Son's hand flapping, jumping, head shaking

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Son's hand flapping, jumping, head shaking

by Ally
(Florida)

My son is 3 and a half years old. He was diagnosed with Autism at 20 months, but the diagnosis has since been removed. He is very social, great at imaginative play, and joint attention that evolved a few months later, so not autistic.

They did say he has some autistic tendencies but does not meet the criteria for autism or PDD. He has flapped his hands when excited, or watching a moving object (fan, wheels, water running) since he was very young. It has now evolved into hand flapping, head shaking, eyes closed, facial grimacing, and he points his toes and clicks his heels together all at the same time. It appears to be involuntary, however you can stop him at anytime by calling his name or touching him. It's like his whole body is affected.

Oh, and when he is excited, and standing up, he bounces like Tigger all over the place. He has been seen by two OT and they gave treatment for some minor fine motor delays but I need help in addressing the obvious need for sensory input.

If he isn't autistic, can SPD cause him to act this way? In July we took him to a Pediatric Neurologist that said he just needs to learn to not do it, and he is a normal child with autistic tendencies... Help please!! Thanks so much

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Son's hand flapping, jumping, head shaking

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Jul 06, 2010
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SMD Yahoo Group
by: Shauna

I had the pleasure of meeting Dr. Freeman last fall, when he came to meet my 3 and half year old son (who had recently been diagnosed with SMD). My son is a very verbal and social child who flaps, finger flicks, hops...etc when excited. I started a yahoo group after reading hundreds of comments by other confused/concerned parents while reading Aspiring Dads blog post on "what to do about arm flapping" We are a growing group, and a lot of people have shared some amazing/insightful stories.

http://health.groups.yahoo.com/group/stereotypicmovements/

You may also want to read the original thread that sparked the group. The blog was written by the father of a girl with aspergers, but the comments are largely by parents whose children have stereoptypic movements that are not on the spectrum.
http://aspiringdad.wordpress.com/2008/01/30/understanding-hand-flapping-and-what-to-do-or-not-do-about-it/

Jul 05, 2010
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study
by: Anonymous

can you please email me the study too?
Thanks!

shillmant@bellsouth.net

Jul 02, 2010
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8 year old son...
by: Anonymous

Thank you for your support. I plan to keep my son in private school until the school board and principle say we have to go. But, I am going to join the parent teacher group, cultivate friends among the other parents, and try to get along with that parent. It does help that one of the fathers was a sensory child (auditory):)

Jul 02, 2010
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8 year old son
by: Anonymous

Please do not take your son out of private school because one parent is ignorant! We are advocates for our children. I think keeping a sensory sensitive child in a small school is much better. Maybe you should have coffee with the woman and explain your son's struggles. If all else fails maybe you should go to the principal and let them know you feel that your son is being singled out and you feel as though this parent is being discriminatory . Let the school know in no uncertain terms that children and adults alike need to learn compassion and tolerance for others and you will not be forced into leaving against your will.

Jul 01, 2010
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8 year old son
by: Anonymous

My 8 year old son has been in therapy for a year for sensory problems. He has an above average IQ and made A's in first grade (private school). He has begun shaking his wrists (first left then right) when he sits still to read, gets ready to write, or has to sit still. Therapist says he is sensory seeking and to try fidgets if it is too distracting. My son says "it feels good when my wrists feel weird". I got really concerned until I saw this set of comments. This has been great.

I dread second grade. There is a parent who does not understand his problem and wants him removed from the private school and put in public school. I wonder how they would like it if their child couldn't tolerate sound and went from a school of 16 kids (150 in the whole school)to a school of 30 kids (1000 in the whole school).

NOTE: He is extremely sensitive to sounds and touch. We have "shooters" ear protection for loud music, vacuums, and movies. The "W" brushing has greatly improved the sensitivity to touch. It doesn't help that he is a naturally grumpy child....add the sensory and he can be a teacher's worst nightmare.

Just needed validation and a place to vent. Thanks

Jun 22, 2010
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Study
by: Jennifer B.

Could you please email me the study too!

j_beckner@hotmail.com

Jun 20, 2010
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yeast overgrowth
by: Anonymous

My son had yeast overgrowth in his body. As soon as it went down to normal levels, his flapping was gone. I also learned that some children have food intolerances which often are the reasons for those symptoms.

Jun 15, 2010
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Flapping hands, wringing hands, mouth/tongue involvement
by: Lane

I have 4 children, 2 of whom display this odd behavior. My oldest displaying this behavior is 12yo and female, next is an 8yo male. Both are accelerated learners and earn straight 'A' scores in school. Both are extremely articulate and interact normally with their siblings and other children. Discipline issues and ADD-ADHD symptoms are non-existent. As a US Army SF medic, my opinion is that there is a very fine line between autism and 'genius' and that line can be further defined by early and frequent verbal and motor interaction with parents, siblings and others. I am not ashamed of this behavior and attribute it to my childrens' individual personalities.

Jun 15, 2010
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info
by: Anonymous

Ally if you can please send me a copy also...missyagosti@yahoo.com.............my brothers son does what most of these people kids do and his doctor said it was just some sort of hyper thing he would grow out of....he has done it since he was a baby laying around twirling his wrists....he now hops around alot, also pacing while hopping....his hands and arms also move around...almost looks like a UFC fighter as they are going in the ring to fight! Sometimes he moves his head from one shoulder to another and may have his mouth in a O position with his eyes wide open....he is smart and funny 4 year old but I just worry....he also has a little bit of a lisp, dunno if that has any connection?

Jun 07, 2010
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arm flapping
by: Margaret

If any of you have had a child "out grow" arm flapping at what age did it happen or get better please email me m.crabb at hotmail...thanks

Jun 05, 2010
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study
by: Anonymous

Ally,
Will you please send me the study... hairdoday at yahoo dot com
Thanks Shari

Jun 04, 2010
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Study
by: darmyst28

Could you please email me the study!!! Thank you!!

darlenecamara@hotmail.com

May 12, 2010
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Johns Hopkins stereotypies website published
by: Lindsay C.

