Here’s a post about how we came to suspect my middle daughter had selective mutism when she was 4.5.
The Silence Within – is my daughter a selective mute?
We took her to a pediatric neuropsychologist in April 2008, who was very good at what she did and very thorough. I have to add it’s not mandatory for an extensive neuropscyhological workup to get the diagnosis, but we chose that route because I knew they would provide a battery of tests to evaluate her strengths and weaknesses, even if it was rather expensive. In addition to selective mutism, I had also suspected a higher than average intellect and I wanted to be able to show the schools what I already felt was true for her.
This is what the testing looked like for her
Second and third testing sessions
Testing sessions are over
Meeting with the Neuropsych for the results
She pointed me in the direction of what is going on behind the symptoms. Her theory (and after researching it a year and a half, I’m convinced of it too) is that there are primitive reflexes (predominantly the MORO reflex and the Fear Paralysis Reflex) that haven’t been integrated so that they fade into the background. They are in a state of “high alert” – you know, the flight/freeze/flight stress response. They are stuck in “freeze” mode. We have to help those reflexes integrate. This is easier when the child is young and the brain is more flexible.
One thing to keep in mind is that oftentimes anti-anxiety medications are prescribed for children with SM who have been struggling for years. The earlier the child receives help, the less ingrained the mutism will be and the less likely medications will be needed. After 8 years of age, it becomes more difficult to break the ingrained habits of SM.
It is often stated that it is necessary to keep children with SM in school in order for them to overcome it. Some parents are electing to homeschool their SM children. I can’t say for sure if that is right or wrong. I always kept that option (homeschooling) open myself.
Does a child *need* a brick and mortar school? Not necessarily, however, in the RIGHT circumstances, it could be beneficial. But it has to be the RIGHT circumstances. The wrong circumstances could be devastating to an SM child.
The wrong circumstances:
- The teachers trying to “force” child to talk.
- The teachers giving up on child if they don’t talk.
- Teachers trying to entice child to talk with rewards
- Teachers punishing child for not talking
- Teachers not keeping other kids from bothering child
- Teachers not using techniques to gradually help her make responses of *some* kind (sometimes SM kids will nod their heads for yes, or shake their heads for no, or can high five instead of say “thank you”).
The wrong circumstances will keep an SM child trapped or force her to retreat even deeper.
The right circumstances –
- Teacher has knowledge of what SM or is willing to learn.
- Teacher has the ability to make a comfortable environment within the classroom (good classroom management skills) so that child feels “safe” (being bothered by other kids is not a safe feeling).
- Teacher keeps pressure low but expectations high (meaning, the teacher understands how difficult this is, and will accept ANY kind of nonverbal response and eventually getting more responses out of the child – mouthing the words, whispering to the teacher).
The right circumstances will help prevent worsening of the condition. The most ideal conditions will help increase confidence and reduce anxiety.
I finally wrote a post on what my daughters preschool experiences were in the special needs and community preschool (how different they were in intent and result) and her IEP goals/accommodations in preschool and kindergarten.
Notes on preschools and IEP accommodations for SM kids
This is a great handout you can give to teachers while you try to work on the SM.
SELECTIVE MUTISM SUGGESTIONS FOR TEACHERS
(ah rats the above is a dead link, please leave me a message and I can email you the document if you are interested).
If the teacher is willing to learn about SM, you know you have a good teacher on your hands. If the teacher is not, then I wouldn’t send my child to that teacher.
For us…even though K’s community preschool teacher and the preschool director did not know a thing about SM, they were willing to learn and willing to help my daughter as much as they could even if it meant simply making her feel safe, accepted and loved (yes, there are some really loving teachers out there, believe it or not).
K’s second year of preschool was very different as a result of many factors that fell into place.
So, the “plan” of action to do next that was suggested was
- sensory OT
- using visual pictures as much as possible – get picture books depicting moods and emotions.
- get a behavioral plan and IEP – she’s going to need help easing into school.
- get into a movement program – specifically feldenkrais – to help with the mixed dominance issues – it will help coordinate her left and right sides. 8-10 sessions might do the trick.
- Family therapy to help all of us cope.
When I added up all the time and money it was going to cost to get specialists involved (and this was when gas prices were close to over $4 a gallon and everyone was at least 45 minutes away from us), I ended up looking for cheaper alternatives to things we could do to substitute that would have the same effect.
To see the things that we worked on at home, see this post:
So what has worked for her selective mutism?
The only thing “official” we decided to pursue is a preschool IEP. In our state, it was much easier to get an IEP at the preschool level than it would be at the elementary school level because the laws have changed and parents could no longer request intervention – it has to come through the teacher after RTI (response to intervention) techniques fail to work. It takes a lot longer and more red tape.
To get the preschool IEP, I went through the preschool state intervention program. In some states/school districts, it’s incredibly hard to get an IEP for SM. I anticipated a lot of difficulty. I was surprised at how easy it was and we were allowed to enroll my daughter in the state preschool intervention program if we desired.
So, last year, after much deliberation with my husband (did we really think she needed the special needs preschool?), we opted for dual enrollment. Dd2 spent 2 days a week at special needs preschool, and 3 days a week at community preschool.
If things didn’t improve at either place, I always held out the option of pulling her from one or both programs.
Initially she was doing much better at the special needs preschool (different teacher, different class, different kids, and we’d started ballet over the summer and spent lots of time at the parks), but minimally improved at the community preschool.
Rather than re-explaining the whole thing here, I’ll link you to the post about how things went.
Here is a summary of her second year at preschool –
November 2008
Partial progress in November
PT conference from heck
Results of advocating for my child after PT conference from heck (ie having to play hardball)
Novemeber 24, 2009
And this is why life with a selectively mute child is hard (the stress of haircuts, dental visits, ballet recitals and all around social awkwardness and mama bear concern).
January 2009
Someone on her IEP team went to a seminar in Chicago about SM that had a great impact on what they decided to do for dd.
January Progress (things are definitely improving).
March 2009
And an update on how she was doing in March (huge improvement!)
****
So, yes…I do believe in the RIGHT circumstances, school can be very instrumental in helping a child make progress with SM. Unfortunately, from all the research I’ve done, what happened to dd was quite unique – because many parents around the internet hardly feel like their schools are doing enough of the right things to help their child. And on top of that, parents feel very intimidated by the school systems and have trouble advocating for their child’s needs.
August 4, 2009
Anticipating the school year with the selectively mute child
An addendum:
August 23, 2009:
So far, it’s only been 3 days into kindergarten, my daughter has had a very positive experience. This is how all the preparation and guidance for her last year came to fruition:
So is she no longer selectively mute?
No, I do not think all her anxiety has evaporated – she still has lots of existential questions at only 5 years of age, but she made huge progress from 2 years ago, unmedicated, unhurried, un-“fixed”. Rather, she was gently guided from a place of silence to a place of expression. And just like her former early intervention preschool teacher said, I think she will be able to “shine like a star” now.
September 4,2009 –
Reading assessments
One of my biggest concerns for her was how were they going to assess her reading ability if she won’t speak. She had two days of reading assessments where she read to the teacher and answered questions on leveled readers in the DRA reading program. She ended up at the end of the testing to be at a level 18, which indicates a second grade reading level. So, I guess I’m not going to have to worry if the teacher is going to tell that she’s a good reader, because she was able to show them herself. I’m so proud of how far she’s come.
September 29, 2009
You know, she looks normal (Or “What NOT to say in front of a child with special needs”).
September 16, 2010
From Selectively Mute to Student Council Representative
November 1, 2012
Five years later and still going strong.
April 19, 2013
It’s hard to believe this is the same child who had SM
For more information see these links:
Selective Mutism Group – (has a forum you can join).
American Speech Language Hearing Association
For more personal accounts of selective mutism see these links:
Silent Voices: Meagan’s Selective Mutism Story
Silent Voices: Leann’s Selective Mutism Story
Silent Voices: Jeanne’s Selective Mutism Story
Do you have a story about your selective mutism you want to share on my blog? Do you have a success story or update you’d like to share? We’d love to hear about it. Please send me an email at raisingsmartgirls at yahoo dot com to be included as a future post.
Raising Smart Girls 
Hi,
I’ve been reading your blog for a few months now – I cannot easily explain to you how much you have helped me (and indirectly my daughter). Reading about your second child made me realise we are not alone! My first born (5 years now) is so similar in so many ways. I found your recommendation of Dr Ross Green’s book really helpful – so much so that I have bought a second copy for M’s teacher!
We live in the UK, and M started school last year (at 4,4years). We decided to send her to a really small school (32 kids at last count!) which is nearby but not our most local. We have good and bad days but I think we are making progress. What has complicated things for her is anxiety about using the loo at school (and this generalises to everywhere), so she is still having accidents which affects her self-esteem profoundly.
I am a Speech and Language Therapist so had a bit of a head start in considering what was going on, but was still pretty stumped at how to deal with her intense frustration and meltdowns. I feel like I am still on an interesting and thought-provoking journey, as I think you are too.
So thankyou – I really appreciate your blog – at last someone who knows what it is like!
Laura –
I set up this blog in part to process my feelings, but also to share what I’ve learned along the way. The HARDEST part of all of this was feeling so alone. No one had ever heard of it. Worst of all, to my family who sort of knew what was going on, they had NO IDEA how bad things got for a while.
I honestly suffered for not knowing how to help her, and at the same time, help myself because those intense expressions of my daughter cut right through me.
How could my child be so miserable? How can I not get through to her? Don’t I love her enough, care about her enough? Why is the “typical” child advice not working like it did for my oldest daughter?
And the shrieks…oh, my…I thought the neighbors would think she’s been harmed.
For those…I had to learn the hard way that I had to learn how to scoop her up when she started those moments, and try to hug them away.
It didn’t always work. If I got to her too late, she would be too far gone and then she pushed me away.
It was so DIFFICULT to get through those times.
The ages of three and a half and a half to four and a half was the worst. Once I had her diagnosis, and I started learning all I could, I felt I had more strength, and more power and more hope that I could help her.
Best wishes on your journey. I hope you find the tantrums will get easier and easier as she matures. Emotion-coach her during the quiet moments with books on emotions, or through social stories you can print out on the internet. It helps to give her the language she needs to express her frustrations in words.
Here’s some ideas on my other blog about a Kid’s Problem-solving binder.
I particularly like the one called “Tantrums Don’t Help Me Solve Problems”.
http://growinginpeace.wordpress.com/2008/10/31/kids-problem-solving-binder/
Please send me Selective Mutism “Suggestions for Teachers”. We have a precious 7 year old at our school. Her anxiety has escalated to hitting and pushing those around her at school. We would appreciate any other guidance to help us provide alternative interventions to help her in the school setting. The current IEP plan is not very effective at the current time. Thanks- Michael
It’s Lara again – I’m worried about the reading situation as well. Ava is reading at home with us already, but how they will know that at school I don’t know. I know we still have like 8-9 months before she even starts kindergarten- but she doesn’t get her anxiety and fixation issues from nowhere. If ya get my drift. ; )
Yep, I sure do get your drift. I tend to be a milder version of her. She gets her high sensitivity, her intuition, her overexcitabilities (imaginational, emotional, intellectual, sensual, psychomotor) from me.
If your daughter is reading now, before K, and has SM, I bet she is probably gifted. I have always strongly suspected that many selectively mute children are also gifted too.
I think 8-9 months is enough for improvements to be seen. I think there is a lot you can do for her at home to give her anxiety reducing, sensory calming activities that will help.
Emotion coaching is key too. That Kid’s Problem-Solving Binder is full of ideas for emotion coaching your daughter.
Please send me the article referenced above “Suggestions for Teachers”. We are trying to come up with interventions for one of our students in RTI. If you can also comment on what was in the IEP that was so helpful, I would really appreciate it.
Thank you very much,
Erin
I have your email…I’ll send it out in a bit.
Hi
I am a pre-school teacher currently working with 3yr old selectively mute girl twins, and i’m interested in the IEP or behavioural targets which are appropriate for this age. or any futher support you feel may be of use.
Kind Regards
Ruth Riley
Ruth, I’ll send you some information.
Thanks for asking.
Casey.
