SPD or Not SPD? : The 2nd Opinion

If you are new here, please see Part 1, Part 2, and here.

In the end, it is all just a LABEL. 

Thursday was Ellie’s Sensory Evaluation by ECI and I believe that it went well.    I am feeling more at ease with the situation and a plan has been formulated.  I am still not entirely sure I am comfortable with the plan, but Andrew and I are willing to give it a go for a few months.   

Our developmental therapist Jan was present for the evaluation, which I believe was a really to our benefit because she has known Ellie since she was 3 weeks-old and also because I TRUST her.  I called her almost immediately after receiving Ellie’s SPD diagnosis at our Developmental Pediatrics appointment.  J, an Occupational Therapist [OT] was also present for the eval.  

That's it with the photos!  What are you?  The mama-razzi???  I am escaping from this bench immediately.

I am going to frolic!  Then I will search for. . .

...my Sophie Princess Puppy!

I had to fill out a questionnaire and they also observed Ellie.  There are pros and cons to this.  

Pros: 

Ellie is in her own environment and is thus comfortable.

Jan has known Ellie for almost 2 years vs. Dr. F who has only known her for 2 hours.

Cons: 

Ellie is in her own environment and thus knows all of her toys.  Therefore, she is less motor-driven and less oral seeking.  After all, she knows what all of her toys taste like.  It would have been better if she was observed in 2 different environments--i.e. home and a park.

The Wonderful World of IKEA!  Home of many cheap items used for therapy.
Stacking rings.  We use these in Speech Therapy for "on", "off", the colors as well as for fine motor tuning.

The ECI Sensory Evaluation:

My Ellie behaved very  differently during this visit.  In our home, she felt the need to “show off”.  She fed the baby and then offered J a stacking cup to drink from.  She also sat quietly and built a tower!  Of course, during the whole visit, she did have something in her mouth-either a toy or her chewlery. She also demonstrated some of her stim behaviors as well.

Sits-Like-A-Good-Bear

So, what was the difference?  

New environments = sensory overload or the-kid-in-the-candy-store

New things must be explored.  For Ellie, that is oral exploration and tactile moving. She goes nuts pushing and crashing things everywhere.  She must mouth everything and good luck removing the objects from her mouth without getting bitten or potentially dislodging one of her teeth.  I will also point out that this has become an issue in speech therapy.  In speech therapy, we have to place her in a high chair to complete the tasks.  She mouths everything, BUT she is getting BETTER as she toys become more familiar. 

She is mouthing, BUT she is also playing.  I do this a lot when working with Ellie.  Say it is the shape sorter, I will give her one of the shapes to "gnaw" on and then we work with the left over shapes.  It does not work all the time after all, each shape and color taste differently according to Ellie.

I learned during this visit that Jan, Andrew, and I have been working on these sensory issues all along.  We have been trying to find what works for Ellie.  What works for one kid may not work for Ellie and visa versa.  We now have some other things to try as well.  It was rather amusing to hear the OT say, you could try x, y, z and then we say “oh, we are doing that already.”

ECI Conclusions:

1. Ellie has sensory issues with regards to oral cravings.  These issues do impact her activities if she is in an unfamiliar environment.
2. Ellie’s motor activities and attention span seem to be typical of a toddler (just what I was thinking!).
3. The label of Sensory Processing Disorder is NOT being applied to Ellie at this point :-) Yes, she has some serious sensory issues, but most of her behaviors are related to being a toddler as well as her global delays.  
4. Because Jan has extensive experience in sensory integration [SI], an OT will not be working with Ellie.  Instead, we will be increasing our therapy visits with Jan.  

See!  Both mouthing and playing!  In the speech therapy office, Ellie really cannot get past the mouthing.  I thought that if I got our own IKEA rings it would help.  She would be "familiar" with the toy.  It has worked.  Granted, I cannot go about buying every single toy each therapy office has to make them "familiar" to her.

My Thoughts:

Originally, I went into this eval hoping to get OT added to our ECI therapies.  I even asked if we could add in OT, but I was told an OT was not necessary (eh, sort of like what they told me about Speech therapy).  Perhaps this is true and perhaps I should be relieved she doesn’t need yet another specialist.  It is just that I feel like we have so many issues to cram into one 45 minute visit.  I am hoping that with the increased visits from Jan, all of these issues can be appropriately addressed.

Of course the stacking rings must go for a walk.

More Thoughts Leading Into Confusion:

  I think her motor behavior is typical toddler with perhaps some hyper-activity at times like her mama.  I  also believe that she has huge oral sensory craving issues that are indeed impacting her ability to communicate, learn, and complete speech therapy.  It is because of my last statement that it does indeed sound like she has SPD.  After all, it is when these sensory issues impact learning, playing, communication that it becomes a disorder.  

Find what motivates your child.  Sophie is the Great Puppy Paws Therapist in this household.

How do I know who is right?  A very specialized medical doctor who works only with children with behavioral issues and developmental delays or a social worker (Jan) and OT who solely help children around Ellie’s age work through these issues on a daily basis?

This is a prime example as to why I like to get 3rd opinions.  You know, a tie-breaker of sorts.  Next up, an ABA evaluation.

My Conclusion S/P 2nd Opinion:

So I guess my real conclusion is this: it really just comes down a LABEL.  

Sensory issues vs. Sensory Disorder.  Does it matter?  No.  Ellie is still Ellie and the therapies we will be doing with Ellie are the same sensory integration therapies anyway.  

Waving Bye-Bye to Daddy.
Her newest thing: waving bye to everyone who walks by a doorway.  Or if I say good bye to someone on the phone, she waves.  Every time Andrew or I go outside with Sophie or to get the mail, we have an Ellie Bear waving frantically and screaming "mama mama mama".  What a character!

Coming soon. . . therapies/treatments: I had mistakenly assumed that the therapies recommended would “fix” or stop the sensory cravings.  Not so.  Rather the therapies help Ellie “satisfy” her sensory cravings without being destructive or preventing her from activities daily living.  Oh and make them more “socially acceptable”.