selective mutism...anyone? - Mothering Forums

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#1 of 34 Old 02-14-2008, 02:42 AM - Thread Starter
 
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My dd has slective mutism ( I am pretty sure). She chatter non stop at home, and at school, barely a word. She does not answer strangers who speak to her and is VERY slow to warm up in new situation. Anyone dealt with this, and how did you handle it? Is is helpfull to go to therapy or not? Honestly, I am really worried for her to start school. She is very smart and I am afraid she will fall behind because of her inability to talk. Most people have no idea how smart she is because she never answers questions or talks. What to do? Do they outgrow this?
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#2 of 34 Old 02-14-2008, 04:13 AM
 
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I have a VERY shy daughter who has finally, after years of not speaking in public in front of anyone has begun to talk to people. When we first started to attend our local homeschooling events she was almost 5 and for the first year everyone thought that she couldn't speak. She has always been a very shy person but when she is in a new enviornment she defaults to silence. Our friends joke that she will never be able to marry anyone unless they are related to her because she wouldn't ever speak to them!! She is not diagnosed with anything, although all of my kids are very shy she is what I would have described (up until very recently) painfully shy. our biggest milestone thus far with her was that she went to services with a very close family friend last month and she didn't cry! She did see another very close friend with whom she will talk and because of the new social situation couldn't converse with her. Our friend was wonderful about the situation and took very good emotional care of Ellie and told her that it was fine to not be comfortable and helped her by letting everyone know that silence is golden!!!
Over the years I have been shocked by the transformation that Ellie has gone through, from a baby who would NOT stop nursing if anyone other than her Daddy and brother were in the room to an 8 and a half year old who actually went to the bathroom last week by herself... in public!
I don't want to seem as if I am insinuating that your daughter is shy versus having a form of mutism, I just wanted to give you our story as some input!
I do not have any experience with therapy for speech troubles, though 2 of my children do have speech difficulties. A very good friend's son has had incredible improvement with therapy provided through preschool, I was completely amazed with his improvement in the past six months. I have always felt that if Ellie had been confronted with formal therapy she would have had more problems with the idea of warming up to the therapist and that would stress her more than I think that she could handle.
Sorry for the long post, the kids are sleeping and I could actually finish a thought!
Laura

laura, dh Brian, ds Rory 14, dd Ellie 13, ds Caelan 11, ds Seamus 9, ds Finn 7 and Penelope 2 !!!!

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#3 of 34 Old 02-14-2008, 04:14 AM
 
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how old is she? our ds does this, but he is only 2 1/2. i wouldn't call it "selective mutism". i think for him it's a combination of shy and doesn't really have anything to say to strangers most of the time. like - he would never talk to a random relative or a cashier at a store, but random person at the park with bubbles? hes all over her.

if your dc is alot older than that, have you tried talking to her about it at home?

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#4 of 34 Old 02-14-2008, 04:26 AM
 
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How long has this been the case? I really thought my son might have this when he was around age 2 or 3. He was very talkative at home and then around strangers we wouldn't say a word. It got bad enough for awhile that he wouldn't even look at people and would try and hide. Slowly he started coming out of it though. Now at 5 he initiates conversation with strangers but he is still shy in other ways and is nervous in new situations.
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#5 of 34 Old 03-15-2008, 12:54 AM
 
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I'm seeking out a dx for my 4.5 year old for this. With all my heart I think what she has goes beyond "shy". She's been in school six months and has not spoken but one word to her teacher (her name, spoken verrrry quietly), not too long ago. Otherwise, she communicates through gestures.

I have an appointment in April with a pediatric pyschiatrist who also has a pediatric neuropsychiatrist on staff to help with a medical dx. I've tried to have dd evaluated by early intervention last Sept, but she wouldn't participate so they couldn't evaluate her. I took a wait and see attitude. 6 months later, I have not seen a lot of improvement at school with the teacher, despite having playdates with one classmate. It has helped her bond to the child, but has done little to open herself up in school.

I'm looking forward to this eval, because even if I'm wrong in thinking dd has this (and I don't feel in my gut I am wrong), I know the staff there is very good as my sister's been their with their son and had a whole battery of tests and found out how to help him with his problems.

Have you seen the selective mutism website ?