Hi, I have a 4 year old daughter, diagnosed with SM when she was 3 (due to a very perceptive preschool teacher). We have worked with the SMart Center in Pennsylvania and she has made much progress during her Pre-K year. However, she will now be entering public school for Kindergarten and I would really like the Suggestions For Teachers that you mentioned! We successfully got her qualified for an IEP and will be meeting within the next 30 days to write it. Any suggestions for what to include would be fantastic as the team seems at a loss for how to write the IEP (this is their first time dealing with an SM child.) Thank You! Jamie
My daughter who just turned 5 has recently been diagnosed with SM. Her teachers hinted that she was autistic and after getting her evaluated we found she is a late talker/ a visual learner/ high anxiety coupled with a perfectionist and likes to be in control temperament. I am trying to learn as much as I can to help my daughter and to help assist create a non threatening environment for her in school. I would appreciate if you could email me the article referenced above “Suggestions for Teachers” or any other support i can bring to school. Thank you for opening your heart and writing about your journey. I am just starting mine and am overtly overwhelmed.
RS…
Hi…I sent you that and a few other materials you can pass along to your child’s teachers.
I can totally understand the overwhelming feelings. I empathize with you, I really do. When I started out on this journey, I felt really lost.
And while the selective mutism has faded into non-existence for us…we still struggle with perfectionism, intensity, and moods (hers and MINE). But as hard as it gets sometimes, it makes me not take much for granted.
Best wishes,
Casey
Hi there,
Thank you for the blog. I was wandering if you could please email me the “Suggestions for Teachers” – Thank you.
Hannah,
You are welcome.
I sent you the Suggestions for Teachers a moment ago.
Best Wishes,
Casey
Hi,
My 3.5 yo daughter was recently diagnosed with selective mutism and I found your blog to be invaluable. It really helped me cope with this emotionally to know there are other really smart moms out there who have experience with this and the step-by-step information you provide detailing your journey is incredibly helpful. In fact I am trying to incorporate a lot of what you shared, from the yoga DVD, to the sensory diet, trampoline, to the epsom salt.
Would you please send me the Selective Mutism Suggestions for Teachers and the Selective Mutism Intervention Presentation that your daughter’s early intervention team attended? I would be very grateful.
Also, I was wondering if you have any suggestions for playdates. We had a playdate at home this weekend but my daughter did not talk or played with her visiting playmate. It was very difficult (for me).
Thank you for your generosity! You are an inspiration!!!
LBP
LBP –
I sent you an email with those materials. I’m so glad you found my website helpful. This is exactly what I hoped would happen – providing some parent-to-parent support. It was non-existent when we were going through this 3 years ago. So I decided to be the support for others as I was trudging my way through my own fears and anxieties while I did what I could to help her.
Best Wishes.
Casey
Hi there,
Thank you for the blog. I was wandering if you could please email me the “Suggestions for Teachers” too – Thank you.
I sent you the file.
Good Luck.
🙂
I’d love to get the “suggestions for teachers” file. My dd was just dx with SM and while I’ve been reading a lot about it I’m finding teachers saying ‘what is that’? When you did your dd’s IEP did they categorize her under ‘OHI’? I’m trying to get dd covered under and IEP, but am trying to avoid getting an ED label. Any insight on that would be helpful!
Thanks!
Sarah
I sent you the information AND I’m copying my response too, so that other people might benefit from this information because I’m sure they have the same fears/concerns.
So here is my reply –
I sent you the Selective Mutism Suggestions for Teachers in pdf format as well as a presentation given from the American Speech-Language-Hearing Association about strategies that can be done to help the SM child (which I always send anyone who asks for the Suggestions for Teachers). Right on slide 13, it says, “According to ASHA, selective mutism, should be treated in conjunction with a speech-language pathologist, pediatrician, and psychologist or psychiatrist”.
My daughter had an IEP and it was put under a communication disorder…even though it technically wasn’t (according to the school). I wouldn’t worry so much about that kind of label…because the IEP was only in place for 2 years (technically, really only 1 year, but they extended it to 2 years just to be sure). Midway through the second year, they took the IEP and the label away. She’s NOT had any repercussions at all.
Since my daughter had a pediatric neurospyschologist evaluation (expensive, but worth it and insurance covered half, I had the tests in hand to prove she was very cognitively capable. They gave her developmental and cognitive tests and it actually showed she was very smart…just unable to communicate as much as she could have without the SM. They gave her the McCarthy Scales of Children’s Abilities which is primarily a NONverbal intelligence-type test (She was also given the Nepsy II as well as the Preschool Language Scales-4). If anyone would try to stick a LD/ED label on her, I had the proof she wasn’t.
I’d like to assure you that if you focus on the positive, so will your school system.
Best Wishes,
Casey
I had to re-respond. SM is NOT an EMOTIONAL DISTURBANCE. I would not let the school classify it as such. If anything, it is a expressive speech disorder (due to anxiety).
If you ever disagree with IEP issues, you can visit http://www.wrightslaw.com/ for help with advocacy and how to politely and effectively disagree with school assessments if you do not like what they have to say. For any evaluations THEY do that you don’t agree with, you can always request an independent evaulation (Wrightslaw talks about this too).
My daughter’s pediatric neurospychological exam showed a LOT of positives, including what a delightful, and cooperative child my daughter was, with the exception of having difficulties with expressive speech. They showed a 17 point drop between the auditory comprehension and the expressive portion on the Preschool Language Scale-4. The neuropsych told me that a 5 pt drop indicates a Learning Disorder.
If you can afford it (and see if you can find one that your insurance will cover at least part of it), then I might encourage you to get a pediatric neuropsychology exam IF your school wants to put an ED label on your child.
You can read more about pediatric neuropsychology here (and no, it’s NOT cheap, but you get a lot for your money).
http://pediatricneuropsychology.com/
“Pediatric or child neuropsychologists have training and experience in applying neuropsychological assessment or treatment techniques to children. Since children mature, they are faced with varying age-specific challenges in terms of their academic and social development. Far more than a simple downward extension of adult neuropsychology, the pediatric neuropsychology involves an understanding of normal and abnormal child development and learning, developmental motor skills, and language disorders as well as diseases associated with children.”
My neuropsych was clear in her assessment that my child was NOT going to be a problem child cognitively or emotionally and her office always offered to be a liaison with the school, to talk with them on our behalf (it turned out they didn’t need to).
Please send me Selective Mutism Suggestions for Teachers. I like your blog. Sharron
Thanks Sharron.
🙂
I sent you an email just now.
Thank you so much for sharing your story. We suspect our daughter (4) has SM, but still at the beginning of our journey. I would appreciate it greatly if you emailed me the ‘suggestions for teachers’. Thank you again and I am thrilled that your daughter is doing so well now! Certainly gives us all hope !
Hi Laura,
My daughter (5) was diagnosed a few months ago as well. I’m in the process of getting my daughter accommodations at school and going through lots of different therapists. If you ever want to chat, please feel free to contact me!
Laura –
Thank you, 🙂
I just didn’t want other parents to worry as much as I did and feel so alone.
I just sent you the file and another one.
I forgot to write “selective mutism” info in the subject, but if you see an email from kmc….that’s me.
Best Wishes.
Casey
Casey,
Would you know if there is an underlying nutritional deficiency issue too concerned with SM children. I read a link that talked about adding Omega 3, Vitamin B12 and magnesium and Zinc to a childs diet and was wondering if you ever came across any such information during your research.
I’m happy to say that my daughter is showing immense progress. We have our share of setbacks but the progress is helping me stay in a positive course.
Thanks!
RS
RS –
I know all those supplements are helpful to improve overall mood. Magnesium and Vit D3 deficiencies are often implicated in depression. I’ve heard Zinc is great for immunity, however, should be coupled with Copper and I forgot in what ratio.
Omega 3s are good for overall health. B-vitamins, including B-12 are good for stress relief and energy.
Calcium (by the way) and magnesium also helps promote sleep.
So, while NOT explicitly indicated FOR SM, they are all good to add to a diet. Generally speaking, it’s much better to get these things from fresh food sources (greater bioavailability), but truth is not all foods are created equal.
I do supplement with a multivitamin, I was using fish oil, but ran out..
I’m so glad your daughter is seeing progress.
That’s wonderful to hear!!!!
Best Wishes
Casey
I’m not sure if this is a coincidence or not, but we’ve actually seen a lot of improvement in my daughter since she’d been eating ‘organic’ foods and avoiding all food dyes. One of the specialists my daughter sees said that they have seen changes in kids with anxiety once they go organic. I haven’t yet looked to see if there are any studies to support this. I didn’t believe it at first, but there definitely is a difference…and she does get worse when she has processed foods oddly enough.
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Hi, Casey! I too would love to have a copy of the link for Selective Mutism Suggestions for Teachers…my Daughter was originally diagnosed with “separation anxiety” when she was 2 1/2 & was enrolled in a Therapeutic Preschool for 3 years. They eventually changed the diagnosis to Selective Mutism. She just started Kinder this Fall & is having issues as a result of being in a Therapeutic Preschool which did not teach anything educational, so she is behind her peers. Her Teacher is willing to work with her & has worked with one other Child with SM. Today the Teacher mentioned that my Daughter refuses to play at recess instead opting to sit outside the classroom door so that she can be first in line. She also insists on sitting in the same spot during class circle time & if anybody touches her or is sitting in her spot she will hit or kick them…the Teacher advised that she did not know what to do so she just told the other kids to leave my Daughter alone & find another spot away from her….is this normal SM behavior in your opinion? Thanks for the informative blog as well!
Julie
Julie – I’ll send you the files in a moment.
I don’t think the selective mutism causes your daughter to act out, but if she has sensory issues on top of the SM, then that might cause her to act out. That might be what’s happening. She’s trying to get a sense of control in an otherwise frustrating experience for her.
Here is a link to Dr. Elisa Shipon-Blum’s description of SM with a little explanation about how a concurrent case of sensory integration disorder might impact a child:
http://www.selectivemutismcenter.org/cms/what_is_selective_mutism.aspx
“Some children with Selective Mutism have Sensory Integration Dysfunction (DSI) which means they have trouble processing specific sensory information and may be sensitive to sounds, lights, and touch, taste and smells. Some children have difficulty modulating sensory input which may affect their emotional responses. DSI may cause a child to misinterpret environmental and social cues. This can lead to Inflexibility, frustration and anxiety. The anxiety experienced may cause a child to shut down, avoid and withdraw from a situation, or it may cause him/her to act out, have tantrums and manifest negative behaviors.”
My daughter was very demanding at home…needing to be in control of her environment and the people in it (including husband, her sisters and I), so she exhibited a lot of the “me first”/bossy attitudes and a little bit of hitting/kicking her sisters. It was no fun, that’s for sure. But at school, she was always very quiet and stayed clear of other kids – never touching them or bothering them. And one child actually got in her face and kept bothering her, and she did her best to look away until he got the hint that she was ignoring him.
Okay, I’ll be sending on those resources I have.
Casey
Hello Casey,
Please send me Selective Mutism Suggestions for Teachers. I have so many questions regarding teacher and principal obligations to a child with SM. They have known about her diagnosis for two years. I don’t know where to begin or how to approach the heartache I feel when I think about what my daughter has gone through in the last week. I am sure there is hope.
Thank you,
Pamela
Pamela –
I sent you a couple of files. Take a look at them and please feel free to ask me questions if you have any.
Here is a list of educational planning pdf files from Selective Mutism Group that may help you get an educational plan (an IEP or at least a 504 plan for accommodations).
http://www.selectivemutism.org/resources/library/index_html/eductional-planning-iep-idea-and-504/
And some sample letters on how to address the SM issues with the school.
http://www.selectivemutism.org/resources/library/index_html/sample-letters/
If you need more information regarding IEPs, 504 plans and how to negotiate with the schools for your child, Wrightslaw has a wealth of information too.
http://www.wrightslaw.com/
Good luck.
