Learning About Selective Mutism

Suzette R. Price, R.M.T., Scott City, Kansas — Mon, 11 Feb 2008 17:31:38 GMT

Yes, selective mutism is more common than we have previously thought! I am a music therapist working in rural Western Kansas, and I have firsthand been witness to the positive and QUICK success that Music Therapy can have with this disorder! Music can reach these children and increase their comfort level when nothing else can! I am definitely biased, but I would recommend a Music Therapist (go to musictherapy.org) to work with your child. Thanks!

Learning About Selective Mutism

Ellen, Atlanta, Georgia — Mon, 11 Feb 2008 17:34:42 GMT

Boy this sounds like me when I was growing up! I am in my late 30's and have suffered from extreme shyness, insecurity and anxiety most of my early life, studied child psychology in college and have been working on my shyness since then. I have always been very quiet when first meeting others, until I felt comfortable, including when we visited other family menbers. There were some times when groups of acquaintences would ask me if I ever spoke at all. While others one-on-one would make me at ease, and I could be myself. I hated dating, being interviewed tormented me. Today, I have a flirtacious and silly disposition with close friends. However, I continue to avoid speaking or appearing in large groups, but am finally confident in smaller groups. Please let me know if I can participate in a psychological study, so I can help the young children suffering from this today. I have often wanted to write a book on the subject.

Learning About Selective Mutism

Theresa LeClair Harrisville, RI — Mon, 11 Feb 2008 17:35:40 GMT

My daughter now 9, was diagnosed when she was 5. It was a very frustrating thing for us as parents to watch her, when people would talk to her or ask her questions you could just see in her face how uncomfortable she was. At parties we would eat cake in a seperate room from the other kids. She would talk at home freely with her sister, mom and dad but as soon as someone else came into the home she was silent. When she started kindergarten is when i realized this was more then shyness, She was twirling her hair all the time, biting her nails till they bled. At that point i had her evaluated and the diagnosis was Selective Mutism. Life has been difficult especially when she has to be treated by a new doctor, they'll ask her where the pain is or whatever and there is no response. I have felt very helpless, not knowing what to do to help this poor child. Over time we have gotten her involved in different activities in which she would have contact with others and slowly she has come out, Teachers still say how extremely quiet she is but she now has friendships and i am hoping she will just continue to improve. It would be more helpful if more people knew and understood the condition so i thank you for airing this.

Learning About Selective Mutism

Lori Irelan Powell, Ohio — Mon, 11 Feb 2008 17:55:40 GMT

I have 2 children that were diagnosed around the age of 5. My daughter was in her third year of preschool when her teacher suggested she be evauluated for something called Selective Mutism. Her father and I just thought she was really shy because we both were as kids. She was chatty and silly at home but outside of our home, even with her best friends and grandparents, there was no eye contact - she looked down at the floor and would never speak a word...not even to me, if someone else was watching. It was obvious that she wanted so desperately to do things like playing with her peers and show and tell at school but just couldn't and didn't know why. She would tape record her show and tell item at home and have her teacher push play, while she stood outside the classroom. She would stand by herself in a corner at recess - it was heartbreaking. We set up an appointment with a psychiatrist and she was put on Lexapro for anxiety. Within the next couple of weeks, although she was still using the recorder, she was comfortable enough to stay IN the room during show and tell. Approximately 4 weeks later the door burst open at the end of the preschool day and all of the kids ran out screaming "Jordyn talked today!" It was amazing! Both my children, who are now 9 and 7 are still on the quiet side at school (that's not a bad thing) but are leading normal, happy lives like all children should.

Learning About Selective Mutism

Kim Ludlow, Mount Laurel, NJ — Mon, 11 Feb 2008 17:57:58 GMT

My daughter, Marisa, was diagnosed with SM at age four, although we noticed symptoms of anxiety from infancy. By the time she could talk, she would not speak to anyone outside our house, including some relatives. Marisa is now 10 years old...and this has been a long road for the entire family. She has come so far with much help from her doctor, our family, and medication. She is still very reserved, but has a lot of friends and will now actually raise her hand in school to answer a question. It has taken a lot of understanding with the school and our family to help Marisa find a comfortable level to live in. She now excels in school, plays sport and enjoys taking clarinet lessons. We still struggle on some days with various issues...but they all seem to come back to one common thread...being comfortable. Thank you for bringing Selective Mutism out for others to understand. I still have many people who insist my daughter is just shy...they have no idea...and it becomes even harder now that she does speak. People think she is 'cured'...they do not realize that she is still taking medication to help her with anxiety issues and that she still struggles every day with this. We are very confident that she will continue to feel more and more comfortable each day.

Learning About Selective Mutism

catherine ohearn chicago illinois — Mon, 11 Feb 2008 18:00:05 GMT

Thank you so much for this story. I can't thank the Hanna's enough for telling their story. My 5 year old daughter was diagnosed with selective mutism about a two months ago. When she began preschool she whisphered quietly to one friend in class; she didn't speak with anyone else while at school. Her teacher asked me several times whether she spoke at home. I told the teacher that she spoke normally at home and normally with a many kids on our block. Still, as I watched my daughter in school, I new something was different. I was shy and my oldest is little shy, so I wasn't at all surprised that my daughter was quiet, but it was more than that. She had this froozen look at school that I had never seen at home. She looked scared. Even before I knew about selective mutism, I often said that when my daughter is comfortable, she talks alot--just help her feel comfortable. For some reason, my daughter's preschool teacher felt my daughter should be talking. Sometime last March, she pointly questioned her about a picture she had drawn to the extent my daughter cried and then clenched her fists. The teacher then asked if my daughter often got angry at home. She doesn't. My daughter is now in pre-K and at a different school. She has not spoken a word in school since the day she was so inapproprialy pushed to talk. I had heard someone in the neighborhood talk and a boy in a nearby school who didn't speak in school and she used the term selective mutism. After silent two months in pre-k, I sought out a therapist with a speciality in seclective mutism. Most parents, teachers, and social workers, do not know about selectism mustism and seem to have a hard time understanding it when I try to explain. My daughter is very bright, happy child, she loves to socialize with her neighborhood friends, loves her many activities outside of school, and she gets up on the stage for ballet and violin recitals and enjoys it. She talks and talks at home and many other places. She just can't yet talk in certain situations-- mainly school. We now have a wonderful caring teacher who understands. ( She is the one who heard you were doing a story on sm). I am confident my daughter can overcome her anxiety. It was very helpful to read the comments by other families I wish there was a forum so that we could tallk more with eachother. Again, thank you so very much for educating people about selective mutism.

Learning About Selective Mutism

Esther Hise — Mon, 11 Feb 2008 18:00:49 GMT

Our grandson, now 9 years old, has never spoken to a teacher or another student. Talks only to parents and grandparents. Within the last year has spoken to aunts, uncles and cousins. The schools are not understanding at all and this year my daughter-in-law has kept him home to school him. He is such an intelligent child - practically memorizes everything he reads. We only hope that things get better.

Learning About Selective Mutism

Grew out of it, Tennessee — Mon, 11 Feb 2008 18:01:57 GMT

Like the previous post from Rachel Hansen, I too suffered from this as a child. I was very shy from the beginning, but the silence--except around my immedidate family and one neighbor child--came from a snowball effect of anxiety. I remember thinking that I really wanted to talk but if I did everyone would notice and make a big deal out of it. It was really just easier to be silent and go with the status quo rather than have a barrage of attention from suddenly speaking. I did eventually "grow out of it", but only by making a conscious decision to start the 6th grade (yes, Kindergarten through 5th grade--I said NOTHING at school) year fresh and just get it all over with the first day. It was very frightening, but I did it and remember feeling so free... and so proud. I am now almost 40 and still a little shy inside, but I have a career that requires me to be outspoken and I fake it pretty well! :)

Learning About Selective Mutism

Dottie, Punxsutawney, PA — Mon, 11 Feb 2008 18:09:43 GMT

I am a speech/language pathologist, and had a student who had selective mutism. He was in the middle school when I met him. He never spoke in elementary school, but would speak outside the school. I had success with specific objectives, and therapy was successful in getting him to communicate at school. I would be happy to share my techniques with anyone who is interested. Because of confidentialiaty I can not give the students name, but therapy can work!

Learning About Selective Mutism

Jane Anderson, Daytona Beach, FL — Mon, 11 Feb 2008 18:13:21 GMT

In 1975, I was in the sixth grade. One of my classmates had a sister in first grade who would not speak or gesture in class. She was very withdrawn, made no eye contact, head down and a protective stance (rounded shoulders). She had good grades, but did not participate in any activities.

Our elementary school started a new program that year. The teachers from the first and sixth grades worked together pairing each sixth grader with a "little sister" or "little brother" from the first grade.

We worked together with our "assigned sibling" every Friday afternoon on an activity. Writing an essay, reading to each other, crafts etc. Some weeks we would meet in the sixth grader's classroom, sometimes the first grader's classroom, sometimes we worked scattered on the floor in hallways.

Since I spent a lot of time with my classmate and her sister at home, I was paired up with Carol. She was very talkative at home. I had no interaction with Carol at school prior to this program, I had no idea she was not talking. The teacher felt that she would be more comfortable with someone she knew outside of school.

I worked one on one with Carol all year. Never making a big deal out of her situation.

The first break I got was the first time I went to her classroom. I had forgotten how short the desks were and rammed my knee into the desk. Carol thought that was very funny and laughed. The first time she had made any sound.

Next we wrote a story together. I got her to nod and shake her head in response to my questions.

After a few months, she began nodding and shaking her head for others and she began whispering in my ear when we were isolated for our peers.

It took most of the school year, but before the year was up, her teacher couldn't shut her up.

I'll always remember Carol and our year together, as this was the first time I truly had a profound impact on someone else's life and future.

Until this morning, I thought Carol was an isolated case. I had no idea that the condition had a name or that there are so many children are affected by this. So to all who are dealing with this personally or know someone who has Selective Mutism, there is hope.

Learning About Selective Mutism

Tracy Katzbek, South Windsor, CT — Mon, 11 Feb 2008 18:28:39 GMT

My daughter is 7 and has had similar symptoms. It's tiring as a parent to hear that it is just shyness when it is clearly more extreme than that. She is finally speaking in her 2nd grade class but has taken on other symptoms. She sees a behavioral therapist to learn coping mechanisms for her anxiety. I found a great book that helped tremendously, Freeing Your Child from Anxiety by Tamar E. Chansky, PH.D It is a continuous struggle for her everyday. As a parent, my main goal is to just help her live a comfortable life.

Learning About Selective Mutism

N. Fleming, Atlanta, Georgia — Mon, 11 Feb 2008 18:34:49 GMT

My son has suffered with selective mutism since 2nd or 3rd grade, but was only diagnosed in the past few months and he is now in 6th grade. He is the perfect child at home. He's very talkative and enjoys video games and being on the computer. We have never had any kind of discipline problem with him. He always wants to do the right thing. I never have to worry about him doing anything he shouldn't. When we leave home, everything changes. When he's out with me he hides behind me and if anyone ever speaks to him, whether he knows them or not, you can see the fear take hold. He looks so frightened and can not speak. Once in third grade, they called me to the school because they thought he was having a convulsion of some type, but it was his fear and anxiety causing him to shake all over. Sometimes he will try to scratch himself on his arms and face when he gets really anxious. He will speak when he feels that he has to at school when the teachers ask him a direct question, but he never speaks to the other kids. His grades suffer because he's too frightened to ask for directions or help. We changed to a small christian school this year, hoping that would help, but we really haven't seen a difference. He doesn't have any friends. That is so sad to me. Every child should have a best friend. The doctor has started him on an anti-depressant and therapy. I hope this will help, I want the world to see the great kid that I know he is. I kept hoping that he would grow out of this, but it only seems to get worse. If anyone knows of any other treamtment, I would love to hear about it.

Learning About Selective Mutism

Stephanie Neal, Dallas, Texas — Mon, 11 Feb 2008 18:35:22 GMT

I just want to thank the Today Show for airing this story. Many people need to be aware of this disorder and be prepared to correctly handle the situation when they meet a child/teenager/adult who is suffering from it. I have a 14 year old daughter with SM. She was diagnosed in kindergarten. She had made only 2-3 real friends in her lifetime that she has been able to verbally communicate with. She still very much struggles to talk to family members outside the home. She didn't speak in school (and only to the teachers then) until the 6th grade and even then it wasn't consistent and when the other kids noticed she was quiet, they began asking her over and over why she didn't talk until she eventually stopped talking to the teachers again. She suggested going to a new school so we moved and this helped some. She is a freshman now and is able to talk to most of her teachers but still no other students. She will communicate with them via myspace or text messaging and she has explained to some of them why she is so quiet. She doesn't hate school but does wish that she was able to make friends. She often claims to be very lonely. She is taking prozac and this seems to be helping a little bit and I am currently looking for a psychologist in our area who is familiar enough with the disorder to put together a behavioral plan. Like many parents, I could go on and on about the trials she and I have gone through. I hope that the public takes interest in this disorder and helps spread the word so that some of the burden is lifted from the parents who have to continuously educate those who come in contact with thier child. I started by sending the link to this story to all of my daughters teachers and counselors.