I got an email today from Dr. Singer's office at Johns Hopkins hospital regarding their new informative website. I wanted to share the information with all of you! You can pretty much find all the information they currently know about this disorder. It's fabulous!!!!!

"The highly anticipated Johns Hopkins Primary Motor Stereotypy website has been finalized and published. Please refer to this site for information about primary motor stereotypies, as well as the current major motor stereotypies research initiative."

Find the website at:

http://www.hopkinsmedicine.org/neurology_neurosurgery/specialty_areas/pedsneuro/conditions/motor-stereotypies/

May 05, 2010
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Article Request
by: J.R.

Ally - Could you please send a copy of Dr. Freeman's article to jr@hyphen.org? Thanks.

Apr 24, 2010
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Additional points about our SMD paper
by: Roger D. Freeman, M.D.

Space limitations made it impossible to include all we would have liked. I am now working on a commissioned book in the series "Clinics in Developmental Medicine" on the main topic of Tics and Tourette Syndrome, but there will be a chapter on SMD because of its confusion with (and sometimes overlap with) Tourette's, as well as its confusion with ASD.

Aspects of SMD that were not considered in the SMD paper include: (1) variations in the intensity and frequency of the SMD pattern over time; (2) what else might be included under the broad category of SMD, other than flapping, pacing, running, bouncing, pressing, and hand mannerisms; (3) relationship to sensory factors and developmental coordination disorder; (4) what to explain to schools; (5) significance of comorbidity patterns (adhd, ld, etc.).

Apr 23, 2010
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Study
by: Anonymous

Could you please email me your study to jferzacca@hotmail.com

Apr 23, 2010
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"Stereotypic Movement Disorder: Easily Missed
by: Anonymous

My 6 yo son floppy his hands, especially when he is excited. He is a very smart, social, physically strong boy otherwise. I have been told by many that it is normal and he will outgrow it, but I am very much concerned and afraid. Could you please be so kind to email me your study, or to let me know where it can be obtained.
Thank you very much.

lenabodrova@yahoo.com

Apr 21, 2010
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Study
by: Ally

I'm sorry, but I am not able to post the study on here, due to the size and format. I can only send via email. If you are able to obtain an email address, please post and I will be happy to forward. Thanks!

Apr 20, 2010
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Study
by: Anonymous

I want to read the study. Can u put it on here? Don't have an email address. Thank you.

Apr 19, 2010
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Copy of study
by: Lindsay C.

I would love to receive a copy of this - my email address is "lconley5@cox.net".

Thanks for sharing!

Apr 19, 2010
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Stereotypic Movement Disorder
by: Ally

I have been given permission to share Dr. Roger Freeman's study of 42 SMD children ("Stereotypic Movement Disorder: Easily Missed"). It's to be published in the paper edition of Developmental Medicine & Child Neurology.
Unfortunately, I am not able to post an attachment in this blog.
If you are interested in reading this very informative study, please post your email address and I will send it to you, upon request.

The Doctor's that evaluated my son over the years each gave me different reasons for my son's movements. From Autism, to tics, tourettes, SPD, PDD... the list goes on and on. Each doctor contradicted the other. SMD is easily confused and parent's will often get an incorrect diagnosis.

Please understand and note... The information I will share is not meant to diagnose or label your child. I am not a doctor. I am simply a parent that has a child that "moves", in addition to doing my own "movements" all my life.

Hopefully, it give you a different perspective, so you can start enjoying your children, instead of worrying sick and obsessing about them, like I was with my son.

Apr 16, 2010
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I'm surprised to find this blog!
by: Roger D. Freeman, M.D.

After a parent contacted me, mentioning this blog, I was surprised and pleased to find it. Our study of 42 SMD children ("Stereotypic Movement Disorder: Easily Missed") is about to be published in the paper edition of Developmental Medicine & Child Neurology, and is presently OnLine Early for that journal.

I am on holidays and travelling right now, but will return here when I have more time. This is an important subject, vulnerable to many kinds of misunderstandings, and I'm glad to see this blog.

I do want to point out that the sensory aspects are still to be more fully explored (in our opinion) and may not be the most important aspect for all children...

Apr 12, 2010
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Daughters hand flapping,jumping etc etc
by: Anonymous

I have a 4year 8 month old girl,who has been described as having global delay,although is now doing very well and is almost hitting milestone targets.

She has always hand flapped since she was very small,she also jumps on the spot,holds her breath,paces backwards and forwards,holds things an inch away from her face and shakes,constantly shakes her body in a tremble,cant sit still in a chair,she was finally seen last year by an ot who has agreed that she has sensory problems.

She has no fear and is a danger to herself,she moans like a wounded animal when in a strange environment or just bothered by something,although she is quite a placid child at home she is beginning to change since starting school,she still only goes part time as they feel she cannot cope full time at the present,i have been told that she is not autistic but has autistic tendencies and that she will grow out of it but her odd behaviors are becoming more pronounced and visible to others,she also has trouble sleeping,she only needs a few hours sleep a night.can this behavior really just stop.

Apr 10, 2010
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To Dr Roger Freeman
by: Janet

I was interested in what you wrote. I have posted before in this site. My son is 5 years old and is a twin. Last night he was getting ready to shower and I was watching him look at a reflection of himself in the glass. He kept flapping his arms and make this facial reaction that did not look normal. He has done this for almost 2 years now. When I ask him about it he tells me he likes to do it. His doctor says he has a tic. I believe it is not a tic. I have a video of him doing his homework and jumping up and down. I'm trying to get more. He is a happy normal boy and very smart. So this is not affecting him with his schooling.. He does this when he gets excited. I'm getting tired of the comments from people that say he is about to take off (like an airplane). I am sensitive to this because I'm not sure what it is and I don't know what to do. I am interested to see what more information you come up with in your study. This site has really help. I really appreciate everyone's stories and concerns.