Casey
Hi Casey,
Your blog is amazing. I’m just starting to research on Selective Mutism for my 3 year old daughter. It is very overwhelming. I also do not have that much time because I’m working so much during the day and night and trying to buy a house. I partially take care of my 1 year old at home during working hours. I usually sleep around 3AM every morning. But I do not want to make no time as an excuse not to help my daughter to the best of my ability. I think she is also an overly sensitive child with selective mutism. She talks at home, but definitely not a chatterbox. we do have to pull teeth sometimes for her to tell us what she wants. she would rather whine or cry. If something is out of place or she doesn’t get her way, she has a meltdown at home. She just screams “NO!” over everything. We bring her to daycare 3 days a week. They have asked about what they should do to help her. I had no idea. The only thing I could tell them was that she loves to read and could read since she was 18 months old. she reads paragraphs and entire books. So, her caregiver did start having one-on-one time with her in the morning and asked her to read to her. that has helped. She now answers her caregivers by whispering, but she never talks to the other kids. she behaves pretty well at school and doesn’t have meltdowns like she does at home (only 1 time). She loves school and “plays” with the other kids by sometimes running around with them or playing by their side. Her caregiver says that other kids talk to her, but when she doesn’t respond, they go away. She also laughs, but makes no noise.
I’m trying to figure all the things I need to do. her pediatrician loosely diagnosed her with selective mutism based on what we told him. He said to watch her for a year to see if it gets worse. sometimes, kids get over it. If it doesn’t, he will refer us to a neuropsycologist. we’re thinking we should do this fairly soon. However, I’m the only breadwinner in the family, so buying a house will really put us in a position where we can’t spend money on many things outside of the necessity. if it is going to be expensive to bring her to therapy, we may have to halt on our home purchasing.
there is just so much to learn and read. any help you can provide would be so greatly appreciated. What should we be doing at home to help with her sensitivity? I read some of the links you provided and gleamed that we should be empathetic to her sensitivities, but are there special techniques that we should be teaching her to cope with her emotions? for her selective mutism, you had mentioned you brought her to parks and ballet. her daycare has a really nice outside play area that has everything a park has and more. She loves gymnastics. Is it just any sort of physical activity or only specific kinds? Is there anything special we should be doing when we bring her out or have family and friends come over? the basic thing I’ve gathered is that we should not be enablers and jump in to answer for her and also not give up when we ask her questions and she doesn’t answer. sometimes that has worked a little bit. She doesn’t tell us stories, so we usually ask a bunch of questions where she ignores us. So, I do ask while looking at her waiting for a response. Sometimes this works, other times, she whines, looks away or walks away.
Could you please send me Selective Mutism Suggestions for Teachers and any other documentation that you think should help? Her sensitivities along with her selective mutism has been causing strains at home since she whines and cries but then doesn’t use words to tell us what’s wrong. Having a new baby around is probably bringing on jealousy. we’re guessing this may be causing some of the meltdowns. i’m still breastfeeding the baby since she never took the bottle. she’s also underweight so that I have to constantly feed her. I work from home most of the time. When i do go into the office and my husband feeds her, the baby ends up losing weight. So, that’s why most of my free time, I end up taking care of the baby. I am trying to spend more time with my 3 year old, as much as I can.
I know I wrote a lot, but wanted to give you my background. thanks so much for any help you can give!
Thank You,
CS
I understand your concerns. There’s a LOT going on in your life right now, and it is possible that your daughter, in addition to being a very bright child (because she’s reading already) and sensitive to things, might also be sensitive to the emotional climate of the household. If you are stressed, if you and your husband are squabbling at all, she might be picking up on it. And, I will say this…if you are not getting to sleep until 3 am…be ready for a breakdown of your own. You can only contain so much stress and worry about your children, the house hunt and working. What have you done to take care of YOUR self??? Have you had a breakdown yet? I can’t tell you if you should give up your house hunt, but you have to weigh the pros and cons of pursuing it with all that’s going on.
If your infant is having feeding difficulties, I really feel for you. I know what that is like too.
https://raisingsmartgirls.wordpress.com/2009/05/10/my-breastfeeding-story-and-this-is-what-nursing-a-toddler-looks-like-while-studying/
If you aren’t sleeping well, you are ALSO not making a lot of milk. Your milk production increases while you sleep. The peak hours for milk production are between 9 pm and 6 am. By the time I had my third child, I was a pro at co-sleeping and night nursing. My youngest was nursing while I slept.
Here is a link about cosleeping and nursing safely. You’d get more sleep that way. The baby gets more milk too!
http://www.kellymom.com/parenting/sleep/familybed.html
If your child ‘gets over’ selective mutism on her own, then it really isn’t selective mutism, but garden variety shyness. Selective mutism is a pretty severe anxiety disorder that doesn’t go away without intervention of some kind, usually without some sort of intervention it becomes and ingrained habit. If it persists beyond 8 years of age, it becomes difficult to reverse (not impossible, but very hard and usually with medications). It’s VERY promising that she is whispering to her daycare teachers.
I’ll send you those files.
Have you observed her daycare? She might find the activity in the daycare very confusing, especially if it is loud and chaotic. My daughter turned away from kids who got in her face, which, as preschoolers, they usually do because they haven’t learned to keep personal boundaries yet.
One-on-one attention is always a plus. It helps any child, but especially SM kids. It’s less overwhelming and of course more personal.
I think the meltdowns aren’t JUST because of the baby (though that is part of it). She just needs constant stimulation and one-on-one contact. The meltdowns and whininess are just her way of saying I need more than I’m getting. Her saying “no” all the time is her way of trying to control things OUTSIDE herself, because I bet she feels out of control on the inside. And with the new baby…mama, I know, it’s hard. I went through it with my SM child (K) when her younger sister was born. I was nursing the baby too with K as my constant companion on the couch next to me.
No, it doesn’t make it easier for you because you already have so much going on, but trust me, the MORE compassionate you are, the fewer, or less intense meltdowns you’ll have. Think about it, wouldn’t you want someone to come along and scoop you up and hug you and tell you it will all be okay and let you cry or yell or kick something because you are so overwhelmed and frustrated and scared? And yet, you are an adult and could get help if you need to by communicating. Children, even without SM, have difficulty identifying WHAT they need so they may not know what to ask for. With SM, it’s even harder.
****
I had similar issues regarding costs of interventions. We actually didn’t pay for a lot of interventions (just the ballet), but we double enrolled her in her second year of preschool – one class she had was her regular kindergarten readiness preschool, the other one was an early intervention class through our public school district (which has great early intervention programs). As a part of her intervention, she had access to sensory based activities (including a mini trampoline in the classroom, which I discovered helped activate her speech. She was ALWAYS chatty after that).
Interestingly enough, she spoke early on in the early intervention classroom, but it wasn’t for two months or so that she began to speak in the regular classroom and only after the EI teacher came to visit her regular school.
We did a LOT of sensory based stuff at home too.
I can’t say one way or the other if gymnastics is good or bad. I think any kind of physical movement is great for kids who might have sensory issues (some children with SM have it because of sensory issues). But ballet is ‘better’ because it has gentle, full body movements that promote relaxation and focus. Gymnastics is great for overall health and coordination and balance, but I would think that it doesn’t serve the same purpose. My child’s pediatric neuropsych originally suggested Feldenkrais therapy to help reintegrate retained primitive reflexes (part of the reason for her sensory issues), but at $150 a session (and I was told 8-10 would suffice) that was 45 minutes away (and the price of gas was over $4 a gallon back then), I asked for a cheaper alternative. I was told ballet or Yoga would serve a similar function, at least in terms of gentle, full body movements. So, we enrolled her in ballet which I think was like $75 for 6 weeks at a time (and it was cheaper than the local gymnastics place too). And, we were so pleased that after a year, she actually performed in a recital on a high school stage! She was actually the best one in her age group.
With selective mutism, you need to give your daughter an opportunity to make SOME kind of response. Non-verbal responses are totally OK. Ask yes/no questions and let your daughter nod “yes” or shake her head “no”. Let her have some choices, but not too many. Allow pointing to things. Instead of forcing an SM child to say “thank you”, allow her to “high five” or give a hug. These are less stressful than verbalizations. Also, plan for a LOT of time for transitions (going out of the house and coming into the house). Rushing a preschooler never works, but especially one who is going through a LOT of adjustments.
Okay, I think that’s it for now. I don’t know if I answered all your questions, but I’ll come back to this later.
Big hugs, mama. You’ve got a lot going on. Try to take some time for you and relieving your stress.
Nice website.
I recently set up a forum where parents can go to talk about their journey and their child’s journey with SM and connect with other parents and children affected by it. As I was doing some research about children with Selective Mutism I ran across this site.
SM information is much easier to find than it was 6 years ago when I met my friend and her daughter who has SM and you have compiled some great stuff.
I am sure you wouldn’t mind if I link back here from the forum would you?
Dwayne –
No, I do not mind at all.
I try to include new resources all the time and I would love to include yours. There used to be a SM forum a while back from one of the links on my sidebar, but they closed down their discussion boards due to problems they were having with it. Parents do need a new place to go where they can get more parent-to-parent support. After all, they are the ones in the trenches, dealing with the daily obstacles that SM presents.
And yes, I do agree the information is more readily available that it was just a few short years ago.
Best wishes to you and your friend’s daughter.
Casey.
Dwayne –
I was wondering if you could share your link to your forum. The link you provided doesn’t seem to be working. Thanks so much.
Casey
Hmm, that link I used isn’t working, strange. I will have to look into that.
Here is the link to the Selective Mutism In Children forum
I hope it becomes a place where parents can just talk to other parents and realize they are not alone, as well as find resources they may not have been aware of.
Thanks!
Thank you so much for sharing your story about your daughter’s selective mutism journey. I am just beginning the process of seeking out an evaluation for my 3 year old who has not spoken in her preschool setting in the 18 months she has been there. She is extremely verbal at home and in other environments. I am a speech-language pathologist myself, but I am still very uneducated in this area. I appreciate the time you have taken to chronicle your experience and your daughter’s progress. It is so helpful for me!
I’m so glad. Later when I email you, I’ll send you some more materials you can use.
Best Wishes,
Casey
Hello, Casey
Can you please send me your suggestion to the teacher – “SELECTIVE MUTISM SUGGESTIONS FOR TEACHERS”?
We realized that my 3.5 years old daughter share the similar behavior and we started to find solution for her. I jus found your blog is extremely informational and helpful. Thank you for sharing your journey and experiences.
Best regards,
David
Thank you very much .
Hello Casey
My 3 year old daughter has SM, hasn’t been diagnosed yet but she doesn’t talk at her school and with people she doesn’t know and even it takes her time to talk with people she has known before. Also, when she is in the playground she won’t do anything if there are kids there playing, except for the swing. I just found out about SM, I thought that my daughter was extremely shy but reading comments in different pages, somebody mentioned SM, so I searched online and she has all the characteristics of SM, but not only she doesn’t talk but also she doesn’t do anything in front of people she doesn’t know.
I am now beginning to read about other people experiences, hoping that will help my daughter too. My daughter will have her evaluation with the Speech therapist and also the first appointment with the Psychologist in 2 weeks so I hope that will help. She has some problems pronouncing some words, she is bilingual. She talks at home, not a chatterbox but talks with family members that she sees often and some friends.
In my daughter school nobody has heard about SM, the teacher thought that my daughter was stubborn and she didn’t even believe us when we told her that we believe she has SM, after several weeks, she read the papers we sent from internet and finally she told us we were right but I don’t think they really help my daughter at all. We are going to change her to another school because of a better student:teacher ratio and we hope that this new school will be better for her.
Thanks for sharing your experience with SM. Your blog is very helpful. Can you please send me the “selective mutism suggestions for teachers so we can send it to the new teachers and also the presentation given from the American Speech-Language-Hearing Association about strategies that can be done to help the SM child.
Thanks in advance,
GS
Geraldine –
You’re child’s experience is common. It’s hard for some adults and educators to believe that the kids aren’t doing it on purpose. But they often do the best they can.
I just sent you the information you requested. Best of luck to you and your daughter.