Learning About Selective Mutism

J. Mines PT, Jersey City, NJ — Mon, 11 Feb 2008 18:46:12 GMT

It has been heartbreaking to read of all these sad, worried children and parents seeking solutions to this problem. I am a Physical Therapist, and I do volunteer work with my Therapy Dog. I have found people--especially children--will speak to a dog rather than to an adult. If some of these children can have a service dog at school, it may help them bridge that social/emotional gap. They have to speak to their dog, and allow that speech to help open a path to normal interaction with their peers. Just a suggestion...

Learning About Selective Mutism

Amy Hernandez, Enumclaw, WA — Mon, 11 Feb 2008 18:51:57 GMT

It is so nice to see Selective Mutism getting some attention. My daughter was diagnosed with Selective Mutism at the age of 5 but this was after months of just not knowing what was going on with her. People kept saying she was just shy and would grow out of it but I knew that was not it. I was so happy when I came across information on Selective Mutism and could begin to help her. It took time, therapy and the help of a wonderful teacher for her to become to the world the person she always was with us in private--funny, outgoing, creative and very talkative. She is now 14 and you would never know that she once only spoke to 5 people total because as she said--the words would freeze in her throat. childhoodanxietynetwork.org is a good website with lots of information for those looking for more information on Selective Mutism.

Learning About Selective Mutism

Katrina, Locust Grove, Georgia — Mon, 11 Feb 2008 18:59:54 GMT

I am 33 years old and I did not speak for 2 years from three to five years of age. I only spoke to those who lived in the house with me, which was my parents, one sister, and one brother. I have another brother and sister that I didn’t speak to. My mom said that she took me to a psychiatrist to try to figure out if there was anything wrong. She was told to quit talking for me. I don’t remember a lot of details because I was so young, but I do remember playing with my friends and them begging me to talk to them, and I would just shake my head no. It never interfered with playing with other kids. My parents have always been curious about the reasons for me not talking. When I was three, my mom asked me when was I going to start talking to everyone and I told her when I was four, but held off until I was five. To this day, I still do not like to talk in front of a lot of people. The thought of giving a speech terrifies me.

Learning About Selective Mutism

Kelly Marshall, Flemington WV — Mon, 11 Feb 2008 19:03:44 GMT

I am the mother of a 19 year old son that at the age of 6 was diagnosed with selective mutism. He graduated from high school last year, without ever having said a word to his teachers, classmates and friends throughout his years at school. He managed to play football for six years(2 in middle school and 4 in high school.) He now attends college and although he is very quiet during class, he is adjusting very well. He is currently enrolled in the paramedic program, and volunteers his time as an EMT for the local emergency squad, yes, talking on the radio to dispatch, and talking to patients that he treats, and talking to his co workers on the ambulance. He is my success story, and I am so very proud of him.

Learning About Selective Mutism

Diana Calkins, Indianapolis, IN — Mon, 11 Feb 2008 19:04:32 GMT

This was me when I was in school! My first grade teacher told my parents that I would never be a normal student because I was so shy. I was frequently chastised by my mother for not participating in conversation. I am now 48 years old and no one would believe that I was so very very afraid and shy. But inside I still would rather be a fly on the wall than participate in conversations with people I don't know well. I was amazed to hear this story this morning. It made me feel like I wasn't such a freak after all!

Learning About Selective Mutism

kathleen bishop huntsville alabama — Mon, 11 Feb 2008 19:07:05 GMT

to the parents on the program with the child with selective autism.I already wrote to the producers hoping this would get to you.I'm a 38 yr old married female.I too suffered the great majority of my life with this disorder until I searched mental health treatment.How I wish I would have received help earlier but unforunately for me I was misdiagnosed with being bioplar until I discribed to my family physican what I was going through he then said I had social anxiety and a bell went on in my head and said that's it.I know currently am on a anti-depressant Paxil and it has helped me greatly.I dont think with my situation congnetive or talk therapy would have been enough but with medication I am able to finally be me.Before yes Id interact with family but social situations with school and work I had great trouble.It will only get worse I dropped out of school and wasn't employable .I relied on drugs and alcohol because they were like courage and all the things i wanted to say but couldnt sober and would say when drunk but I was relying on illegal substances when i could just be on a pill that's not addictive versues i became addicted to drugs.I also would attend meetings and wouldnt be able to talk when it was my turn because I was consumed with worry fear anxiety that Id say something stupid aftert the meeting which they say the meeting after the meeting where they encourage people to stay over talk and get to know people no way to scared Id bolt at the door.I lived in such isolation and wondered why did God make me this way.But know on medicine Im a totally different person now i interact with others i feel a part of instead before outside looking in i can share in meetings and after the meetings i actually introduce myself to others and try to get to know others and allow them to get to know me.im just active in the community.Im pertisipant im not just sitting watching everything go on around me.I really like life.My voice one voice is heard and I want that kid to feel like Im feelI used to have a stigma about taking medicine I fought it for a long time plus you here people commit that if you were praying harder like you wouldnt need medicine but when you get desperate enough medicine looks like a good alter and now im so glad i chose it i only wish i had sooner.this kid is only 7 early detection proper meds this kid for the majority of his life have a happy one

Learning About Selective Mutism

Susan, Tenneessee — Mon, 11 Feb 2008 19:10:09 GMT

I am a Speech Pathologist and would like to get in touch with Dottie for techniques and ideas. How can I do this?

Learning About Selective Mutism

Kim Warren, Delran, New Jersey — Mon, 11 Feb 2008 19:11:40 GMT

I was very happy to hear that this show was being aired. My daughter, Julia is diagnosed with selective mutism. We first noticed that she wouldn't talk to anyone outside of my immediate family when she was about three. Her preschool thought that something horrible had happened to her and that was why she wouldn't talk. I tried to explain the disorder, but they didn't believe it. They said they had never heard of anything like that before! We medicated her when she was four (almost five) because we didn't want the school to diagnose her with a learning disability. We knew that she didn't have one, but thought because she didn't use any expressive language, they would think that she didn't have any. Two weeks after being on the medication, she was talking to a couple of her friends at preschool. We were thrilled. Now at seven years old, she is talking to almost everyone. We do have set backs with anxiety every once in a while. But, it is so comforting to know that she is not as anxious about doing everyday normal things. I am pretty sure she will be medicated for life, however it is a VERY small price to pay for her own freedoms! We are so proud of her and her accomplishments. Amazingly, she is a competitive gymnast. She has not a fear in the world when she is doing her sport. It is a wonderful outlet for her and she loves it. If someone had told me when she was three that she would be doing that, I would have never believed them!

Learning About Selective Mutism

Enlightened in CT — Mon, 11 Feb 2008 19:20:15 GMT

I am so thankful to NBC and everyone who has written in. I have never heard of this disorder until now, but my story mimics many of those above, though not quite so profoundly. My almost 8 year old daughter is delightful, smart, funny...but most have to just take my word for it. She does have several friends, and will speak to them and sometimes the teacher at school, but in general if another person speaks to her or asks a question, she just turns away. She would rather not eat than to order something at a reataurant. When her coach says "Good Game" she cannot even say thanks, and can barely shake her head to answer yes/no questions. If the family goes to a party, she essentially tattoos herself to me and doesn't speak to anyone, unless there is a child there that she knows very well, and even then they have to leave the room to go play together, and will clam up if an adult comes in to check on them. I have been so frustrated with this, thinking that it was just shyness or even rudeness, that I have yelled at her and told her she needs to "get over it." I am realizing that it doesn't seem to be in her control at all. I'm not sure if this is SM, on the spectrum of SM, or just being painfully shy, but I'm glad to know that she's not alone, and that help is out there.

Learning About Selective Mutism

Stephanie Smyth Newport, Rhode Island — Mon, 11 Feb 2008 19:42:55 GMT

I come from a family of 5 kids, my youngest brother is 22 and has Down Syndrome. He also has selective mutism. I was reading about Jacob Hanna and his struggles with selective mutism outside the home. My brother Greg has more struggles with selective mutism with my family. His speech is very limited but when he does speak it's usually outside the home at work and with his special needs assistant. It's been difficult to figure out why he doesn't talk when he's with our family, whether it's because he's the youngest and we've pretty much done everything for him or if it's maybe a situation of he doesn't know where to fit into the family dynamics. He is seeing a therapist which has been a great help to him. But if anyone has heard of a similar situation please let me know. Your help would be greatly appreciated.

Learning About Selective Mutism

Annie M. — Mon, 11 Feb 2008 19:45:30 GMT

I am 40 years old; when I was Jacob's age, I shared almost exactly the same "symptoms" as he has, so I suppose I had selective mutism. Back then, they didn't have a name for what I did. I was simply "Annie doesn't talk" when we were out of the house.

I just want to say to all you parents out there to please don't give up hope. I applaud how the Hanna's are handling everything. By encouraging him to get to a comfort level slowly, rather than forcing him to speak or believing that insisting that he speak will work, I think they will find that slowly, as it was with me, he will build up the number of people he speaks with.

I remember so vividly being in the situations where people would expect me to talk and the conversations I had to them in my head. I used to hate when teachers would ask a question and, when they got no reply, would say,"I'm waiting!!!" I remember thinking, even as a 2nd grader, "Well you can wait all day -- do you really think I'm going to answer?"

I actually had to go to speech class because I wouldn't talk (it was the mid-70s), but my patient teacher set small, simple goals for me. Like just saying "hello" to my teacher, then "hello Sister Veronica" (Catholic school!) and so on. Manageable little bites over time.

Don't give up hope!

Learning About Selective Mutism

maria, Chicago, Illinois — Mon, 11 Feb 2008 19:53:25 GMT

Thank you so much for running this story. I have a 3 year old that speaks at home a lot, but not in public. At school her teachers asked her older brothers if she knew how to talk. I thought it was due to shyness, I am shy and my oldest is a bit shy. But I been worried because its February and she is still not talking in school, or in crowded places. Even when we have parties at home she acts like she doesn't know anybody. I am glad I got to see this because now I can get her the help she needs.

Learning About Selective Mutism

Katie O'Brien, Silver Spring, Maryland — Mon, 11 Feb 2008 19:57:20 GMT

My daughter is 17 now, oh the struggles, the heartbreak, the teachers I struggled with who said, why can't she just speak up. I didn't want it to be common knowledge, I didn't want her singled out and treated like a delicate flower. Always being the tiniest in any situation put the attention on her already.

There is such hope. I actually diagnosed my daughter myself after tons of research. Having a Dad who, after reading the info, confessed that it described him exactly.

I made my own treatment plan, set goals for my daughter each year. She had no idea. It starts with a simple "Honey, we know you're uncomfortable, but you have to at least say "please, thank you, yes & no". We don't want anyone to perceive you as rude in anyway. That's the start. I picked her sports very carefully, a sport where she can shine individually but to also experience being part of a team. Never letting anyone rush her at family events, giving her 30 minutes to get comfortable with the atmosphere. Eliminating any stressors that could come up during the day, like always picking out her clothes, doing her hair, packing her lunch. One less thing to worry about during the school day. Taking turns on the phone (after age 8) planning play dates.

I believe always, always step in when you have to including teachers, principals, friends & family.

I really could go on and on. At 17 my daughter has lettered in 4 activities, had 2 starring roles in theater in HS, member of NHS, has 2 theater schlolarship opportunities. Not to mention all the trophies and awards from age 8 to 17.

Did she struggle. You betcha. Did I have to march up to school more than a few times because of insensitive teachers, you betcha. Our children are misunderstood in so many ways. I always say I have one girl in this world, and 1 boy, I am their biggest cheerleader and advocate and I pay taxes, we have to send our kids to school and darnit the school system works for me. I won't tolerate meaness and cruelty from people who don't take the time to first be kind to every child no matter what.

I was never adverse to outside help, but I truly believed I could do the job best. One thing the kids hate is unwanted attention and being singled out. My daughter at 10, when it was suggested she see a child psychologist for emotional ticks & other things, said "Mom I just want to be a normal 10 year old girl". I said of course you are, we'll work on the ticks and whatever else we need to and no one will know.

There's such joy for her and her future. I'll always be where she needs me, when she needs me and that in itself makes her feel secure and safe.

Katie, Maryland

Learning About Selective Mutism

Caring Mom, Oakville, Ontario — Mon, 11 Feb 2008 20:16:16 GMT

My son has selective mutism and is 4 years...looking back he had it early on. We just never knew what it was. If there is anyone in Ontario, Canada who is interested in finding out more about this, McMaster Hospital-Chedoke campus has an excellent Selective Mutism program run by Dr. Angela McHolm. Just contact the hospital and ask for the clinic for more information.