Apr 10, 2010
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Can it end
by: Anonymous

This is Greta my son is now in year one and still skips back and forth and flaps. He now plays football but it still hasn't stopped. How long can it go on for?

Mar 23, 2010
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Stereotypic Movement Disorder
by: Anonymous

Stereotypic Movement Disorder can be confused with tics and TS. SMD is an official DSM-IV diagnosis, but it's rarely made. There are only 3 case series of children published (Tan et al., 1998; Mahone et al., 2004; Harris et al., 2008). Repetitive movements usually start before age 2, and consist of intense patterns (like hand-flapping, pacing, running, bouncing, with or without vocalizations and facial grimacing) in longer runs than tics (can be up to 10-30 minutes). This can be stimulated by excitement or less often boredom. When older, they often say they like it, it's fun, they have to do it before they do something else, and that it stimulates their fantasies, yet they can usually be easily called out of it. It often looks very odd. They typically shape their patterns later so that the movements are done in private or within the family. The main problem is that if you're not familiar with it, you're likely to think it's a symptom of an autistic spectrum disorder or Tourette's. The pattern itself can look indistinguishable from autistic stereotypies, but is much more prolonged than tics. Comorbidity (other disorders) are common, including tics, just to confuse everyone... Usually no treatment is indicated. A videotape of the pattern is very helpful for diagnosis. We are following over 40 cases and are about to submit for publication. Through this blog we have already found 11 others!
Roger Freeman MD

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Mar 23, 2010
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Submitted by: Anonymous

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Stereotypic Movement Disorder can be confused with tics and TS. SMD is an official DSM-IV diagnosis, but it's rarely made. There are only 3 case series of children published (Tan et al., 1998; Mahone et al., 2004; Harris et al., 2008). Repetitive movements usually start before age 2, and consist of intense patterns (like hand-flapping, pacing, running, bouncing, with or without vocalizations and facial grimacing) in longer runs than tics (can be up to 10-30 minutes). This can be stimulated by excitement or less often boredom. When older, they often say they like it, it's fun, they have to do it before they do something else, and that it stimulates their fantasies, yet they can usually be easily called out of it. It often looks very odd. They typically shape their patterns later so that the movements are done in private or within the family. The main problem is that if you're not familiar with it, you're likely to think it's a symptom of an autistic spectrum disorder or Tourette's. The pattern itself can look indistinguishable from autistic stereotypies, but is much more prolonged than tics. Comorbidity (other disorders) are common, including tics, just to confuse everyone... Usually no treatment is indicated. A videotape of the pattern is very helpful for diagnosis. We are following over 40 cases and are about to submit for publication. Through this blog we have already found 11 others! Roger Freeman MD

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Mar 23, 2010
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Update
by: Ally

I posted my original post 1.5 yrs ago. I have since learned that my son has Stereotypical Movement Disorder (SMD). Google Roger Freeman MD and read his articles on the disorder. While it occurs in autistic, PDD and other disorders, it can occur in otherwise normal children.
My son will be 5 next month. He stills moves, however will stop upon distraction or if I call his name. It's involuntary, yet controlled, unlike tics or tourettes. In fact, SMD is commonly confused with tics, tourettes and even autism. I started my son in Karate which requires much discipline and focus. It's helped him control his movements a great deal but he still does them. I have always rocked back and forth and still do as an adult. I am sure he inherited this disorder from me. Understanding SMD will give you all a good perspective on it. I was so worried, but it's just what he does. He is a normal, smart little boy that likes to move...

Mar 20, 2010
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Complex Motor Stereotypies
by: Lindsay C.

We noticed my daughter hand flapping when excited around age 18 months. It didn't bother us until she was about 3 and had not stopped. I talked to the pediatrician, who suggested it was "just a habit she would grow out of." Unfortunately this was not true. Although she is a very happy, sociable girl, she is still hand flapping when happy or excited at age 6. She has also begun contorting her face while flapping when she is VERY engrossed in her flapping pursuits! She can stop at any time you make her aware of what she's doing, but she says she likes doing it and doesn't want to stop. At age 5, she had physical/occupational therapy evaluations, and it was concluded that although she had some minor gross/fine motor delays, there was no neurological disorder present. She goes to physical/occupational therapy twice a week, and the therapists don't address the flapping at all. Her doctor still suggests she will grow out of it.

Yesterday after a parent-teacher conference full of questions from the teacher, I did my millionth internet search and stumbled upon what I believe my daughter has: Complex Motor Stereotypes in otherwise normal children! I suggest you type this in your google search field, and read away!! So far I've ordered one medical article about this that focuses on children who have a hand flapping/arm movement stereotypy and it is such a relief that this is something that other kids have, and the flapping does not have to be associated with any neurological disorder!! From what I have found so far, the kids have to WANT to stop flapping, otherwise they will keep at it indefinitely. It says that although the flapping bothers the parents greatly, most of the children aren't bothered at all and enjoy the activity.

Good luck with your searching!

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Mar 20, 2010
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Submitted by: Lindsay C.

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We noticed my daughter hand flapping when excited around age 18 months. It didn't bother us until she was about 3 and had not stopped. I talked to the pediatrician, who suggested it was "just a habit she would grow out of." Unfortunately this was not true. Although she is a very happy, sociable girl, she is still hand flapping when happy or excited at age 6. She has also begun contorting her face while flapping when she is VERY engrossed in her flapping pursuits! She can stop at any time you make her aware of what she's doing, but she says she likes doing it and doesn't want to stop. At age 5, she had physical/occupational therapy evaluations, and it was concluded that although she had some minor gross/fine motor delays, there was no neurological disorder present. She goes to physical/occupational therapy twice a week, and the therapists don't address the flapping at all. Her doctor still suggests she will grow out of it. Yesterday after a parent-teacher conference full of questions from the teacher, I did my millionth internet search and stumbled upon what I believe my daughter has: Complex Motor Stereotypes in otherwise normal children! I suggest you type this in your google search field, and read away!! So far I've ordered one medical article about this that focuses on children who have a hand flapping/arm movement stereotypy and it is such a relief that this is something that other kids have, and the flapping does not have to be associated with any neurological disorder!! From what I have found so far, the kids have to WANT to stop flapping, otherwise they will keep at it indefinitely. It says that although the flapping bothers the parents greatly, most of the children aren't bothered at all and enjoy the activity. Good luck with your searching!