Casey
Dear Casey….my daughter is now 16. She was diagnosed back in 3rd grade with selective mutism. I thought we had come a long way until just recently. She was in therapy in 3rd and 4th grade. Then I took her back when she was in 7th grade. Well now she is finishing 10rh grade. She has fainted in school a couple times this year and one of those times they took her in an ambulance to the hospital s she hit her chin when she fell. About 2 weeks ago she started not feeling well. I kept her home for a week and when I went to take her back last week she started crying and would not go. She is experiencing warm feelings (which I know is anxiety) and she asked me to home school her. I can’t get her to even go to the store with me. She was crying tonight and said that she doesn’t understand why but she does not want to go anywhere. When she does she instantly says she doesn’t feel good. I am so worried. Is there any info you can give me?
Have you had your daughter been checked for the reasons for fainting?
here’s some reasons for fainting:
http://health.msn.com/health-topics/neurological-cognitive-health/fainting-7
but, also, hypoglycemia can cause fainting too.
She probably is worried about where she might faint next…so that would explain why she doesn’t want to go anywhere. I have a friend who would get panic attacks, but then get anxiety about having panic attacks, and that anxiety would trigger an panic attack…it’s vicious circle.
What we tell ourselves can make or break our success in life. We can talk ourselves into anxiety, and I believe we can talk ourselves out of anxiety too. I really think our minds are powerful instruments that can harm us or help us heal…we just have to learn how to change the self-talk.
Have you thought of having your daughter take yoga classes? If she doesn’t want to go, there are dvds you can get for use at home…there’s many benefits for stress reduction and overall health and well being. For an older child like your daughter, guided imagery which I think would help.
There is some ideas for guided imagery for anxiety here:
http://www.innerhealthstudio.com/anxiety-relief-scripts.html
There’s also a whole mindfulness movement out there these days. You might want to check these website links out:
http://www.mindful.org/mindfulness-practice/mindfulness-the-basics
http://www.stressedteens.com/
Good luck.
Also…you might want to have her start a calcium/magnesium supplement and b-complex supplement too …because they help calm the nervous system. High quality fish oil supplements with Omega-3’s also are good for moods and heart health too.
Hi, I’m a speech language pathologist and have a kindergarten student with selective mutism. Would love any info (including suggestions for teachers) you can give me on techniques for classroom and specifically IEP information (goals, etc). Thank You!
Lindy –
I sent you a rather long email with the information you requested. I also described in detail her preschool and kindergarten goals and what was done with her both in school and out of school to help her. There are some things her family might be able to help her with, partly by making school a place where the child feels safe, enjoyable and can feel very comfortable there.
Best of luck,
Casey
Hi Casey!
I am a first grade teacher and have a little girl in my classroom with selective mutism. I am looking for any information you could give me to help her this year.
Thanks so much,
Christine Palmer
I sent the information you requested.
Best Wishes,
Casey
Hi Casey:
I would appreciate it if you could send me a copy of the “Selective Mutism Suggestions For Teachers”.
Thank you,
Amy
I sent you a copy of the information too.
Best wishes,
Casey
Casey.. reading the this is why life is hard and the other parents comments just makes me want to cry.. finally there are people out there that understand how hard every day is! so many times family, friends and teachers tell me “well that is normal for a child his age” like i’m a complete idiot and don’t know anything about kids because my son is my first and only child. they don’t understand that all these “normal” things may sound “normal” but put together and the intensity of them is indeed not how the typical child behaves!
i live in a small town where no one (school personnel or drs and other professionals) knows or has ever really heard of SM. I had to travel 5 hrs to a larger city this summer to get my son diagnosed. in pre-k he was evaluated for autism because he hadn’t really talked at school for over a year. so this year i was armed with my diagnosis, all the knowledge i had gained on my own and the additional sources of books and info the dr who diagnosed my son had given me. i requested the iep before school even started and it was scheduled for the 2nd week of school. i went in there all prepared and was floored when his kindergarten teacher announced he talks, raises his hand, does show and share and has to be told at times that it is not time for talking. for the third year (2 of pre-k and now kindergarten) i keep hearing how he seems so angry and controlling and dealing with looks and side ways accusations that this is somehow my fault. like i must be abusive to him or something and that i must not be teaching him the proper way to behave because he doesn’t behave as he should. once again i’m standing in front of a brick wall i can’t get through 😦 i’ve had him evaluated by an OT for sensory issues and have a psych evaluation coming up in a few weeks, but unless i get something out of these i don’t know what else to do. he is talking but seems to still have anxiety issues at times which is when he acts out and the way the teacher handles it makes it worse (like friday in line he accidentally hit another student with his lunch bag and wouldn’t apologize, something he is still having a lot of difficulty with at home. he seems very embarrassed and uncomfortable when he needs to apologize for anything. tuesday the teacher still commented in his daily report that he has still not apologized.. why after 4 days is she even still bringing it up? i’m sure both 5 yr olds had completely forgotten about it over the weekend.. who has control issues here?). i can’t get an iep because 1. hes talking now and 2. they don’t know what services to give a child with SM even if he wasn’t talking. at least if he wasn’t talking i would have an idea about the beginning goals and services of an iep but with him talking i have no idea what would be in the iep. obviously if he has sensory problems or the psych evaluation provides some other diagnosis (even just general anxiety or social phobia diagnosis) i will have more ground to stand on but currently i’m just on a cliff by myself trying not to fall off or jump.
thank you for sharing and providing help and comfort to so many of us just by knowing we’re not alone.
Tracy –
I am sorry for not getting to this sooner. Life has been crazy busy lately and I and my youngest daughter had both gotten sick. My youngest is being treated for a newly diagnosed asthma condition.
It sounds like you have had so much on your plate. I wonder if you got that evaluation and how it went. I am glad you found some comfort here, with other parents sharing their trials and joys with their children. It’s a learning process for all of us, and the gift is we can grow in strength and courage, right alongside our children.
One thing I know, is that you often have to ignore the assumptions and judgments other people make. Historically speaking, the mother is usually blamed for the unsatisfactory behavior of the child. However, the behavior of the child is not necessarily “bad”, or “wrong”, or “evil”, just an indication that the child won’t comply to the established rules of the current culture.
While it would be good to help a child develop empathy for others, forcing an apology isn’t effective. With some children, learning social skills takes longer. Some children naturally pick up on the social protocol, others need more direct instruction.
Some children are easily molded to be ‘good citizens’ at the expense of their individuality. Other children resist the rules and find them superfluous. Some are completely socially blind and don’t realize the affect their behavior has on others. In this case, some children might get a diagnosis of Asperger’s, which, to some, is a devastating diagnosis (as it’s on the autism spectrum), but to me, is also a blessing if the positive traits can be encouraged. I really appreciate the Asperger’s perspective. Sometimes I wonder if I have Asperger’s myself.
As a substitute that goes to many different schools and deals with both general education classes and special needs classes, I see a variety of different behaviors in the classrooms that need to be dealt with. I try to accommodate the personal needs of the student with the needs of the other students as well as getting the lesson plans of the day completed. Sometimes, someone gets emotionally or physically hurt by another child. I do try to get the child who hurt another child to see the effect of his words or actions BEFORE I ask them to apologize. I never demand an apology (and I don’t see how demanding one would be effective anyway), and so far, I’ve never had to. They see the effect and they do apologize.
On a personal note, I was one of those children that hated following social rules and customs. I thought they were ridiculous and irritating. I wasn’t oppositional in school because I was also shy and intense and kept to myself most times, but I did give my parents a great deal of trouble. But then again, it was partly because they didn’t model the behavior they expected out of me. It was a “Do as I say, not as I do” kind of mentality and it bugged me.
At some point, I’d like to do a post or few on these issues (emotional intelligence, empathy, conforming to society and Asperger’s), but I know it will take a lot of planning.
Good luck to you and your son.
Casey.
Casey,
thanks for responding. since i last posted a lot has happened.. for the better. i got the results of my son’s ot evaulation and he is 12% delayed in motor skills (gross and fine) and has sensory issues with sounds. we had our first visit with the child psychiatrist just this past monday and will have a follow up visit in another 3 weeks. as of now the psychiatrist says she would diagnosis him as having an anxiety disorder nos (not otherwise specified) with a history of selective mutism because while he has signs of anxiety it doesn’t fit neatly into one category and while he isn’t always entirely comfortable he does now speak in all situations. he doesn’t have social anxiety because he actually loves and craves social interaction now and even likes being the center of attention when he is not experiencing any anxiety. the psychiatrist had me bring a few papers for his teachers and school personnel to fill out and will make a final diagnosis based on those and the ones she had me do. she thinks he shows some signs of hyperactivity, impulse control and defiance but not that would be diagnosed as add/ adhd or odd because it is not affecting his school performance and may just be due a level of immaturity he has due to not socially interacting as a toddler when his SM was present. right now we’re looking at working with an OT once a week and some therapy for a little while. the child psychiatrist believes that with just that and him growing up and maturing a little (as he has been doing for the last 2 1/2 years) will lead to a full “cure” of all his issues. he has overcome so much and gotten so much better in just the last 6 months that everyone (school, family and friends) already feel like he is 100% a different child and that with a little more time and help he will truly be a “normal” child. not to say he will not still be difficult at times or a little bit quirky, but that there will not be any disorders in play anymore. he has gotten so much better at home, not having huge tantrums and meltdowns on a daily basis, talking to people outside the home at school and social functions so much that i have been able to put him into activities at the church and library where i don’t have to be present. the biggest thing that helped my son was building his confidence and self esteem like the SM specialist that diagnosed him instructed me to. the more that grows the more he is willing to do and when he is able to his confidence and self esteem grows even more. for once a snowball effect with a positive outcome! I know all kids are different and my son’s SM was considered transitional at the time of his diagnosis, but concentrating on building his self esteem and confidence did so much for my son in such a short period of time that I’d like other parents dealing with SM to know about this technique because I know I never seen anything about it in all my research.
Tracy –
It sounds great that your son is doing very well now. Yes, sensory issues (particularly sound) due play a part in some cases of SM and that fits what I’ve seen in my daughter.
It does sound like asynchronous development was at play, so yes, your son is catching up in that regard. It sounds like a wonderful update. I’m glad that your son is having a more positive experience with others.
Thank you for mentioning the “transitional stage” of SM. I just found a handout that might be helpful for others.
I just looked that up and found this great handout by Elisa Shipon-Blum.
Click to access Missinglink.pdf
***
The three kinds of transitional strategies are:
***
Thanks so much for that. I know, from my daughter’s experience, that she did have a transitional strategy. She spoke to me and later, whispered into her teacher’s ear just shortly before she became fully verbal.
There is someone I’m corresponding with that would appreciate this new information, so thank you for that.
I wish your son continued success. I’m finding out that general anxiety, however, is more the rule than the exception these days, and we each have varying degrees of success managing it.
Hi Casey:
My 4 year old Daughter has been diagnosed with Selective Mutism & I would appreciate it if you could send me a copy of the “Selective Mutism Suggestions For Teachers”.
Thank you so very much,
Chantal
I have twins boys who just turned 7. They are both, I believe above average in intelligence. They were both reading words at 3 and books by 4. They both have a very good grasp on the concepts of addition and subtraction and one of them taught himself to multiply last year. At school they do very well and are in the top reading group. Both their kindergarten and now first grade teachers have said that they believe they are gifted. They are very rowdy, stubborn, and defiant at home. In public they do exactly as they are told….except when it comes to speaking. They will read to their teacher and sometimes answer very short answer questions one on one or in very small groups. They will quote their Bible verses to their teachers at church but will not talk other than that and they will talk, a little bit, to a few kids on the playground if there are no more than one or 2 other kids around. They have never spoke when spoken to in public. They will not speak to their teachers at school or church other than in performance type situations. In the grocery store they will talk and cut up but if we meet someone, ecspecially someone they know, coming down the isle it is like they have an automatic off switch. They only talk freely to one another, me, their daddy and their grandparents. They will not even talk to or in front of other family members. Although they fight a lot, they always have each others back in everything. They will watch one another in social situations to make sure that the other is not going to talk. Thus reinforcing not talking. They,one of them ecspecially, likes to control every situation. My husband and I both tend to be very reserved ecspecially in unfamiliar or strictly social situations but we both spoke to others even as children. I teach first graders so although I am not an expert I do have some insight into normal behavior for this age group. If i were to “diagnose” my children, I would say they are above average,possibly gifted, selectively mute with oppositional defiant characteristics. My question, based on what I have told you, would you seek a professional opinion or diagnosis? What is the best advice you can offer for coping and helping them? Thanks so much
Missy –
I think, because they ARE reading to their teacher, and they ARE answering questions and it’s not affecting their school performance, it doesn’t sound like selective mutism to me. Being selectively mute means there is NO verbal speech in one or more social settings for at least a month.