Learning About Selective Mutism

LB, MO — Mon, 11 Feb 2008 20:21:00 GMT

Our seven year daughter was diagnosed with Selective Mutism when she was in kindergarten. She would not speak to the teachers or her classmates, except for one little girl. That little girl helped her a lot. Our daughter has had therapy which also has helped tremendously. We did not want to give our 5 year old medication at all. So we we worked with her therapist and through stories that he told and her communicating through us to him, it has helped her come out of her shell. She has not talked with the teachers at her school, but she now feels comfortable talking to her classmates, her friends' parents and her siblings' friends. She has even felt comfortable enough . We see barriers that she has overcome and it improves a little at a time. We are so proud of her. Each time she speaks or tells us she speaks away from us, we try and let her know how proud of her we are. We have watched our daughter go from not saying a word to teachers, grandparents and even our friends.......to chatting in up with my best friend, counting down the days till her grandma visits and playing games with kids in the neighborhood and talking with their parents. Like I tell myself and my husband, we need to be proud of every little step that takes her forward in her challenge. And let me tell you from a parent who never had a clue that such a disorder existed to someone who has read so much on it, that the best thing a parent can do is be proud of them for all the little steps they take. I don't look back, I don't wish for anything different, she is a remarkable girl. She has acknowledged her challenge of being shy and afraid that she even speaks about to her friends. Which is a big step in itself.

Learning About Selective Mutism

Juanita Brewer, Rockledge, FL 32955 — Mon, 11 Feb 2008 20:28:56 GMT

In 1977 I began to teach first grade children. On the first day, the children told me that one student I'll call Nash did not talk. I already knew this, of course, as Nash was repeating first grade because he had not talked in Kindergarten or first grade grade the previous year. However, I told the children that we knew that Nash could talk and did talk at home. I made it a point that we would never say Nash couldn't talk. Nash was a pleasant, sweet child with a lovely smile. He was the middle child in a family of three sons and his brothers often did the talking for him. In the dark ages of 1977 this condition was called elective aphasia and there was very little information on the subject. I was able to obtain a teaching kit from the telephone company that taught children how to use the telephone correctly. We used this in the classroom nearly everyday and Nash eventually took his turn answering the phone. I also phoned Nash at home and asked him various questions regarding the school day and asked him to do little jobs for me (i.e., sharpen pencils, etc.) I also asked the other students to phone him and eventually, very gradually, Nash began to utter a word or two to his friends in the classroom I asked Nash's mom to tape his oral reading at home and to send the tapes to school where we would listen to Nash reading aloud. Then I began to tape the children reading in the classroom, and gradually, without forcing, Nash began to read a sentence or two. It was a year long project to get Nash to interact comfortably with the children and with me, but by May he was speaking more or less normally. I will say that I made sure the classroom was a happy, warm place and that all the children received positive reinforcemnt for their good work. Today Nash is a firefighter and has lived a normal life. I am glad the Today show is bringing this condition to light to help parents and teachers.

Learning About Selective Mutism

Lynn Miani — Mon, 11 Feb 2008 20:39:19 GMT

My daughter is 10 years old. It took us two years to find help for her (she was selectively mute) and it was very difficult to find anyone who was familiar with this disorder. After two years of treatment with a social work and a child psychiatrist and anti-anxiety medicine. She finally spoke for the first time in school this past November. All I can say is you must be PERSISTENT. It took a long time, but all out persistance has paid off!!! Don't ever give up hope!!!!!

Learning About Selective Mutism

Elizabeth , Hattiesburg, MS — Mon, 11 Feb 2008 20:51:04 GMT

I've read many comments from people who have children with selective mutism. However, I suffered from this myself when I was a child, there just wasn't a name for it then. His story was so like my own it's scary. I hope Jacob's parents read this because I want them to know that there is hope for Jacob, just give him time. I, too would only talk at home, and only to my parents and siblings and cousins who were near my own age. The more fuss everyone made over my not talking the further I drew into my shell. So, to hear the report say he is "bizarre" hurts me. Please let Jacob know he is not bizarre. In my case I eventually opened up to one friend at school. Once I felt I gained her trust I opened up to another, etc, in my own time. The more I was pushed the tigher lipped I became. I was lucky to have kind hearted teachers who got me through the first two years of school. By the time I made it to third grade I would speak to my teachers and my other friends, but I still had a hard time with strangers and non-family members for a few more years. And, please do not make a big deal out of it when Jacob does decide it's time to talk - which he will!! Just act like he's been talking all along. It will get better!!

Learning About Selective Mutism

Jill Loomis, Denver CO — Mon, 11 Feb 2008 20:53:16 GMT

Wow! It sounds like I could have written all of the above comments! My son is anxious and has SM which has been improving this year after being paired with a friend to have in his classroom. Having an IEP really helps to make the teachers aware of how to make his learning environment more comfortable. One of the best things I have learned is that MY anxiety was a contributing factor. I thought that by always "preparing him" for what we were going to do would help ease his anxiety, it was having the opposite effect. When I starting changing my behavior to not focus on him not talking, and to be more positive and upbeat, I noticed a change in him. I was putting so much energy into his struggles that I was making it worse. I'm not in denial, I know he still struggles, yet I'm trying to change his thinking into a more positive direction when I can. Physical exercise is SO important for him and me to keep our anxiety low. He's the happiest kid in the world when he's jumping on a trampoline in the OT room at school!

Learning About Selective Mutism

DR.J Shipon — Mon, 11 Feb 2008 20:58:51 GMT

GOOD REPORT THIS MORNING HOWEVER ;Although you defined Selective Mutism.Your program had the wrong expert in the studio.Interviewing a man who obviously does not have the track record for successful treatment that DR Elisa Shionblum has .She has cured hundreds and has a 100% success rate. Why? Because she has dedicated her life to this cause and is the foremost expert in the field .She has literally defined the problem and solutions yet the program just flashed her face for 3 second .How unfair

Learning About Selective Mutism

Michael, St. Louis, MO — Mon, 11 Feb 2008 20:59:18 GMT

My story is very similar to "Grew out of it" in Tennessee-- I didn't talk in school from kindergarten through eight grade, even to my friends. I was a good student, active in band and sports, and the private school I went to accomodated my then-unlabeled condition (except for the occasional crusader). I recall my parents taking me to various counseling sessions, but it was only at school I exhibited the problem. In high school I changed schools and just decided not talking was harder than talking, so from day one that's what I did. That was 30 years ago, and I'm still not the most social person-- I get nervous when I have to get in front of a lot of people, it takes awhile to get to know me well, etc., but I'm happy and consider myself well within the definition of "normal."

I would counsel people who have children with selective mutism to try to avoid giving them drugs, and not to push them too hard to talk. Some of the more positive ideas in the other responses seem very good.

Learning About Selective Mutism

Michelle, Long Island, NY — Mon, 11 Feb 2008 21:31:22 GMT

While I do think it is great that SM is getting some exposure from this segment and the People magazine article, I have to say I was very disappointed in some of Matt Lauer's comments in the promos for the piece - specifically, when he said "How about this for a STRANGE story..." and in referring to the disorder: "This is BIZARRE." I cannot believe how incredibly insensitive, offensive and really appalling the choice of his words were to me. We have a beautiful, wonderful, smart and loving 6 year old boy who has been struggling with this on and off for a several years, and the work still to be done is significant.

While Mr. Lauer was correct in saying it must be frustrating for everyone, most of all it is heartbreaking. I feel as though The Today Show blew a chance to help promote awareness in a positive way and remove the stigma surrounding children/people with social anxieties. Would he use the same language in describing other anxieties/disorders as "strange" and "bizarre"? I hope he doesn't have to hear someone on national television talking about his children in that manner.

Learning About Selective Mutism

J. Mines PT, Jersey City, NJ — Mon, 11 Feb 2008 21:40:57 GMT

Learning About Selective Mutism

Jeanette Pakosinski Wyckoff NJ — Mon, 11 Feb 2008 21:42:56 GMT

My son has Selective Mutism. And since it's genetic we believe the my husband had it too when he was younger. John started off being a normal hapyy outgoing baby. He loved waving to everyone in the store when we went shopping. Then sometime about when we put him into preschool and his grandmother got sick there was a change in him. He would not talk to anyone including relative outside the home. He was completely fine when he was home talking, laughing and playing with his sister. It took me several years and finding a support group to actually figuring what was going on with my son.

It was a srtuggle and sometimes still is. His teacher even mentioned today that he still at times won't speak in class. It took us awhile but between behavior modification, therapy and not pushing him to speak in social situations he has been doing much better. Some kids do need to take medicine for the anxiety but many don't need to. Still there needs to be more awareness on Selective Mutism.

Learning About Selective Mutism

Jennifer, Slidell, LA — Mon, 11 Feb 2008 21:43:56 GMT

My son was diagnosed at age 4 with selective mutism. He would not speak outside the home in all of preschool or his first year of kindegarten. I took him to a specialist at Ochsner Hospital in New Orleans roughly 4 years ago and they placed him on Zoloft. He took the Zoloft for nearly 2 years. It seemed to help him deal with his anxiety. I decided to have him repeat Kindegarten. He no longer takes the Zoloft. And, he is now in the 2nd grade and speaks and interacts absolutely normally. Most people can not believe that he would not talk in the past. I am so grateful I was able to find help for him.

Learning About Selective Mutism

Grew out of it, TN — Mon, 11 Feb 2008 21:55:44 GMT

Elizabeth , Hattiesburg YOU HIT THE NAIL EXACTLY ON THE HEAD. I posted earlier, but you explained it so much better. I remember exactly how I felt as a child and the anxiety grows and intensifies when a fuss is made. Occasionally I will see a former classmate from elementary school and they will always mention that I didn't talk and for a moment, I completely feel that same anxiety 30 years later. Just let the child come to terms with it on their own and aid that by providing them with a fresh venue where they can start over.

Learning About Selective Mutism

Myrna Mau, Chicago, IL — Mon, 11 Feb 2008 22:14:16 GMT

My daughter was diagnosed with Selective Mutism at age 4. It was heartbreaking watching her go to preschool and not being able to speak to her teachers or the other kids. She would not speak to anyone outside of our immediate family. With therapy and medication she is doing great at age 6 and can speak to almost anyone.

Learning About Selective Mutism

Emily Heeb, Rockton, Illinois — Mon, 11 Feb 2008 22:30:39 GMT

Wonderful report that I caught just as I was about to leave. I think I may have had this as a child (and no it's not just one of those things I thought I had, like Scarlet Fever. =P) I was never diagnosed because my mother is a quiet person and she didn't think this was a problem. However, from when I started school til about the 7th grade you wouldn't hear a peep from me. As I started to get to know my class (which took 7 or 8 years) I felt I could loosen up and talk. I may not have had bad selective mutism, but I grew out of it by the time I entered high school. It's really wonderful to know I'm not the only kid who was so painfully shy that I missed out on so much of life.

Learning About Selective Mutism

Krista Kardys, Colchester, CT — Mon, 11 Feb 2008 22:32:24 GMT

My daughter's teacher called and asked that I watch this segment. This is my daughter, finally an answer. something that has made no sense has a name and a treatment and hope! I plan to waste no time in getting my daughter the help she needs, I am so greatful to her teacher for never giving up on finding an answer she is my hero.

Learning About Selective Mutism

Caroline Merz — Mon, 11 Feb 2008 22:52:39 GMT

My daugther was diagnosed with Selective Mutism. She is 13 and will be 14 shortly. She barely talks in public and when she talks she is very quite. The school here thinks they know how to handle it when in fact they go against her Doctors orders. They think she should be forced to speak when in fact that is the worst thing they could do. She will break down and cry in school. I am afraid for her going into the high school next year. With the no kid left behind act she will not be able to have her special classes where she can feel comfort she must attend the main stream classes. Because of this disorder she is behind in English classes. I'm afraid she will really fall behind in High School. I am thankful for you piece on this and making people aware of Selective Mutism. For more info go to selectivemutism.org it's a great site. Please continue to do more pieces on this and help bring it to the publics attention.

Learning About Selective Mutism

Kathy Crowley, Napa, California — Mon, 11 Feb 2008 23:23:32 GMT

I am a 58 year old woman who suffered from selective mutism from kindergarten through 5th grade. I remember it as being a horrible time of my life. I spoke only to teachers my best friend. I was tested by the school several times but the results were always that I was a very bright child normal in every way except that I would not speak. I desperatly wanted to speak out but I had gone for so many years without talking that I didn't know how to go about it. When I waa 10 years old my parents moved to a different area 500 miles away. I remember the relief I felt because I could go to a new school and could speak and no one would ever know about my past. Moving was a blessing to me and I loved my new identity as a normal speaking child. I remember one of my happiest childhood memories of being sent out of the classroom for "talking in class". I had never heard of the disorder "Selective Mutism". My heart goes out to all the little children who have this condition and am grateful for the research being done in this field.

