I’ve had CMS (IIM sub category) my whole life but did not know what it was called until I was in my 30s. I am thankful that my parents never thought it was a problem. This sort of behavioral therapy would’ve been very harmful to me. It looks at the movements from a purely external POV and does not allow the child to explore the richness of how their mind works in tandem with the movements. My movements occur when my mind is very active. Suppressing the movements means suppressing my thoughts and feelings. That’s torture. What has been extraordinarily effective for me has been yoga and meditation practices that help me regulate and relax my mind and nervous system. My IIM mind is very vivid and rich. It is a divine gift. I wouldn’t compromise it. There are better ways than behavioral therapy.
Byrne Klay I appreciate your comment because the movements do not upset my son in any way. It’s only when it’s brought to his attention that he is aware/embarrassed. Once we came across the diagnosis, the only action I took was to direct his dad, and his sister (and myself) not to point it out. The research I did said bringing it to their attention could cause psychosocial issues. So ignoring it was essentially best. The issue being if he were to experience bullying or something at school because of it. I thought it was decreasing with age, but I’ve noticed recently it’s as intense, or more, than previously. I did mention it to his previous teacher, but specifically said it should not be brought to his attention. Only that I wished to be told if other children were harassing him because of it. I don’t know that I should do anything beyond that.
Katie Lindsey this works for me and perhaps it could work for your son. When I want to be certain that I won’t do movements all I have to do is curl my tongue and touch the roof of my mouth. No one can see it. I do it if I’m very upset and it completely stops any and all movements and gives my body no impulse to do them.
@@byrneklay316 hi , my son is 3 years old he started to have these movements since he was 28 month along with lack of sleep was terrible it decrease when he started the play group ( like a daycare) now he is 3 he started to have these movements again no all the days but some days he wakes up around 2or 3 am. It happens to you? When you could control them?
I’d like to say thank you to the John Hopkins institute. I have primary motor stereotypes, I along with other kids around the country, were chosen for a trial at home program. I was made fun of throughout elementary school so one summer I learned to control it. Thank you John Hopkins your studies have made an impact in my life 😊
@@nehakhetarpal7419 Ofc! My mom practiced in the mirror with me and I learned to sit on my hands or squeeze them when I got excited, I hope that helps! In some ways I am really appreciative of my disorder with the way my mind thinks, what my mom did was tell me it was unique and a blessing and I now see it as that, I hope he grows up knowing that! 😊
@@nehakhetarpal7419 I found this, I believe it is the same thing I did, and it says something like it develops at like age 7 but don’t worry about that cause I had it when I was a baby www.johnshopkinssolutions.com/treat-primary-complex-motor-stereotypies-at-home/ I’ll be praying that everything works out!
:/ i stim due to neurodivergency (which is technically stereotypy) and this just seems awful. i forced myself to not stim because it was "weird" and "no one else did it" and suffered because of it. its really important for processing and regulating emotions and sensations. its part of my needs. if someones doing this, its likely because its helpful to do. trying to train someone out of something just because its not conventional, but doesnt hurt anyone, is just shitty.
How many folks that have this issue have had their genetics tested to look for mutations, deletions, etc? Our daughter has some sterotypies that appear when she plays video games, gets excited playing with the dog or other kids, etc. she has a small deletion in one of her chromosomes and it is a variant of unknown significance which mean it may or may not have any impact on her. She’s smart, very capable of retaining knowledge, and acts like most kids with all other conditions considered. Just wondering how many have gone as far as genetic testing.
I truly believe our son has CMS. although he has never been diagnosed. I'm so happy found this video. I'd like to reach out and get some more information if I could! Our son is really starting to become more self conscious about it, and it's starting to effect his self esteem in public places.
legz8083 my son has steriotypic movement disorder. I'm not sure what your child has but maybe something similar. Can we talk? I've been looking for other parents with children who have a similar disorder regardless of it's a little different from steriotypic movement disorder. You can email me avanibanker@gmail.com I'd love to find out what has or has not helped you. I have gone through the struggle many years of finding a therapist but every insurance we have had has very few therapist for him or none. So I'm reaching out to learn how I can help my son myself.
I'm more curious as to why the condition exists. What causes it, and is there a pattern across people exhibiting the behavior. Has any extensive fMRI studies been done? That sort of thing.
