2 1/2 year old tip toe walks, flaps his arms or clenches his fists, and vibrates his entire body when he is excited. What gives?

by Duke
(Alberta, Canada)

My 21/2 year old son displays many symptoms of the sensory seeker. As a baby he was inconsolable and is still using a pacifier at night. He is intense with every emotion, does frequent toe walking and arm flapping along with whole body vibrating (clenched fists and locking his mouth open wide). This happens when he is excited which is usually 100x or more per day. It seems to be getting worse. Does anyone out there know of any strategies that may help my son display his excitement normally?



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Aug 24, 2015
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starstarstarstarstar 		Brushing and seizures
by: Anonymous

My son started having seizures and was diagnosed with epilepsy after I started the wilbarger brushing protocol. My son is two and his OT mentioned doing this to help him with his picky eating. He's not on the spectrum and never exhibited signs of epilepsy prior to the brushing technique. His OT asked me to stay away from his face, head, and genitals which I did completely. We are desperate for answers.
Apr 12, 2015
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starstarstarstarstar 		"normal" is a dryer setting :)
by: Anonymous

I kno every child is different . . And there are some behaviors that can sound simular in diagnoses but ALOT of theses stories sound like autism . . I have a 4 year old autistic son and I remember when he was first diagnosed . . It felt like the end of the world but guess what? It wasnt! It took awhile for me to embrace that being autistic is just part of who he is, he is still my son just more speacial. Don't get me wrong it's alot of work but worth it and every little mile stone from pulling his own pants up to saying a word is never taken for granted. Embrace your children for who they are, show them unconditional love and that no matter what they are facing they can get through it cause u will b there right by there side. I wish u all the best of luck with your kiddos and that u all get the early intervention and help u need.
Mar 19, 2015
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starstarstarstarstar 		Glad to read about this
by: Anonymous

My son flaps his hands and seems to have involuntary facial grimaces and muscles going tense when excited. He doesn't seem to do it at school that they notice, but he definitely does this at home. I'd be curious to know if there are any groups or if this is related to some form of Autistic Spectrum disorder.
Jan 07, 2015
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starstarstarstar 		controllable with age
by: Anonymous

I've had similar behaviours since before I can remember. I've always had this thing where, when I get excited, I raise my arms to the back of my head and my face tenses up. I'm sixteen now and I can control it, but only when I'm around people, I just don't seem to get the urge when I'm excited in public, but still move my arms involuntarily to my head if not surrounded by friends/family. I'm now wondering whether I have something similar to complex motor stereotypy, and whether there's anything that can be done about it. Other than this (which nobody knows about thankfully), completely normal life can be led.
Nov 07, 2014
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starstarstarstarstar 		My son, now 11
by: Anonymous

I went through this with my son, he flapped his hands or arms when excited or stressed, which was accompanied by odd noises or humming, and sometimes by kicking his feet out to the side at odd angels. This behavior contributed to him being misdiagnosed as mildly autistic. I disagree that you ignore these behaviors, I think you set your child up with unrealistic expectation when you do that, because very few people in the kids life are going to ignore this. we would calmly rub his arms until he could relax again and practiced deep breathing with him and talked A LOT about controlling our hands, feet and voices. Self control needs to be taught to all children and according to the John-Hopkins article this affects as many as half to 2/3 of children in some way, so I have trouble calling it a "disorder" Be aware that is it involuntary, and keep an eye on it with your pediatrician, but putting a kid in behavioral therapy to try to save his self esteem seems like very backward logic to me. Teach self control in a gentle way, and know you are not alone, and don't over react.
Mar 19, 2013
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starstarstarstarstar 		follow up comment #2
by: Anonymous

Now what i disagree with in that letter is the part where it says it does no harm whatsoever. The harm i am worried about is his future muscles in his hands and what not.... he freezes them in such a way i am scared hes hurting the ligaments or tendons or something.