Learning About Selective Mutism

Mary Romaine, Jacksonville, Fl — Mon, 11 Feb 2008 23:47:39 GMT

I was very happy when this topic aired today. We just recently came out of this situation (thank God)because it was very rough. Our daughter was born with a hearing impairment and at three years of age, we enrolled her in a preschool program designed to help hearing impaired children prepare for school so they would not be behind. First it was the school bus driver that told us she would not speak to them. Then it was her hearing impaired teacher. I spoke to a few friends and close clients about the situation, at this time not thinking it was anything serious. One of them who is a speach pathologist told me about elective mutism. When I started researching this I learned that the name was changed to selective mutism because the kids really do not 'elect' not to speak. At that time, we thought our case was peculiar because the school environment was the only place she did not speak. Like Jacob, she froze in the middle of a conversation in public if she saw anyone from school. Her pediatrician said we did not have anything to worry about, she conceded also that she did not know much about this. Two years in a school environment and not a word. By the time she got into kindergaton, we also had to video tape her reading, spelling and everything else she needed to do. Our frustration however was with the school system because the teachers and other school personnel had no clue about this disorder. I had to fight to get an approval for alternate testing for her since she did not verbalize. She will write her anwers down in class but her kindergarton teacher did not want to accept that her reason being that K5 kids were not expected to write! I will not bore you with the details of that one. One thing we decided from the start was that we will not allow her to be put on any medications. She is an exceptionally bright child like her siblings and I just had faith that she would outgrow the disorder if we made the school environment less intimidating. We learned not to push her to speak but encouraged her to share her feelings with us. She had a good friend who came home sometimes with her. They played speechlessly. Eventually, she was the first person from school she spoke to! The school psychologist had to come to my office to test her after reviewing her video tapes, to ensure this disorder did not affect her school work. The tests confirmed that while in K5, her reading and math skills were at the second grade level. She then wrote a plan instructing that the school allows us to test her on tape. This did not give her undue advantage since she was already performing above grade level. In the end, she started speaking to her hearing impaired and speech teachers on a one -on-one basis in first grade. Gradually she started speaking to a few other students and at the beginning of 2007/2008 school year she walked into her second grade class and introduced herself to the teacher, she has been talkative ever since and continues to maintain an all A average. It took time on our part to coach her additionally, pep talks to allay her fears, lots of prayers, several school lunches and education of her teachers/staff to get her here. A great resource is The Selective Mutism Foundation's website. Thank you NBC for getting the word out. I think every school should have a couple of people trained on this disorder so they can work with parents not against them. In our case, we are educated enough to research and find answers. We need advocates for every child who wants to speak but can't. The school systems have to understand that this is also a disability and testing accomodations have to be made for them too. It is hard enough for parents to deal with this without having to deal with the school system too.

Learning About Selective Mutism

JK, Ohio — Tue, 12 Feb 2008 01:21:20 GMT

Thanks for airing this story. I have been teaching first grade for 11 years and have a student this year who would not communicate at all with any teacher in the building. No one knew what to do and most thought she was just being stubborn and controlling. Thanks to an awesome speech language pathologist, I was given information about selective mutism and this child is now beginning treatment. Maybe some other teachers will see this story and recognize that a child in their class actually has a real anxiety disorder and is not being mute just to be difficult. What a huge help it will be to that child!!

Learning About Selective Mutism

Christine Carney — Tue, 12 Feb 2008 01:29:44 GMT

My 12 year old daughter was diagnosed with selective mutism.She doesnt even talk to her aunts.This is a very misunderstood condition.People always insinuating things. "are you sure nothing happened to her?" I was very relieved when I saw the show today.Finally!! My daughter is still not talking in school and she only has one close friend but I keep plugging along,looking for help for her.If anyone has any advice for us email me at slimcarney@aol.com

Learning About Selective Mutism

Pam, Baltimore, MD — Tue, 12 Feb 2008 01:38:18 GMT

I have a 12 (13 next week) year old. She was diagnosed at 10, however has been selective mute since she was a toddler. I just kept hearing that she was shy. It was bad. She was in the gifted program at school, but we ended up pulling her out, because as they become older, so much is verbal. She is on zoloft now, and does talk some. She does well in school, and joins many activities, but she still doesn't have any friends. It's so heartbreaking.

Learning About Selective Mutism

Anne Fishman PA — Tue, 12 Feb 2008 02:13:52 GMT

I agree with Dr. J Shipon. We are very fortunate that Dr Elisa Shipon-Blum is our son's doctor and advocate. We know that she is the main reason that Robby feels so successful today. His confidence is due to her research, instincts, effort and the brilliant treatment plan she developed. I wish they had allowed her more time to elaborate about her work in this area.

Learning About Selective Mutism

M. Fink, Cherry Hill, NJ — Tue, 12 Feb 2008 02:15:01 GMT

I am confused.
In People magazine, Dr. Shipon-Blum was Jacob's treatment doctor. Why was she not the expert interviewed for the segment? She is the expert who has put selective mutism on the map. Am I missing something or did they miss the boat in explaing the true nature of SM? The focus, as usual, was on SM being all about not talking. My child was diagnosed with SM and we saw 3 different therapists and doctors before seeing Dr. E. helped us see things in a completely different way. Our child made astonishing progress with the expertise of Dr. Shipon-Blum. Perhaps the network should have done their homework before the show.

Learning About Selective Mutism

Deborah Karbo Lexington, Ky — Tue, 12 Feb 2008 02:24:52 GMT

My son will be 9 this month and we noticed his "shyness" around age 3. At home he didn't stop talking. One day his Doctor said "selective mutism" and I started researching. Preschool for him was full of anxiety, K thru half of second was full of anxiety. He loved school, his teachers, and his friends he just could not talk. I pulled him from a classroom with a teacher who WOULD NOT research this, so I homeschooled. We worked on his regular school day assignments but we also focused alot on coping stratgies to help him recongnize his anxiety and some things he could do to help him manage it. IT WORKED!! "T" still does not talk to everyone however this year he can and does talk to his teacher and his classmates.
I found a wonderful web site full of information! FINALLY someone else in this world knew what I was seeing in my child. The web site is selectivemutism.com founded and run by a Doctor Jonathan Berent in New York.
Some and I mean SOME children do use medication for a VERY SHORT time to help reduce anxiety in order to help them realize what calm does feel like, but this is ONLY reccommended for EXTREME cases (like my son). Jonathan Berent prefers NOT to use meds.

If I had not found his web site I really don't know where we would be. I get a monthly tip and I have ordered some of his cd's. When I did call his office to find out if there was someone close to where we are for some of the camps he offers............HE CALLED me back!! Not his office personal!! I felt like my son and I mattered to him and we weren't just a number or a test. If I could afford the trip for my son to attend one of his week long sessions we would be on the first plane there. I read my monthly tip and I go to his web page often, it has truely been a blessing for us. I hope this helps someone's child but more importantly someone's parent know that maybe their child will outgrow this and maybe they won't, but all it means is that these kids have more anxiety than the rest of us, NOTHING else. I also hope that if there is one child out there labeled with yet one more "THING" to medicate for that they can get answers from this and rest a little easier. (maybe stop that "one more medicine" and label) One more thing, SOME doctors have even labeled children with Autism, I think it is because they don't know the answer and when you tell them about this they think you are crazy.

My son is a wonderful intelligent child and finally his teacher can witness this as well as many of his friends and our friends. But as his parent I had to do the research and weed out the thearpists and people who wanted to drug him. We are smarter for it.
Thanks for taking time to read this.

Learning About Selective Mutism

Richard Gallagher, Ph.D. New York, NY — Tue, 12 Feb 2008 02:27:36 GMT

The topic has generated a tremendous amount of interest and a number of questions. To help those looking for more information, I would like to refer you to several sources: the Selective Mutism Foundation (www.selectivemutismfoundation.org), the Selective Mutism Group-Child Anxiety Network (www.selectivemutism.org), and the NYU Child Study Center website (www.aboutourkids.org). For those interested in evaluation and treatment, university centers for Child and Adolescent Psychiatry or Departments of Psychology or some centers for Speech and Language Therapy have professionals that are often familiar with the disorder. Research work is being supported by the National Institute of Mental Health in several settings with one program in particular at the University of California at Los Angelos in their child and adolescent anxiety disorder program at the Neuropsychiatric Hospital.

Hopefully all of the professionals working in this field can help spread the word and assist families in getting assistance that is generally effective.

Learning About Selective Mutism

Nancy Waters, Jefferson City, MO — Tue, 12 Feb 2008 02:48:13 GMT

I am a speech pathologist working in the Early Childhood Special Education Program in my school district. Last spring a four year old child was referred to our program. Like Jacob, she spoke at home but not at her preschool or other public places. Her parents taped her at home, and she demonstrated excellent communication skills. During a formal language evaluation she demonstrated above average comprehension of language, but did not respond to any verbal tasks or even respond nonverbally. When she was observed at her preschool, she chose to play by herself, and when other children moved into her space her face would flush. When she moved away from the other children, her cheeks would return to normal. When we reviewed results of the evaluation and observation with the parents, it was suggested that they consider speaking to their doctor about medication to help reduce anxiety, and we developed educational goals to address speaking with others in various situations. The parents did indeed decide to place their daughter on medication and called it her "talking medicine." Our first goal was to have a member of our team work with her in her own home. She spoke to our couselor on the very first visit. After she became comfortable talking with another person in her home, the couselor then began to visit her in her classroom during play time. Our next step was to have a "tea party" with some of her friends, our counselor, and myself. Next she came to our school setting and we worked individually. When we achieved success, she was then placed into therapy with a child she had not met previously. Four months after beginning a program which combined both medication and behavioral therapy, she began kindergarten confidently interacting verbally with her teacher and peers at school. Selective Mutism is an anxiety disorder which affected her ability to communicate. The medication reduced her level of anxiety, and our behavioral goals provided her success in situations starting with the most comfortable setting such as her home and gradually building to new situations which included new settings and new people. Success!

Learning About Selective Mutism

Susan Hettinger, Castle Rock, CO — Tue, 12 Feb 2008 02:55:21 GMT

Thanks for shedding light on this little-known subject. For a long time, we didn't know what was wrong with my daughter when at about 5 years of age, she showed signs of this disorder. I tried punishing, cajoling, pleading, using rewards, and nothing worked. It was awful. She then began to show signs when we would travel back east to visit family--she wouldn't talk to grandparents, aunts, uncles, cousins, at all. We went through several years of this before a friend suggested selective mutism, then our journey for a treatment began. We went to counselors and psychologists, but to no avail. Then, as a last resort, I decided to take her to a child psychiatrist. He was very low key about it, and said that he knew of the disorder and had treated successfully some children with a low dose of Prozac. I didn't really want to go that route, but being desperate, we went ahead. After about six months, I was about to give up on the meds, but I got a call from her 3rd grade teacher. She said "I thought you would want to know. Angie is speaking to classmates, and reading in front of the class!" I wanted to cry! Then she came home and began whispering at first, to her older brother, who had moved home after being away a while; the SM didn't allow her to speak to even him. It was as if the dam burst and the words began pouring out!!! To parents of children like this, who have the opportunity, don't be afraid of using medication! In our case it was a God-send, and my beautiful daughter was able to overcome this anxiety disorder!! She is now 13 and you would never know in a million years that she ever struggled with selective mutism!!!

Learning About Selective Mutism

West Columbia, SC — Tue, 12 Feb 2008 02:58:58 GMT

My daughter was selectively mute for 2 years. After 2 years of unsuccessful behavioral therapy we asked her psychiatrist, Dr. Harry Wright in Columbia SC (who is an expert on the topic) if we could try prozac therapy which we had read about. We started with a low dose and worked up. She was 4 when she became selectively mute. It lasted 2 years until she was 6. Now she is 21 and has not had a recurrence. Dr. Wright wrote a paper on her in a psychiatric journal. He called her Leah for anonimity but her real name is Cayce. We will always remember how Dr. Wright ended our nightmare.

Learning About Selective Mutism

Angie, Florida — Tue, 12 Feb 2008 03:21:32 GMT

My daughter, Madison, was diagnosed with Selective Mutism when she was in pre-school. My Mom saw something on TV about SM and looked it up on the internet. She gave to me to give to Madison's pre-school teacher. The teacher said it sounded just like Madison. I also gave the information to my pediatrition and he gave me a name to a child psycologist. There, she was actually diagnosed with SM. One of the most painful situations I had ever seen was...My oldest daughter and I went to the pre-school to pick Madison up. We got to the school alittle early, so we decided to watch through a window at Madison playing on the playground. She had a friend at school that she always talked about at home but never spoke to her. As we watched, Madison just walked behind some girls, (one was the one she always talked about) she would just follow them around. I would say to myself, "Just turn around and say something to Madison" The worst part was looking down at my oldest daughter and she had the biggest tears in her eyes. She said to me,"Why won't they talk to her" It is so hard watching your baby struggle like this. I swear she is the loudest one in the house. It is unbeleivable how quiet she gets around relatives, friends and family. She is just like Jacob, she actually communicates through a friend at school. The child psycologist suggests that we put Madison in the same class with someone she knows. In kindergarten, she was with her cousin, 1st grade she is with her friend. This year Madison will whisper to her teacher. That is such a huge accomplishment!! The great thing is Madison has a Fantastic teacher. I also printed pages and pages of information for her teacher before the school year started. So she knew what she was in for. I am so glad because many teachers don't have the patience for children with SM. I remember Madison's pre-school teacher yelled at her because Madison wouldn't hold her hand. Not the best thing to do with a child with SM. Madison cried for hours!!

