SMD?

[jelanismom]

I'm wondering if anyone else has any experience or knowledge in this. I found this label on my own "Stereotypic Movement Disorder" and I believe it's what Jelani's been doing every day. He taps his mouth repeatedly since January. I asked his OT and no help there. So I went on my own to read up on whatever I could find, so SMD seems right on. Esp. with his sensory integration issues. He combines this constant mouth tapping with his finger (sideways hand ) with constant teeth grinding...and when he's especially motivated he'll make short loud screams at home or when we're in a store or wherever. He just won't stop and I get frustrated. He thinks it's cute and smiles ear to ear and keeps doing it so I have to hug him and he stops, as I whisper "no apple pie, no icecream" but then he's back at it.
Our fun times are being cut short because this is interferring big time. I almost forgot...he's also throwing things everyday and in school he's pulling the same tricks,..he throws the other kids drinks, pulls therapists glasses off to throw, but otherwise they claim he's doing well in class and sitting still longer. go figure.
I want to know how to help him, he can't learn, it's not helping him in any way, and it makes it even harder to make friends while he's tapping his mouth teeth grinding, screaming and throwing. Sometimes it's all at once, or sometimes he builds up to it, sometimes he takes a brief hiatus, then he's back at it. I somehow forget how my son was BEFORE this all came about.
SO...today I made an appt. with his Ped just to get a referral for a behavioral assessment.

here's a link about SMD...
www.gulfbend.org/poc/view_doc.php?type=doc&id=14512&cn=37 but it's not mentioning Ds anywhere...and it overuses the 'r" word which I didn't like.

Anyone have a child diagnosed with SMD or similar?
Any advice if this sounds familiar?

Thanks for reading this far,

Dawn

[Emilysmom]

Dawn,
I didn't read the entire article, but I read enough of it to remember something from the KC NDSC conference. I didn't attend this particular session, but several other Uno Masers did, and reported to me that Dr. Capone had talked about something that Emily does..............and he referred to it as "stereotypy", or a stereotypical movement. When she gets really excited, nervous, or is really looking forward to something, she will do this movement with her hands that almost looks like she is "wringing her hands" really fast. She has done it since she was about 3 yrs old, and I wondered all those years what it was!

So, at the conference, I went to Emily's pediatrician and talked to her about it. (Dr. Capone had recommended several medications to help deal with it). She said it was a type of stereotypical movement (Like the article mentioned, there are LOTS of types of movements that are included in this), and there are various ways to treat it. For us, the biggest factor was that this movement does not interfere with her life. She doesn't do it frequently......probably not even daily at this point. So, now that she is older, we simply talk to her about it and encourage her to do this only when she's at home. I can now say to her "Hands", and she'll look down at her hands and see that she is doing it and will stop. (Or, she will grin and do it MORE and laugh....but then stop)


I said all of that to say this: There are so many things like this; and the deciding factor about whether to get treatment for them is whether or not it interferes with the child's life. And, from your post, it sure sounds like this behavior does interfere with Jelani's day, making friends, etc. I think you're on the right track to helping him!!!

[dpurvis]

Oh, Man...I have never heard of this before...I wonder if this is what Ashleigh's bobble wobble head is all about?!?!?!?

[momofrussell]

"stereotypy" movement is the same as stimming I think "stereotypy" is more of a medical term but they mean the same thing.

A.

[Ericsmomma]

Dawn,
Eric does the "mouth tapping" too, especially if he's stressed, excited, or tired. He also chews on everything...toys, clothes, shoes, etc. He also hand flaps (same situations), grimaces, and
clenches his jaw. He will also sometimes laugh uncontrollably, for no good reason. He does alot of throwing...his summer enrichment bus driver is so frustrated with him taking off his shoes/socks every day on the bus and tossing them. The other day he threw his socks out the window! I've gotten mixed evaluations on his behavior. His developmental pediatrician thinks he could be on the autistic spectrum disorder spectrum. His neurologist doesn't...he thinks alot of his behaviors are Down Syndrome related, except they are alittle more severe.
He attributes it to a lower level of functioning. I'm not so sure of that diagnosis. I too am looking at seeing a behavioral psychologist to see where we can go with this. Now, mostly I just try and redirect his behaviors, and try not to get him in situations where he is stressed or anxious. I have physically tried to stop some of the stimming, and have given him more appropriate objects to "chew" on till he calms down. I think he has alot of sensory issues, and we are working on that. A good book to read is "Sensational kids" by Lucy Jane Miller, Ph.D, OTR. Its excellant, and offers some good advice.