I work as an ABA therapy and ask myself this very question. Makes me wanna go back to school and get my degree in cognitive neuroscience so I can study this
well, stereotypies in adhd and autism exist because its how we regulate and process how we feel. its actually central to it, and when im forced to not stim, i feel pretty awful and cant concentrate or calm myself down. its self-soothing, and stopping it (like in ABA) is honestly cruel because we don't have other options that do the same thing stimming does. ABA basically takes away our skills just because they aren't conventional
I don't have any mental or physical disability(autism and etc. Included). And I am a normal person daily. But when I am alone in home I do some motor stereotypes, especially when I am dreaming of something. I don't do it in front of someone. But it doesn't mean I have full control over it. Let me explain. Sometimes I see that I am doing these weird things and I ask myself, how the hell did I end up doing this? Because when I start doing, it is unconscious.
@@ali.ismayilov I've just seen this comment now, a year after you've posted it. But what you've said fully resonates with me, at the age of 27 I've only just discovered it's a legitimate condition based off of deficiencies in the brain. Completely agree with what you've said though as it lines up with my experience to a tee
I have had this funny idea, that these motor stereotypies should not be tried to be obstructed or suppressed but encouraged instead. I mean have the kid to consciously do these moves in a fun way as short physical exercises, in this way to gain knowledge and control of them. I now see the therapy really does this in a way ("awareness training"), which makes me confident I have been on the right path. Then there's the close involvement of the parents, not leaving the kid all alone with these tendencies, but actively monitoring and joining in as described when needed. I have heard of "children walking in a circle for four hours" or so, and this is unjustifiable negligence from the parents. An immediate response would be appropriate instead, trying to steer the attention to something else. Also sitting for long periods e.g. in a car chair is boring for anyone and giving something interesting for the hands to do is advisable. It requires a great deal of activity from the parents' side, of course, to always be vigilant and partaking. But I think this kind of involvement and training would surely ease the need for these kinds of surrogate functions I believe they mostly are, erroneous ways to channel emotional energy. Correct me if I'm wrong!
Hey I'm 10 months late but I actually have this disorder, from my view point it actually gets in the way of doing things. As well as it draws attention to myself that I do not want, I sadly never got this training and I wish I did. I make a certain face when I do it and while it's easy to hide my hand clinching. I sadly cannot hide my face. This training will help control it and if it's like mine where I actually hold my breath, it'll prevent many headaches! I hope my answer helped in some way!
Katharina Oehlke Hi, I also have this disorder and I kind of wish and don’t wish I got help when I was younger. Part of my movements was like rocking up and down on my tippy toes and moving from flat foot to tippy toes. Which over the course of like 10 years gave me giant rock hard calf muscles. So that is nice. But also I wish I got help because I now still do it and tbh it’s really embarrassing. Like what am I going to do when I get a wife and she sees that I still do this, how would I hide it from her? should I hide it from her? What would she think? Stuff right now in my teens I don’t have to really worry about but what happens if I still do it when I’m older and have to deal with that stuff. I honestly now though wish there was some pill or treatment I could do to stop the urges to do it.
may not be socially accepted every where you go. it could be disruptive in certain situations like while doing work in class, completing chores, making dinner. for example i myself have seen how motor stereotypy affects a child's focus during homework. i constantly have to redirect child to complete task.
Does this start off small and then get progressively worse? I notice that when my toddler gets super excited and happy, or when she's deep in a monologue telling a story, that he holds an object, really tightly and scrunches up her face, like a squeeze face, where her eye overly focus and sometimes criss cross for a split second. It just lasts for a second, and then she can go hours without doing it. This can happen when she gets stress overload. She has zero autistic traits, no ADHD, great academically. She is shy. And she does flip out over clothes not fitting.
I also have CMS but I don't have any disorders or mental problem. I am 100% healthy and intelligent. Thing is, CMS is not an autism factor. It doesn't mean that if a kid has CMS, then he/she is autistic or etc.
No hay terapia. La terapia sería para los padres para saber cómo actuar y evitar la lata que dan las personas que ignoran la existencia de las estereotipias.
2 me that duznt luk like MSB it luks more like an Autism thing. If you try 2 supress ther stimz it is painful 4 them 2 hold them in so MSBT isnt goin 2 work. Ya need 2 let them stim etc 2 help them dealin wit ther emotions & sensory issues. If som1 tryed 2 do that 2 me i wudnt listen or do it & walk off cary on stimmin.
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I’ve had CMS (IIM sub category) my whole life but did not know what it was called until I was in my 30s. I am thankful that my parents never thought it was a problem. This sort of behavioral therapy would’ve been very harmful to me. It looks at the movements from a purely external POV and does not allow the child to explore the richness of how their mind works in tandem with the movements. My movements occur when my mind is very active. Suppressing the movements means suppressing my thoughts and feelings. That’s torture.
What has been extraordinarily effective for me has been yoga and meditation practices that help me regulate and relax my mind and nervous system. My IIM mind is very vivid and rich. It is a divine gift. I wouldn’t compromise it. There are better ways than behavioral therapy.