Learning About Selective Mutism

Susan Baer — Tue, 12 Feb 2008 03:32:47 GMT

DR. Shipon-Blum has been treating my grandchild Robert Fishman age 7 for the past 4 years. If my daughter Anne Fishman hadn't found this dedicated professional and specialist in selective mutism when she did Robby would not be making the steady progress he has in becoming less anxious and speaking in school and other challenging situations. Dr. Shipon-Blum, despite her very busy schedule, is always available to meet with Robby's teachers and to design and redesign his treatments as he progresses. She did the work making selective mutism known and offering families and school systems specific, realistic treatment approaches. She should have been interviewed on your show and she should have received accolades. Our family is very grateful to her.

Learning About Selective Mutism

grace pitman NJ — Tue, 12 Feb 2008 03:54:33 GMT

I am a special education teacher and I knew my daughter had this diagnosis since the age of 4. I have had a few children in my classroom with this disorder but it went undiagnosed. Some thought it was a language disorder but it is not. These children have great language (both expressively and recetively).
My daughter is now 12 and recently recieved the diagnosis by a Dr. at CHOP in Philadelphia. It hastaken us years to find someone to help us. It was extremely hard to find a Dr. who specialized in this area. Dr. Shionblum sounds fantastic but unfortunaltly, doesnt't take insurances. I did find her website useful and informative and it helped when I went elsewhere for help for my daughter. I brought all of the information with me show the Dr. that this was my daughter.
My daughter is the most energetic, funny, loving adorable girl at home but is so scared to speak to anyone outside of the house. She has never refused to go to school but she is quiet there. She will raise her hand yet is soft spoken when giving the answers. She spoke to her grandparents at a younger age but as the years went on the talking decrease dramatically. She has only spoken to 2 of her aunts and that was when she was younger. She will smile, nod and gesture when around other family members. She egages in town sports but is on-verbal whe doig so. She has a handful of friends that she is comfortable with but only speaks with them. Her best friends does alot of talking for her and people will ask her friend questions about my daughter right in front of her. She has been receiving therapy once a week and is taking medication for the anxiety/social phobia. I see changes already and my daughter says she feels different too.
If you want the real scoop on this disorder, contact someone like Dr. Shionblum and parents who seem to be more educated about the disorder than the Dr. that was on your show. This disorder needs more public awareness and more Drs. to be trained in it. These are not just shy children or is it a control issues. these are children who are scared to death to speak to people and who have the fear of being heard speaking to people. They don't refuse to speak because they are use to their parents "facilitaing" for them. They don't speak because they are frightened.
I am please with the progress my daughter has made. To others it is very small but to us it is very big.

Learning About Selective Mutism

D. Lee Springfield, MO — Tue, 12 Feb 2008 03:59:44 GMT

I would like to contact Dottie too so that I could learn her therapy techniques. I am a speech pathologist teaching a self contained language classroom and have a student with selective mutism. I feel lost when trying to help her.

Learning About Selective Mutism

Megan Mayo, Chaska, Minnesota — Tue, 12 Feb 2008 04:19:20 GMT

I just wanted to thank you for doing a segment on " Selective Mutism ". I have a 6 1/2 year old daughter who suddenly stopped speaking at age 3. No one could figure out what was happening to our daughter. Relatives started getting mad at us and telling us that our daughter was being rude and defiant by not answering them anymore. Just as the little boy in the article our daughter too would talk your ear off at home but the minute she left for school she stopped talking. She would hold hands with the kids, play with them like any other normal kid would play. Her " friends " just started excepting her for her. They too would start speaking for her saying to others " she doesn't talk ". She is happy in school and extreamly smart and doing well, right on course! The only difference between her and the others is that she doesn't speak. She has no speech problems and no hearing loss. We tape record her reading asignments into a tape recorder for her teacher to hear and to accurately asses her skills and her reading level. This has been a life saving tool for us to help her to communicate and it does work! After 3 years of thinking she had this condition and working with her, we finally got the official diagnosis by a Dr. Bernstein at the Unniversity Of Minnesota Teaching Hospital. We too thought this condition was rare.People were constantly questioning us such as.." Did someone hurt her? Did someone scare her? Did someone say something to her? We truely thought that people were thinking that she was being abused and that scared us to our core. We are releived to know that we are not the only family dealing with this issue. It's an extreamly frustrating condition.It takes a lot of love and alot of patience on the part of the family. Thank-you, Thank-you, Thank you! Please keep in touch with me if you ever do another segment on Selective Mustism again! I would be happy to share with you what I know and how I deal with it day to day.

Your devoted " TODAY " show watcher!

Learning About Selective Mutism

Ruth Sosa, St. Petersburg,Fl — Tue, 12 Feb 2008 04:20:20 GMT

I believe my daughter, Ale, had this when she was 3 and 4 years old. She was never officially diagnosed but she wouldn't talk in preschool at 3 and the teacher thought she had a speech problem or some problem she couldn't identify. She grew up learning 2 languages at the same time so they thought that might have something to do with it. She would talk at home with family,knew social expectations in a Latin family but was quiet with others. We changed schools and at 4 in preK she didn't talk very much, only to a couple of kids. They had her repeat the 4 year old class saying she was immature and needed to be more social. I really believe she had this disorder. She started girl scouts, vacation bible school in summer, art classes and at 8 I put her in music lessons, soccer and softball. I wanted to expose her to different things to see what she liked. Although she was still quiet and shy, only talking when spoken to, the other activities seemed to help her learn social skills, coordination and to work with others. She stayed in the same school until after 6th grade when I felt they were stifling her and putting her in the "dumb class" (her words),and eating her fingers and nails until they were raw because she was stressed. I knew that we had to change environments. We changed schools to a slightly larger one for middle school and again slightly larger for high school. I believe this helped her become more confident enough though it challenged her comfort level. She excelled in academics and did very well in sports and continues to this day. She will be 18 in a few months. She is still quiet, timid at times, has trouble leaving phone messages,(gets all tongue-tied)gets very anxious when people yell at her or she has to speak or do presentations in front of people but has a good group of friends both girls and guys,is a good listener and very understanding of anyone with a problem. The problem is many teachers and coaches take it the wrong way- like they don't know the material or aren't pumped up and motivating to others on the team. They think they are too passive. They don't realize by putting pressure on them, they get nervous and freeze, instead of being positive, encouraging and not so negative when they want them to do something. There is a lot of ignorance of this problem.
I would like to know what is out there to help these kids as they transition from high school to college to career choice? R. Sosa

Learning About Selective Mutism

Stephanie McCallum, Minneapolis, MN — Tue, 12 Feb 2008 04:26:42 GMT

I have a nearly 7 year old daughter with this condition. It's a very exhasting condtion for a child to have as it's takes an enormous amount of control. People who knew her would understand somewhat, otherwise I as a parent would have to "talk" for her and she would whisper to me what she wanted to say. She has been in the same school for 4 years and only this September did she start to talk to her teacher that has known her for 4 years! There are times when we see sign of getting better and then signs of the mutism coming back in certain situations. I believe it will be an ongoing condition that will never fully leave her. As parents we walk alongside our daughter and help her the best we can.

Learning About Selective Mutism

Monique, Det, MI — Tue, 12 Feb 2008 04:30:16 GMT

I was never diagnosed with selective mutism, but from what I understand that is what I had. My parents just thought I was horribly shy. At home I was one way and at school another. I always wanted to voice my opinion but I could never overcome whatever was holding me back. I've had people joke around and state that maybe I was mute. Today, I am 33 and I talk more but I still have anxiety attacks and I am very quiet and speak only when necessary. I am like that with my distant relatives, friends, and co-workers. Unfortunately, my immediate family would like for me to shut-up. They also help me to speak when we go into public places.

Learning About Selective Mutism

Jennifer McLarty, Sacramento, California — Tue, 12 Feb 2008 04:42:31 GMT

My daughter just turned 10 and has selective mutism. It is good to know that there are others out there like her.

Learning About Selective Mutism

Daisy Hopkins, Bloomingdale, GA — Tue, 12 Feb 2008 04:45:08 GMT

I was very glad to see the show this morning. I teach in an elementary school we have a student that is now in 4th grade with this problem. I plan to share this information with the other staff members. It will help the student. It may also help the parents if they knew of others with this condition and that they can get help for this.

Learning About Selective Mutism

Steve Ortiz, Houston, Texas — Tue, 12 Feb 2008 05:15:37 GMT

When I saw this story I remember a story in a book by George W. Burns, 101 Healing Stories; Using Metaphors in Therapy (2001, p. 6-7). In the section Metaphor Therapy, The Power of Stories, Burns describes his experience using a short yet powerful allegory that drew the power to change from a six year elective mute. Metaphor - a very powerful teaching tool used in therapy.

Learning About Selective Mutism

Toby, Seattle, Washington — Tue, 12 Feb 2008 06:01:54 GMT

FINALLY!!! That's all I can say, is finally, people are learning about SM and talking about it. My daughter, now 11, has been showing signs since birth. Her main symptoms were crying from the minute I left to go to work until I returned. She couldn't make eye contact with strangers....she would cry until they moved away from her. She was hyper-sensitive to any new person or situation. This continued well into her school-aged years. Through this journey, I had doctors tell me she was just strong-willed and manipulating me, she was "just shy" and would outgrow it. Even her father said "she's just shy". Not only would she not speak in new situations, her body would freeze, as well. She would speak to her father and to me, but not to my sister, my parents, or anyone in preschool. I took her to a pre-ballet class when she was 5 or 6. She wanted to go every week, but she would not participate. She wanted to, but she just couldn't. Every week, we would go and watch. There were no books or counselors to get ideas from. One child psychologist I took her to when she entered Kindergarten and STILL wouldn't speak to anyone, or participate in PE or music, and after putting her through all of the testing, said to me that she was sorry she couldn't give her a true evaluation because my daughter wouldn't talk to her. HMM....That was why we were there!!!
Long story short, I came across the term "selective mutism" on WebMD with searching under "anxiety". I have tried a number of psychologists, psychiatrists, but I've found no one that she will open up to. What I have done is to NEVER chastise her for not speaking, instead, given her incentives for speaking up in class, giving her the chance to speak and, yes, speaking for her if it reaches a critical level of discomfort. She is now 11 and in 5th grade. She has made tremendous progress. Slowly, but still progress. She presented a book report in front of her class at the end of last year. I took her for ice cream today and she ordered her own cone!! Slowly, her comfort zone is expanding. I hope more people become aware of this and more research is done and support networks developed. These children need a lot of patience and understanding, and most of all, encouragement.

Learning About Selective Mutism

Nicole Cleveland Ohio — Tue, 12 Feb 2008 06:32:49 GMT

We noticed that our daughter had Selective Mutism when she was in Kindergarten. We just thought she was shy until then. We brought her to a social worker and she would talk to the social worker by bringing a tape that she had recorded at home. She would play games with her if her sister would go along and do her talking for her. The social worker told us that she would grow out of it. She didn't, she's now 13 and has never spoken to my grandparents, my mother-in-law or any of her aunts or uncles. She does however talk to kids her age or younger, my cousins in their 20's, my parents, her brother,sister and her father and I. She talks quietly to her teachers only when she absolutely has to. She once talked to Santa Claus at the mall. I kidded with her and said "You won't talk to your grandmother but you'll talk to a stranger at the mall in a big red suit" She said she had to, so she would get what she wanted for Christmas. Out of my 3 children she is the loudest at home. She is witty, funny and stuburn. She is a straight A student in all advanced classes. There are other issues besides her mutism that have recently begin popping up. She has trouble saying Thank You, Your welcome, Please, or I'm sorry. It's not that she's rude, she just can't do it. Also, she won't spend the night over her friends houses or even my mom's (who she does talk to). And except for school, she does not really want to go anywhere but home. She doesn't even want to go to the movies. When I did research on Selective Mutism, some of what I read mentioned that it was genetic and ran in family's with anxiety disorders. And it definitly runs in both sides of our families.

Learning About Selective Mutism

Crystal, Buffalo, NY — Tue, 12 Feb 2008 06:57:28 GMT

There are so many people commenting here, that I wish I could write back to them. Some even welcomed questions from others. But how do we get in contact without people leaving their e-mail address? I would love to know others who have gone through this. And the things that helped their child come out of it.

My son went through all of preschool without speaking. We tried so many things, but did not know what he had. One day the preschool teacher gave us a copy of an article she found in the newspaper about selective mutism. After reading this article and finding more info. on the internet, we were sure he had SM. This was confirmed by two pshychologists. We have been taking him to a second pshychologist since this past summer, who has had experience with a few of these cases, but at this point all he seems to do with our son is "play games" during their sessions. The psychologist never has anything to say to me at the end of each session. Sometimes he brings me in before they start to discuss what's happening with my son in school. We just started my son on a very small dosage of Prozac a month ago... my son did not want to take the medicine (we told him that it would help him to talk), so we have been sneaking it into his daily dinner drink. My son is in Kindergarten now, and has a great teacher (and school principal) who has been working closely with us on the proper treatment for our son. 5 months into Kindergarten, he still will not talk to the teacher. Though we've been told he occasionally will talk to one friend (that we had over to our home a couple times). Sometimes this friend will speak on our son's behalf. However, my son has come along way since preschool. In preschool, many parents would ask the teacher "what is wrong with that boy?" It really hurt to hear that and to watch our son during little performances that the children had for their parents. Our son would just put his head down and not make eye contact. However, in kindergarten he has overcome that and will now do things like raise his hand, clap his hand along with the group, and communicate in non-verbal ways.