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Feb 08, 2010
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Aspergers?
by: Anonymous

I have been told that it is very hard to diagnose a child of 5 with Aspergers. They are not developed enough to fit the criteria. I would see a neuro/pediatrician if you haven't already. You know Einstein was believed to have it as well..

Feb 08, 2010
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Asperger's syndrome
by: Ashley

My 5 year old son does the same thing and the doctors said he has Aspergers syndrome, its kind of a form of autism, but, its a social autism.

Jan 06, 2010
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Out of Sync Child
by: Anonymous

Read The Out-of-Sync Child by Carol Stock Kranowitz, someone mentioned it earlier and it's the best advice I've seen. If you 'see' your child in the rest of this book then follow up with an Occupational Therapy Evaluation. Check out Sensory Integration Dysfunction on the web and see if you recognize other symptoms. My son did the same thing at that age, and is now almost 15 and doesn't do it anymore. Good Luck

Nov 04, 2009
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To Shari
by: Janet

Shari thank you so much for sharing your information. This site has really helped me. My son does the same thing but seems to only do it when he is excited. It's when he is focused on playing with his toys or doing his homework. The Doctor seems to think it's a tick. It does affect his social and learning skills. He does really well in Pre-k. He just turned 5. He is a twin with his sister. I look forward to reading more post of other peoples experiences with this. It helps to understand more of what is going on with your child. Thank you.

Nov 03, 2009
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Re: my intense child
by: shari

I thought I would update everyone about my comments from last year regarding my son. Ry is now 4 years 3 months old. He jumps, flaps, grunts, stares and holds his breath all while contorting his face and rolling his hands. After much worrying, Dr's visits etc. I decided to take him to the top neurologist at UCSF. After testing him for an hour, speaking to him and just observing him she had this to say...it is a way he expresses his excitement and happiness. She said as he gets older he will have the words to describe what it is he is feeling. She said to me "have you ever seen Michael Jordan shoot a basket? Watch his tongue..she said that is his version of flapping" It is how he releases anxiety.

She said Ryan will most likely grow out of this behavior. He is smart, on target at school and is very well adjusted. She found he did have sensory disorder and we will see an OT to do behavior modification. IF anyone wants an awesome Dr, her name is Elysa Marco, she is a neurologist who specializes in cognitive and behavioral child neurology. She cares for children with various deficits of social cognition at both the UCSF Medical Center Pediatric Neurology Clinic and Autism and Neurodevelopment Clinic. Marco also conducts functional imaging research to evaluate cognition, behavior and emotion in children with autism. I feel she is the best of the best and I am going to stop all this worrying and put it to rest.

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Nov 03, 2009
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Submitted by: shari

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Comment
I thought I would update everyone about my comments from last year regarding my son. Ry is now 4 years 3 months old. He jumps, flaps, grunts, stares and holds his breath all while contorting his face and rolling his hands. After much worrying, Dr's visits etc. I decided to take him to the top neurologist at UCSF. After testing him for an hour, speaking to him and just observing him she had this to say...it is a way he expresses his excitement and happiness. She said as he gets older he will have the words to describe what it is he is feeling. She said to me "have you ever seen Michael Jordan shoot a basket? Watch his tongue..she said that is his version of flapping" It is how he releases anxiety. She said Ryan will most likely grow out of this behavior. He is smart, on target at school and is very well adjusted. She found he did have sensory disorder and we will see an OT to do behavior modification. IF anyone wants an awesome Dr, her name is Elysa Marco, she is a neurologist who specializes in cognitive and behavioral child neurology. She cares for children with various deficits of social cognition at both the UCSF Medical Center Pediatric Neurology Clinic and Autism and Neurodevelopment Clinic. Marco also conducts functional imaging research to evaluate cognition, behavior and emotion in children with autism. I feel she is the best of the best and I am going to stop all this worrying and put it to rest.

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Nov 03, 2009
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My intense child
by:

My daughter is 5 years old and has exhibited some very odd characteristics for about three years now. She is very intelligent and social, although is developmentally behind her peers when it comes to academics. I had her tested last year for Kindergarten readiness by the school district (she is a summer birthday and we had the option of waiting a year) and they found her to be severely delayed in her fine motor and said there may be other issues as well. She began seeing an OT right away and throughout the summer. SInce she has started school she has not gone.

Beyond the fine motor delay I have always felt that was more of an issue. She does this thing (that I call her intensity) where she clenches both fists and either shakes her hands real fast or she contorts her wrists back and forth. At the same time she will hold her breath and contort her face in an odd manner. She does this mostly when she is excited. She seems to have weird fixations with her hands and fingers and will move her fingers by her face while doing the same intense sort of face. She hops a whole lot, especially when nervous and seems to have a hard time controlling it. Although if we call her name while she is shaking or doing the intense behavior she can stop herself. She will do it again though soon after.

I have talked to her pediatrician about it, as well as her preschool teacher last year and her current Kindergarten teacher and all have said they have never seen this behavior in a child before and that she will probably grow out of it.

I am not sure where to turn or what to do from here but I do not feel in my heart that she will grow out of this.

