It was about 4:30 in the afternoon yesterday when I finally got to exhale.
I find it hard to believe that there is actually a single soul out there that doesn’t know this already, but our little family packed up the minivan and headed out west last weekend for a month-long investment in our middle child. Five people, one dog, and a ridiculous number of electronic devices made the 20 hour drive to Denver to see if we could start to unravel some of the mysteries that bind up our sweet Bex.
But really, the 20 hour drive was the easy part. This adventure has been over a year in the making, starting with a book, a desire, and a ha-ha joke that didn’t end up being such a crazy idea after all. It took phone calls – so very very many phone calls – and more favors than I can begin to recall. It took patience and faith, both in very short supply in this little heart of mine, and reassurance from friends who reminded me that sometimes I have to just wait things out, even when I don’t want to. It took courage to ask for extraordinary consideration from not one but two large employers who really didn’t have to accommodate us to make this journey and learn about a disorder that is unknown to most and poorly understood by many. It took a foolish, stubborn refusal to acknowledge financial reality and a lot of persuasive writing to convince perfect strangers to invest in our hopes for our little girl.
And now, after all of that we are here. The suitcases are unpacked and we are five hours into a 45 hour intensive program to help us learn how to parent a child whose brain is wired just a little differently. It was after that fifth hour, on our way home from a mentally and physically exhausting three hour day, that I finally allowed the doubts to subside and my throat to relax. No more holding my breath. I got to exhale.
Now inhale. This is when the real work begins.
Sensory processing disorder (SPD) has been vexing me for nearly 4 years but I didn’t recognize it until we were neck deep into therapies and appointments with specialists and wondering how many different programs we could have the poor kid doing at once; I still wish we could find a way to take her to KinderMusik and swimming, and I’ve read that martial arts have nice carry-over benefits for executive functioning. But at the end of the day there is always this Thing, this vapor that seems to surround her and never really dissipates. Our girl is in there – we see flashes of her humor and intelligence, and her sweet, gentle heart is obvious to everyone who meets her - but we can’t cut through the fog to help her find the way out. That is what SPD looks like in our lives.
But it’s different for others. In some there is a hypersensitivity to touch, sound or light. In others it might be an incessant need to move, jump or spin. Some might love the feel of tight clothes on their bodies; others might cringe at the lightest touch. One person might love to feel different textures, another might hate the feeling of anything on their skin. SPD is no one set of symptoms, and it often manifests itself in a variety of ways in one individual person.
After a two hour evaluation, and another two hours of filling out parent reports, our occupational therapist (or OT for short), Mim, sat down with us yesterday to talk about how SPD seems to be presenting itself in Bex: decreased arousal, sensory under-responsivity, and sensory discrimination disorder – specifically in regards to position/movement. What does this look like? It looks like this:
More often than not you will find Bex laying on the floor, the counter, the sidewalk… any place hard and relatively flat. You might see her with a handful of Playdoh, but instead of squishing it in her hands or rolling it into a snake she has it pressed against her face. As an infant Becca would seek out ceiling fans and could spend several minutes just staring at them; now you’ll be more likely to find her on the floor, next to her beloved black lab, shaking her head back and forth. When she is running around like a typical toddler you might notice that her run is erratic, arms and legs akimbo, and that she often trips over literally nothing.
This is what SPD looks like at our house.
What Mim said yesterday didn’t particularly surprise me but it was reassuring to hear that what we see really does exist, has a cause, and can be addressed. Knowing that we were there with someone who not only sees what we do but also sees the path to helping Becca learn to regulate these things was a relief. She’s like our SPD Sherpa: our guide who does an awful lot of the heavy lifting but whose goal is to help Becca, Rob and me make it to that summit that seems impossibly far away. I can’t image how we will get there but Mim is a believer. And a believer is what we need right now.