Sunday, May 22, 2011

Punched In The Gut: Sensory Processing Disorder Part1

I do not even know where to begin.  I really do not so the words that I am writing may not flow well or even make sense.  For that, I apologize.  So, I will try to start at the beginning.
This beautiful girl brings such joy.

A few months back, our pediatrician referred Ellie to the Developmental Clinic overseen by Dr. F who is a pediatric developmental neurologist.  This was no huge surprise since we were seen in both the Developmental and Down syndrome Clinic just after Ellie was born.  We were supposed to have regular follow-ups, however the clinics closed as a result of the doctor needing to leave.  
A few weeks before for the appointment (we have waited months for), I completed a 12 page-questionnaire.  Some of it asked about basic medical history and the rest was comprised of developmental and behavioral questions.  Many of the questions did not apply as Ellie is not in school.  One of the questions was “What to you hope to get from this visit?”.  I left it blank as I had no idea.  Actually, I wasn’t truly sure why we were going.  The pedi said to go just to make sure “we aren’t missing anything”.  

The Visit:
Not even 5 minutes into the visit, Ellie bit me.  Hard.  She hasn’t done that in over a month.  Perhaps it was the stress of being with a new doctor in a facility?  She also removed my glasses and started pushing all of the toys and furniture all around the room.  None of this seem out of the ordinary to me.  Come on, tons of kiddos tug on jewelry, steal glasses, and move furniture around. 
Meanwhile, Dr. F is asking me questions all while observing Ellie.  I like Dr. F.  I think she builds a great patient rapport, is knowledgeable, and listens.  However, that does not mean I agree with everything she says, but more on that later.
Then, the standardized developmental screening comes in.  It felt like a modified version of the Denver Developmental Screening tool that I used as a NP.  Ellie shocked me in showing us her toes when asked.  I thought she didn’t know ANY body parts!  Smart girl!  
Things went down hill pretty quickly.  

Uh oh.  I am not liking this conversation.
Me neither Bear.  Me neither, but never forget that I love you.

Preliminary Observations:
Dr. F goes “you know she has sensory issues, correct?”.  Of course, I know--recall the bath issues.  Read here.  She also cannot stand to have her hair brushed or her face washed.  She throws a huge fit when on her back, especially with diaper changes.  
She also has “stim” (stimulatory) behaviors such as the head banging while in our laps or hand movement near her face (Note: Stim behaviors are very common in children with developmental delays and are typically not of concern unless it prevents them from engaging in other activities and learning).  

Ellie also mouths everything.  EVERYTHING.  All objects must be mouthed before playing with them.  You also know about her blankets.  I had mentioned her mouthing a few times to our ECI therapist who reassured me that she is in a oral stage and exploring her environment.  It never sat well with me, but knowing Ellie is cognitively delayed, it made sense.

Dr. F told me it was more involved than that.  I said, “She doesn’t have autism though because she is socializing”.  Dr. F agreed because Ellie climbed into her lap, she made eye contact, and tried to engage in reciprocal play.  So, I wondered what exactly she was getting at.
As the testing went on, it became apparent just how much she is craving oral stimulation.  So much so that we almost could not complete the test.  See, these were all new objects and the mouthing was more excessive.  So excessive that when it came time to “brush the baby’s hair”, we couldn’t get the brush out of her mouth.  I finally had to put something else in her mouth to get the brush out.  THEN, and only then would she cooperate.  And so the test went on like that.  

This cannot be right.  Look at what I can do?!  I am a climber.
I like adventure and challenges!

Yes, Ellie Bear!  You are so determined and motivated to do amazing things.  We are so proud of you!
The Gut Punch:
Then I heard the words Sensory Processing Disorder.

WHAT?!?!  What is that?  I did not learn that in school!  What does that mean?
I wanted to argue, and did argue, that she has Down syndrome and thus some delays.  These behaviors are typical in younger children so isn’t this normal? 

(Ellie has more behaviors, but are not listed here.  I never considered these abnormal and thus never mentioned them to ECI.  I am STILL not sure these behaviors are “atypical”, but again, more on that later).

Nope. It is not normal when it interfers with playing, communication, and learning.  The constant on-the-go, flitting from one activity to the next, the heavy object moving (she moves ridiculously heavy toys, furniture) prevents her from accomplishing tasks.  
The oral sensory cravings are affecting her ability to communicate: 1. talking because something is in her mouth; 2. pointing/signing because her hands are too busy holding that thing in her mouth.  She is also have trouble playing with toys because she has to mouth them.  