I would strongly dissuade you from believing your boys are oppositional defiant, because that’s a pretty strong term for young children.
I would imagine a parent support group for multiples (twins/triplets…etc) would be a better use of your time, and cheaper as well. From what little I know about multiples, they play all kinds of tricks that manipulate parents [not that singlets can’t, but in different ways because they don’t have a ‘partner in crime’ ;)], making up their own games, even their own language/code. They are probably typical twin boys in that regard.
They might be gifted. That wouldn’t make them oppositional, necessarily. Just very determined to do things their own way. I’d also read up about asynchronous behavior, because while gifted children are developing at a fast rate cognitively, they usually do so at the expense of another domain (motor development or emotional development).
To help with planning your children’s educational needs, giftedness testing might be in order, but I don’t know how much it costs. It’s not cheap from what I remember.
We waited for our daughter’s school to do their screening for the gifted programs. Two of our daughters are in the gifted program. The third, 7, will be tested next year. We could have had them tested privately, but we didn’t want to spend the money.
For more information about giftedness, you can check these websites –
http://www.hoagiesgifted.org/
http://www.sengifted.org/
http://www.davidsongifted.org/
Best wishes,
Casey
Hello Casey,
can you please send me a copy of the “Selective Mutism Suggestions For Teachers”.
Thank you
Gosia
I’m sorry for the delay, we’d been sick over here.
I sent the information you requested.
Best wishes,
Casey
Thank you so much for the information you have provided. I was hoping you might send the suggestions for teachers and other materials you have found helpful. My daughter will be 3 this month and is showing all of the signs of SM. We are scheduled for an intake with a child psychologist this month as well, but I am trying to gather as much information as possible on my own.
Thank you again!
Hi Casey! Did you ever encounter issues with your daughter like refusing to wear her winter jacket, school refusal, not bathing, not wanting to brush her hair and teeth…even not eating at some point? I have a 4 year old daughter with SM…& she’s going through some heavy duty feelings at the moment!!! Chantal
________________________________
Chantal.. i had all those issues with my son. My son is 6, in kindergarten, he was diagnosed with SM 6 months ago and has just been diagnosed as anxiety disorder ONS (otherwise not specified) with a history of SM (because he is fully talking in all situations now) and ODD as well as have slight sensory issues. since overcoming his SM his ODD is a much bigger issue and all those issues are much worse. the not wanting to eat started around 2 1/2- 3yrs old and now he eats almost no real food. there are about 1/2 dozen real foods he will eat and some like ham he will only eat from 1 specific resturant and only at the location. i could bring the ham home and he won’t touch it. i think a big part of it is control because when they can’t talk they have no control so they try to control what they can. my son is more into the battles of control because of his ODD as well.. but what i do is give him as much control as possible. like he hates water on his head and face so he has the option of taking a bath in the morning or before bed and playing first and waiting to the end to wash and have his hair washed or he can do that first so its done and then play. i let him pick the brush and i can do it or he can do it and i can help finish after he does it first, letting him pick which coat to wear. he still has to do certain things but it gives him some control and we have a little less of a problem with power struggles.. for the most part 🙂
Thanks ladies for all your excellent ideas…we shall give it a try! Chantal : )
________________________________
Chantal –
Yes. Yes. Yes. Yes. Yes. Yes.
There could be two reasons for this. There might be others, but these are the two that come to mind:
1) Sensory issues. All three of my daughters went in and out of different phases of sensory sensitivity. Some children are highly sensitive from birth, and certain self-care activities bother them because of things being too wet, too gritty, too mushy, too hard, too slimy, too painful, too irritating. These sensitivities can change during different phases of development.
Refusing to eat could be because of textures of food, temperature, appearance, or even something they know might give them a stomach ache (due to either anxiety or intolerances, etc).
2) Control issues. When you have a child with SM, they often struggle so much with communicating with others that when they are with people they are very close to and love and feel comfortable around, they can act in difficult ways. I’m sure they are NOT trying to frustrate you, they themselves might just be struggling with the sense that they have no control over their ability to communicate, that they kind of make up for it in other areas of their lives. It’s a way to gain a sense of mastery over something.
Regardless of the source, the best bet you have is to not engage in power struggles with your child. Two really good books for parenting ideas and avoiding power struggles are this:
Kids, Parents and Power Struggles by Mary Sheedy Kurcinka and Playful Parenting by Lawrence J. Cohen.
If you’d been raised in a very strict home, it might be difficult to parent in a playful way. I really found that to be true. However, kids are much more willing to do something they don’t want to do if you make a game of it.
I don’t know about other SM kids, but I know with MY daughter…the more I tried to make her do something, the more resistance she gave me. And even though she is over her SM, she’s STILL like that.
She needs to feel like it’s her choice, not my command. I think this is the secret to many parenting struggles.
Best of Luck,
Casey
Casey!
Words can’t describe how thankful I am for your answer & I’m so proud of you, your family & your daughter for all the work you’ve done…& especially sharing your story with all of us families of SM children! Sure gives me hope! : )
Many Thanks, Chantal
________________________________
Chantal –
You are very welcome!
Unfortunately, with no map of my own to go by, I had to learn things the hard way – by trial and error. I also came from a very controlling and dysfunctional family, so it was very hard to be met with resistance from my daughter. I’ve had a lot of tears, a lot of frustration, a hefty dose of fear and tremendous feelings of failure, because there was no where to turn for positive support.
When I consulted my family on the matter, my mother and sisters were all so sure that I just needed “to show her (and my other daughters) who’s in control”. Well, that only made her behaviors worse, and made me feel horrible. There had to be a better way. And there is.
Think of the relationship you have with your child(ren) as a partnership, not an ownership. You have to share control. It won’t be easy, but once you realize that they need understanding more than anything, you can let go of some of the need to control the outcomes.
Something as simple as making mealtimes fun with creative ideas like:
Muffin Tin Meals
http://michellesjournalcorner.blogspot.com/
or Bento Box lunches
might be fun for your child to encourage them to eat again.
Best wishes,
Casey
Tracy Lynn –
Those are some great ideas. Thank you so much for giving Chantal some encouragement and practical tips.
Best wishes to you and yours.
Casey
Thanks Casey.. I just hope I can be of some help to other moms. I know how hard it can be. for years I didn’t know what my son had and then when i found SM it still took a long time to find professional help and I had to pretty much read books, learn all i could and give him therapy myself because i couldn’t drive 10 hrs round trip to a qualified therapist for sessions. luckily i found a great one that diagnosed him and gave me a ton of info to treat him myself. i think because i had to learn and treat him he got over the SM much quicker then had he gone to weekly therapy sessions. but it is hard and scary to have it all in my hands. the school knew nothing about SM, all the professionals in a hr radius of me didn’t really know or treat it. i felt so alone and wish i had found your site earlier then i did because i never really heard many stories of kids that did overcome SM. what little info that is starting to get into the news are usually very severe cases and the kids seem to be in therapy for years with little progress and that is so discouraging. we need hope to keep going and stories like yours provide that and I would like to let parents out there know that my son also overcame his SM. it sounds like we had a lot of the same struggles and used a lot of the same methods and i hope my small contribution to your site can help other parents.
Tracy Lynn –
Yes, it sounds like we had a similar experience with trying to obtain help that was too far away to be much use. I’m so glad you did find some help and yes, it is hard and scary to take on this problem by yourself. But at the same time, you learn so much about your own capabilities and you learn so much you never thought possible.
You know, when I started blogging about SM, I had read and heard and seen the more severe cases of SM that are resistant to treatment and it broke my heart. I was very dissatisfied with the lack of personal stories out there. Yes, there’s clinical information about the condition. There are a few professional organizations about it. But I wanted to know how others coped with the daily stress and worry about their children.
Children with SM are often lost in the cracks. Since it’s not a physical disability, you can’t see it. Since SM children are ordinarily well-behaved in the classroom (just not verbal), they aren’t the ‘squeaky wheel’ that gets the grease. There is a LOT of criticism out there too from “well-meaning” people who think we are making a big deal out of nothing (they don’t know what they are talking about). But we see the effects firsthand and it seems like our entire observation and ‘gut instincts’ are being invalidated by those who do not have any idea.
I have heard from some members of my mother-in-law and one of my sisters who would say, “but she talks to me” and “she’s fine, leave her alone”.
But you know, and I know, they aren’t fine and they need assistance, just like children with physical disabilities.
I think the worst part is when someone would see a meltdown in my child that was past the age it is typically ‘appropriate’ to have a meltdown and would look at me like I was a bad parent. But the meltdowns would happen as a result of being so keyed up and mute in school. All that tension needed to come out and it would happen over the smallest thing.
And THAT’s why I keep this site active. I want other parents to know while there’s going to be some rough stuff, they aren’t alone. And I’m so glad I’ve had my guest posters who’ve been able to talk about their firsthand experiences. That’s so amazing to me.
Thanks so much for your input, Tracy Lynn. I love hearing about how other parents are solving the challenges.
I wish you all the best.
Happy Thanksgiving!
Casey
Hi! I found your blog very helpful and inspiring, I have 5 year old daughter who’s now in KG2. Samantha was not diagnose yet but i have the feeling that she has selective mutism, our schedule to see the doctore will be next week. Is it ok if i ask you to email me the selective mutism guide for teachers? Pls. Thank you so much and God bless
Can you please send me the article about suggestions for teachers? My daughter is in Grade 2 and just received her report card. Very discouraging and negative comments on her report card. Her teacher does not understand her and I’m needing all the information I can get. Thanks so much!! My email address is tammy-lacroix@hotmail.ca
I sent you some information. Sorry it took a while, I and my littlest daughter have been really sick and I haven’t been online much. Best wishes.
Casey
Hello,
Your blog is very informative. Can you send me the SM suggestions for teachers? We have an IEP meeting tomorrow. Thank you, going to look up Feldenkrais now.
I sent the information you requested and some additional information.
Best wishes.
Casey
Hi. I have a child in my school with Selective Mutism. She may be enrolled in my class and I’m looking to learn more about how I can nurture and teach her. Could you please send me the document for teachers and anything else pertinent that could help? She is 6 and in kindergarten. Thank you!
CA, I sent you the information you requested!
Best of Luck!
Casey
I am interested in reading suggestions for teachers working with a child diagnosed as selective mutism.
I sent you what I have. Sorry it took so long, things have been hectic here.
Dear Casey,
Could you, please email me Selective Mutism suggestions for teachers? I’ve been reading your site for about a year now. Our daughter is 4 years and 10 months, and she is selectively mute. She is our 1st child, and we also have 19 months old son. We started realizing that our daughter is selectively mute when she was 3. My husband had selective mutism growing up. He did not speak in school or to any adults (except family members) until he was approximately 15. So we knew right away about what it is and what it’s called… We’ve been working with her for over a year now. I’ve used a lot of your strategies on her anxiety, on her extremely high sensitivity, numerous sensory issues, and oh my – her out of control temper tantrums… (books, sensory menu, jumping etc.) Right now I am working on trying to create your problem solving binder because she definitely needs emotional coaching… We also strongly suspect that she is gifted…She has very advanced language abilities (and she is like a little lawyer), she could put 150 piece puzzles together at the age of 4; when we talk to her about concepts of love and God, it’s like talking to an adult; she is almost reading, and she can count to 100. She is also very athletic. Her gross motor skills were absolutely amazing from the young toddlerhood on. I did a very big research on personalities and behavior of gifted children – and it matches her to a very tiny detail. When I first started reading your web site it was like you’ve described my own daughter!… I even found Feldenkrais therapist but the therapist said she cannot really use Feldenkrais on my daughter because she is so young and would not cooperate. My daughter does not let the Feldenkrais therapist touching her much, although it’s getting a little better. The therapist said it would be very invasive on her body to just do it without cooperation. So this Feldenkrais therapist is doing play therapy with my daughter for over a year now (this is very expensive but it’s been a tremendous help with addressing her behavior issues). This Feldenkrais Lady is also working with flower essences, and I’ve been using flower essences sprays for my daughter.