Still, it is very hard to watch and I pray my son will come out of this... it's just the waiting and wanting him to be a happy child so badly. He seems so happy and normal at home. It just breaks my heart because he is such an intelligent and great boy. I know it takes time, but we are still at the stage of trying to find more methods to promote verbal communication. I really hope that he will speak before he gets to second grade (which is at a different school). Luckily, he is in a looping class and will have the same teacher next year. If anyone wants to write me with your experiences, I would welcome that. lovebarbie@adelphia.net

My husband will be going to a seminar in Long Island next month, that is by Dr. Elisa Shionblum's group. Hopefully that will provide us with information that we don't already know, as it is so hard to find people in our area that are familiar with SM. It would be great to find more parents in this area that have dealt with, or are going through this same process. Thanks for reading.

Learning About Selective Mutism

TM, PA — Tue, 12 Feb 2008 13:11:35 GMT

Wow! What interesting BLOGS. I would like to put a different perspective on things. Reading these stories...I see I'm not so alone! However, I am not a parent but an educator of 18 years. I had a child with selective mutism in my kindergarten class and then I had him in my 2nd grade class as well (when I moved to a new grade). We thought he would feel more comfortable (less anxiety) with me again, but after reading the blog on the family that moved away I am not sure we did the correct thing. I sure wish NBC would do some more extensive studies and give some more help. It sounds like there is no quick answer. I found it very difficult to find information and help on this issue when I had my student. I wanted so badly for him to talk to me...I felt like a failure. He seemed so happy and would laugh (no noise), smile, try to participate, kids would talk for him, he would write notes to me, but never say a word to anyone. He even would sneeze without making a noise! When I would call home he would answer the phone, but drop it as soon as he knew it was me. It was a terrible feeling. I became a teacher because I think kids are great; I wanted to make a difference;I wanted to keep them safe and happy--I think "my guy" was happy, but no conversation. However, he still sees me in the hallway and waves to me if I make the first move, but still does not speak. We have a very good non-verbal communication realationship going. I had tons of creative ways to assess him in K and 2nd grade in non-verbal ways. We did a lot of cassette taping of him reading at home, but he never wanted anyone else to hear him. He is very bright!!!!!! In 3rd grade, he still isn't talking. Any suggestions or help on what else we could do. We live in a very rural area and it is difficult to get great help. Any suggestions? "We" teachers feel for the parents...I can't imagine. But please know it is very frustrating for the teachers as well...we feel so helpless...not a comfortable place for us to be!!!!
I feel bad for the lady in Silver Springs. I am sorry that she had teachers that didn't seem to care....I sure hope that is not a commom occurance! Our job IS to help!

Learning About Selective Mutism

Crystal, Buffalo, NY — Tue, 12 Feb 2008 13:31:57 GMT

Great news for those looking to discuss SM with others. As a regular user of Yahoo Groups, I don't know why I didn't think of searching for a SM group until now. I found a discussion group consisting of over 500 members. You can join and either read the posts at the website, or have new posts sent to your e-mail address. Here is the link:
http://health.groups.yahoo.com/group/Selectivemutismsupportgroup/

You will have to cut and past the full link above to your web browser. Hope to see some of you there. I just joined!

Learning About Selective Mutism

Maura, Pittsford, NY — Tue, 12 Feb 2008 14:20:50 GMT

My 9 year old daughter was diagnosed with SM 5 years ago. She displayed the same symptoms that so many previous posters have described. It was her speech therapist who first suggested Selective Mutism (something we had never heard about). Since then we have tried many things and our daughter has progressed slowly and for the first time this year (3rd grade) will speak one on one with her teacher. So, we are always encouraged to see things in print or on television to educate more people and raise awareness of Selective Mutism. We knew (from selectivemutism.org)ahead of time that the piece would appear on the Today show and were tivo-ing it as well as watching it live. My husband and I had the exact same reaction as MICHELLE from LONG ISLAND. What in the world was Matt Lauer (someone I normally respect and admire) thinking when he kept saying that it was a "STRANGE" segment and "BIZARRE"? We were shocked and offended and I think MICHELLE did a good job stating this. I hope Matt hears about these comments and thinks twice about what he says and the impact his words will have on people. His "teases" might be the thing that remain in people's mind if they weren't able to stay and watch the segment.

Learning About Selective Mutism

BK Milwaukee WI — Tue, 12 Feb 2008 15:43:51 GMT

I have an 18 year old daughter who has been fighting SM for 16 years. In the early 90's it was very hard to find a Dr who would take you seriously. I glad to hear that so much progress has been made. She's almost made it through school but now faces a whole new set of challenges in the workforce.

Learning About Selective Mutism

Diane Struble — Tue, 12 Feb 2008 17:20:25 GMT

My daughter is 11 years old and was diagnosed with selective mustism when she was in the third grade. Her first two weeks of Kindergarten she did not say anything. Not one word! There were other little things that led me to believe there was more to her "shyness" than what others were saying. One of her 1st grade teachers told me she was defiant. She had an episode with her where my daughter became stiff and could not move. The teacher did not know how to deal with this. Then in third grade another episode of her becoming stiff and not being able to move or talk occurred. I happened to be doing research online and came across a reading on selective mutism and I was reading about my daughter. Since having her diagnosed she has come a long way. She was in therapy for two years and we just take one day at a time right now. She continues to be very quiet and at times still cannot speak. Its so nice to read that other parents are going through this same thing with their children. I want to thank everyone for sharing their experience. I feel teachers need to be educated on the anxiety disorder to be able to understand that our children are wonderful, beautiful children with a very frustating problem. Have patience and be posititve.

Learning About Selective Mutism

Beth Costello Painted Post NY — Tue, 12 Feb 2008 17:32:18 GMT

My daughter Emily who is 16 now was diagnosed in Kindergarten with SM at Strong Memorial Hospital in Rochester NY.
She only talked to my husband, her siblings and Grandparents.
She was a good listener and many children told her their darkest family secrets...knowing she would never tell anyone.
Emily also did not like standing out and would never dress up. She prefered to wear plain clothing. Emily hated getting her hair cut and never liked having a photo taken....never a school photo.
Emily remembers teachers giving out treats in school and she often was not able to receive them because they told her if she didn't verbalize "yes" or "no" she would not receive the ice cream or candy like the other students. I would tape Emily's voice at home reading and doing the verbal part of her studies so that she would get a fair grade.
My biggest fear was that she would be in an emergency situation and would not be able to verbalize her needs.
Emily was started on prozac in 1st grade but did not speak until 3rd grade when we changed schools. She did not know the teachers there and knew very few students.
We discontinued the prozac in 5th grade and Emily has blossomed to become an outgoing well rounded child.
She even reads out loud in class with ease [but chooses the small paragraphs]
My advice would be to be a good advocate and listen to the specialists. Do not force them to speak...it won't happen and makes their anxiety worse.

Learning About Selective Mutism

Wendy Powell, Greenwood SC — Tue, 12 Feb 2008 18:06:23 GMT

Thank you for doing this story. My daughter is 6 years old and was diagnoses with SM just after her 3rd birthday. We were very lucky that her pediatrician was familiar with this condition. He diagnosed it right away. We had always noticed that she was a little "shy" around people, but her father and I are both introverted so we didn't think to much about it. Then we had a full blown trigger. I went away with my husband on a business trip for a few days and left her with her grandparents (which she had done before). This time there was something different. I dropped her off at preschool on the morning that we left and reminded her again that she would be staying with her Nany and Grandpa. That evening when I called to check on her, Nany told me that she had not talked all day. From the moment that I walked out of her preschool classroom she was silent. We thought she would wake up the next morning her old self . . . that did not happen. In fact, after her father and I came home she would not even speak to us. For nine weeks we lived in utter silence. We had a lot of people laugh and say they wish they could get their children to do the same thing. This did not help us. Can you imagine how you would feel if your first born would come and curl up next to you on the couch and want you to run your fingers through her hair, but would not say "I Love You". She was very affectionate towards us, but would not speak. I cried a lot during that time. I can remember laying outside her bedroom door during this time and listen to her play with her dolls. She would whisper to them in her room. After those nine weeks, we really began to research SM and joined SMG. We made progress with some family, but not anyone in school or outside the home. We were hesitant to start her on any medication at such a young age. We wanted to see what would happen if we followed all the steps we were told to. However, when we were getting ready to start kindergarten this year we really stepped it up. We talked to all the schools in our town that offer K5, public and private. It was a real eye opening experience. Some schools didn't even want to talk to us because of the SM (they did eventually admit this). We also started seeing a child psychiatrist and put her on medication. Well, we did put her into a small private school that was willing to learn about SM and take the time to make sure she didn't fall through the cracks. Six months later, we have a new child. While she still doesn't talk to the teachers, they do communicate. That is what we are working on now. But she had totally opened up and started talking to other children. Even in front of adults. She doesn't seemed frightened for them to hear her voice anymore. After this school year we will be moving from SC to GA. At first the thought of this really scared me, but seeing the difference in her over the past few months has relieved my anxiety. She even says she is excited about moving.

Anyone that is going through this is going to need a lot of patience. Just remember you will get a lot of unsolicited advice from people who think they know what you are going through. Take their support, but know that you are that childs parent and you will know what's best for him/her in your heart. I will continue to pray for all those affected by SM.

Learning About Selective Mutism

Lori Cerullo, Lincoln University, PA — Tue, 12 Feb 2008 20:49:13 GMT

Thank you for this report! I work for Parent to Parent of PA, a non profit organization who links families of children and adults with disabilities or special needs. I have just learned about this condition myself through a parent who has recently called wanting to talk to someone with this SM. I can't wait to tell her about the ideas I learned here. I'm sure she will be reading them herself tonight! Thank you

Learning About Selective Mutism

Michelle Romero, Wesley Chapel, Florida — Wed, 13 Feb 2008 00:04:00 GMT

It would really help many, many families if more media attention would be given to Selective Mutism. If Oprah could do a show on it...Wow! It would help so many families and teachers. My perspective is a little different in that my niece Olivia Rose suffers from SM and she was placed in my Kindergarten and first grade class to aleviate her anxiety in her first years of schooling. It was a very emotional time for us all but, thankfully, with guidance from her parents and therapist, support and patience from my peers and administrators, and reading all the material I could get my hands on, Olivia has made great, great strides and is every bit of a third grader. She has participated in a holiday performance in front of a huge audience, has joined a cheerleading team, participated in girl scouts and dance and continues to have successes daily! With support, guidance, and lots of patience, I believe all children who have SM will overcome their obstacles. Kudos, to the Today show!

Learning About Selective Mutism

Dan Dolzall Camby, In — Wed, 13 Feb 2008 01:54:07 GMT

My own son has not said one word to me in almost two years. I feel like it's hard for me to be a good father to a boy I can't communicate with the way I want and need to. My son is six years old and started to stop talking when he was four. He will olny speak to a couple of his teachers at school and hasn't even said a word to his gandmother in almost to years as well.He used to always talk to me and my mom and then just stopped. It's hard for me not to get frustrated with him at times when I ask him something that I really need to know the answer to like when I nedd to know were his older bother is or something else important. I guess he'll just talk when he's ready becouse I've tried everything.

Learning About Selective Mutism

Mary Ida Bush — Wed, 13 Feb 2008 02:03:47 GMT

My 27 year old son had this problem from the time he was 4 years old tell he was a freshman in HS. He called his 2nd grade teacher on the phone and read to her at home. She really did her best to work with him. They tried to hypnotize him and he just went into a deep sleep. He always made good grades. He taught himself to read. He now hires and fires employees where he works. Talking at home was never a problem for him. When I was on the phone he would get loud to people could hear him, He wanted a ventriloquist doll so we got him one. My mother said he would get white and clammy and could not talk to her anymore. He worked with several physiologist but never talked to them. He is still soft spoken but is married and has six great children.

Learning About Selective Mutism

PRG Wyckoff NJ — Wed, 13 Feb 2008 14:45:09 GMT

In Matt Lauer's defense, all that he implied by using the word "bizarre" is that the condition is unusual as well as mind boggling and there is no denying that it is. My daughter was diagnosed 6 yrs ago and it is still difficult for me to completely grasp.

Learning About Selective Mutism

Chuck, Pitman, NJ — Wed, 13 Feb 2008 15:07:50 GMT

My son is almost eight. He was diagnosed with SM when he was four years old. We live in southern New Jersey, a stone's throw from Philadelphia and Jenkintown and were lucky to have been directed to Dr. Shipon-Blum by a family member who is in the education field and had heard of the doctor's great success in this area.

We had no idea there was an issue at all until one day when my wife was picking our son up from pre-school. The teacher pulled my wife aside and asked what our son's disability was. Confused, my wife asked the teacher to continue. It turns out our son had never uttered a word in school and had developed his own sign language with which to communicate. My wife immediately thought something was wrong. I, on the other hand, thought our boy was just shy. Over time, he stopped talking to just about everyone but his immediate family. With a few exceptions, he stopped talking to family members, friends and neighbors.