It is also good to remember, that as they get older, it probably will NOT go away, BUT they will learn to contain themselves, and release the movements in another way, which will most likely be unseen or catergorized as "the norm".

This is the FB group. There are adults there with this condition as well as parents of children who posess the same things.
https://www.facebook.com/groups/motorstereotypy/

Also if you look on pinterest you will find multiple things to do with children with SPD or CMS.

If you want to talk, please feel free to email me at 2 lil meatballs 1012 at comcast dot net. There are no spaces in the email address, i just dont want to get spammed.
Mar 19, 2013
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starstarstarstarstar 		Follow up comment
by: Mom to 2 Boys

I posted a comment a few months back regarding CMS and my 22 month old son and i was pregnant. I just wanted to give an update and shed some light on the new comments i read.

My son is now 33 months old, (and i had my 2nd boy 6 months ago today!) and has recently started to do it 10 times worse. He has picked up an obsession with garbage trucks... and just cant seem to process his excitement or his cms. He recently started to talk, about 3 months ago or so, and its amazing. He still is not good at it lol, but its a HUGE step. He is also very angry... he flies off the handle at the slightest thing, and he doesnt allow us or anyone to show him how anything works or try to help him when somethings stuck. If we try he screams at the top of his lungs.

This is a relatively new finding, this CMS/SMD... and little is known about what causes it. Most children who have it do not grow out of it, they simply just learn how to control it when they are much older.

I found this WONDERFUL article about it here: http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pediatric-neurology/conditions/motor-stereotypies/

I am part of a CMS group, and there are some adults on there whom also have CMS or SMD, and they are leading perfectly normal lives, but still have these movements.

Someone in this same group had made this to give to her childs teacher, i find it to be a great informative letter. I copied it below:

Primary motor stereotypies (also called stereotypic movement disorder), are rhythmic, repetitive, fixed, predictable, purposeful, but purposeless movements that occur in children who are otherwise developing normally. Although the movements that children with SMD make are similar to autistic stemming, children with SMD are usually NOT autistic.

Primary Motor Stereotypies are INVOLUNTARY and can include:
Intense hand/arm flapping and/or waving, Wiggling or rotating hands/finger in front of face or at sides, Opening or closing hands repeatedly, Clenching neck/face muscles, Grimacing or opening mouth, Repetitive uttering/noisemaking (usually non-verbal)
These movements and sounds are normal and do not harm the child in any way. The movements are a body’s way of expressing and interpreting certain stimuli and are not indicitave of pain or seizure activity. Sometimes specific thoughts and objects can trigger the movements. Children have little control over these movements.

It is important to remember that attempting to interrupt or redirect the child is NOT a good idea and can draw unnecessary attention to them. Pointing out the behavior or trying to make them stop can affect their ability to remain confident in social situations, and injure their self-esteem.

The best way to address a stereotypy is to leave it alone and let the child make the movement until he or she stops. Remain calm and nonchalant in addressing it with the student and other children

...continued in above comment!
Mar 03, 2013
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starstarstarstarstar 		My 26 months old son flaps,vibrate and sometimes stand on his toe while flapping
by: Bica lems

my son is 26 months old,and can only say a few words kile daddy,baby ,bye and hello.He socializes well with other kids at the play group,but he has shown this sign of vibrating his arms since about 4month old.Now he flaps his arms,open his mouth and hums and sometimes stands on his toes while flapping and huming with his body vibrating whenever he is excited.he stops when i or his sis call him to attention by telliing him no flapping ,but will quicly start again .Pls can anyone shed more light to me.
Feb 05, 2013
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starstarstarstarstar 		I went through this!
by: Anonymous

My son did the same thing til he was 6! He's 10 now and no longer does any of it. The body vibrating thing when he was excited was the strangest to me. The pediatrician told me it was just an under developed nervous system and he would grow out of it. HE DID! But, he is a high stress personality which I believe has something to do with it. He worry's easy and I was told its just his personality. You can't change who they are, just give them tools to help them deal with things better. I hope this helps.
Feb 04, 2013
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starstarstarstarstar 		Mouth wide open
by: Anonymous

My son since about 3 months opens mouth wide open when excited. He twirls one finger when he does it. His body goes rigid and then goes away. He does this daily. He is 2 now and in the market he Doesn't stop. Is he trying to speak or can't process excitement? Is this curable?