So right now my daughter goes to gymnastics -she is very athletic, and this is something we started since she was 2.5, and she always wants to go. She’s been in advanced gymnastic class with 5 and 6 year olds since she was 4 – she is that good. She also goes to Martial Arts class (we started it 5 months ago in hope that it will help reduce her anxiety – she is also very good at it because she is so athletic), Sunday School class and Pre-School 1 day a week. She loves her pre-school and the teacher so much that we signed her up to attend 2 days a week. She does not talk to any of her teachers but uses non-verbal communicating very comfortably. She used to have a problem using public restrooms (she would only go in the potty in a back of the car) but she totally overcame it in the last year. She craves and enjoys social interaction very much and LOVES to show off to everybody – believe it or not (even to the people she doesn’t know or knows just a little). She used to be very shy in public and social settings but also totally overcame it. In that regard, I feel that we lowered her social anxiety a lot but she is still remaining mute. When I just recently came across transitional stage of SM on your web site, it made all the sense in the world to me! I suspect that she might be in the transitional stage, and I just stared to use some of those techniques described by Dr. Elisa Shipon-Blum. Well, I am trying… she did very well with it in Martial Arts but not anywhere else so far…
She never waved “hello” or “bye-bye” as a baby and still would not do it (except for cats and dogs- she would wave to them and yell “hello!”). For some reason, she also cannot say the word “please”. She did say “please” as a young toddler, but after 3 she could never say it. Interestingly, she CAN say “please” in Russian… but not in English! Did your daughter K. had any of this or similar things like that when she was selectively mute? Also, regarding retained primitive reflexes – I now remember that my daughter had Moro reflex for a long time (it went away when she was maybe 5 or 6 month of age – I don’t remember exactly now). I do remember looking and looking at her Moro and thought at that time that it’s normal. But when my son was born I’ve noticed that his Moro disappeared very quickly, just after couple of months… Interesting, isn’t it?
Her sensory issues mostly come with dressing- clothing and shoes… She complains a lot about her clothes bothering her, and one day she would wear something but then another day this same clothes would be no good (and she would cry and fuss). Same with the shoes… She is also a very picky eater.
Like I mentioned, my husband was growing up with selective mutism. He went silent through the school till 15 years of age. At 15, selective mutism just went away… He said it was the beginning of the new school year, and he really wanted to start speaking in school – and so he did!… He was not really helped with his selective mutism. I think it was actually reinforced – he was pressed to speak by his family and his teachers… Also he was attending the therapy for his selective mutism – and was physically abused by the therapist. Here is what he is saying about it:
“As a child I was taken to therapy were I was physically beat up until I cried and screamed, it was played into a tape-recorder, and then repeatedly played back to me. After playing it back to me numerous times the therapist then would say “see you can talk”. The only thing this therapy accomplished was that it instilled in me that I don’t talk. Looking back I now understand there was no amount of pressure that would make me speak. That therapist could have cut off my fingers and toes, I wouldn’t have spoke. That is how deep the anxiety runs”.
You know, Casey, I am thinking that if my husband would have received the right support from everybody, he would probably overcome his selective mutism at a much younger age…He grew up to be a very confident and bright person (and also highly sensitive, of course!), and he absolutely speaks freely to everybody. He feels very confident at given public speeches (and he’s done it before numerous of times)! Interestingly – I did not have selective mutism but now I would not be able to give a public speech (too nervous)…
I am sorry that my letter is so long and detailed… I know how busy you are. But if you have a chance to give me any comments or suggestions I would greatly appreciate it. Just like you, I’ve spent many sleepless nights worried about my daughter and reading late into the night. I am so worried about SM would not go away… I am so concerned about her going to school… We picked private Catholic school for her (she is going to school in September). I am not sure now what is better for her – public school system or private school but we are just following our gut feeling…
I would like to take this opportunity to thank you for your time, your efforts to help kids with SM (and their parents), and of course, for your invaluable web site. It is difficult for me to put in words how much my family appreciates your work on selective mutism. You’ve been more than helpful and supportive to me and my family – I believe you are the help from God.
Thank you from the bottom of my heart,
Tatiana
Please send me another copy of the Teacehr Tips. I gave my personal copy out and never received it back. Thank you so much,
Erin Poindexter
I just sent the file off to you along with two others.
Casey
Tatiana,
Thank you so much for your touching letter and your very kind words. I just know how painfully alone I felt when our daughter went through this, and there was so much unhelpful advice from others that it felt like I was going crazy at times. I wanted to spare other families some of the anxiety and pain we went through.
I recognize similarities in our children as well. My daughter couldn’t potty in public places either. We always took that little portable potty with us where ever we went, and yes, going in the back of the car was common so that we didn’t have a meltdown about being able to use the bathroom. Now, at 9, she’s able to use the public restrooms, but only when I’m there too.
And yes, there were some things she could do, and some things she couldn’t do, depending on who was around. I don’t worry so much about the “please”, but I made sure she always gave acknowledgement for “thank you” (either a hug for people she knew well, or a high-five for those she did not know well).
Because you are working with her, I do believe she will blossom when she is ready. You are setting the stage now for that to happen. When a child is gifted, their development is uneven, and they develop some skills at the expense of others, in this case, intellectual and athletic skills at the expense of social skills. It’s not a problem for them as much as it is for us, because we know how much pressure is placed on how we socialize – on how well we conform to social expectations.
By the way, my formerly SM child (who is now in 3rd grade) is now going to recite two long lines in an upcoming opera! I can’t wait for the day we get to see her on stage.
As far as the clothing sensitivity, yeah, there’s that. My daughter was fortunately not bothered as much by clothing, but that could also be that much of her clothing was passed down from her older sister, so they were washed so many times they weren’t as stiff and scratchy. There are all kinds of new clothes out there for tactile sensitive kids – and as far as shoes go, I think many sensitive kids prefer the shoes that are like clogs because they don’t bind their feet in so much (there are versions with fur inside so they are a little bit warmer for the colder months).
As the nervous system develops, some of these sensitivities will get integrated. And those that don’t? It will be okay. Just learn to work around the little details. What we wear is not nearly as important as kindness and compassion. These children often grow up to have both in great amounts if they have been treated with kindness and compassion.
The strongest part of these children is their resistance to conformity which is really a good thing. They will need this inner strength if they are to accomplish things above and beyond the norm and to resist the negative social pressures to do things that may be harmful to themselves (I’m thinking of the teenage years). That inner strength, while making parenting challenging, is going to lead them well in the future, as you can already tell with your husband’s success.
I admire these children so much and what they have to teach US. If it wasn’t for my selectively mute child, I would not be growing as a mother or a person. It was much harder in the early years, but because her difficulties were hard on us as a family. There were so many activities we had to cut short or just not go to because we knew we’d run into problems. But then sometimes I was kind of glad to opt out of certain social situations that bored me to tears. 🙂
Those trials taught me how to re-think the necessity of some of the things we were wanting to do. I realize now, I’m GLAD for the challenges that made me really look for more understanding, to find more compassion, to take time to really listen to what was important to her and my other daughters, not what I think is important for her/them.
We still have our challenges. She’s still spirited. My younger daughter is too. In some ways, I’m glad I’m not allowed to rest for long. I don’t want to take these precious children for granted.
I think all of my nieces and nephews go to private Catholic school. Depending on the school districts, sometimes the Catholic schools are better than the public ones. I think in our district, I have heard that the public schools are just as good if not a little better than the Catholic ones available. My two older daughters are in the gifted program in their respective schools, and we do enrich them at home, so it’s working out well for them.
It’s very important that you follow your instincts with your child. If it doesn’t work out, then you can change your plans.
I don’t know if I offered up any new information or even addressed all that you wrote. I do have to take a break for now. I’ll come back and add more later.
Thanks so much for your kind words and for sharing your story and your husband’s story.
All the best to your family and your little girl.
Casey
Dear Mrs. Casey,
I need SM suggestions for teachers. Would you like to help me by sending the article to my email address?
Thanks a lot…
You’re welcome,
I sent it to you.
Casey
OMG Casey… I just found your blog. It’s making me cry! For the first time last night I felt I’m failing my 5 year old son. He’s the sweetest little thing and he’s driving me insane, our home is not a peaceful home and its starting to really affect my 7 year old. I suspect my boy has sensory issues and he’s also selectively mute. He’s screaming for help and I can’t seem to find somebody to help me help him. I feel sooooooo alone! Besides my husband that lives it with me, nobody seems to think the problem is important. My mother doesn’t even want to hear me and she thinks I’m just exaggerating. I live in Canada (Montreal) I feel that because he’s not in any spectrum of autism his not important for the system. It’s been more than 2 years I’m trying to get somebody to truly listen to me.
Thank you so much for sharing and for letting us share!
I don’t know how close you are to Ottawa, but you might try to get help from Dr. Cheng at CHEO in Ottawa Canada. There’s a waiting list, I hear, but he does work with children with sensory issues and selective mutism there.
He also has some articles he wrote that might be helpful on all kinds of things, including emotions, behavior, mood, selective mutism, and sensory issues.
http://www.drcheng.ca/page1/page1.html
I can’t figure out how to find your e-mail address. and I would Love Love Love to get a copy of the handout that is linked in this article but is a dead link. Please let me know how to get it.
I sent you the information.
Good luck
Casey
Hi Maricarmen,
Take a deep breath & don’t panic! It’s going to be okay…you have to believe that! Follow your Mommy instinct & don’t give up…but don’t lose yourself either! Take it from someone who was totally discouraged not so long ago it seemed! I too have a 5 year old girl that has SM…she has come along ways since September. I never thought in my wildest dreams that she would be were she is right now. She is starting to speak to her classmates!!! I’m from Milton Ontario…I’ve been relying on Dr. Angela McHolm (she’s in Guelph…I know it’s a bit far for you being that you’re from Montreal…Ottawa is closer!!!) but she is all for arranging a consultation via teleconference or may even travel. Here’s her website http://www.angelamcholm.com & she also wrote a practical book called “Helping your child with selective mutism: Practical steps to overcome a fear of speaking”. I refer to it often!!! In our case, we also have a Multidisciplinary team working at school…since that’s were she doesn’t speak! It’s going well…plus I have to admit that Casey was a great source of inspiration to our family as well! : ) I can’t thank you enough for all the information.
All the best,
Chantal : )
Thanks so much for being helpful Chantal
Thank you so much for the kind words. I’m glad I’ve been able to help others.
I think I’ll have to get a copy of that book, simply because it would be great to read it and maybe ask my local library to order a copy of it. I am glad that there is another book out there about it. From what I remember when I was searching, there was not that many.
All the best to you and your family,
Casey
Hi Casey,
I just found your blog about a week ago while googling for selective mutism and highly sensitive children. We have a highly sensitive 4 year old boy who has also started displaying signs of SM a few months ago. By an insane co-incidence there is another girl with SM in his class who he has become very close friends with, so that I think it helps him not feel ‘special’. He is very gentle and caring and sensitive and seems to be highly gifted. I just wanted to say that I’m finding your site extremely helpful in my search on how to help him deal with his SM and his other anxieties and how to help him thrive. I can also identify with your experience as a child, as I also grew up in a family that tended to dismiss all emotions as unimportant and even harmful. So like you, I feel like I don’t have the tools to be a naturally emotionally coaching parent so I have to learn everything from books. I still have a lot to go through on your website, but I’ve already found a lot of helpful insights, thank you for this! Could you also send me the handout with tips for teachers?
All the best,
Tupla
Tupla,
I sent you the handouts and some other information regarding SM. I hope it helps your son.
Best wishes to you both,
Casey
I’m reading your blog. I love it. I’m sorry about the toilet monster. My youngest is afraid of the bathtub a lot. Three years ago, she was taken on a haunted hayride by my sister in law that was supposed to be family friendly but wasn’t. Scary movie monsters were coming out to chase after them. And she’s afraid of being in the tub by herself in case something pops out at her.