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Nov 03, 2009
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Submitted by:

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My daughter is 5 years old and has exhibited some very odd characteristics for about three years now. She is very intelligent and social, although is developmentally behind her peers when it comes to academics. I had her tested last year for Kindergarten readiness by the school district (she is a summer birthday and we had the option of waiting a year) and they found her to be severely delayed in her fine motor and said there may be other issues as well. She began seeing an OT right away and throughout the summer. SInce she has started school she has not gone. Beyond the fine motor delay I have always felt that was more of an issue. She does this thing (that I call her intensity) where she clenches both fists and either shakes her hands real fast or she contorts her wrists back and forth. At the same time she will hold her breath and contort her face in an odd manner. She does this mostly when she is excited. She seems to have weird fixations with her hands and fingers and will move her fingers by her face while doing the same intense sort of face. She hops a whole lot, especially when nervous and seems to have a hard time controlling it. Although if we call her name while she is shaking or doing the intense behavior she can stop herself. She will do it again though soon after. I have talked to her pediatrician about it, as well as her preschool teacher last year and her current Kindergarten teacher and all have said they have never seen this behavior in a child before and that she will probably grow out of it. I am not sure where to turn or what to do from here but I do not feel in my heart that she will grow out of this.

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Sep 23, 2009
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To Shaking Hands
by: Janet

First I want to thank everyone for their comments. I did address this with my sister and I agree about respect. That is what I teach my children. I teach them that God made us in our own special way and that we are all very special and different. As for as Shaking hands I'm not if what your son is doing is the same. I'm still trying to learn more about this. I'm just trying to understand it myself. It could be though. I just found this site yesterday and have found it to be very helpful and comforting.

Sep 22, 2009
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teasing
by: Anonymous

Janet,
I think we all know how hard it is to watch your child being teased..made even harder when it is by a family member. If I were you I think I would have a talk with your nephew and talk to him about compassion. I would also tell him that families are supposed to help build each other up and not tear them down.

My next conversation would be with his mother. It is our responsibility to teach our children to accept all people even those with disabilities. My husband and I always make it a point to let those people who stare at my son or make a comment know that we are well aware of what is going on and that "Ry is having a flappy day". His flapping and jumping have always been acknowledged by us and the kids in Ryan's preschool now know that it is Ryan being happy. Once it was addressed and spoke about there was no need to tease him.

I would volunteer a day at his kindergarten and when he exhibits his behaviors just make a comment and smile that your son sure must be happy because look at him jump ( or whatever) We also tell my son "quiet hands" and he will stop jumping and hold his hands together. Good luck to you..

Sep 22, 2009
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Shaking Hands
by: Anonymous

I have read several comments about shaking hands. My son runs (not fast) back and forth in a room and shakes his hands while running. If I stop him and asked what he is doing he typically will say he is playing an imaginary basketball game or boxing match etc. Is that the same type of thing you all are describing?

Sep 22, 2009
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My Son
by: Janet

Thank you so much for the information on the books. I plan to check into this and start reading them. My first concern was to make sure my son is ok. I'm also concerned when he starts kindergarten next year. I've seen my 9 year nephew make fun of him behind his back and it really Hurt me. Kids can be so cruel in school. I am really excited to have found this site today. Thank you.

Sep 22, 2009
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OT
by: AnonymousSnari

Janet ... OT is occupational therapist. ST is speech therapist. Your son sounds alot like mine. There is a book called The Out-of-Sync Child. It is excellent. Also Everything...the The Everything Parent's Guide To Sensory Integration Disorder by Terri Maurio has helped me alot. Focus on all the good things your child does. Don't make a big deal about the rest unless it is evident that he is not learning or growing as he should.

Sep 22, 2009
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My Son
by: Janet

My son who will be 5 in October is a twin. I noticed the hands flapping when he was a baby. He started about a year ago jumping and flapping his hands when he is so focused or gets excited. His pediatrician thought it would be a tic. I don't believe it's that. I have been searching to see what it could be. He is very smart, has great social skills, and does not forget a thing. He's a normal 5 year old. I just wanted to know what this condition is so I can help him with it. This site is very interesting in reading everyone's story because they are so simuluar to my son's. Please explain the abbreviation OT. Not sure what that is. Any suggestions or help is greatly appreciated. Thank you.

Apr 11, 2009
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Sensory diet for our daughter with SPD
by: Concerned dad

Our daughter is 5 and shakes her hands periodically and also jumps around like tigger, very similar to what is posted here. There's really nothing else she does that's unusual but we were concerned and therefore searched for an OT with specific experience in this area. This was not easy.

We eventually got a sensory diet for her. I am shocked what it cost us and feel we were taken advantage of given a sensory diet is pretty simple in that it provides extra stimulation to the child so they don't have to provide it to themselves. So to help out other parents who were as desperate as us and to save you a LOT of money, here?s what you can try. We used these as a guideline and integrated into what our daughter likes doing already. FYI, our OT said it could take up to 3 months to see improvement for the neural pathways to get rewired to accept their new sensory input.

? Tight hugs and squishes
? Deep touch pressure massage.
? Roll therapy ball over Child
? Silly animal walks for transitions (ex. Bear walk, Crab walk, Turtle crawl, Seal craw!). Get the arms moving.
? Sit on pillow/cushion to provide more input at table. Feet need to be firmly touching the ground.
? High sensory input foods, both very crunchy (example fresh fruit, cereal) and chewy (example dried fruit, fruit to 2� bars), gum.
? Wear weighted backpack.
? Use fidget toys for transition, resistive/stretch type, e.g. stress balls.
? Oral, calming input, provided by sucking on a sports water bottle.
? Sit in a bean bag cushion or on a couch cushion, during carpet time.
? Seated table activities should have both feet firmly planted on the ground, knees and elbows at 90 degrees.
? Prior to completing a colouring activity, play with silly putty. Example of games include: making different animal shapes, hiding and retrieving pennies, using different cookie cutters.
? Functional activities may include help carry plate to the table, hand out papers at school.
? Gross motor activities that are recommended include swimming (free swim with family or lessons), bike riding, walking/hiking, pulling a wagon