I would like to talk to someone that has experienced this
Let me know who is willing to speak to me.

Thanks

Brian
Nov 20, 2012
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starstarstarstarstar 		Thanks 2 of my children exhibit a variety of symptoms
by: Socially conscious father

2 of my kids exhibit symptoms.

Child 1: Gets angry very easily, has temper tantrums many times a day, and used to spin, but we worked with him and he has stopped that.

Child 2: Spins lots, does not talk at anything near close his age (he's 2) only mumbles mama, and dada but even these are not enunciated clearly. When he gets excited he flaps his hands, at other times he spins for minutes.

We are low income family (due to various hostile work environments, a terrible economy, etc) so we'll seek as much inexpensive assistance as possible.

Thanks
May 17, 2012
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starstarstarstarstar 		SPD and CMS
by: Mom to 2 boys

Hello! i was just reading some of your comments/concerns and i wanted to chime in what i know so far.

My son is 22m old, and i am currently pregnant with #2 son due sept. 18 2012.

My son has been showing the signs of CMS (Complex Motor Stereotypy) since about 3 months old. He does the arm flapping/wrist turning, mouth open frozen muscle breath holding toe pointing thing about 100x a day if not more, all the time when he gets excited, or watches something on tv he likes, like a show or a commercial or hears a song he enjoys, or if the cats are running around, or if he hears my keys and thinks we are leaving the house etc...

I have been talking to his pedi about it since about 6m old, and he was awesome about it and referred me to a neurologist at Childrens Hospital in Boston to ease my mind and talk about it. We have been going to her every couple months since then.

We ruled out seizures with an EEG, and i can tell hes not seizing anyways. But it was nice to have closure on that anyways. He went through a TERRIBLE phase of social anxiety, from about 10m to about 21m old... he still has it but he can tolerate people near him now, before it was horrible. She had given me the PDD-NOS diagnosis, but assured me that he probably does not have that, its just a diagnosis that needs a diagnosis and this in turn gets him in to Early Intervention (EI) until hes 3 years old.

We have been doing the EI since march, and the improvements are drastic already. He sees an Occupational Therapist also through EI, and he loves her. She comes to our home and does sensory things with him, like lentils in a tupperware bin, play doh, all types of other things i never even thought of until she introduced me to the words "sensory diet" and "deep pressure" and "Wilbarger brushing".

On top of the CMS (arm flapping), My son is weird with squishy stuff... he gags when he touches play-doh, cannot eat rice or stage 3 baby foods without gagging, or eat anything lumpy off a spoon etc... even now still.

In regards to the CMS, the word "complex" i believe refers to the arm/hand motions. There are millions of "motor stereotypys" that all types of people have, but i believe the "complex" refers to the arm flapping one.

Eventually the OT said we will work on getting him to do something else instead of the arm flapping... maybe hand rubbing or clapping or something else that is more controllable.

I am so glad i am not the only one who is dealing with this, it is nice to know my son is not a total outcast.