Anyway, I just thought I'd share...

Mama of 3 girls: 7.5 , 6 , and 4.5
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#6 of 34 Old 03-15-2008, 11:56 AM
 
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I'm of the opinion that is can't hurt to have ti looked into. At worst you can always walk away from an evaluation or specialists by saying thank you very much and discarding any info they give you. At best, you get helpful information or resources.
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#7 of 34 Old 03-15-2008, 05:20 PM
 
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I have/had this. For the most part I outgrew it. Based on my own experiences, I am very much against treatment or intervention for selective mutism, as for me it made it worse, and I've read other people with selective mutism with similar experience. Many SM kids are, or become, very self-conscious about their SM and any kind of "special" treatment, cajoling, bribery, singling out, attention, focus, treatment, attempted counseling, etc. intensifies this and makes it more difficult to talk. I still find it hard to talk if I am caught off guard or if I feel interrogated or singled out.
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#8 of 34 Old 03-15-2008, 05:30 PM
 
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I had this, too, when I was a kid. I outgrew it around 7th grade (puberty, I guess, coincided, no idea if related.) I also had a stuttering problem, which didn't help. Sometimes I *wanted* to talk, but couldn't make the words come out. It was very frustrating, and I don't think anything anybody did helped me. Usually caling attention to it, or calling me "shy" made it worse. I have a very outgoing personality, I'm not shy. I just never liked talking to people I don't know unless I've had a specific reason for talking to them. I, too, have a hard time talking even now, if I am unexpectantly asked to. If I'm warned ahead, no problem, but if it's a surprise, I blank out and either can't talk, or I stutter and babble so much no one can understand me.
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#9 of 34 Old 03-15-2008, 10:14 PM
 
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I never talked at school..Never spent the night at people's houses..Never liked going into public places cause someone might look at me.When the teachers who knew I "could" talk demanded an answer from me I froze..My throat froze..They didn't understand..At that point I couldn't talk even if I wanted to..And if I got a sound out it was a stutter..Sometimes they thought I was stupid..Sometimes they thought I was just being a brat and being impossible.Middle school was the worst for me and the first few years of high school.Espessially when it came time to do book reports,speak in front of classes ect...I acted sick on those days..I just couldn't do it..I would almost pass out from the panic and fear I would feel at the mere thought of speaking in public.And if I had to go to the bathroom it was almost painful..I was scared spitless of someone hearing me mearly go pee..I would wait till the room was empty or let a little out at a time..

My parents? Bless their hearts never made an issue of it..They never made me go stay at other houses..They never made an issue of me not speaking at school much..They knew I could talk cause I talked to them..They knew home was my security blanket..They respected that and never forced me to be anything but what I was..

What helped me "come out a bit" ?...I connected with a school councelor in my junior year of high school who reconized what I had.She gained my trust and made me her "assistant" which I loved and counceled me (which I never really knew was councelling)..She helped me "blossom" so to speak(pun intended) so I could speak more at school..I wasn't a big talker but the rest of the kids respected that I was just a quiet girl who was always reading..

Do I still have it? Yes..I don't think it is something we ever get rid of truely..I still don't talk much(but I listen)..You won't catch me up in front giving a presentation or be the first to talk..But once I get to know you then you won't be able to shut me up..I still can't talk under pressure and anxiety..Throat freezes right up..It is like there is a lock bulged in there and only freedom of the situation will unlock it.

That said..Your girl is still so young..I would keep her close and let her feel secure..I wouldn't worry at this age about it..As she gets a bit older try to ingage her in social situations like outings,groups ect..But don't force her if she seems distressed..As long as she talks to the people she trusts and feels comfortable with she is fine..

You guys are going to be fine and so is she...HTH
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#10 of 34 Old 03-15-2008, 10:31 PM
 
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Mylie - but do you think your experience would have been more pleasant if you had gotten help at a much earlier age? Not pressured help, but safe help in a caring environment?

Because I'm understanding of my dd's needs, and fortunately my dd's school is very encouraging and patient with her, she's gone from not speaking to simple gestures, to whispering to her teacher. Even without knowing what to do, this is exactly what you are supposed to be doing for a child with SM - lots of support, and asking them (over a LONG time to build up trust) to stretch their comfort zone little by little until they have confidence to do it themselves.