My wife mentioned our son's situation to her cousin, who is in education. This is when we first heard about SM and Dr. Shipon-Blum. It wasn't until I started to research SM that I realized our son might be more than shy. In fact, I was blown away by the information I was uncovering. Our son could have been used as the model for the definition of Selective Mutism.

One of the first things I learned from Dr. Shipon-Blum is that the last thing a parent or teacher should try to do with the SM child is put pressure on the child to speak. Of course, this is exactly what I had been trying to do for months. Not only did she explain what had to be done for our son - she showed us, as well. That night, I told my son that we understood he had difficulty speaking and that it was alright if he couldn't speak. I told him I knew that he wanted to speak and couldn't. I let him know that, with Dr. Shipon-Blum's assistance, his Mom and Dad were going to help him. He looked at me with tear-filled eyes, leaped into my arms, thanked me and told me he loved me. I hadn't realized the anxiety he had been dealing with until that moment when I saw the look of relief on his face. That was an amazing moment.

The day following our first session with Dr. Shipon-Blum, our son spoke his first words in school. In fact, I don't think he's stopped talking since.

Today, people look at us like we're crazy when we tell them what our son used to be like. He is very talkative (just ask his teachers). He sings in front of hundreds at holiday concerts and has even gotten up in front of his class, with parents present, to read aloud.

It's been a few years now since we've seen Dr. Shipon-Blum. I would love for her to see what she has done for our son. She has changed his life. I wish the same success for all of you whose children may have Selective Mutism. If I could give you one piece of advice, it would be to ignore all the people who tell you your child is just shy. Listen to your heart. Listen to the silence.

Learning About Selective Mutism

Margee Sweeney, Kittery, Maine — Wed, 13 Feb 2008 15:18:58 GMT

I have a granddaughter who has been diagnosed with selective mutism. She has been treated for the disorder and at the age of 12 is doing great. She couldn't talk to me for a long time but we found if we played games together and she had to teach me how to play we could begin to talk to each other that way. We love to play games.

I think back to her mother's upbringing and her uncle's and realize that there is probably a genic link to this disorder as both of them had difficulties in school communicating. My granddaughter's uncle could only talk to his teacher through his best friend telling her what my son had to say in class. He was almost held back in kindergarten for not communicating. But then he was so big and smart enough in other ways that they passed him on. Today he has a very responsible job in the film industry working under directors like Steven Speilburg and Martin Scorsese and Ron Howard so there is hope.

My granddaughter is such a beautiful joyful child that it has been worth it to get her the help that she has needed. And we know that she can be as successful as her mother and uncle have been with this disorder in their lives.

Learning About Selective Mutism

Ken Leonard, West Des Moines, Ia. — Wed, 13 Feb 2008 17:09:10 GMT

Thank you Today Show! I watched that program on selective mutism and that boy is exactly the way I was in grade school. I'm 41 years old now and back then I was never diagnosed. So all this time I had no answers. I've never even heard of another case like mine or this selective mutism until now. Now I finally have some answers.

I went to a small school and most everyone was very excepting and supportive of me, so I really didn't feel a lot of anxiety about going to school as it sounds like a lot of kids do. That was just the way I was. I did fine at school, had friends and led a normal life....just wouldn't talk at all, not a peep. Not to the teachers, my friends, aunts, uncles, no one outside my immediate family. I wrote a lot of notes though.

I never knew what my "problem" was. I really wanted to talk, I just couldn't. With a whole lot of encouragement, I eventually came around and started to talk in about fourth or fifth grade. The teacher kind of put me on the spot. I was to give a speech in front of the whole class on any subject I wanted(I still remember it was about chickens). She kept building up to the big day. Encouraging me all the time about being able to do it. When the big day came around, I actually talked. I gave the speech. In front of the whole class. None of my classmates had ever heard me talk before. They didn't even know the sound of my voice! What an overwhelming relief it was to be talking! I don't know if their way of getting me to talk was the right way or not, but it worked.

I'm still shy to this day, expecially in group settings, but I get along just fine. Maybe with the correct diagnosis back then, and more therapy than just giving a speech, I might be more outgoing than what I am today. Maybe not though. I think this news story opened my wife's eyes as to why I'm the way I am. She always thought I was kind of a goofball. Now I'm a goofball with answers.:)

Every once in awhile I'll run into someone I went to school with and they'll ask me if I ever figured out why I never talked. My only answer was "nope...no idea, I guess I was just shy". Now I have a much better answer to give. Thank you again.

Learning About Selective Mutism

Melinda Williams — Wed, 13 Feb 2008 21:14:38 GMT

I am a speech therapist in a school and have had one case of this. The referral comes to the SLP in the schools but it's not a speech issue. It's an anxiety problem although I believe we can help by creating communicaiton boards, etc.

So I would like to hear from parents whose child diagnosed with SM is on an IEP at school. Who provides the services on the IEP? If services are provided from someone other than the SLP since it is an anxiety disorder how did you get these services implemented?

Learning About Selective Mutism

Pat DaVolio, Buchanan, VA — Thu, 14 Feb 2008 03:33:14 GMT

The teachers at my son's school had never heard of SM. When I told them about it, they immediately researched the subject and contacted an expert at the local university. We met with the expert and were given a game plan for Jake, then 6. Through a system of charts, games and rewards, we were able to help him relax and conquer his fears. He would earn prizes from the "treasure box" at school and we would reward him at home as well when he met a goal. By the end of 1st grade, he was whispering in class. He began 2nd grade whispering and slowly emerged into talking. Now in third grade, he is quiet but volunteers answers and speaks freely. We are very proud of Jake, now 8. I guess you could call it bribery, but it never involved drugs or psychiatric care. I did take him to a child psychologist once, but as we left he said to me, "She doesn't know what to do." As with so many children suffering from SM, he spent a lot of time listening and learning and is very precocious. My advice - give it plenty of time, set small goals, avoid drugs and don't harp on it too much. What you focus on expands and if your child is comstantly reminded of the problem, it will become much bigger than it actually is.

Learning About Selective Mutism

Tina M, Brockton, MA — Thu, 14 Feb 2008 14:27:18 GMT

Just like all the other comments. My daughter suffers from this socially debilitating disorder. She was diagnosed when she was 5 after she had already started Kindergarten. Dr.'s kept telling us she was shy nad would out grow it. I still even with a diagnosis haev people tell me there isnothing wrong with her. She can talk if she wants to, she is choosing not to talk. HELLO!!!!!!!! These kids don't "choose" not to talk. THEY CAN'T!!! I was very happy to see a major news program doing a story about "SM". Five years ago when my daughter was diagnosed we had very little information about what Selective Mutism was. There are more kids out there with this disorder and I'm hopeing in the next 5 years awareness and advocacy is as main stream as Autism Awareness has become.

Learning About Selective Mutism

Daniel, Worcester MA. — Fri, 15 Feb 2008 06:27:44 GMT

I had this horrible disorder all through school. (Kindergarten - College) I could not speak a single word to anybody, my face felt frozen, my body was stiff. I had no friends. Nobody knew what the hell was wrong with me, I went to many shrinks and they would just say I was shy. It was so frustrating because I never saw another person ever like me. I thought I was the only person in the world with this problem. I am 34 now and I am pretty much cured of this by taking medication and facing the fear head on but my whole childhood was ruined by this and I'm still angry and frustrated about it to this day.

Learning About Selective Mutism

Deborah DeCurtins, Troy, Ohio — Fri, 15 Feb 2008 14:12:56 GMT

My daughter is 32 and a survivor of Selective Mutism.
Of course when she quit speaking to anyone outside our home (at the age of three) no had heard of Selective Mutism... not the teachers,doctors or psychologists. It would have been nice to know about SM 30 years ago, it may have made Abbey's journey a lot easier. I would like to know if there is any information or studies on children with SM and how they have faired as adults.

Learning About Selective Mutism

claire — Fri, 15 Feb 2008 20:42:04 GMT

my son is four years old and ive been told that he is a selective mute he only really talks to me an his dad he doesn't talk to anyone else he also has speech language delays as well so even though he can verbally communicate with me he doesn't speech properly they say his level of speech is of a 2 year old any advice or imformation would be of great help to help my son

Learning About Selective Mutism

Concerned Mom, Birmingham, Alabama — Fri, 15 Feb 2008 20:53:25 GMT

My daughter is 16 and suffers from SM although she has never been diagnosed. I have taken her to several doctors in the area but they either said that she was just shy and would grow out of it or that she was being rude and controlling. I even had one Dr. tell me that I should take her out to dinner but not let her eat anything unless she ordered it herself. It is jsut so difficult to find any docter that knows about this condition. She is in the 10th grade now and has still never spoken to anyone other than parents, grandparents and cousins. She does not speak to any other relative or close friends. She is very smart and athletic and has many friends but she just will not speak. She gets very upset if I ever try to discuss this with her. She wants to talk but when she tries she says her heart starts beating really fast, her stomach hurts and it is hard to hear. While I would love to get some help for her, she is just so closed to the idea of going to any more doctors. I would love to be able to find help for her but can't seem to locate anyone in my area. If anyone knows of any Doctors in Birmingham, Alabama that have experience in this please post the information here.

Learning About Selective Mutism

Dana Williamson, Telford, Pennsylvania — Sat, 16 Feb 2008 04:14:10 GMT

My son struggled with SM, but I am happy to say that he is now a completely different child thanks to the help of a wonderful behavior analyst who worked with him for several months. We first became aware of his SM at the age of 4 when he entered preschool, and at first, I have to admit that I thought it was a control issue or extreme shyness that he would outgrow. Even the school had never seen anything like it in all their 20+ years of operation. It was only after several months that his teacher came across an article about SM and passed it on to me. After reading it, I knew this was exactly what he was dealing with, but I still didn't know what to do about it or how to get him help. His SM continued into kindergarten, and despite the efforts of his wonderful teacher, he spent another year in silence. Half way through his kindergarten year, I learned of Dr. Shipon- Blum, and his teacher and I both attended a seminar of hers about SM which was very helpful and informative. Shortly after that, we took our son to see a colleague of hers (she herself had a 2 year waiting list). While our initial consultation went OK, I came away feeling that this wasn't for us. I don't mean to to discredit her work in anyway, I know she has helped many many children. I just didn't get a "gut" feeling that they could help us. I was very discouraged. Maybe I would have felt differently had I been able to see Dr Shipon-Blum herself. I guess what I was really looking for was for someone to come into my son's world and meet with him in the places where he struggled most. I didn't see the need for drugs, and I didn't really care if he ever talked to the doctor in the office. What I wanted was for him to talk at school to his teachers and peers.

Several moths later, in the summer before he began 1st grade, we found exactly the help we were looking for. It was completely by accident that we found it, but it was nothing less than a huge answer to prayer. We learned of a behavior analyst named Eileen Quinn who has her office in Ambler, Pa. She had worked hands on with several other children with SM and had remarkable results in just a few months time. We knew instantly after meeting her that she was exactly who we were looking for to help our son. She met him for the first time in our home where she was introduced as my "friend", but he was also told that she was a "teacher". She came over and befriended him by playing games and talking to him. He responded to her instantly because he was in his comfort zone. After just 2 or 3 meetings in our home, she met with him on the school playground. Her goal was to get him comfortable one step at a time as she gradually moved into the classroom. She began "playing school" with him in the classroom after hours where he would talk to her with no problem at all. The following week she would ask the teacher to be present, but in the background. As he became more comfortable , she would ask the teacher to come closer. You could see he was a little unsure sometimes and tried to hold back, but she very gently prompted him to continue talking and answering questions. (Some say never to "force" these children to talk, but we found a lot of gentle coaxing and small rewards worked very well.) Once he was talking to his teacher, she began meeting with him during the school day where she would play games with him and a few classmates at a time. They were always games where a few short answers were required of everyone so he was compelled to talk in front of the other children. She took baby steps, and with each new accomplishment, she would add a new element. Of course, the work she did also needed to be continued by the teacher from one meeting to the next so that he wouldn't backslide between meetings. All in all, our meetings lasted only about 4 or 5 months, and within that time our son was completely transformed. We started working with Eileen in the August before 1st grade, and within weeks he was talking to his teacher. Over the next few months he learned to talk to his classmates with a little prompting, and by early spring of that year, he was talking freely and making friends. He still struggled a little bit in public if anyone talked to him, but now a year later, even that has improved. We are overjoyed at the changes in him. I was helping at his school recently, and I was amazed to see him. You would never know he was the same child. I thank God that we found Eileen and would recommend her to anyone. I know location is an issue, but if you are anywhere in the Philadelphia area, she can definitely help you.

If I can offer any help to any other parents out there I would be happy to.