If anyone would like to contact me, you can find me on youtube under DiaperWarrior. Send me a message there with your email or whatever and i will respond. We can talk about whatever... we are not alone!
May 07, 2012
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starstarstarstarstar 		for my son
by: Anonymous

hello everyone.. i am a young mother of 24 yrs old.. i have a lovely 2yrs9 months son.. my son till now is not talking.. he understands everything of what you say.. even he do ll what you tell him to do.. but i dont understand why he dont talk.. if anyone can help me,sometimes i got worry for him... if anyone know any tips or help please mail me on (z.atchia@wma.intnet.mu)

thank
Mar 08, 2012
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starstarstarstarstar 		Grown Up w/ same symptoms
by: Anonymous

When I was little, I had the exact same symptoms. Unfortunately, I don't remember much of how my parents helped me stop. But everytime I would get engaged in watching something/someone my whole body tensed up, I'd stop breathing, and it was like my arms had a life of their own, flailing in every direction. Apparently I had this problem since I was a baby. Whatever my parents did to work with me (don't worry, no restraints were involved - just coaching), by the time I was about 8-10, it was controlled to mostly only my hands and holding my breath.

Eventually I grew to realize when I was doing it and forced myself to put my hands in my pockets, cross my arms, etc. to keep me from doing it. I'm now 26 years old and still have the symptom of occasionally holding my breath and parts of my body going rigid when I get enthralled watching anything/anyone. I do still catch myself putting my hands in my pockets, etc. - not sure if it's habit or if it's fear of being embarassed in public as an adult with this problem. I also have a mild case of OCD, so I'm not sure if this is associated and if it all may be linked to some sort of psychological thing. I wish I could give you some ideas on how to help your child, but atleast I could let you know that if you work hard with your child on it, there is a light at the end. God Bless you and your children!
Feb 03, 2012
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starstarstarstarstar 		My 5 year old to the Tee
by: Anonymous

This explains my 5 year old to the tee, he has been doing this since he was born with the excited mouth open hands and arms flapping, he now does it when he is playing video games he has to pause almost just to do it, I ask him why he does it he says cause it feels good. He does it when he is into a tv show as well and sometimes just when he walks, he also walks on his tipi toes every where, I have to tell him to walk on his heels he doesnt like to at all.

He is a very smart outgoing kid, he has a lisp and he is always very active full of energy he never sits down to relax it seems. We are taking him to the dr this week cause I dont want him starting kindergarten in case something might be wrong with his learning ability or anything else. I also worry other kids are going to make fun of him, he is in preschool right now he does fine with the other kids probably the most popular kid in his class. but he just has a hard time sittin still.

He also is very concentrated when he plays with his toys he lines them all up in lines then does his arm and mouth open thing. My mom said I did that when I was his age too, I still shake when I get excited and nothing is wrong with me lol.
Sep 01, 2011
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starstarstarstarstar 		2yr old twins
by: Mo

I've been crying all week. I just read the first 2 comments here and just am so relieved. I can't thank you enough. *KAY*..thank you! Someone came over and noticed that my son was "hand flapping", a red flag for Autism. Neither twins are talking yet, they babble alot, only eat crunchy food, tip toe, spin. Beau definitely has Hyposensitivity to Movement, he's hurt himself twice already, but doesn't even act hurt. It's so scary. I was positive that he would be diagnosed Autistic, and maybe Bel as well. And hey, I'm ok with that. I will love my babies no less whatever the case. But just feeling alone, and scared, and will he always be like this fear, will I ever hear him talk, etc. I've contacted Early Steps already and am looking forward to the help. But I'm so happy I found this site, and feel everything will be ok.
Nov 02, 2010
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starstarstarstarstar 		tip toe walks
by: dara

My baby hes 2 1\2 years he flap his arms and sometimes tip toe walks , at first i thought that he had an autism but he act well with others but im still searching what this all about why he act like this when he gets excited .im glad that i know there's other like my son but im worried that this behavior will stay with him until he grows up.
Oct 26, 2010
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starstarstarstarstar 		maybe this will help!
by: kay

our son who is now 4 have been having the same behaviors since he was 2 years old.

at age 3 in pre-school they evaluated him and at the end of the year, they said that he had sensory processing disorder. so they told us to do some things over the summer to maybe help until he starts the school year again and then they will give him speech therapy and OT.
they gave us some home work for his speech and he really improved with that and they also said that when he would flapp his hands to say DON'T FLAPP CLAP and for his feet to get him some better shoes that supports his arch because his feet are flat, so we did. and no result he was still doing both things.