The biggest concern I have is untreated SM children are prone to depression and setbacks, especially as they get to be older children and adolescents. I don't want my dd to suffer for 12 years if I can do something to help now.

There was a 20/20 episode last night that I didn't get to watch, but my sister has it on tape, and there's an article of it here .

Since there is therapy for SM, wouldn't it be helpful to get it? I don't understand why anyone wouldn't want to get help if it's available.

Mama of 3 girls: 7.5 , 6 , and 4.5
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#11 of 34 Old 03-15-2008, 10:45 PM
 
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Mylie - but do you think your experience would have been more pleasant if you had gotten help at a much earlier age? Not pressured help, but safe help in a caring environment?

Because I'm understanding of my dd's needs, and fortunately my dd's school is very encouraging and patient with her, she's gone from not speaking to simple gestures, to whispering to her teacher. Even without knowing what to do, this is exactly what you are supposed to be doing for a child with SM - lots of support, and asking them (over a LONG time to build up trust) to stretch their comfort zone little by little until they have confidence to do it themselves.

The biggest concern I have is untreated SM children are prone to depression and setbacks, especially as they get to be older children and adolescents. I don't want my dd to suffer for 12 years if I can do something to help now.

There was a 20/20 episode last night that I didn't get to watch, but my sister has it on tape, and there's an article of it here .

Since there is therapy for SM, wouldn't it be helpful to get it? I don't understand why anyone wouldn't want to get help if it's available.
It's just that some of us who have been through therapy for SM did not find it helpful, in fact found it harmful and traumatic and completely counterproductive, and that's the story you won't hear from mainstream sources.
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#12 of 34 Old 03-15-2008, 10:47 PM
 
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I'm not against therapy at all, if it works, and she doesn't mind it. But coercing her to speak will only make it worse. That was my only point.


Brig, the way the therapy is done may have changed since you went through it. Approaches to a lot of things are different these days, and often depend on the therapist anyway. I never had therapy. I was able to talk to my teachers one on one if I went to their desk or they came to me--as long as I wasn't speaking for the whole class to hear, I was ok-- so they left me alone and quit calling on me, etc, so I got by in school. I did have one teacher who hated me and called me stupid to my face, and tried to force me to talk, but she was the exception.
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#13 of 34 Old 03-16-2008, 05:22 AM
 
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Wendy, it sounds like we had similar teachers. I was selectively mute in 6th grade, and it didn't result from shyness or a psychiatric disorder. I refused to talk initially because kids teased me, and then the teacher made fun of me, and by that point, I had established my 'no speaking in school' personality that I couldn't comfortably give it up. When I moved to a new school, I started talking again, because despite the new student drama, the kids were much nicer than those in my previous situation.
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#14 of 34 Old 03-16-2008, 10:58 AM
 
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I'm not against therapy at all, if it works, and she doesn't mind it. But coercing her to speak will only make it worse. That was my only point.


Brig, the way the therapy is done may have changed since you went through it. Approaches to a lot of things are different these days, and often depend on the therapist anyway. I never had therapy. I was able to talk to my teachers one on one if I went to their desk or they came to me--as long as I wasn't speaking for the whole class to hear, I was ok-- so they left me alone and quit calling on me, etc, so I got by in school. I did have one teacher who hated me and called me stupid to my face, and tried to force me to talk, but she was the exception.
I'm sure the approaches have changed, but they still involve personalized attention, questioning, and so forth, which were detrimental to me as an SM child.
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#15 of 34 Old 03-16-2008, 11:26 AM
 
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From the information on the internet I've gathered, the new understanding of SM is that any attempts to force, bribe or trick children into speaking will backfire and possibly cause regression. In fact, the end goal is NOT to get the child to speak, but in fact reduce the overall anxiety level of the child to enable the child to feel safe and comfortable enough to speak, and the therapy from non-speaking to speaking should be gradual, and step-wise. It's absolutely critical that the professional have a full understanding in childhood anxiety and a working knowledge of SM for the best treatment. This way you know you won't be sent down the wrong path (they won't misdiagnose as ODD or ASD because they don't know what they are dealing with). Also, since the DSM-IV doesn't have it properly classified as an anxiety disorder, many therapists will mis-diagnose it because they read the book and don't believe it's an anxiety disorder (because the book doesn't say it so it MUST be true - yeah, right). This is why it's extremely important to find the right professional.

