Thursday, May 26, 2011

Part 2: What is Sensory Processing Disorder?

Part 1: Punch In The Gut: Sensory Processing Disorder

Good old Mama Bear completely kept it together in Dr. F's office until, well, the elevator door "binged" to let me out into the world.  It started off as a lip quiver and a few tears escaping.  By the time I had Ellie buckled into her car seat, I had moved into full-blown sobbing.

I cried because:
1. Didn't Ellie already have enough on her plate?  (insert the usual "Why?" questions here).
2. Facing the unknown is scary and I didn't and still do not know much about SPD.  Will I ever have all the answers?

That brings me to:  So What Exactly Is Sensory Processing Disorder [SPD]?

What?  We are going to talk about this again?
You are witnessing a temper tantrum.   Yep, not always happy.

If you happen to be like me, Sensory Processing Disorder [SPD] is a new experience and a bit confusing.  Okay, it is really confusing.  As you start to read all of the checklists and behaviors that might be associated with said disorder, you start to think “hey, I have that.” or “OMG, my child has that for sure!”.  The fact of the matter is that everyone has some of the behaviors on the checklists and that is absolutely typical.  It is true.  What makes it a disorder is that it affects one’s ability to complete tasks, learn, and / or communicate.  The sensory issues are so severe that they impact daily activities of living [ADL].

Sensory Seeker: But look!  I am sitting so calm and pretty.

So yes, while the tag in your shirt is driving you nuts and as you are typing you are jiggling your legs, this does not mean you have SPD.  Unless of course you are failing out of of school/unable to work because you cannot think of anything else but the tag in your shirt.  It feels like fiberglass etching into your skin. . .

Anyway, I digress. Let’s go back to the beginning. 
The beginning sounds good to me!

While SPD may seem like a relatively new phenomenon, it was studied by Dr. Anna Jean Ayred, PhD, OTR since the 1960s where she coined the term “sensory integration dysfunction”.

Ever hear of the book “The Out-Of-Sync Child” by Carol Stock Kranowitz from 1995?  This author touches on SPD and that was in the mid-1990’s.

Since then, starting around 2007, Sensory Processing Disorder and Sensory Integration Disorder have become more widely studied.   HOWEVER, there is no actual ICD-9 medical code for SPD. . . YET.  An ICD-9 is a diagnostic code used by medical providers, OTs, etc.  For example, Down Syndrome has a ICD-9 code of 758.0  Without an ICD-9 code, billing to insurance and obtaining therapies is rather difficult.  

How is it that a disorder that has been around for over 50 years does not even have its own diagnostic code?  How is it that there is no definitive diagnostic tool for SPD?

What?  Really?  Insurance issues?  Never ever heard of that.
The Senses and the Process:
Many of us know the most common senses of taste, smell, touch, auditory (hearing), and visual, but there are also other senses such as body position in space, movement/vestibular.  These senses are all translated by receptors in the body (ie skin, muscles, tongue, tendons,) that send signals to the brain.  Yep, the nervous system.   The thing with SPD, is that these sensory pathways are not functioning properly.  The sensory impulses are not relayed to the brain as they should be.  

Hypo Vs. Hyper Sensitivity:
Now, not all of the senses are affected.  For some people, tactile is the main sense affected for others it is visual and auditory.  Some people are hypo-sensitive (ie indifferent to pain, temperature, touch, sounds) and some may be hyper-sensitive (pulling back from touch or covering ears due to loud noises or covering the eyes from bright lights).  In fact, those with SPD can have BOTH hypo- and hyper-sensitivity.  

Yes, I can get bows and clips in Ellie's hair.  It is difficult and she is always trying to run away.  Washing and combing her hair is another matter entirely.  After 17 months of trying out different things (some recommended by our ECI therapist and some just me "experimenting") we can now actually get Ellie to stay in a bathtub.  Miracle!

For instance, Ellie is hyper-sensitive with her face and head.  She throws a huge conniption fit if her face is being washed or if her head gets wet.  Bath-time was hell on Earth.  We probably had the filthiest baby ever because bath time = Bear Torture Time.  