but praise God this year his only been to 4 OT sessions and he is already doing great, she told us that when he flapps his hands to ask him this question, WHAT ARE YOU DOING WITH YOUR HANDS? and he started saying squeeze them and he does so, and we ask the same for his feet and he says walk flat. by asking himself the question it is making his brain realize what his doing so now when hi starts to do it his brain goes, HEY WHAT YOU DOING AND HE STOPS. it's only been 4 weeks the therapist are us both are seeing progress and in his speech too.

please try it it may work for your child, God Bless.
Aug 24, 2010
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starstarstarstarstar 		my daughter is ten and still doesthe arms hand flapping and mouth open wide and her back arches
by: Anonymous

my daughter has been doing this since about 5 months old i thought it was just her way of dealing with excitement at first but i am worrying now that she is ten and only has a yr left til she goes to high school i have taken a few videos of her doing it to show my doctor now to see what it is my nephew has higher end spectrum autism and he does the arm flapping and mouth i dont think it is autism in my daughters case because other than the arm and hand flapping and open mouth she has progressed very well she is doing fantastic at school she struggles to get dressed i am really worried now need help do not know what to do.
Jun 28, 2010
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starstarstarstarstar 		Flapping could be Stereotypic Movement Disorder
by: Lisa

Hello all...
Have some info that might be helpful

You might want to look up Stereotypic Movement Disorder. This is when stereotypies occur in otherwise normal children. My daughter, who is 2.5 years old now, has been seeing a pediatric neurologist since she was 10 mos old, for the flapping as I was worried about autism in the beginning. but, that has since been completely ruled out. My child has mild sensory processing disorder, the sensory seeking kind, but the neurologist has said that the flapping and open mouth is actually a stereotopy. The definition is "a movement without purpose". He said, that while it looks odd, it is actually harmless and is not that uncommon in typically developing children. It is actually a calming method and although it doesn't look like it, they like doing it. It is not necessarily a sensory thing, but can go hand in hand with it. The doctor says that most kids don't actually outgrow it, but will learn to adapt the flapping into something less noticeable as they get older due to social pressure and not wanting to appear odd. I have looked up and found some great info online, with videos, and has really helped to try to put my mind at ease. It is harmless, so that is good, it is just some kids way of dealing with all the sensory input around them. The dr says that it happens more during times of tiredness, boredom, or when there is alot going on. Here are a couple of links. http://www.motorstereotypy.com/ and http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pedsneuro/conditions/motor-stereotypies/ .

I still am concerned about my daughter, I want to make sure that there is nothing else going on, but these sites have helped ease my mind a bit. Hope they help you!
Jun 27, 2010
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starstarstarstarstar 		I made an earlier post regarding this ;)
by: luisa

I made an earlier post showing a video of me son doing this, would someone please contact me on youtube and tell me if their child is doing the same thing...I need the peace of mind of someone else who has maybe seen it in their child as no one can seem to tell me what it is he is doing...thanks ;)
Jun 27, 2010
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starstarstarstarstar 		our 5 !/2 year old still arm flaps with body tensing, mouth open wide
by: Anonymous

hi all - so happy to hear others' stories. we have been working with our son via ot/pt/SEIT in classroom until this past year when he was 41/2 years old. he was diagnosed with mild sensory processing disorder at 1 yr.old and most of the symptoms (temper tantrums with transitions, sensitivity to loud noises) have diminished, however what continues unabated is the arm flapping with wide open mouth and body tensing excitement which can happen 50-100 times per day.