I plan to take copies of the documents I found on the internet to the psychologist and find out what exactly they plan to do with the treatment plan for dd. If they don't do what I want them to do, I know another group further away who is actually on the Selective Mutism.org's website who has experience in childhood anxiety and SM disorders. If I don't agree with the treatment plan, we will look elsewhere.

But, having said that, my 8 yo nephew went to the same place for another issue, and they were very thorough, going above and beyond and had great success with his issues.

The benefit of having a professional to properly dx, we will be able to see what other issues she may have in addition to the SM, and definitively rule out other things (like autism spectrum disorder and ODD).


These are what I've found. Maybe they will help another mom be educated in the current "best" treatment course for this.

An integrated treatment approach

The Silence Within (book and supplement with IEP form)

SM - A guide for teachers

Based on our current at home and preschool efforts, we've been doing these anyway. I'm glad we are already doing some of these. And I'm glad she gets another year of preschool, so we can have next year in the same place. Maybe we can iron these things out by K so that she will have an easier adjustment there.

Mama of 3 girls: 7.5 , 6 , and 4.5
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#16 of 34 Old 03-16-2008, 11:45 AM
 
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I just don't think it's possible for outside intervention to reduce the overall anxiety level of a child... outside intervention *causes* anxiety for the child, at least in many cases.

Of course I also don't believe that SM is always or even usually connected to anxiety, or that it's wholly unconnected to ASCs...
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#17 of 34 Old 03-16-2008, 11:58 AM
 
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Brigianna, I really think you generalize kids too much. Not all kids are adversely affected by therapy like you were. I ENJOYED going to see psychologists, etc, when I was a kid. Maybe it's b/c I come from a big family (I'm the 2nd of 5 kids), but I liked the individual attention coming from an adult who talked to me like an adult. Teachers talked to me like I was a little kid, but therapists always treated me like an adult, and I enjoyed talking with them. My parents had too many other kids vying for their attention, especially my little sister who had a lot of medical as well as behavioral problems (I am very sure she was misdiagnosed autistic, instead she was diagnosed w/ ADD, ODD, and schizophrenia.) Therapists answered my qustions and weren't afraid to tell me when they didn't know something. Maybe I was lucky and had really good ones, I don't know. But seeing therapists definitely didn't make my anxiety worse. Perhaps it was b/c we always talked about what was GOOD in my life, my therapist never asked me why I didn't talk at school or anything like that. He was mostly interested in talking about all the facts I knew and asking me to repeat strings of numbers (apparently I was amazing at that, although I'm no longer as good as I was then.) I actually enjoyed doing these things for people, but I can understand how someone else could be made more anxious by it. Also, I was never diagnosed w/ anything as a kid, I was just considered profoundly gifted and more than a bit strange. That unfortunately probably made a difference in how I was treated. I'm sure if I were a kid now, I'd have been diagnosed w/ some form of autism, probably Asperger's, by age 5-6.
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#18 of 34 Old 03-16-2008, 12:56 PM
 
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Brigianna, I really think you generalize kids too much. Not all kids are adversely affected by therapy like you were. I ENJOYED going to see psychologists, etc, when I was a kid. Maybe it's b/c I come from a big family (I'm the 2nd of 5 kids), but I liked the individual attention coming from an adult who talked to me like an adult. Teachers talked to me like I was a little kid, but therapists always treated me like an adult, and I enjoyed talking with them. My parents had too many other kids vying for their attention, especially my little sister who had a lot of medical as well as behavioral problems (I am very sure she was misdiagnosed autistic, instead she was diagnosed w/ ADD, ODD, and schizophrenia.) Therapists answered my qustions and weren't afraid to tell me when they didn't know something. Maybe I was lucky and had really good ones, I don't know. But seeing therapists definitely didn't make my anxiety worse. Perhaps it was b/c we always talked about what was GOOD in my life, my therapist never asked me why I didn't talk at school or anything like that. He was mostly interested in talking about all the facts I knew and asking me to repeat strings of numbers (apparently I was amazing at that, although I'm no longer as good as I was then.) I actually enjoyed doing these things for people, but I can understand how someone else could be made more anxious by it. Also, I was never diagnosed w/ anything as a kid, I was just considered profoundly gifted and more than a bit strange. That unfortunately probably made a difference in how I was treated. I'm sure if I were a kid now, I'd have been diagnosed w/ some form of autism, probably Asperger's, by age 5-6.
I know that therapy isn't detrimental to all kids. I harp on the fact that it is detrimental to *some* kids because that is something that is hardly ever mentioned or considered in mainstream circles. It's widely thought to be a panacea, completely harmless, suitable for everyone, and that just isn't true.
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#19 of 34 Old 03-16-2008, 08:55 PM
 
