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I need a therapist

 

 

Not for me, Sillies. 

 

 

 

(although…maybe…)

 

 

 

(stop agreeing with that maybe!!!!!!!!!) 

 

 

 

Since I know several therapists of different varieties read Trevy’s blog, I thought I’d put out a call for HELP! 

 

 

 

It’s nothing major.  I just need you to help me try and understand something.  Because I crave understanding him.  Things I don’t understand keep me up at night wondering.  Google-ing.  I’ve already asked 2 outta 3 of his out-patient (oh…did I mention that I finally set up those OT & PT therapies?  Maybe I am Super Mom?! ;) therapists.  Both nodded like it must mean something.  And shrugged that they couldn’t imagine what. 

 

 

 

But I KNOW there must be a what and a why somewhere out there!

 

 

 

I don’t remember him doing this prior to surgery.  As much anyway.  But then I don’t really remember much before surgery.   However, post surgery Trevy will always always have something repetitive he does with his hands.  To me…and let me just go ahead and say he is not on the autism spectrum at this time…but to me the easiest way to describe it is that it resembles a stim?   Only recently have I noticed that when one goes away, it’s because another has replaced it. 

 

 

 

For instance…

 

 

 

For the longest time he would do these claw hand moves.  The whole live long day.  Moving his fingers (particularly the right, which is odd being his non-dominant) like he was doing a shadow puppet show.  Together Apart Together Apart.  Rapidly.  Little lobster claws.  I know I have videos of it somewhere…I just don’t really have the time to find one.  But it was constant and persistent. 

 

 

Then it went away (for awhile) and was replaced by popping the joints in his fingers (again Righty).  You know how double jointed people do?  Makes my skin crawl!  And he’d do it all day long.  All day long with the popping his finger joints. 

 

 

 

Overnight that went away and was replaced by head smacking.  Whack.  Whack.  Whack.  All day long.  This is where I admit I was heart-broken.  The other two were kinda easy to miss.  The public at large wouldn’t notice.  The head whacking…not so much.  And it just looks…well…weird?  I hate using that word.  But I believe in keeping it real.  And it was weird.  The other two no one seemed to mind.  The head whacking…every single therapist who works with him gave me advice on how to eliminate it.

 

 

 

And the other day I notice he’s not whacking his head any more.  Not one bit.  And that’s good. 

 

 

 

But…

 

 

 

Now he’s snapping.  Just his right fingers.  Snapping.  All day long!  Snap Snap Snap Snap Snap.  If he weren’t so cute it’d be driving me wonky! 

 

 

 

And even still it is.  Because I want to understand why he’s doing these repetitive hand things?  And why the heck is it his right hand?  What is going on?  Does it help him process information?  Is it comforting?  Am I over-analyzing?  Does each snap or whack or claw mean information is shifting from left to right?  Have you worked with other children who’ve done similar things?  Other moms and dads…are you seeing this too??? 

 

 

 

HELP! 

 

 

 

…danielle

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Comments

Andi S said…
(I'm not a therapist. ;)

Some of the meds can cause OCD tendencies. I'm not sure if it causes the tendencies or it brings out underlying condition.

When Emma is mad, she hits herself with her left hand in the head (the right hand scratches the right ear and pulls her hair). On Lamictal (I think that's the one), not only did it cause her to literally scream and cry for every waking moment of the day. And if when she's mad, she hits, it got worse on the Lamictal. If you restrained her arms, she would bang her head...in the chair or on the floor. Since we took her off of it, it's not nearly as bad. She still hits herself daily, but we get 1-3 smacks at a time. The head banging is very rare, but still happens.

Topamax might do the same thing.

Check with the neuro about obscure side-effects. If it hadn't been for the hitting/banging, ours probably wouldn't have mentioned it
August 25, 2011 at 6:46 AM
Wendi Taylor said…
Could it be a sensory thing? Maybe he doesn't get enough 'input' from the non-dominant hand and the stimming is an attempt to 'feel' something there? Does that make sense?
August 25, 2011 at 7:34 AM
Dora's Daddy said…
Hi. I'm not THAT kind of therapist, but I did think of one question. Did (do) any of these behaviors increase when he is under stress or experiencing strong emotions? If so, that might fit with the self-stimulation theory that, when sensory overloaded, a child with autistic characteristics will use them to self-sooth.
Glad you were able to help him cease the head striking.
August 25, 2011 at 7:41 AM
Sophie's Story by Elaine said…
I'm racking my brain trying to think of anything repetitive that Sophie does. Besides sucking her thumb and twirling her hair (which she has done all her life...well...it use to be my hair), I can't think of anything.
August 25, 2011 at 7:45 AM
Heather said…
Hey Danielle- interesting… It looks like Trevy is doing some stims in his 8 month old infantile spasms videos too. He points his toes and kind of twirls his hands and feet between the spasms. I haven't watched it in a while, but I remember it sorta freaked me out because my son did the exact same thing at that age and my son was having myoclonic jerks too. Anyhow, my son still does stims too- and they also change frequently. One week it's his tongue, the next week it is his hand clenching over and over again, same kinda thing you are describing. So, I guess I'm saying it could be something he is just born with? Who knows? I'm no doctor and I still haven't figured out my own son, nor has his doctors. ;-)
August 25, 2011 at 7:47 AM
Anita said…
This is one of the 'things, that have been disturbing me for a while. Kanak has moved on to making wierd movements with her body and making faces and moving her neck wierdly.It irks me especially when she does that while I am talking to her. And she is 8 years old. I have no idea how to describe it and who to ask for help. She does these things with her fingers too and all this has just gotten worse in the last one year. She too just moves from one 'stim' to another worse one.