Byrne Klay I appreciate your comment because the movements do not upset my son in any way. It’s only when it’s brought to his attention that he is aware/embarrassed. Once we came across the diagnosis, the only action I took was to direct his dad, and his sister (and myself) not to point it out. The research I did said bringing it to their attention could cause psychosocial issues. So ignoring it was essentially best. The issue being if he were to experience bullying or something at school because of it.
I thought it was decreasing with age, but I’ve noticed recently it’s as intense, or more, than previously.
I did mention it to his previous teacher, but specifically said it should not be brought to his attention. Only that I wished to be told if other children were harassing him because of it. I don’t know that I should do anything beyond that.
Katie Lindsey this works for me and perhaps it could work for your son. When I want to be certain that I won’t do movements all I have to do is curl my tongue and touch the roof of my mouth. No one can see it. I do it if I’m very upset and it completely stops any and all movements and gives my body no impulse to do them.
@@byrneklay316 hi , my son is 3 years old he started to have these movements since he was 28 month along with lack of sleep was terrible it decrease when he started the play group ( like a daycare) now he is 3 he started to have these movements again no all the days but some days he wakes up around 2or 3 am. It happens to you? When you could control them?
I obviously knew I had motor stereotypies, but not this specific subtype, wow. Thanks for inadvertently having me read up on IIM
@@KatieJoyL How is your kid's situation now?> Do you see any improvements
I’d like to say thank you to the John Hopkins institute. I have primary motor stereotypes, I along with other kids around the country, were chosen for a trial at home program. I was made fun of throughout elementary school so one summer I learned to control it. Thank you John Hopkins your studies have made an impact in my life 😊
Hi can you share what really helped. Ny son is 3 year old and I'm doing everything but it's not helping
@@nehakhetarpal7419 Ofc! My mom practiced in the mirror with me and I learned to sit on my hands or squeeze them when I got excited, I hope that helps! In some ways I am really appreciative of my disorder with the way my mind thinks, what my mom did was tell me it was unique and a blessing and I now see it as that, I hope he grows up knowing that! 😊
Thanks a ton :) yes we do tell it's ok but just trying to find replacement so that he doesnt have to face any challenges in school
I would love to know or learn about this program you have mentioned wo thehre any link to it
@@nehakhetarpal7419 I found this, I believe it is the same thing I did, and it says something like it develops at like age 7 but don’t worry about that cause I had it when I was a baby
www.johnshopkinssolutions.com/treat-primary-complex-motor-stereotypies-at-home/
I’ll be praying that everything works out!
:/ i stim due to neurodivergency (which is technically stereotypy) and this just seems awful. i forced myself to not stim because it was "weird" and "no one else did it" and suffered because of it. its really important for processing and regulating emotions and sensations. its part of my needs. if someones doing this, its likely because its helpful to do. trying to train someone out of something just because its not conventional, but doesnt hurt anyone, is just shitty.
How often does this happen to you? Every day or now and then? I’m wondering if this is what my baby has, if that’s even possible
Do you find exercise or eating healthy or any other activity helps?
How many folks that have this issue have had their genetics tested to look for mutations, deletions, etc? Our daughter has some sterotypies that appear when she plays video games, gets excited playing with the dog or other kids, etc. she has a small deletion in one of her chromosomes and it is a variant of unknown significance which mean it may or may not have any impact on her. She’s smart, very capable of retaining knowledge, and acts like most kids with all other conditions considered. Just wondering how many have gone as far as genetic testing.
I truly believe our son has CMS. although he has never been diagnosed. I'm so happy found this video. I'd like to reach out and get some more information if I could! Our son is really starting to become more self conscious about it, and it's starting to effect his self esteem in public places.
legz8083 my son has steriotypic movement disorder. I'm not sure what your child has but maybe something similar. Can we talk? I've been looking for other parents with children who have a similar disorder regardless of it's a little different from steriotypic movement disorder. You can email me avanibanker@gmail.com
I'd love to find out what has or has not helped you. I have gone through the struggle many years of finding a therapist but every insurance we have had has very few therapist for him or none. So I'm reaching out to learn how I can help my son myself.
My son has this too can you please help. Did any ki d of therapy worked ..does this decrease on it's own??
@@nehakhetarpal7419 how is your son doing now?
@@nehakhetarpal7419 my son has it too - just started getting more evident once he turned 3. How is your son doing now ?
I'm more curious as to why the condition exists. What causes it, and is there a pattern across people exhibiting the behavior. Has any extensive fMRI studies been done? That sort of thing.