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Brigiana - with all due respect, even your siggie says "meeting a child's needs is never wrong". I believe I've done all I can for the moment to meet her needs with zero outside help. I haven't always been successful at coping with them. Regardless if they fix it or make it worse, it's a risk I have to take.

Not that I owe anyone an explanation, but I'm giving it anyway. I've spent 3 years trying to do it on my own, and it hasn't been easy, because I have 3 children aged 19 and 20 months apart. I haven't been able to give her the individualized attention that she really needs (even though I quit my high paying job to give my kids all of me instead of part of me). Also, I need to have a dx, at least for my own peace of mind. That the issues we've had in the past, with excessive meltdowns and tantrums have not been caused by me not understanding her enough or not giving her enough attention, but by the fact that she has something real and tangible that prevents her from coping. At least 2 of those years has been pure hell, because even a granola bar turned her into a total mess because it wasn't given to her exactly the way she wanted it.

I need to know that the struggles I have had have some basis in something concrete - not that she is simply attention seeking like my MIL has said, or that she may someday be armchair diagnosed with ODD. If I think the evaluations aren't going well, or if it's making things worse, of course I wouldn't subject her to that.

I appreciate the heads up, but I know she's capable of warming up to certain degree given enough time. I will reserve the right to stop if this is causing trauma, but I feel fairly confident that the group will know how to handle her. I will obviously not know for sure until we go to see them. One of those links actually tells you questions to ask them on how they treat the children. I'll be sure to ask before we even let her out of our sight.

I don't think it's wrong to want to get a child the child to have the best possible outcome. I just need to investigate this avenue - I know my child well enough to know if she will have issues with the experience (I have 19 typewritten pages of notes I've taken over the last year of her behavioral responses to her first days of school, her evaluation last year, the observation I made of her in her classroom). I will be able to tell if she's being traumatized.

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#20 of 34 Old 03-16-2008, 11:42 PM
 
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I don't mean to make this sound like a polarized arguement, because it is not that there are just 2 sides, and one "right way". But my experience with YoungSon (AS of some sort, PTSD, SM, dyslexia, et al) exactly mirrors Brigiana's. He started speech therapy at 3, and with school added all sorts of special services (from his point of view, it was all unwanted attention). His anxiety increased and his behavior deteriorated to the point that he was assigned to a closed classroom. It was only 4 days in that program (long story - would almost be funny how bad it was if it wasn't true) until I withdrew him from school entirely, and in the process gave up all therapuetic interventions. I was a single mother, working full time, but somehow we made homeschooling work.

Fast forward 2 years - with no intervention except a specialized tutor for reading, YoungSon has rejoined public school (totally his idea), and is thriving, socially if not academically. He is reading Spiderwick Chronicles (he read at kindergarden level when he left in 4th grade), and has friends over at the house everyday. He still doesn't talk much to adults (except me), and especially shuts down under stress. He rarely makes eye contact, and never speaks to a stranger. He requested, and I respect his wishes, for a minimal ammount of intervention of any sort. He is pulled out of class for reading help twice a week, but that is all. He knows (at 11) that his speech is not perfect, but chooses not to have speech therapy. I had to fight at the IEP to keep the speech teacher out of it. I have actively chosen not to seek any therapy at all for the autism issues. I don't know what his dx would be if he were evaluated today, but I do know his IQ would no longer test at 72. Part of his improvement is probably due to maturing and aging, but I think the lowered anxiety of no attention was the best possible intervention.