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Apr 11, 2009
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Submitted by: Concerned dad

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Our daughter is 5 and shakes her hands periodically and also jumps around like tigger, very similar to what is posted here. There's really nothing else she does that's unusual but we were concerned and therefore searched for an OT with specific experience in this area. This was not easy. We eventually got a sensory diet for her. I am shocked what it cost us and feel we were taken advantage of given a sensory diet is pretty simple in that it provides extra stimulation to the child so they don't have to provide it to themselves. So to help out other parents who were as desperate as us and to save you a LOT of money, here?s what you can try. We used these as a guideline and integrated into what our daughter likes doing already. FYI, our OT said it could take up to 3 months to see improvement for the neural pathways to get rewired to accept their new sensory input. ? Tight hugs and squishes ? Deep touch pressure massage. ? Roll therapy ball over Child ? Silly animal walks for transitions (ex. Bear walk, Crab walk, Turtle crawl, Seal craw!). Get the arms moving. ? Sit on pillow/cushion to provide more input at table. Feet need to be firmly touching the ground. ? High sensory input foods, both very crunchy (example fresh fruit, cereal) and chewy (example dried fruit, fruit to 2� bars), gum. ? Wear weighted backpack. ? Use fidget toys for transition, resistive/stretch type, e.g. stress balls. ? Oral, calming input, provided by sucking on a sports water bottle. ? Sit in a bean bag cushion or on a couch cushion, during carpet time. ? Seated table activities should have both feet firmly planted on the ground, knees and elbows at 90 degrees. ? Prior to completing a colouring activity, play with silly putty. Example of games include: making different animal shapes, hiding and retrieving pennies, using different cookie cutters. ? Functional activities may include help carry plate to the table, hand out papers at school. ? Gross motor activities that are recommended include swimming (free swim with family or lessons), bike riding, walking/hiking, pulling a wagon

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Feb 10, 2009
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Son has similar symptoms
by: Anonymous

I have to first thank everyone that is written in because I for once have felt that other people are experiencing what I am. My son is 3 1/2 and we just recently went to a ped neurologist who said he did not fall on the autism spectrum. He is speech and language delayed but not severely.

He always hit his milestones for speech up to about 2 when his language still progressed but not as rapidly as other children his age. He also hand flaps and makes hand movements near his face when he is excited. He is very social and loves to play with other children. He is also very intelligent and has known his alphabet, counting to 20 and shapes since 2. He does not have the best eye contact all the time but is very loving and wants to give hugs and kisses.

We think he may have SPD but are not sure. We just got him started in OT and ST and are hoping that this helps him. The flapping is pretty intense sometimes, does anyone think that OT can help with this??? People are starting to give us looks in public? He has struggled with the structure of preschool and is starting to get the hang of it 1/2 way through the school year. I am worried that he will really struggle through life and through school. Does anyone else stress about this??

Feb 01, 2009
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Sounds like me!
by: Lauren

The shaking definitely sounds a lot like what I experience. I am 23 years old now and consider myself to be normal besides the shaking. I can control it and I don't do it in public. It happens when I daydream and when I'm by myself. I was diagnosed with Sensory Integration when I was very young. Your son's actions sound a lot like mine so perhaps he has the same condition. I actually like it because daydreaming is so much more intense.

Jan 26, 2009
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UPDATE
by: UGATES

My daughter is getting OT and ST at school. She is now ten and it does not look cute when she does this in public. She is starting to get picked on by her friends.

I will try to redirect her with other things when she does this in public. At home, I will just let her do this because this is one of her ways of getting all that pent up energy out. My neurologist told me that she should not be punished in any way for this. She just can't help it.

She was diagnosed with autism last summer and a seizure disorder among many other things. Autism spectrum disorder is called that because it is a spectrum of different symptoms going on with your child.

We used to go to a place to get OT and ST after school, but it was a thirty minute drive and my daughter does not do good with change in routine. She does not like going out of town. We are talking major meltdown. I have found that I have to go out of town I will sing to her and that seems to calm her down some.

It was also very expensive and a lot of the things the OT and ST did I can do at home. I thought it was a good place and I learned a lot from them.

Jan 25, 2009
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not to worry
by: Anonymous

My son is now 3 1/2. He has been in OT(hand flapping) and Speech (for eye contact) for about 6 months last year. He too flaps, jumps and bounces when excited. I got so worried about it I video taped him and gave it to the Dr.

I have come to find that it is just something he does. He does not fit any criteria for Autism, but does have some sensory things now and then. The Dr basically told me to focus on what he can do and ignore the rest. I tell him "quiet hands" which means holding them together when it gets really bad.

He seems to flap more when stimulated by something. He flapped for four days after Christmas. I have come to find that when he is progressing in a new skill or is growing, he does it more, then it slacks off. If he has been sick, or has and ear infection it happens more too. He doesn't do it as much when he is at preschool or out and about.

I have a friend whose son is now 14 and has been a hand flapper, he knows not to do it in front of friends but will do it when excited at home. I think every kid had quirks but right now they are being scrutinized because of the media and the whole Autism circus.

As long as they are not exhibiting any behaviors that would put them on the spectrum I think it is best to ignore some of the flapping and let them be themselves.

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Jan 25, 2009
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Submitted by: Anonymous

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My son is now 3 1/2. He has been in OT(hand flapping) and Speech (for eye contact) for about 6 months last year. He too flaps, jumps and bounces when excited. I got so worried about it I video taped him and gave it to the Dr. I have come to find that it is just something he does. He does not fit any criteria for Autism, but does have some sensory things now and then. The Dr basically told me to focus on what he can do and ignore the rest. I tell him "quiet hands" which means holding them together when it gets really bad. He seems to flap more when stimulated by something. He flapped for four days after Christmas. I have come to find that when he is progressing in a new skill or is growing, he does it more, then it slacks off. If he has been sick, or has and ear infection it happens more too. He doesn't do it as much when he is at preschool or out and about. I have a friend whose son is now 14 and has been a hand flapper, he knows not to do it in front of friends but will do it when excited at home. I think every kid had quirks but right now they are being scrutinized because of the media and the whole Autism circus. As long as they are not exhibiting any behaviors that would put them on the spectrum I think it is best to ignore some of the flapping and let them be themselves.

