Sunday, July 30, 2017

Herding cats and the promise of a unicorn

I am sure there is a deliberate rhythm to this place, a plan to walk you from Point A to Point B with specific checkpoints along the way.  I am also sure that our experience is nothing new to the clinicians here.  But as someone who is normally sitting on the other side of the table it has been an eye-opening process.  I know I try to be very deliberate in the way that I lead families through education and goal setting, or through coming to terms with facts that are unexpected (or worse) – and I am also very certain that I am not this good at it.

But I am getting ahead of myself.  So I guess we start at the beginning, right?

With nearly a year to anticipate this trip we could have allowed ourselves to pin a whole lot of hopes and expectations on this experience.  I’m glad we didn’t do that.  Mostly I would say that it was (for me at least) an exercise in patience, waiting for answers that I was certain we would find, but not knowing what they would be, how they would impact Becca or our family, if we would be able to implement them in a way that would bring about meaningful change or improvements…  I didn’t really even know the questions, let alone the answers.  So the waiting was hard.

As far as STAR goes I can obviously only speak to our experience.  I am certain other families may go through a different process, depending on the age of their child and what their goals might be.  (And it’s important to note that STAR is not just for kids – I have seen plenty of older adolescents and adults here as well.  SPD doesn’t come with an expiration date.)  But as for me and my crew, we hit the ground running with a two hour evaluation, both with what appeared to be some variety of formal testing  followed by observation of Becca in the gym.  The entire assessment was videotaped for Mim, our OT, to review later (and it is also available for them to use for other educational purposes, too).  That evening we spent two more hours filling out several (six? seven? eight, maybe?) parent reports, list after list after list of behaviors or observations that we needed to fit onto various scales.
Honestly I love my kid to pieces but I don’t know anyone well enough to answer 800 questions about them.  (800 is a guess…. but I’ll bet it’s a really good one.)
So let’s just say the parent reports were mentally exhausting.  Which was too bad, because day two was a three hour day:  an hour going over the test results and getting an introductory crash course in SPD; another hour taking those results and framing out our goals for Becca (not for the next four weeks but for the next several months); and, finally, the first hour of therapy.
And oh brother, this therapy. 
What do we do?  We play.  That’s about it, just… play.  But you would be shocked at how difficult it is to play with your three year old when you have learned that you’ve been doing it all wrong.  (My words, not theirs.)
This is where things get sticky.  I have wrestled with how far or deep to delve into all of this.  I’m fascinated, professionally, about what we are learning.  I’m struggling mightly as a parent to absorb every last ounce of information.  And there is so much – so much that is not what I was expecting at all, more basic even than understanding how Becca’s body processes all of the sensory input she is getting.
But I need to back up.  Before Mim introduced us to a new style of intervention, she talked to us about what makes Bex tick.  And because I am not an expert, and because no one is reading this to get bored by tedious details, I’ll sum up:  Becca is under-responsive to the world around her – but providing the right kind and amount of input to “wake her up” is tricky, because she can bounce from zero to 100 very quickly… only to crash back down to zero again.
The visual they use is a helpful one: Picture a bell curve.  The center third, at the peak of the curve, is where most people – at least those who don’t have significant issues with SPD – function throughout the day.  It’s the sweet spot, the “just right” spot where you are alert and engaged but not wired.  We can work, run errands, do the laundry, play with the kids, read a book, whatever.  We feel like ourselves in this space.
Becca lives at the bottom left end of that bell curve.  Her arousal level is low.  This doesn’t mean she isn’t awake, it just means that her baseline is low energy – try to remember the photo of her lying on our threshold, milk propped up right in front of her so she didn’t even have to hold it.  On top of this, most people with SPD don’t have a nice, wide sweet spot on their bell curve.  Instead, they have a narrow band in which to function at their “just right” level.  So not only do we need to know how best to get Bex more aroused but we also need to help her find, and maintain, that zone that allows her to function at her best.
If the phrase “herding cats” comes to mind you are not alone because that is often what this feels like in practice.
So that is the first thing: we need to metaphorically wake her up, then help her find that sweet spot so she can interact with the world in the best way possible.  But we can’t overshoot it, either, because then she just spins out of control until she crashes back down to her baseline.
From a sensory perspective, this seems to me to be the starting point.  Once we help her learn how to regulate this then we can work up through higher levels of sensory demand, some which will not emerge developmentally for several years.

But in fact we are actually starting at a place that comes before this, at a developmental stage that typically emerges before all of the other familiar milestones start to arise.  Our job right now is to help Becca engage with her world and, most importantly, with us.  This is our portal, so to speak, to help her learn how to regulate her sensory needs which, in turn, will undergird her efforts in other areas.

Engagement is a big but simple idea.  I think it is kind of magical – both in the way that a child’s first visit with Mickey Mouse is magical and in the way that unicorns are magical: full of wonderment but oh, so elusive.

We’ll talk more about the unicorn next time.


1 comment:

PapaGunn said...