She’s also afraid of spiders. And zombies. Yes, zombies. A neighbor boy showed her one on his Kindle fire. 😦
I’ve tried posting a comment to your blog, but it wouldn’t let me. I’ll have to try and find out why it won’t let me.
But I’m definitely going to follow you. You sound a lot like me. 🙂
Yeah, it all sounds very familiar, these fears. I think I don’t even know all that my son has. Sometimes I feel like he’s living in his own world populated by scary creatures that emit sounds that to us sound like everyday things (wind, water pipes, somebody drops something in the apartment above us…)
Hmm.. thats weird about the comments, I thought anybody could leave one. I’ll try to figure it out on my end too.
By the way, I’m also a (probably former) academic, treading my way now through the non-academic world and looking for ways to connect both to myself and to my son, and to other important people in my life. And still trying to figure out my ideal work-family balance. I’d love to talk to you about that too some day 🙂
Thank you for the handouts! 🙂
You’re welcome.
Yeah, I am not sure about the compatibility between WordPress and Blogger. I’m sure it could be something as simple on my end too. I’ll try to post comments another way…soon. My daughters have a softball game tonight.
The work-family balance is difficult, no doubt. The hardest job, but the most important one. I’m substitute teaching now in the public schools. Not ideal for me (though there is some intrinsic value in working with children, even if those children also drain my energy), but it’s something to keep me employed at the moment.
Sure we can talk about it. I have the beginnings of some idea what I want to do in the future. It has to do with biology still, but more along the lines of creating a sustainable environment.
Hi Casey
I’m Effa from Indonesia.
I just read your blog and I’m willing to know more about Selective Mutism, since it seems similar with the problem I have now with my first daughter (6 years old). I aware that I need to have good support from her teachers at school. Please send me Selective Mutism Suggestions for Teachers. Because I can’t open the link. Thanks a lot!
Effa
In case you didn’t know it, I sent you information at the email you left.
Good luck.
Casey
Hi, I have a selective mute in my year 3 class.
Really interesting blog and very useful. I was wondering if you could send me the “Suggestions for teachers”
Thanks
Hi there,
OMG Casey… I just found your blog. It’s making me cry! I try to find an answer every day for my little one(5)
Thank you for the blog. I was wandering if you could please email me the “Suggestions for Teachers” – Thank you.They dont know what to do and they dont think a pshy would help …….
Michelle,
Hi, I am touched by your response to my blog. I wanted to help others find support, encouragement and help for their children who are struggling. I didn’t want others to struggle so much alone. In the early days, I worried so much for my child, and there was so little understanding of what was going on. I look back at all the people who’ve come here looking for help and I’m so glad I could be a small part in helping other SM children blossom.
I sent you information this morning and I hope it will help your child’s teachers.
All the best.
Casey
Hi! My daughter experienced SM during her first years in preschool. We are so grateful that she overcame it and is doing very well in kindergarten.
We have turned our story into a picture book and would love it if you might share our story with others.
mayasvoice.wix.com/picturebook
Like you I have a child who has recently overcome SM. I want to write about it to help others who need a place to turn to for help or guidance. My son D was 2 years. Old when we first took notice that he would not talk to people outside our family, we took up the conversation with his Dr at every appointment and were assured that he was just shy and would grow out of it.
We decided to enroll D in preschool to give him more chance at socialization and switched preschools after he was unable to talk.
We could not figure it out D was smarter then most of our friends kids was able to write read and comprehend sooner then any other child in his age range.
Prior to starting kindergarten D was on a soccer team at one point his coach asked him to say something out load it was at that moment that we realized something was not right . D welled up and cried. Shortly after that another incident happened while at the doctors office.
While filling out forms for D to start kindergarten there was a check list of disorders one listed was SM. I checked the box and sent in the paperwork not thinking anything of it.
After D’s first day of kindergarten and him not being able to talk I googled SM read about it and said “that is my child”.
I contacted the pupil service dept. and advised them that we wanted to get help for D, they advised they had never heard of SM, even though it was in forms that they provided. The school had no way to assist us but advised that they would put D in speech and have him meet with the school psychologist.
After getting a plan in place we were hopeful that D would be able to talk soon.
As D went through the school year D increased his use of non verbal communication. My wife and I noticed that D started to have fears about getting lost, locked in building, left at school and that he would not be able to communicate to get help. At this same time I received a call from the speech teacher advising D had gotten very upset at school and wanted to make sure he was ok. I inquired what had occurred to which she advised she held him at the school after dismissal to see if he would be able to talk fearing that he would miss his bus. After this incident D stopped using non verbal communication for some time.
At this point my wife and I requested a meeting with the school and all involved with D. We advised what had occurred at the time the speech teacher disclosed that she felt D was stubborn and refused to talk, his class room teacher was in agreement. I along with my wife and the school psychologist were shocked. We were advised that they were no longer going to offer D services which we agreed to but insisted that he still be able to see the school psychologist.
My wife and I went home shocked not knowing where to turn next our insurance company had refused to pay for treatment with out a diagnosis and we could not find a place to obtain a diagnosis because everyone we called had never heard of SM. How could this be we live in NewEngland the best medical care in the country along with the best medical schools were less than an hour away.
We looked in to the SMART center in PA crunched the number and came to the conclusion that I would take the summer off from my job as a police officer, take a second mortgage out on the house and take D to PA for treatment, however we forgot out one thing the two other younger children we had plus that another child was due to arrive in September. We went back to the drawing board and researching we learned that the Easter Seals of Southern New England had a facility in Dover NH that diagnosed and treated SM. We made a call paid $1000.00 for an assessment date.
At the assessment D was officially diagnosed with SM and advised they would gladly provide services however they were concerned that the anxiety
Of traveling so far for treatment would be counter productive.
Through the assessment many recommendations were made one being that we get a prescription of an anti anxiety medication.
When school was back in session we spoke with the school psychologist who had took it upon herself to learn more about SM, we provided her a copy of the assessment and asked her how it fit with what the school had to offer. Off the record we were advised the school did not recognize SM as a disorder and that they were going to provide limited services to appease us. I consulted with other educators who advised of what needed to be said and how it needed to be said in order to obtain services. After a brief battle the school district had agreed that SM was a recognized disorder that they needed to assist with they put many of the thing in place as recommended by Easter Seals as well as hired the coordinator of Easter Seals to come to the district and teach a workshop to all of those who would ever interact with D to teach them the do’s and dont’s of interacting with a child with SM.
Over this past summer after D finished the second grade he was increased to 10mg of celexa per day “rather low dose” after approximately 3 weeks while on a camping trip D said that he wanted to send a video message to his best friend (D had never talked to his best friend that he had for the past 3 years) I handed D my iPad he recorded several messages then sent the one he liked the most. D was upset that after 15 minutes he did not get a response. A call was placed to his friends mother who answered the phone saying that she and her son were crying from hearing D talk and did not know how to respond. Eventually several video messages went back and forth, the next Day D said he want to call his friend and week after that D said he wanted his friend to come to our house so he can talk to him in person.
When D started the third grade this year it was like he has always talk he was nervous the first day because several people had said “I thought you did not talk” the teachers who were trained for the very moment said he always talks and made it appear to not be a big deal. There are still certain people about 6 who D is unable to talk to who we have learned are considered tainted. However with everyone else D is able talk to with no problem
If I can pass on advice to anyone it would be do not get discouraged and advocate for your child there are resources out there. If you are in the NewEngland area please feel free to email at drewpopo@gmail.com If you need help being pointed in the right direction.
I wish I saw this site when we first learned about SM it is such a great resource
Andrew
Andrew, would you mind if I turned this comment of yours into a blog post? This way it would be a way to share your experience with others who come to my site looking for information. I could make it a guest post, since it is very detailed, from a parents perspective.
I think your story can help other families.
There are some people even I DON’T want to talk to. I don’t think it should be required that any child, especially one who has SM, talk to people they just don’t like. In time, they may find a reason to talk to them, but otherwise, I would not have a problem with it. My daughter still finds it uncomfortable to talk to my mother, but she’s mean, so I don’t blame my daughter for it.
I had a question, is there a plan in place to eventually eliminate the anti-depressant? Or will he be on it long-term?
Feel free to move it to your blog.
Giving Meds was a big decision for us it wasn’t until we we found the right person to explain to us what a plan with the meds would be in our case D was started with 2.5 mg of celexa with a plan of increasing in 2.5 mg increments celexa was chosen because it was considered to be the most gentle of the meds. D was placed on Celexa half way through 1st grade and did not get to the 10mg level until the end of second grade. Once D began talking we kept him on the same dose until we were able to see how he interacted going back to school this past fall. After he had little difficulty his Dr advised that we should attempt to wean D off of celexa decreasing the dose by 2.5 mg every 4 weeks D is now at 5 mg. We have not noticed any additional anxiety and we have notice that the emotional outbreaks that we use to see occur less and less.
I think this is very valuable to have a parent’s perspective too, in particular, the medication route. It can help other parents to make informed decisions if they see the success other children have had with medications.
Thank you very, very much. I’ll turn these comments into a blog post soon.
As I have said when treating our son we eventually decided to use the help of meds the decision was not easy. the way it was explained to us is that the meds would be temporary they would be used to accelerate getting over the hump and a faster route to teach the brain how to deal with the “fight or flight” process by regulating serotonin with a serotonin uptake inhibitor (celexa). Meds may not be good for all kids but for our son it seemed to work the best. It certainly was not a magic even the meds took over a year to be effective.
Thank you for your description of how this all worked out. I am sure that it was not an easy decision to make. There have been times when my daughter had SO many meltdowns at home, I think I might have appreciated giving her something that would soothe her, and soothe my jangled nerves. But, in part, my own stubbornness just didn’t let me do that.
Although, now, I recently discovered a powdered magnesium supplement. It’s called Calm of all things. So, when she’s having some intense emotional feelings, I have given her that supplement. It works and she feels better. She’s even gotten to the point where she ASKS for it when she’s feeling intense feelings.
I decided against medications back then, and instead focused on things like ballet and a sensory “diet” (using sensory activities to soothe or stimulate as needed). The trampoline and hop ball were an essential tools. When she was at the pediatric neuropsychiatrist’s office working with a speech therapist who was giving her a battery of tests, she was taken into the sensory room for a break. She sat on a peanut-shaped inflatable thing and bounced and bounced. Pretty soon she started giggling. Then she couldn’t help herself and said one word (I forgot what it was). It was the first word EVER she said in front of someone she just met (it was the second or third testing session). The speech therapist noticed that my daughter loved to laugh, be silly and have fun, so she recognized an opening and a method – being goofy around my daughter helped her relax too. When another therapist gave her a test, this person refused to interact with my daughter at all, consequently, without any kind of rapport, my daughter wouldn’t talk. A portion of the test required talking, so she couldn’t answer the questions. It was really interesting to see the difference.
I also noticed that when she played at friends’ house that had a trampoline, she was stimulated to talk, too. I am not quite sure how it works, though, in The Out of Sync Child Has Fun, Carol Stock Kranowitz states that jumping on a trampoline activates the speech centers of the brain.
When she was enrolled in her special needs preschool (she was dual enrolled in the special needs class as well as a regular community preschool at a different place), it was a sensory-and-language-based classroom. So they focused on language, but also on the sensory needs of the students. During transitions, they could pick anything they wanted to soothe or stimulate themselves. My daughter frequently chose the trampoline.
Interestingly enough, she spoke in the special needs preschool within a month. It took much longer in the regular preschool. And, ONLY when the special needs preschool came to visit her class. The presence of her special needs teacher who she was speaking with helped break the ice in her regular classroom. Still, she had to contend with kindergarten. So she kept her IEP from preschool and adapted it to kindergarten. She had the IEP for a part of the year (maybe a semester’s worth, or so), and after kindergarten, she never needed assistance again.