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Jan 25, 2009
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Excited SPD 3 yr old
by: Anonymous

My son is 3 1/2 and has been diagnosed with SPD. He does some of these things when he gets excited. He jumps, lifts his arms, crosses his eyes---all at the same time.

It usually happens at birthday parties, play grounds, or any place with lots of sensory stimulation. We do get some strange looks. I stimulate him as much as possible to calm him---sliding, swinging, etc. depending on where we are.

I was told by my OT that the more situations like this that he is exposed to, the less excited he will be. She also told me he would out grow a lot of this behavior.

Jan 18, 2009
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my son too
by: Anonymous

I am really wondering what you guys found out. My son just turned 3 and does the exact same thing. He does not fit any ASD criteria, except for the jumping when excited and some inconsistent toe-walking.. I am sure it is a sensory thing.

Have your children seen OT for this. What have you done to help it.. I don't see it as hurting anybody, except as he gets older it is starting to look weirder. I wonder if at some point he will stop because of peer pressure.

My son also mostly does it at home too, but also at school, right when we get there and it is free play outside, he is extra stimulated and bouncing around. The teacher says that by the second outside play time, he doesn't do it much anywhere as he is more comfortable. Just wondering if any of you have follow up. thanks

Jan 09, 2009
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My Four year old son
by: Anonymous

My Son Has just turned four months...We have an issue but don't know why he does this it very concerning he flaps his hands when hes excited and has a little jump too... he is very smart and is very social and loving. Is this something i should be concerned about... Thanks

Dec 06, 2008
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My son like to run in a circle
by: Christina

Hello,

My son is 4,5 years old. We are bilingual family. I am from Europe but living in the USA. Our son does have a speech delay. But has improved in English a lot during the past year. Our speech therapists is suggesting to reduced his hours. Great progress on speech. But I am still concern with his other issues.

He likes to run in a circle every day. Does it usually when he is not busy with anything else. It seems that he does not run when he is stressed. Also sometimes he seems to do hand flapping. Not when he is sitting. But when he is jumping up or running in a circle. Academically he is little behind. He know his numbers up to 20 and ABC. He can recognize about half of the alphabet. He seems to have a delay in fine motor skills.

We have him in very good preschool with small class-size (10 children) and more attention. The teacher works with him and he is making progress. He likes to paint and draw. But his drawing is immature. He is very social and does not have issues with kids. He likes to ride his bike etc. Do I have to be concern about the running in circle? We are giving him a "gift of a year" and he will go to KG for 2 years. Once in our little preschool and than in our public school. Anybody with the same symptoms?

Nov 13, 2008
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torrets
by: Anonymous

My son is 8 and he does the same thing hes got ts , and he's very smart. What I do is try and limit how bad he shakes his head or does some really bad tick I try to avoid giving him msg.

And if you know this or not a lot of things will say they are msg free but its still there only in a different name. Like autolysed yeast calcium casinate avoid red 5 and yellow 7 you will see a difference in your child. Keep in mind msg is delayed up 24 hours in a persons body!

There are so many preservatives in food and it plays a big part of why they have these weird out burst .

Nov 05, 2008
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JOSHUA
by: JON AND KATE

WHILE LOOKING THROUGH THE WEB FOR INFORMATION ON OUR SONS CONDITION WE HAVE STUMBLED ON THIS SITE. OUR SON JOSHUA NOW 5 YEARS OLD HAS BEEN DIAGNOSED WITH A RARE CONDITION CALLED WORSTER DROUGHT SYNDROME AND HE ALSO EXHIBITS AUTISTIC TENDENCIES.

WHEN EXCITED JOSHUA BOUNCES, FLAPS HIS HANDS AND SLAPS HIMSELF BUT WILL STOP (EVENTUALLY) WHEN TOLD TO SIT DOWN. JOSHUA IS A VERY HAPPY CHILD WITH A WICKED SENSE OF HUMOR, HE IS ACADEMICALLY 18 MONTHS BEHIND AT SCHOOL. HE ALSO LOVES HIS HANDS AND FEET TO BE RUBBED OR TICKLED GENTLY THIS IS USUALLY TO COMFORT HIM WHEN HE IS CHILLING OUT OR PREPARING FOR BED.

AS A BABY WE USED TO CALL HIM THUMPER DUE TO THE JERKING MOVEMENT OF HIS LEGS. NOW HE GETS CALLED TIGGER WHEN HE HAS ONE OF HIS EPISODES. THE OT HAS GIVEN JOSHUA A PORTABLE SENSORY SEAT FOR SCHOOL THIS GIVES HIM STIMULATION...
MAYBE IT HAS A DIFFERENT NAME IN THE USA.

WE ARE BASED IN LIVERPOOL, ENGLAND. HOPE THIS MAY BE OF HELP WILL CONTACT U IF I LEARN OF ANYTHING THAT MAY BE HELPFUL GOOD LUCK.

Oct 23, 2008
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In the same boat...
by: Anonymous

My son is 8 years old and has been to neurologist since he is 10 months. I have just scheduled yet another appt. He has been pacing back and forth (as the other mom said sometimes with a toy on the kitchen table) while staring at that object with his arms rigig and extended.

He has never gotten a diagnoses as he does not possess enough traits for PDD or Autism. I have heard "possibly" OCD, and possibly even Tourettes. No one can give me an answer. He does great in school, plays sports, tons of friends, but can't shake the need to do this "stim".