We don't know what to do at this point as we've done extensive and expensive auditory processing therapy (tomatis method)and many hours of sensory gym and OT at home and the neurologist and most OTs always said that the behavior would eventually disappear as he turns 5-6ish. when we researched this matter in terms of extinguishing the behavior there seemed to be a few schools of thought: ignore it as kids will grow out of it when they realize its socially inappropriate: draw attention to it and tell child to do something else with their hands ie. clapping; allow child to do the action during set times of day - as a means of release. w never felt comfortable with any of these ways of thinking and have yet to have peace of mind on the matter, especially with our son staring a new school for kindergarten>>>>> thank you to the person who spoke about their way of extinguishing the behavior - i will give it some thought and if anyone else has any similar stories, please advise
Jun 22, 2010
Rating
starstarstarstarstar 		my 3 year old child walks on her toes, clenches her fists, and opens her mouth hen she is excided.
by: Anonymous

My husband and i noticed that our child gets excited and walks on her toes, clenches her fists, and opens her mouth quite often. She has been doing these things for a while now. I sometimes ask her why she does this, but it's like she doesn't even realize she is doing it!

Her pediatrician is sending her to pt, ot and speech therapy next month. She also has a speech problem. It's not really a delay, it is more certain letters (l,w,r,s). I thought it was something normal that kids go through, but it is not going away. Has anyone else seen this along with the other symptoms?
Apr 28, 2010
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starstarstarstarstar 		Srm flapping/ fist clenching. moth open w excitement
by: luisa

My son is doing the same thing, when he gets excited or overwhelmed he clenches his fists, opens his mouth and closes his eyes really fast, it only last a second, I am scared of what this is? His nuero said could be a motor tic, but I think it is a sensory thing? Do you have what he is doing on film? Would love to see it, I have a video online of my sons behavior, please take and look and comment if it looks the same....I would love to see if they are similiar...https://www.youtube.com/watch?v=MLBOZ-MgUuY


Seizure were ruled out btw ;)
Apr 13, 2010
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starstarstarstarstar 		So happy to see this post!!
by: Lisa

Hello... I cannot tell you how happy I was to see this particular post! Most everything I read seems to be more about sensory avoidance rather than sensory seeking- which is what my 2 year old daughter is. She was diagnosed with SPD- sensory seeking, and has been in OT for a few months now. I haven't really gotten alot of answers so far, as our therapist said that it takes a while to get to know the childs behavior and what kind of therapy would be best suited given their particular sensory needs.

I have since started researching things on my own. What you two are describing suits my daughter to a "TEE"! She is extremely expressive- gets excited about everything, squeals with delight and flaps her arms and her whole body seems to move. To most people, it is just an adorable quirk and they laugh cuz she is so darn cute, but I do worry about the behavior continuing as she gets older and I was really interested in the technique of "extinguishing behaviors" that Dori mentioned.

I am going to ask my OT about it, but I was wondering if you could maybe provide me with more detail or point me in the direction on how you have learned different strategies to deal with your childs issues. I just feel like, even though I have done all the right things and am getting my child help through my states Early Intervention Program, I am still in the dark about how to handle my child at home and help her be the best she can be. Any advice would be appreciated.
Apr 11, 2010
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starstarstarstarstar 		Hope this helps....
by: Dori

Our son, who is now 4 1/2, exhibited the same behaviors from birth. It used to take two of us to get him dressed because he was so stiff. At 9 months, I knew something wasn't right. We worked with our family physician, who referred us to OT, PT and speech therapy. He also underwent an ADOS (autism spectrum screening) which showed he is NOT on the spectrum. With a straight diagnosis of Sensory Processing, we have proceed with all of the above mentioned therapies. He toe walking lessened with soft socks that didn't bother the bottoms of his feet and CONSTANT reminders to "walk on his feet." At flapping and vibrating has ceased with "extinguishing." Every time he does this, we give him a some "heavy work" to do. Move a stack of books, chairs, etc. and then give him a sensory toy (that vibrates). I can't stress enough how early intervention and extinguishing of behaviors have helped our little guy. Good luck!!

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