Thank you for your blog. I found out recently my 4 year old has SM. she just started Jk and has still not spoken in class but does some gesturing and nodding to the teachers response. I enrolled her in dance, have weekly playdates, some from her class ( she does talk to them at my house, after i work on it), weekly play gyms etc. She talks to her immediate family, cousins, aunts and some other family members. After instigating conversation she will also talk to friends kids etc. she even asked the waiter for milk, but will not talk to certain other people at all. I see the anxiety in her eyes and it kills me to see hee steuggle. I found a therapist who works with Sm and my daughter gravitated to her right away and opened right up to her the minute she came in the door. The plan was for this therapist to work with her at home to get my dd comfortable with her and then do weekly class visits for an hour a week to be her clutch, encourage her etc. I was thrilled cos I know that it needs to start in the classroom and I knew this was ginna be the thing that can help her. Today the school notified me that the therapist is not allowed to do weekly sessions with her since it’s a private practice. I feel devastated abd defeated. I will speak to the school again on Monday about making sure there is plan of action urgently. I guess I wanted to ask you if A) you can email me any information you think would be helpful and B) give me any sort of feedback, advice, opinions, anything. I just feel so down right now. I just want ti know that she will be ok and get through this. Thanks again!!
I have been away from the blog for a long while.
I am sorry to hear your daughter’s having trouble getting assistance.
I wonder how difficult would it be to request that your child’s school become educated on SM and have some help from inside – this is what we did, went through the preschool/prekindergarten intervention program (they can take children even mid-year). That is what my daughter’s special needs team did – send the speech pathologist to a workshop on SM that was given by the American Speech and Language Association.
I sent you a few files so that you could bring it to them and see if they would at least learn about it.
Even if you can’t get an official IEP or 504 plan for your child, you certainly can send the school the information. The suggestions for teachers is something your child’s teacher can implement very soon without really any specialized training.
I hope it helps and keep your chin up. She is still at a good age where even the smallest changes can have the biggest impact.
Casey
Thankyou so much for your information can you please email me SM suggestions for teachers information it will be a great help for us thankyou
I emailed you the information I have.
Best of luck,
Casey
Thank you for sharing! Would you please send a copy of the article listing suggestions for teachers? Many thanks!
I sent it to you today.
All the best,
Casey
Hi Casey,
I was wondering if you could send me the Selective Mutism suggestions for teachers.
I have been getting “some” help at school, but I think the Universe is trying to tell me something here!!! The teacher has recently asked me to suggest anything that my daughter would be interested in receiving as a reward! I know that’s not the way to go.
My daughter is now approaching her 6th birthday in December. She is now in 1st grade and is in her 3rd year of school!!! I’ve never formally given out a “package” out. I need to get on it! She will be getting an IEP…and she does have a Team. We have seen remarkable changes in her especially since last year…but it’s a very “slow” process. We’ll get there! I’m grateful for your site and your family has giving me hope.
Thank you, thank you, thank you!
Chantal
You’re very welcome Chantal.
Good luck with getting the IEP set up and in place.
I sent 3 pdf files to you.
Best of luck to you and your daughter.
Casey
Hi Casey,
Really happy once I found this blog, I have this 3 years old son, he’s such a smart n bright boy at home, but has been muted for 3 months at school. Almost every week his teacher called to discuss about this, and advice me to talk to my son about school, and took him to therapy. I took an observation on google about this and I found out about SM, that perfectly matched with my son’s condition. I have given his teacher the articles, but dont know whether she had read it or not and willing to learn or not.
His 1st psychologist told me that my son was hypersensitive, so I have taken him to Sensory Integration Therapy for 1 month and the theraphist told me he was just over spoiled at home, but still not talking until now. Just few days ago, i took him to other psychologist, she said my son was SM, since the FPR not completely integrated, she told me some movement called RMT, to help balancing his FPR. I hope the therapy n the movement will done well.
My concern after reading ur blog is about teacher, should my son move to another school and tell his teacher about this, or just stay at current school, hoping his teacher will try to learn about SM, until his K level. I think I need ur article about suggestions for teacher, it should be better than my googling-version of article. Thx a lot Casey!
I’ve been really swamped this month with holiday related activities, including my daughters’ choir concert. Yes, the one who had selective mutism now sings!
I find it very sad that the sensory integration therapist said your son was overspoiled. That’s not a very professional thing to say. How frustrating.
I sent you some information that might help regarding SM, that might help you and your child’s teacher.
If your child’s current teacher won’t work with your son, don’t give up hope. Are you in the U.S.? if you do have a professional diagnosis, you can talk to early intervention services to find out if they can do anything. There might be preschool programs in your area. I would check there and see if they can help. That’s what I did in our area. She went to 2 preschools during that year. Her regular, community preschool and the special needs preschool. It was there, at the special needs preschool, where she got the most help and services. They also helped her transition to kindergarten as well.
I looked up RMT, it seems like it might be like Feldenkrais Therapy. Which we couldn’t afford at the time and just enrolled my daughter in ballet and did yoga at home.
Definitely, if you can afford the RMT, do it. I really believe that they may help, from what I have read about it. It would be interesting to know if it helps your son.
Best wishes,
Casey.
Dear Casey,
I live in Jakarta, Indonesia, there isn’t much of intervention programs in here, but I will try to talk more to his miss about his condition and hand her your files. Actually I still in dillema whether I should move him to another school which has lesser numbers of students or continue at the current school. Because when there are only 2-3 students around him, he acts quite normal, enable talk and jumping around, and his miss pay attention in this situation. She said that my son doesnt like being in a crowded place like his class with 25 kids, he will be silent and awkward.
Did your daughter also act like that? i mean she will act quite normal in the place she usually mute because there were only few people around her.
Thx again Casey!
While I think 25 kids in a class is a little large, I don’t think the size had anything to do with why my daughter didn’t talk. There was only 10 children in her regular class, but sometimes they combined two classes into one for group singing for the mom’s night and dad’s night. Quite honestly, I think my daughter just didn’t think much of the behavior of the other kids made sense. They were loud and annoying.
My daughter’s sensory issues were activated even around a few kids. She wanted to talk sometimes, just couldn’t get the words out. They were stuck in her, she said. What helped was going into the special needs classroom, which I think had 9 or 10 kids, but it had a mini trampoline and other sensory materials to work with. She used the mini-trampoline a lot and it helped. I also think she was a good judge of people. She could intuit those who she felt safe around and who she didn’t feel safe around. Like my mother? No, she did not feel safe around my mother and would not talk to my mother. But my mother was also very cold and abusive, so that does not surprise me that my daughter picked up on it. My husband’s mother? Yes, she felt very safe around her, and my husband’s mother was always very kind.
Those tips for the teacher should help. Did you get them? Hopefully she will read them over and implement some of them.
Have you visited him during school to see just how things are in the classroom? I did that on a few occasions and could immediately see that my daughter was feeling anxious about having her space intruded upon by other children who did not keep their hands and bodies to themselves.
Hello,
I am a teacher with a student who has SM. Could you email me the tips for teachers?
Yes, I did send you the files today. Sorry for the delay.
Merry Christmas!
Hi we are at the beginning stage to get our 3 years old son evaluated and can you please email me the “selective mutism resources for teachers ” so I can share with his teachers at his preschool , tks a lot !
My 2 and a half year old daughter has just started the early intervention screenings. I am so happy that when I took her to the doctor and explained certain social developmental concerns, she suggested an evaluation. So far, the OT and Speech Therapists have completed their evaluations. The OT stated that she appears to just be shy because she could carry out and follow directions. The Speech Therapist said after her evaluation, it appears that my daughter is a selective mute and that she is going to recommend services for her. We have an appointment in May with the child psychologist. I have been researching this online and the symptoms are my daughter 100 per cent. Reading your experience has given me hope for my baby girl Skylar. I have seen this behavior since she was around six months old and finally I don’t feel like I’m crazy because I’m the only one in her family that feels that it is more than being shy.
So glad!!! I wonder how things are going now for Skylar…if you get this message, please let us know.
Thank you for sharing you and your family’s journey!
I would like to write about our 6 y.o son who has selective mutisim. The more the general population is educated about SM the better for the child’s recovery!
Lucy, I agree and I would love to hear about your sons’s story. I am sorry I have not attended to my blog in a while. But please feel free to write back here and I’ll publish it under its own post, or at raisingsmartgirls@yahoo.com. I’ll only edit spelling errors on your behalf, but otherwise, feel free to write as much or as little as you would like.
Best regards,
Casey
Hello,
I stumbled upon your blog in a feverish state of panic while searching for answers on how to handle the devistating condition my daughter is in. She is 4 and recently diagnosed selectively mute, sensory processing disorder, generalized anxiety disorder, panick disorder, social phobia, and possible ADHD. I was researching Retained Infant Reflexes when I found you. Everything I am reading is so true of my daughter. I will be reading and doing everything that you suggest worked for you because it’s everything I have researched over a period of a year all written on this blog. My question is where do you live? The only professional I have not seen yet is a neuropsychologist… I will research one in my area… Thank you for sharing your journey it offers my daughter and my family hope.
Sincerely,
Sarah
Sarah, I sent you some information that will help. Good luck to you and remember to take care of you. I understand the “feverish state of panic”, but it’s going to be okay. Remember to BreathE. It will help you both if you can model peace and serenity (not easy for me to do, either, LOL).
I would like a copy of suggestions for teachers please. My daughter is 9 years old and I have had her to several counselors. She is on medicine. She was diagnosed with social anxiety and separation anxiety. She is mute at school and talks at home. She is miserable. I’m thinking about home schooling. I wish I had known about selective mutism before kindergarten.
Devona – I sent you the information. Good luck and feel free to reply if you have more questions.
can you send me that article for teachers suggestions for sm please
Hi, I wonder if anyone out there is still reading over this because I search and search and cannot find help specific enough. My daughter is 6 and a half and in 1st grade. She was diagnosed with selective mutism at the beginning of kindergarten. She has come a long way at school. She whispers a few words a day to a few select kids and has a ‘whisper buddy’ at school who helps when the teachers need to test her or assess her reading. We are on the right track, it has been a long one and we continue to improve. However my problem lies in the home setting. My daughter has severe attitude problems. She can be such a happy and sweet girl but when I tell her its time to do something, such as homework or getting ready for school she straight up tells me no. She would rather sit at the table all night and whine about homework than take 10minutes to do it. When she does start and can’t come up with an idea right away she gets so frustrated and throws her pencil. Her attitude is so bad lately and has been so defiant towards me. I don’t know how to appropriately handle this situation as I do not know if it a product of her SM or other.She is very smart and does well in school so she is not frustrated because she has trouble. I have tried sitting with her to help her come up with an answer calmly and have tried leaving her on her own to do it. I have tried rewards and punishments. I do not know a way to help her change her attitude and its gotten worse and im afraid it will continue to get worse and I do not want to lose the happy sweet girl I know is in there but if it keeps on like this our relationship keeps declining. She is only only 6 and a half and in picturing in a few years when the teen attitude comes out and if I can’t handle her now how will I be able to do it later. I need help. An article, an experience, just a suggestion. A point in the right direction would mean a lot to me so if anyone has any helpful ideas, please, send them my way. Thanks.
Leah – I will get back to you with a more thorough response and a link if I can find it.
A little bit of defiance comes with the SM condition, but it also does with higher intelligence as well as sensory processing issues, and ADHD. Punishments never work. Connect, connect, connect. The more you can love her when she’s at her worst, the better it is for the both of you. My daughter with SM taught me the most lessons about that.
Love her even when you don’t like her behavior very much. I promise, mama, the dividends will be priceless.
Get yourself some TLC, too, so you can meet her wherever she is at.
My daughters SM has been “healed” but she’s still a firecracker sometimes and at 12, we still have homework issues, but some of it is having tons of homework in the advanced classes coupled with some ADHD (which I’m not medicating her for at this time).
More later.
All the best
Casey
Leah,
I want to direct you to my post here…
https://raisingsmartgirls.wordpress.com/2008/03/17/the-silence-withinis-my-daughter-a-selective-mute/
and in particular here
http://www.selectivemutism.org/faq/faqs/are-there-other-associated-behaviors-or-personality-traits
Today I found out about selective mutism and it totally clicked that I have selective mutism. I’m a high schooler and I completely agree with your thoughts. There have been so many times throughout my years at school when teachers and have told me to speak up and honestly it doesn’t help the situation at all. I also hate it when teachers have graded class discussions. Some days, I will have completely forgotten to speak for the entire day. Other days I am more open, but still quiet during class.