I'm not looking to label him, just find out what to do to control this. He doesn't do this in school, only at home, and sometimes outside when he's bored. He has sensory issues with clothes, always has. I found this website and was wondering if it could be SPD. I never even heard of SPD. He is 8 now, and its not "cute" at this age, he is getting stares at his brothers ball game.

Someone please give me some input... help... desperate in NJ.

Oct 04, 2008
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Research other pediatritians in the area.
by: Trill14n

My son is 5 years old now. He was diagnosed with severe Autism when he was 3 years old. He toe walks and used to flap his hands rapidly when he gets excited while pacing back and forth. He has never been diagnosed with SPD but I know that he has a processing disorder based on a Sensory Integration Seminar that I attended a couple of years ago through Grason's Gift here in Cumming, GA. I would recommend that you search for support groups in your area because you can get information on reliable and trusted professionals to help you with your situation.

If you go to Yahoo.com there is a group called TLC-SID, this is another good support group when you have questions.

Oct 03, 2008
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Autism & S.P.D
by: Stephanie

S.P.D. yes I do think he my have S.P.D. My son Noah is six now. He sounds a lot like Noah, who at age four we got diagnosed with P.D.D. You can have P.D.D. & not have Autism, So make an O.T help you. Ask if he could have sensory integration dysfunction and look at the home page.

A lot of kids love fans jumping & more, but how much is he doing that & if he is disrupted does he get upset. I make notes so I can look back. For example. On Mon. had snack after school - would walk a bit then run at the same time flapping & moveing his head around.

On Thur, same thing this time for almost 2 hours, and sat down 10 min. the whole time. So Today is Fri. we will have more free time and I am going to see if he wants to look for neat leaves and just play outside.

So find an O.T that is truly helping. And as he gets older it may not be so hard to find the right DR. & just pray for God to lead you & him.

Thanks Stephanie Whitt

Oct 03, 2008
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my son
by: Anonymous

Ally,
I sent you a comment earlier about my three year old son. I keep getting emails that someone commented back but I can not find it. Please contact me at my email at hairdoday at yahoo dot com. My son does the same thing yours does and it is very concerning. Have you heard anything as to what it might be yet?

Oct 02, 2008
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Autism
by: Jessi

My son was never diagnosed with Autism, but there were concerns when he was around 2. Well like yours, he ended up being very social and imaginative. When he was 3 and 4 months, he was diagnosed as having a receptive/expressive language disorder, developmental delay, sensory integrative disorder, and idiosyncratic autistic traits. So she saw some the autistic type behaviors, but they weren't enough for a diagnosis of autism or PDD - NOS.

The other thing is that after only 4 months of speech and occupational therapy - at his re-evaluation by the development pediatrician, she removed the autistic traits and developmental delay diagnoses because he had made SO much progress in those 4 short months. Pretty awesome testimony to the effectiveness of therapy I think. So I don't know whether therapy will stop the hand-flapping and other autistic-like behaviors, but it will certainly help.

Oct 02, 2008
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My daughter does the same things.
by: Anonymous

My daughter is nine and does the same things you are talking about. She also runs back and forth in a pattern. She was just diagnosed a few months ago with autistic disorder (high functioning).

I do know this web-site here has a lot of good ideas to try for your son's sensory input.
My OT set my daughter on a sensory diet. This has helped a lot. Hers include things like jumping on the trampoline, swinging, wall push ups. She also showed me how to do the Wilbarger Deep Pressure and Proprioceptive Technique, PEDI Protocol, and Oral Tactile Technique. You should ask your OT about this because it has helped my daughter a lot.

Another thing I found that is helpful when we go anywhere like the store is if I give her something to carry like a heavy book or if I let her push the buggy (this work real good when the buggy is full). She is constantly moving and twirling and flapping her hands making mouth noises. We do get a lot of funny looks from other people. When we get home she has to have some sensory input or it will eventually lead into a meltdown especially after school.

As for the doctors I know what you are going through. It took me nine years to convince her doctor to send her to be evaluated for autism. I knew this was something she would not grow out of.

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Oct 02, 2008
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Submitted by: Anonymous

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My daughter is nine and does the same things you are talking about. She also runs back and forth in a pattern. She was just diagnosed a few months ago with autistic disorder (high functioning). I do know this web-site here has a lot of good ideas to try for your son's sensory input. My OT set my daughter on a sensory diet. This has helped a lot. Hers include things like jumping on the trampoline, swinging, wall push ups. She also showed me how to do the Wilbarger Deep Pressure and Proprioceptive Technique, PEDI Protocol, and Oral Tactile Technique. You should ask your OT about this because it has helped my daughter a lot. Another thing I found that is helpful when we go anywhere like the store is if I give her something to carry like a heavy book or if I let her push the buggy (this work real good when the buggy is full). She is constantly moving and twirling and flapping her hands making mouth noises. We do get a lot of funny looks from other people. When we get home she has to have some sensory input or it will eventually lead into a meltdown especially after school. As for the doctors I know what you are going through. It took me nine years to convince her doctor to send her to be evaluated for autism. I knew this was something she would not grow out of.

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Oct 02, 2008
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my son too!!
by: Anonymous

Please let me know what you find out. My son does exactly the same thing. He is three and we are taking him for another evaluation next week. He has had OT and speech but has been dismissed by both. He attends preschool and is doing great. The flapping doesn't happen as much at school as it does at home. It seems to happen when he is not engaged in some sort of activity. He loves cars but then watches the wheels. It is only for a few minutes. He breaks away. I have read all the info on Aspergers and Autism. Neither really apply to him. He is outgoing and social. I don't really know where to turn now. He also has to put objects on the table when he really wants to flap, it is as if he sees them better?? He also seems to get worse when his speech or some other developmental milestone progresses. Let me know if you have any info for me please. Shari

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Son's hand flapping, jumping, head shaking

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Son's hand flapping, jumping, head shaking