I work as an ABA therapy and ask myself this very question. Makes me wanna go back to school and get my degree in cognitive neuroscience so I can study this
well, stereotypies in adhd and autism exist because its how we regulate and process how we feel. its actually central to it, and when im forced to not stim, i feel pretty awful and cant concentrate or calm myself down. its self-soothing, and stopping it (like in ABA) is honestly cruel because we don't have other options that do the same thing stimming does. ABA basically takes away our skills just because they aren't conventional
I don't have any mental or physical disability(autism and etc. Included). And I am a normal person daily. But when I am alone in home I do some motor stereotypes, especially when I am dreaming of something. I don't do it in front of someone. But it doesn't mean I have full control over it. Let me explain. Sometimes I see that I am doing these weird things and I ask myself, how the hell did I end up doing this? Because when I start doing, it is unconscious.
@@ali.ismayilov I've just seen this comment now, a year after you've posted it. But what you've said fully resonates with me, at the age of 27 I've only just discovered it's a legitimate condition based off of deficiencies in the brain. Completely agree with what you've said though as it lines up with my experience to a tee
It can be caused by social isolation in early childhood.
I have had this funny idea, that these motor stereotypies should not be tried to be obstructed or suppressed but encouraged instead. I mean have the kid to consciously do these moves in a fun way as short physical exercises, in this way to gain knowledge and control of them. I now see the therapy really does this in a way ("awareness training"), which makes me confident I have been on the right path.
Then there's the close involvement of the parents, not leaving the kid all alone with these tendencies, but actively monitoring and joining in as described when needed. I have heard of "children walking in a circle for four hours" or so, and this is unjustifiable negligence from the parents. An immediate response would be appropriate instead, trying to steer the attention to something else. Also sitting for long periods e.g. in a car chair is boring for anyone and giving something interesting for the hands to do is advisable.
It requires a great deal of activity from the parents' side, of course, to always be vigilant and partaking. But I think this kind of involvement and training would surely ease the need for these kinds of surrogate functions I believe they mostly are, erroneous ways to channel emotional energy. Correct me if I'm wrong!
Why should'nt they just do their movements. Whats wrong about that. If they feel ok with it nobody should train them not to do movements.
Hey I'm 10 months late but I actually have this disorder, from my view point it actually gets in the way of doing things. As well as it draws attention to myself that I do not want, I sadly never got this training and I wish I did. I make a certain face when I do it and while it's easy to hide my hand clinching. I sadly cannot hide my face. This training will help control it and if it's like mine where I actually hold my breath, it'll prevent many headaches! I hope my answer helped in some way!
Katharina Oehlke Hi, I also have this disorder and I kind of wish and don’t wish I got help when I was younger. Part of my movements was like rocking up and down on my tippy toes and moving from flat foot to tippy toes. Which over the course of like 10 years gave me giant rock hard calf muscles. So that is nice. But also I wish I got help because I now still do it and tbh it’s really embarrassing. Like what am I going to do when I get a wife and she sees that I still do this, how would I hide it from her? should I hide it from her? What would she think? Stuff right now in my teens I don’t have to really worry about but what happens if I still do it when I’m older and have to deal with that stuff. I honestly now though wish there was some pill or treatment I could do to stop the urges to do it.
may not be socially accepted every where you go. it could be disruptive in certain situations like while doing work in class, completing chores, making dinner. for example i myself have seen how motor stereotypy affects a child's focus during homework. i constantly have to redirect child to complete task.
It doesn't matter regardless, there's no stopping them.
I need help too. I have OCD and my granddaughter has this condition. It’s driving me crazy
Does this start off small and then get progressively worse? I notice that when my toddler gets super excited and happy, or when she's deep in a monologue telling a story, that he holds an object, really tightly and scrunches up her face, like a squeeze face, where her eye overly focus and sometimes criss cross for a split second. It just lasts for a second, and then she can go hours without doing it. This can happen when she gets stress overload. She has zero autistic traits, no ADHD, great academically. She is shy. And she does flip out over clothes not fitting.
I also have CMS but I don't have any disorders or mental problem. I am 100% healthy and intelligent. Thing is, CMS is not an autism factor. It doesn't mean that if a kid has CMS, then he/she is autistic or etc.
Coloca legenda em Português, por favor.
Is there a name for when people repeat certain sentences, words or phrases?
Echolalia or scripting.
No hay terapia. La terapia sería para los padres para saber cómo actuar y evitar la lata que dan las personas que ignoran la existencia de las estereotipias.
I think my 6 years old brother has this
2 me that duznt luk like MSB it luks more like an Autism thing. If you try 2 supress ther stimz it is painful 4 them 2 hold them in so MSBT isnt goin 2 work. Ya need 2 let them stim etc 2 help them dealin wit ther emotions & sensory issues. If som1 tryed 2 do that 2 me i wudnt listen or do it & walk off cary on stimmin.