I wish I had listened to him earlier, when he made it clear that all this therapy was downright painful. But at least we stopped in time, and this kid is happy and regained some of his self-esteem.

Rhu - mother,grandmother,daughter,sister,friend-foster,adoptive,and biological;not necessarily in that order. Some of it's magic, some of it's tragic, but I had a good life all the way (Jimmy Buffet)

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#21 of 34 Old 03-17-2008, 12:02 PM
 
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I agree, you definitely have to let you child tell you if something is too much for them and pull them from therapy if it's making their anxiety worse. DEFINITELY do that. I think it would be cruel not to. But I also think therapy is worth a try and can be really helpful if the child enjoys it. I would go a few times to give it a good try, only because the first few times would cause anxiety in any child. But if after the first 2-4 times (keep in mind the first 1-2 at least should be mostly the therapist trying to get to know your child, there should be no pushing for anything at that point, no matter what type of therapy it is), the child still says s/he hates it, hates the therapist (that's a biggie, finding a therapist they like it the most important thing), etc, pull them out. Or even pull them out after the first time of it's obvious the therapist isn't a good match. Maybe try again in 6 mos or a year or whatever, w/a DIFFERENT therapist, especially if you think it was the therapist that was a bad fit, not the therapy. If it was the therapy, maybe not worth trying again.

I was not trying to say therapy is great for all kids, I was just countering Brigianna's idea that all therapy is bad (which now I know that isn't what she was saying, and maybe I came off wrong as well. ) I think therapy can be wonderful for a lot of kids, but if it isn't a good fit for any child, keeping them in it is far more detrimental than not receiving therapy at all. I do agree with that!
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#22 of 34 Old 03-17-2008, 03:01 PM
 
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Well, for better or for worse, I have to know what we are dealing with. Maybe it's my scientific background, but I have always needed answers. I need to know. Regardless of anyone else's experience, I need to try to find out. We'll work with any fallout/setbacks/etc. But I'm not prepared to go on guessing what's wrong anymore. If it works like it should, we'll be that much farther on the road to getting her some help. And if not, well, I'll deal with that when and if it happens. There's only one way to find out, isn't there?

Mama of 3 girls: 7.5 , 6 , and 4.5
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#23 of 34 Old 03-18-2008, 12:25 AM
 
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We are dealing with this in my 2yo. She has a Cleft Palate and in order to get normal speech must work on certain sounds to work different muscle groups in the mouth and throut. The SM is really frustrating because as long as she thinks your not paying attention or listening then she will bable away like crazy - sing, talk to her toys ect At speech thereapy she says nothing - an hour of playing with toys that might get you an Ahh or OH OH if she drops somthing. This really sucks when she has a physical condition for which speech is physio thereapy
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#24 of 34 Old 03-18-2008, 01:41 AM
 
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That has to be so frustrating for you MTAS. I have no idea what's going to happen with my dd. I called the pediatric neuropsych I'm taking her today and she's supposed to call me back so I can ask a bunch of questions, most importantly, how are they going to be able to evaluate her if she won't speak, how I should prepare her for the first visit, etc, and other questions related to how much she knows about/has diagnosed SM.

If I don't get the answers I seek, I also have the name of another psych who's specialty is SM. Students in their school have seen this person, and have had a lot of success with that dr. And it happens to be a dr who is in the same town as the dr I'm going to see. I'm going to ask if she refers patients to that doctor for treatment.

Aside from the non-speaking issues, I also see some speech therapy in her future possibly, because there's some letters she doesn't enunciate well.

Mama of 3 girls: 7.5 , 6 , and 4.5
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#25 of 34 Old 03-18-2008, 01:44 AM
 
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Quote:
Originally Posted by Brigianna View Post
I just don't think it's possible for outside intervention to reduce the overall anxiety level of a child... outside intervention *causes* anxiety for the child, at least in many cases.
I would caution against generalizing from your experience to everyone else's. SM was only one of your issues, right? And as a pp mentioned, a good number of years have passed, a good number of things have changed that it might be worth a try.

Our son has blossomed under 'intervention' in the form of OT. I was amazed that the OT could get him to talk, because he had issues with SM from 2-5ish. He went a long time at daycare without talking to anyone. And then when he started, he'd whisper. I think he was 5 before he said a word to his Sunday School teacher. Even now at nearly 7, she always comments to me when he's said something in class. From what people described as having experienced themselves, I don't think it was full-blown SM, but he definitely tended in that direction.