Learning About Selective Mutism

Tracy Poff, California — Sat, 16 Feb 2008 07:44:14 GMT

Our advice to parents of children with Selective Mutism: seek BIOMEDICAL treatment. This means 1) determine the state of your child's biochemistry, and 2) treat the CAUSES of imbalances. We realized that there was a name (Selective Mutism) for our daughter's condition when she was 3 years old. She is now 4 1/2, and she is no longer selectively mute. What did we do? We went to a DAN! (Defeat Autism Now!) doctor. We firmly believe that the Selective Mutism is a manifestation of the same toxicities that can show up in another child as autism, ADD/ADHD, apraxia, pervasive developmental disorder, and other conditions on the autistic spectrum. With guidance from our DAN! doctor, the first thing we did was eliminate WHEAT and DAIRY. Voila, within days, our daughter was speaking more socially than she had done in the prior three years. After 3 months on a wheat-free, dairy-free diet, her social anxieties were considerably lessened (and some days, non-existent), and she exhibited facial expressions in a classroom setting, whereas previously she was expressionless. In addition to the diet, we were also supplementing her with needed nutrients, vitamins and minerals, because lab tests showed she had significant malabsorption problems. Further testing showed that a primary reason she had digestive problems was because she was heavily intoxicated with metals (including mercury and lead) and chemicals. (This toxicity did not show up in her blood because it was beyond the blood, and already stored in organ tissues--important to understand, as many pediatricians will look at blood only, not understanding how toxins get stored.) The obvious next question is, how did she get so TOXIC? Well, that is a complex answer, but boils down to: genetic predisposition, an immature immune system compromised by vaccinations, mercury exposure via breastmilk when I had silver fillings removed, and everyday exposures through food, air and water. She also had a round of antibiotics shortly after her MMR vaccine, which further compromised her immune system. I could write a book about all that we have been through and learned over the past 16 months, all of which started with our simple wonderings as to why our daughter was a normal kid at home, but would not speak in class.
To reiterate, we are dealing with a cascade of events that can lead to selective mutism: population of the child’s gut flora by the mother at birth, the quality of which establishes the baseline of immunity; myriad vaccinations (triple the number today versus 25 years ago), which tax the immune system; exposure to mercury through mother’s amalgams (even chewing releases mercury); exposure to antibiotics both directly and through our food supply; and exposure to other toxins in the water we drink, the air we breathe, and the material things we acquire (new carpets off-gas chemicals for years, flame-retardant pajamas are made with the heavy metal antimony, plastics in which we store food…).
In sum: 1) don’t accept that your child’s SM condition is a fluke, something “nature” handed him or her—we live in a toxic world, and toxins AFFECT THE BRAIN; 2) see a DAN! doctor, as pediatricians are not trained in the complexities of biochemical imbalances; 3) stop vaccinating your SM child and any siblings until you understand the state of your child(-rens) immune/digestive systems; 4) do internet searches and read, read, read--I have a list of book recommendations, but one to start with would be Gut and Psychology Syndrome, by Natasha Campbell-McBride; a good website is www.generationrescue.org; and 5) check out Dr. Amy Yasko at www.holistichealth.com--she "gets it".

Learning About Selective Mutism

Janice, San Diego, CA — Sat, 16 Feb 2008 09:51:02 GMT

My son, now 24, was diagnosed with this at around age 8. We were living in Germany at the time. He had always been "different", but by the time he started school, it really started showing up. He was very talkative, almost too talkative, at home. He was in a German school and the teachers there told us that, although he was learning just fine, he wouldn't speak, and his attempts to communicate with other children were "inappropriate" (poking, etc., but never violence). They had no tolerance for "different" kids in the public German school system. They insisted that he needed to go back into an English-language school, that that was the problem. We tried that, but he continued his non-speaking (once he confessed to me that he had NEVER spoken on the school bus and didn't want to start because the kids didn't know he COULD talk and didn't want to attract attention by changing). So he was kicked out of that school, too. Some doctors urged us to return to the U.S., but that was unrealistic due to my husband's job and I didn't think it would make a difference. The diagnosis was Pervasive Developmental Disorder and (S)elective Mutism. Finally, the doctors (we were living in Germany so all the doctors were German and they have a highly-developed system for helping children of all disorders) recommended we place our son in an in-house program (a children's hospital, where he lived with 2-3 other kids with mild speech/eating disorders, etc.) for a few weeks. There they forced him to ASK VERBALLY for everything he needed/wanted. At the time I thought this was harsh and to be honest I wonder how my son views this experience today, if he remembers it. Upon release, they put him in a special school for kids with speech and hearing problems. This turned out to be great for him (small classes, lots of attention and therapy) and he just blossomed. After school everyday he would go to a special group therapy program for kids with mild social problems. We eventually did leave Germany and he went through high school hardly speaking, but without apparent major problems.

Fast forward to today: he graduated last year from UCSD with honors, and works. He is still more comfortable with family than anyone else. He has a full-time job and is well-liked there, but obviously still suffers from social anxiety, and depression. He has only been medicated for short periods and says it did not help him. He is a wonderful young man but may never completely "fit in".

Learning About Selective Mutism

TP.,Cherryville, NC — Sun, 17 Feb 2008 14:20:31 GMT

My son was the perfect until the 1st day of pre-school. My picture of him standing outside on his 1st day of school was of him standing with his head hanging down. When we go to the school, he would not communicate, I thought he was nervous. I had prepared him for this day and even did a visit prior to the 1st day. When I picked him up, I don't remember any expression. After the 1st week I got a call from his teacher. She said she had been researching autism and thought I should have him tested. I was devasted, as was my family. I explained that there was nothing at all wrong with him, that he started this the 1st day of school... we had never had this problem before. After that 1st day, he would only communicate by a faint whisper in everyone's ear. Even at home with us. The school said he had a behavior problem...but not what you would think. When they asked him to help clean up...he wouldn't. They put him in time-out. When he refused to finish coloring a picture...they took away his play time. Needless to say..I withdrew him after 2 months. I took him to the pediatrician to be tested for whatever they thought he may have. They referred us to a therapist. At home prior to seeing the therapist, we tried all kinds of things. Rewards, taking things away...we were scared. We learned from the therapist, not to do these things. It makes things worse and will not make them talk. I learned very quickly that I was his link...no matter how upset everyone else was...I (his mom) had to stay calm and to be his rock...his protector. His therapist diagnosed him with selective mutism. Although most kids talk normal at home and not at school..He would just whisper to everyone. There is no doubt in my mind that if he needed to scream he would not..he just couldn't. The therapist slowing gave me ideas of things to work on to bring him out. After about a year in therapy he slowing made progress. In the end...he would talk, but only in person. He would not hollar from another room or across the yard. Slowly that got better. His last step was to hollar across the yard. One night "God" sent us a stray dog that came knocking on our door. That dog helped him with his final step...he got to where he would hollar for the dog to come to him. We still have some issues...select mustism manifest in other ways, once he has started talking. Just little things that I notice...some people think some of the things he does may be strange. He doesn't like crowds. Sometimes if we have to enter a crowd..he may not think about it...other times he will hang his head down like the 1st day of school and we know to just go home and to make him not feel bad about us doing so. People just are not educated in this problem and don't know him. I could go on and on. Just give them all the support and love they need...they can adjust and get better, but may always have this in some form...support them.

Learning About Selective Mutism

Loretta Sakay — Mon, 18 Feb 2008 07:23:31 GMT

I am a 68 year old woman. I suffered from this disorder
when I was 4 yrs. old. I was bullied by a student who was the same age as I and he literally tortured me because I did not talk. He pulled my fingers backwards and ran from the back of the class to my desk to kick me
as hard as he could. In extreme pain, where I almost passed out I still did not utter a sound or make any emotion. This went on daily. When I was about 6 yrs old, I again got bullied on the playground being held by 2 girls so that a boy could touch my underwear. I did react to this by sobbing. The teacher asked me what happened and other students answered for me by telling her who did it. The teacher grabbed the boy and reprimanded him in front of everyone. This seemed to satify me that justice was served and it made me realize that if I told the teacher then she would protect me. So then the adverse reaction after that was that I became a tattle tale. She then told me not to tell her about everything. Fast forward as I was growing up I still suffered from this disorder even hiding in the closet after marriage (age 21) from visitors, waiting until they left. I never knew what it was called until my daughter seen an episode on t.v. and said that must of been what you had. There are others in my family that had it too, but everyone self diagnosed as extreme shyness. I am glad there is awareness of this disorder. I don't have this anymore
but do still suffer from axiety. Hope more awareness will continue on this. This information could have helped me sooner. My teachers then sent me to deaf tests and told my pareents maybe I couldn't hear or even retarded. I believe music helped me through this as I became a classical pianist.

Learning About Selective Mutism

Christa Rhodes, Belmont, Michigan — Mon, 18 Feb 2008 14:59:52 GMT

When I saw this article on the news last week it made me glad to see that there are others like me. I am only 14 and have had it my whole life. There are a few relatives that I have yet to talk to. I talk to my friends that I know really well, but I can rarely talk to teachers. It's not that I don't want to or I don't like to it's just that I try, but I usually can never get anything out of my mouth. It's easy for many, but for me yeah right.

Learning About Selective Mutism

Jodee, Dearborn Heights, MI — Mon, 18 Feb 2008 15:47:29 GMT

My daughter is 8 and even though she has not been diagnosed with SM she did not speak to her teacher at all in kindergarten. She went to school half way through 3rd grade, 1st grade being the best year, and then we had to pull her out and home school her but not after talking to school social workers etc... I was not going to drag my daughter to school everyday kicking and screaming. She has tried to go to school 2 times since then and at different schools but when she gets to the door she has panic attacks and says she can not do it. She has friends and socializes but that was also an issue when she was younger. We have her in therapy and she now takes Lexapro after trying Zoloft. the medication has helped in other areas but still has panic attacks, severe anxiety and possible ocd. We also tried buying her things if she would go to school but that didn't help and now I know was not the answer. I thank God for the support of my family and friends and for now as long as she is learning and socializes with other kids then i will continue to do my best in getting her the help she needs.

Learning About Selective Mutism

Tami E. Iowa — Mon, 18 Feb 2008 22:57:51 GMT

My son was diagnosed with Selective Mutism when he was around 4 years old. Reading about Jacob was like reading a story about my own son. After we went to a Pediatric Developmentalist when he was in 2nd grade he was put on a medication regime of 10mg of Lexipro daily and we also did some behavioral intervention at school through his IEP. After about two months we saw small improvements with him whispering one word sentences to his teacher. Each day after that he was a little better. After about 6 months on the Lexipro my son told me that he didn't think he needed his "talking pills" so we began to titrate him off. He is in 3rd grade now and still on the "shy" side but is doing MUCH better than before. My advice to parents is that you are your child's best advocate. This syndrome is not very well known (especially in small school districts) and many professionals are easy to chalk it up to a "behavior problem". It is a relief that Selective Mutism is being talked about more! Thank you!

Learning About Selective Mutism

Candice O. R.N Kenosha WI — Mon, 18 Feb 2008 23:59:55 GMT

My 6 year old son has also been diagnosed with selective mutism. It started when he was 4 during preschool, like a flip of a switch. I thought he was just shy, he is now seeing a psychologist. Jacob's story reminded me of my son. As we were watching it my son said, "Why is that boy copying me?" My son will also only wear certain clothes to school, no characters or anything that draws attention to him. I think more people (including schools) need to be educated on this. This is heartbreaking and frustrating for kids,parents and teachers.Thank you for airing.

Learning About Selective Mutism

Dorothy Bainter, Springfield, VA — Tue, 04 Mar 2008 04:04:48 GMT

Thank you for educating the public about selective mutism. The children who suffer from this debilitating anxiety cause no problems for society at large. The ones who suffer are the children who are teased and bullied and become more withdrawn. These children are in pain because they want friends but are unable to engage socially in order to make friends. It is as if their voice is paralized. They cannot speak no matter how much they want to. Thank you for airing Jacob's story so that so many children can be closer to getting the therapy they need to overcome this anxiety disorder in a positive way. Thanks also to Dr. Elisa Blum for her work with Jacob and for her work to get this anxiety disorder recognized and treated appropriately.

Learning About Selective Mutism

J. Lippman, Atlanta — Wed, 05 Mar 2008 23:16:44 GMT

I am 37 years old and a Selective Mutism success story! One thing I want you to know, THERE IS HOPE! I know not all kids are the same, but I was never medicated. I most definitely had a happy childhood, even though I was afraid to speak in public. I was silent outside of the home beginning at age 3. I finally felt comfortable speaking a little when I started a new school in 2nd grade (about age 7). During my silent years, I had a patient and understanding support team including family and my 1st grade teacher, Mrs. Baker. Back then; Doctors really didn’t know what to do about my silence. My teacher and my mother figured out a way to break the silence thru audio taping me at home, assigning me a buddy at school for non-verbal communication and most of all, treating me like all the other kids!

Looking at me today, I am happily married (met my husband 17 years ago). I am a Manager in Corporate Human Resources and I have a group of people reporting to me. My job forces me to get out of my comfort zone. Yes, I still get nervous talking in front of groups of people and on conference calls, but as long as I am prepared, knowledgeable on the subject and have my notes organized ahead of time I do just fine!

It is still hard for me to make “small talk” with people I don’t interact with daily. I have been told that people that don’t really know me initially assume I am stuck up or aloof because I don’t have much to say in social settings. Luckily, I don’t let that bother me much!

I really think it is great that there is support today for the parents, teachers and children! There needs to be more informational segments on Selective Mutism in the future!