Denial / Arguing:
I wanted to say but, but. . . “it isn’t as bad at home”.  She has energy and she does play with her toys.  Yes, she mouths, but she will play with them.  She puts coins in the piggy bank. She stacks the rings. She presses buttons to activate toys.  She will touch the animal’s fur on touch-&-feel books.  Yes, she is clumsy and falls a lot, but does that does not necessarily mean she has vestibular problems.  Aren't all toddlers klutzy? 

Panic Setting In:
Then Dr. F starts to list all of these therapies that are needed.  Visions of a lost childhood flashed through my eyes.  My daughter is social.  She loves other children.  We would miss playgroups, music class, the park because instead we would be in therapy.  I was told to increase her speech therapy.  Ellie need an occupational therapist with sensory integration experience.  She will also benefit from applied behavioral analysis [ABA] therapy.  Then I am told ABA is rarely covered by insurance and most places do not have experience with kids with Ds because these therapies are normally for kids with Autism.  

Depression / Anger:
I am devastated.  Truly devastated.  I know that SPD is not the end of the world.  I know that, but my sense of “normal” has been destroyed.  We finally got into our groove of balancing therapies, doctor’s appointments, and social life and now this.  More therapies?  A lot more therapies.  Another label to slap on my child? 

It hit me in the gut. Really, I am nauseated and anxious.   Frustrated and crying.  Angry.  So very angry.  Why?! I shout.  Why why why??? Doesn't my little girl have enough on her plate?!?!   

All of these things that I thought made Ellie spunky (the moving heavy things around, loving to swing and be thrown in the air, loving to brush her teeth with the motor toothbrush, the dancing and bouncing while in our laps) are actually symptoms of a disorder?!
When I headed to this appointment, I truly expected them to say “yes, she is delayed and make sure she is in ECI and getting therapies.  She is doing great.”
Our plan as devised by myself, Andrew, and Ellie’s ECI therapist:
Where do we go from here?  We are not sure yet for we are obtaining 2 more opinions to figure out what is truly needed and recommended.  Yep, three different opinions.  I need a tie-breaker.
  1. A Sensory Eval from an Occupational Therapist that works with our current ECI therapist.  This will be done in the home setting with Ellie’s current therapist and an OT
  2. A Behavioral Analyst evaluation at a center that does ABA therapy 
Don't worry Mama.  I am still the same snuggle Ellie Bellie Bear.
I know, dearest Ellie.  Mommy loves you all the same.  I love you so much and will do anything for you. Nothing will ever change that.

Up next: Part 2 So What Exactly Is Sensory Processing Disorder?



  1. we use aba all the time for kids at school and I never even imagined it as something she would need. Principles are good and really apply to behavior to any kiddo, but I don't think she needs aba therapy. We also have lots of kids using a sensory diet for sensory inegration. Nothing serious just changes to give them more sensory input and movement breaks. I can would consult an OT thought. She can also give you help on the fine motor stuff that is involved in signing and stuff.

  2. So sorry for the not-so-great news. :( I hate when our kiddos are given more mountains to climb. Just seems so darn unfair. And I hear ya on adding even one more therapy or doctor's appointment to your plate. Overwhelming to say the least.

    But with her great Mama, Ellie Bear is going to turn those mountains into molehills and jump right over them. :) Hang in there!

  3. Oh, how I feel your pain! When Emily was diagnosed with leukemia I couldn't believe it and then on the very same day we found out that she aspirates when she drinks so then we had to deal with that. Sometimes it seems just when you think you've hit your stride, there's another hill to climb...but know that you are an awesome mama and you'll tackle this one with little Ellie right by your side :-)

  4. I just saw that your blog was voted in the Top 25 Most Inspiring Families!!!! Yay Anna and Ellie!!!! What a beautiful girl and such a wonderful mama-- hang in there!

  5. I am SO sorry Anna!! I will pray for your strength and wisdom right now with all of this. I know that must be really difficult. They have added another therapy for Benji and want to add another one really soon. It can be overwhelming, so I can only imagine how you are feeling.

    Much love to you, Cara

  6. Hi there, visiting from Circle of Moms and a new follower!
    I'm so sorry to hear about this bad news. One of the hardest things when I found out about my son's brain injury is that I would *still* have to worry about ordinary things like peanut allergies, in addition to the awful unknowns associated with his disorder.
    I know in my heart that you will achieve a new normal again even with this news. And remember, play groups and music classes are therapy too! Don't let the docs convince you to exclude other facets of life!

  7. P.S. I stole your circle of moms button. Hope you don't mind!

  8. I always hate to hear when one of "our" kids has something extra to deal with. I felt that way with Claire's heart surgery...shouldn't Ds be enough? I know you didn't want to hear this news for Ellie, but I know you and Ellie will figure this out!

  9. I am with you, and will follow you along this new journey. Know that we are here for you!

    - Gretchen
    (from babycenter)


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