The rest of her body and her mouth are predominantly hypo-sensitive as in she is always in sensory craving state with her mouth.  Something such as a toy, clothing, lovie, teether, paper, toothbrush, you-name-it is always in her mouth.  

She also craves motion--the rocking, the swinging, the bouncing as well as the movement of HEAVY objects.  That all involves the touch /  tactile sense.  She also has some vestibular issues--she is clumsy.  She falls a lot and at times, it looks as though she is trying to walk straight, but ends up going to the left (or right).  Her muscles, joints, tendons, and ligaments are not working in sink with her brain. 

What do you mean "oral sensory craving"?  

Here is a YouTube video of Ellie walking.  Sorry it is sideways. . .not sure how to fix that.  Anyway, she is more clumsy than usual here, but you get the idea.  Sorry about the lack of clothing too.

So how is it a disorder? 
Some of these things every kid does so how is Ellie different?  
She is developmentally delayed so doesn’t some of this make sense?
Don’t most toddlers have bouts of clumsiness and falling?
Don’t many kids like to mouth things?
What child does not love to swing or be bounced?
The top two pictures show "functional" play as she is "feeding" the baby.
The bottom two show how Ellie is literally feeding Andrew.
This is in preparation for when Andrew and I are both old and need assistance.  Ellie can officially help us :-)
The point is, she just picked this up a few weeks ago! Super Ellie!!! Prior to that, the cups were thrown as was baby.

I know.  I know.  This is why I was so shocked and why I am getting 2nd and 3rd opinions.  Come on!  Most of this sounds typical to me.  Well, not the crazy bath stuff (it was getting dangerous with her trying to escape.   Oh and the screaming!).  Not to mention her oral fixation.  Still, much of this seems typical to me.  

The fact of the matter is this: it IS typical UNLESS it impairs social interaction, learning, communication, and/or play (work).  At least, that is what I am able to understand. (Remember, this is not my area so I am compiling all of this data from research.  I will include resources in Part 3).

Do you see this?!  See it?!  This is a HUGE milestone for the  Ellie Bear!
These are IKEA nesting cups and typically she just walks around the house throwing each cup as she goes.
Last week, I got her to build a tower on her own (we had been doing hand-over-hand for a while).
Yesterday, nesting the cups!  Super Bear!!!!!
It is because of these reasons that Dr. F of developmental and behavioral pediatrics has thus diagnosed Ellie with Sensory Processing Disorder.
...She has made nice gains in her gross motor development, but continues with deficits in the area of language, fine motor, and has significant sensory processing deficits, which are interfering with her ability to learn.

Ellie is still the same Ellie.  The same adorable, feisty little Bear-Bear that is trying to conquer the world with her amazing cuteness and sassy personality.  No label will change that.  She loves and is loved by all who meet her.  
Coming soon:
Part 3: More About Ellie and Treatment for SPD + Resources
The Fun Never Stops: Dealing with Insurance



  1. A couple of things ;D

    First - Although Sarah Kate was never diagnosed with SPD, back in early 2006, just after her rhizotomy (which permanently cut nerves in her spinal cord), she had some unusual and transient neuro-issues. She would FREAK when they put her in anything at PT that would swing, even a tiny bit. Today, she fearlessly rides the Rockin' Roller Coaster at Walt Disney World - multiple times in succession if the lines are short enough to allow it. My point is that therapy helped her work through that to the point where it's not an issue at all anymore. I have no idea if the same could happen with Ellie, but I'm crossing my fingers for you.

    Second - Does it ever bother you that every anomaly is getting a diagnosis these days? Not to minimize any serious issues that Ellie or other children may have, but...I can't help but wonder if the long-term effects of labeling every "imperfection" may be...not good.

  2. I'm still playing catch up, but find this all fascinating. Not that Ellie might have it, but just "it" in general. Claire ALWAYS has something in her mouth, loves to be swung high or upside down. Just typical behavior I'd say....


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