OT for his sensory issues helped tremendously, along with time.

I nearly fell off my chair when his first grade teachers told me this winter that he regularly contributes in class! He never contributed during K. He did talk to his friends some, and I nearly danced a jig when his K teacher removed a privilege for him talking too much during quiet time. (I'm sure the woman thought I was completely nuts.)

I think the OP is going about in a sensible way, and has a good sense of her child. She knows her child well enough to figure out if this is causing anxiety. I would have pulled ds from OT if I'd seen it causing him anxiety. I had a long talk with his teachers when their harping on his handwriting began causing anxiety. The only form the anxiety came through was ds asking me to redo 'homework' when we were playing school.

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#26 of 34 Old 03-18-2008, 02:08 AM
 
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That's very reassuring Lynn.

I'm reading your response, and realizing that I've totally hijacked this thread. However, in my defense, I think the OP was asking for other people going through this. I do hope the OP does come back and let us know how things are going.

I'm so glad someone came on and mentioned a success story. I was beginning to feel worried.

Mama of 3 girls: 7.5 , 6 , and 4.5
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#27 of 34 Old 03-19-2008, 12:14 AM
 
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Mylie - but do you think your experience would have been more pleasant if you had gotten help at a much earlier age? Not pressured help, but safe help in a caring environment?

When I was small..No..There wasn't a person on Earth who would have been able to get me to talk if I was scared and uncomfortable.It was just physically impossible for me to get it out..I would stop breathing till the person left the room.

I can't tell you what to do with your little ones..But this is what I would do if my Lily was like I was as a little girl(she isn't,she has already proven her strong personalitly)..I would always be available and keep her close..I wouldn't smother her but I always felt like I couldn't get close enough to my mother when I was afraid of life.I wanted to crawl into her skin and hide..I think at times that freaked her out a bit and after a time I realized I was making her uncomfortable and I stopped..But I would understand and hold my child for hours if I had to to make her feel safe and secure..

Would I want her to play sports or go skating or go the birthday party?Well yes I would but would I make her?No.
Would I force her to look people in the eye and speak to them cause it is the polite thing to do?I would want her too but I wouldn't force her too..

People who don't have extreme intorverted personalities that end in selective mutism don't understand the pain a person feels when someone tries to force them into a world where they can't possible function without pain at that time..It almost phycically hurts..

Let me try to make you understand..Have you ever woken in the middle of the night from a scary very bad dream..And at that very moment when your not quite awake but remeber the fear very well you are laying in the dark and am sure you have heard something..It is cold and coming..Your body is froze and you can't move a muscle and your throat and your stomache are locked and are hurting.That is how it feels when a child with selective mutism is forced into a situation of speaking or being reconized in a group..

I think a child has to lead the way in these matters..I did eventually..Granted I do most of my chatting on line but at least I can do it now..years ago I couldn't even do that..But here in the rooms my fingers are finally unlocked and I can talk to you..But I am glad that no one ever forced me to do it earlier..I don't think I could have borne it..

Good luck and I hope everything works out for you and your kiddos...
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#28 of 34 Old 03-19-2008, 10:54 AM
 
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Mylie - Thank you for your perspective. It does help to know what may be going on inside her little mind.

I've known she's been in need of a lot of physical contact with me, since birth. She's always been my most cuddly one. I haven't always been able to deal with her the negative aspects of her emotional state, though. Because she'd also have multiple meltdowns a day, met almost everything with a negative reaction, and she'd create a conflict over just about anything (like one time when giving her a granola bar with the package opened too much would send her over the edge to a meltdown). Our relationship became rocky for a while, because while she'd be totally unpredictable on what would send her off, I'd also be unpredictable in out I reacted - some days I'd be understanding and sympathetic, other days I just had enough of it. She had absolutely no ability to deal with disappointment.

We couldn't even go outside and play with our neighbors sometimes because she'd eventually have meltdowns and loud tantrums. It was painful for both of us.

I've got about 10 books on how to handle "spirited" kids (positive discipline ones, and a few about managing emotions, like for instance one aptly titled Dealing With Disappointment), but none of them really helped because I really couldn't learn the information fast enough to be helpful.