[jelanismom]

Jackie, thanks and I do remember you mentioning to me the SMD a while ago, that's why I looked it up online! lol
A~ can you believe I actually thought I was "on to something"
of course, I should have known it's another fancy term for stimming...
And Dolly, the book is a great resource I'll have to get...thanks!
But Debbie I really hope you can elaborate on Ashleigh's "bobble wobble" head! (I'm thinking dashboard ornament...Sorry!)

[momofrussell]

Well Dawn, if you are "on something" be sure to share LOL

A.

[CC]

"another fancy term for stimming..."

YUP I agree with that but what really matters is why, KWIM

There could be many different reasons and I think its good that you are pushing to have a behavioral assessment.

Christopher has the dual DX of DS and ASD along with OCD issues. For my guy the OCD truly gets in his way of life and for that reason we have him on meds. Not saying your guy will have to be on meds, but once you find out the real reasons for these behaviors you will have more info and able to decide better what will help.

BEST of Luck to you

CC ~

[Emilysmom]

This is just an example of what I was referring to.............imagine Emily's hands like they are in this picture, but moving with her fingers slightly intertwined..........FAST. That's her most noticeable stereotypical movement. LOL A woman at our church once told me that she loved to watch Emily doing sign language. I was like "HUH"?? (Cause Emily has long since forgotten any sign language we used with her years ago). And she descibed Emily's hand movements and said "And she is FAST too"!!!

[dpurvis]

Dawn,
LOL - think dashboard ornament - but 24/7!! Ashleigh talks to her "guys" ( imaginary friends) and when she does she bobble wobbles her head all over the place. But a lot of times now, she bobble wobbles when she isn't talking to the guys!! Like Susan - I try to just simply remind her by saying "head" or "head control please" - but it seems like 100's of times a day I remind her - it's just constant!! I'm really wondering if meds might help her control her head!!
I also try to remind her she is fixing to be 14 in just a few weeks and she needs to act like a big girl!! Believe me, I have tried EVERYTHING w/o success!!
Susan, that's a GREAT picture of the kids!! Corey has told me several times that he wish Ashleigh just did that little thing with her hands like Emily did instead of her bobble wobble head thing!!!

Debbie

[jelanismom]

I've considered meds, haven't really talked to the doc yet, infact I was thinking behavioral intervention FIRST...and like Ashleigh, ist's a constant thing, and bribery sometimes works (chocolate cake, videos)... and Jackie, the wringing hands I'll trade over the mouth tapping teeth grinding, "eee'eeee'!!!(all in unison)..he's fast at it too!But the bobble wobble head...well, Jelani does a Stevie Wonder head shake so fast I worry his neck will get hurt...he's done this since he was like 2. It's to any music and first thing in the morning....then anytime in the day.
Jackie that photo really IS quite awesome! Thanks for you guys' input...CC, all the best to Christopher too. Boy, I had no idea I wasn't alone.

Have a good Fourth everyone.
(keeping Jelani AWAY from the grill will be like THE main event!)

[momofrussell]

Dawn, maybe you already have talked about this but have you ever taken Jelani to a Devel Ped?

A.

[jelanismom]

A~ I'm actually still looking...right now his Ped is on maternity leave. Thanks for asking. At first I wondered what you asked..."Devil Ped" I got worried...like you thought he was possessed!!!! ;D

[steffaroni]

dawn do you go to ucla for peds? If not you can sign Jelani up for Molina and go there. I am sure you will get lotsa info there for all his needs. Kyle is now signed up for Molina and can start go to ucla peds as well so its not hard forhim so you should have a breeze of a time if you'd like to switch. Livs ped is the head of the chc there and the BESTEST man ever. I love him dearly. This gruff guy all the residents were scared of at first is the sweetest nicest most amazing man with the greatest intuition ever. He could look at Liv and tell me to go take these papers he filled out and get a chest xray stat. sure enuf everytime hes right and she has pneumonia. And there have been times she has been sick as a dog and the resident wanted to order a chest xray and he said she doesn't need one I know BUT I will humor you and sure enough no pneumonia. He's never been wrong for the last almost 10 years and thats some record.

[CC]

"CC, all the best to Christopher too. Boy, I had no idea I wasn't alone"

THANKS Dawn, Christopher is doing (knock wood) just fine ;D

Its all in finding that missing puzzle piece, KWIM and once you do too for Jelani things will start to turn around.

Hey girl one is never "alone" here at UNO

CC ~