I hope with this post,even I can get answers or suggestions atleast of how to deal with it.


Anita
August 25, 2011 at 9:32 AM
Shannon said…
I am sooo anxious to hear some great answers! Marissa has become a constant head banger, hair puller, pincher, biter and self-gagger. Her behaviors are escalating so fast and no one has any answers. My heart is breaking!
August 25, 2011 at 2:06 PM
Danielle said…
Well my goodness...people actually DO read this ol' blog! ;)

And SO much input too! A lot of interesting thoughts.

Andi...Duh. Why didn't I think it could be a side effect!?

Heather...how old is your little man now? And I NEVER noticed the hands/feet until you pointed it out!

Elaine....Trevy & Sophie are such little twinkies that I'm totally surprised she doesn't do something similar!

He doesn't seem to do it more when he's agitated. I haven't noticed a pattern really. Other than it's all day long. It will increase when he seems to be "thinking" ...be it playing the iPad or trying to communicate. He'll do it in any sort of sensory situation. Bring out the rice table...and wah lah...crazy hands. :)

Wendi...btw...that really DOES make sense. A lot of sense, actually!

Hopefully more peeps chime in!

I'm zonked now, though. Jonathan told me the kids bedroom feels "skeezy" so I've been purging it. I just threatened them if they mess it up again (which btw...they ARE pigs!) I'm going to dump it all in the middle of the floor and they'll have to clean it up exactly they way I've just done!


...danielle
August 25, 2011 at 4:55 PM
The Lundgrens said…
They're just so quirky aren't they?! I know, I know...I don't always like to say it either...but let's face it, it's weird to be almost three and licking the grocery store cart, the table at the restaurant, the floor, the door...etc, etc. That was Luke's "thing" for a while. The head-banging is another one of his things, although it's not quite as bad as it was. And I have to admit on that one, he does it more when he hasn't had enough input or when he's trying to get attention.
Luke's therapists have mostly said what Wendy said..."He's needs more input" Which I sorta get...except I swear we could bounce on that dang therapy ball, and swing, and do joint compressions, and brushing and lotion massages and ...ALL THE DAY LONG and he would still need more input.
I have no answers...ha!! Just getting my own vent session here in your comments section. :) If his right hand does need more input, would be respond well to a stress ball...those squeezy, squishy ones? Or something kind of like that? I don't know...since there's really no getting rid of the behaviors (and I don't think there is), I've come to realize all I can really do is come up with some other socially acceptable things to replace Luke's quirky behaviors. So I carry those vibrating teethers or tart lemon water around to give him some oral stim when he's about to lick the cart handle at the grocery store (gross). We're doing more head massages and and a strap on his glasses to provide input into his head to help with head banging. The lingering question is WHY? It bugs me too. But my husband sticks his tongue out ever so slightly any time he's concentrating on something and I do a weird repetitive foot shaking thing sometimes so maybe we all have our "thing". :D
August 26, 2011 at 9:34 PM
Meredith said…
Hello - I wanted to first say I admire you and your strength. My daughter has IS and is on her way to recovery, but it has been quite difficult. I have many rough days even though Lola has a much better prognosis than many kids with IS. I just can't help but feel some sort of guilt for what she is going through even though there is nothing I could have done to prevent it.

Anyway, Lola often hits her head repeatedly when she is tired. I asked her neuro and he said she was self-stimulating because she can't see very well (CVI).

I hope you don't mind, but I have you listed on my blog. I think your blog is fantastic! If you have any objections, please just let me know.

Take care,
Meredith
www.sayholalola.com
August 27, 2011 at 1:57 PM
Danielle said…
Meredith...of course you can link us up! And always...I'm here. It's only been four years since Trevy was diagnosed...and I still remember well those early months. Trevy was seizure free for several months...and his prognosis was good. I remember battling those feelings of guilt and sadness...and then even more guilt because Trevy was one of the "luckier" IS babies. And in many ways...still is...

Anyway...

I'll add Lola's blog here too. :)

...danielle
August 27, 2011 at 4:02 PM
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