And dh also didn't help as much as he could. I mean, I tried to give him the information I learned, and while he could go along with it for a while, he still resorted to being grumpy when he disciplined.

In addition to just being mute in the school setting, other characteristics I've read about with this condition have helped explain who she is.

I found this snippet from another mama who looked into it a couple of years ago. It used to be on the Selective Mutism Group's website, but is no longer there (I don't know why).

The following characteristics have been found to be common in children with SM:
Heightened sensitivity to noise/crowds/touch (possible Disorder of Sensory Integration, or DSI)

Difficulty separating from parents (especially younger children) and difficulty sleeping alone
Introspective and sensitive (seems to understand the world around them more thoroughly than other children the same age, and displays an increased sensitivity to feelings and thoughts)
Behavioral manifestations at home, such as: moodiness, inflexibility, procrastination, crying easily, temper tantrums, need for control, bossiness, domination, extreme talkativeness, creativity and expressivity
Intelligent, perceptive and inquisitive
Tendency to be creative and artistic
Bedwetting, daytime wetting accidents (enuresis), anxiety over using public restrooms (paruresis), or accidents with bowel movements (encopresis)
Excessive tendency to worry and have fears (often manifested in children older than 6 years of age)

Except for the toileting issues, she has EVERYTHING on this list.

I don't know why, but having this exact description of my dd down to a T, totally has me incredibly relieved, like, I finally know who she is, and everything makes so much sense now in the context of this condition.

Whereas before I had clues that pointed to different conditions, none of which seemed to fit and therefore confused me even more, I finally have something concrete to explain all my dd's behaviors, quirks and gifts.

I don't feel like I'm in the dark anymore. I feel like I don't have to explain/apologize to anyone for her behavior. I feel like I have confidence in knowing what she needs now, whereas before, other people would make me feel like she's just manipulative or attention seeking. And even though I dismissed what they said initially, it would creep into my thoughts that well, maybe she *is* being manipulative and she *is* attention seeking. I know now she's not. And it makes me tear up with having that clear picture I've been looking for.

Now, AFA the diagnosis part. I need to have a professional to confirm this. Mostly to have the dx to arm myself against school administrators. They do reading in class and have assessments 4 times a year in K! If she doesn't talk during class, I'm going to have to get them to allow me to videotape assignments at home and have them review them at school. I can't have that kind of special treatment without a dx and a IEP or 504 plan in place. Even if we don't do the "therapy" as such, accomodations have to be made otherwise they will think she's developmentally delayed. She's so NOT. She's so bright - besides the typical knowing of her alphabet, numbers to 100, colors, etc - she knows the names of the planets! She figured out that Stephen Grover Cleveland was the 22nd and also the 24th president of the US.

There is no way this child is delayed, but the schools are going to be hard pressed to figure that one out if she doesn't speak when they need to check her progress.

And actually, even though our relationship has been on the mend anyway, this is further softening my view of my daughter, and I've been even more deliberate in spending time cuddling with her. She's been very responsive to that, of course.

Mama of 3 girls: 7.5 , 6 , and 4.5
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#29 of 34 Old 03-19-2008, 10:36 PM
 
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You might want to check out The Feingold Diet for your little girl..It would probably help..It did me..I put my son on it for ADHD 11 years ago and found it helped me just as much as it did him..My anxiety levels were way down and while I still am not a sensational speaker I do better in public and don't constantly think everyone is staring at me and talking about me..My head is clearer and calmer..Check it out and try it for a month..You might be surprised how it can help even the littlest thing..

www.feingold.org


Take care of you and your little one.
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#30 of 34 Old 03-20-2008, 12:17 AM
 
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Wow, I'm excited to find this thread. My dd has selective mutism. She is pdd-nos, has anxiety disorder, sensory problems. I didn't even know there was a name for it until last week. She is this way in public places, with strangers, when she is feeling anxiety at home (she is much more vocal at home though and with family), etc. She is very preoccupied with making mistakes and very nervous. Before her dx, I thought that my dd was just strong willed and difficult, and well bratty too, but we realized she has real issues that we needed to address and help her with. Thanks for all the great links here! Off to look them up!
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