Several years ago our youngest, then four, was diagnosed with sensory processing disorder (“SPD” or “SID”). This eventually morphed into attachment “issues” and developmental trauma. As I have written in the past (Time for Tummies, MavenMama, January 11, 2011) her early life in an underprivileged orphanage had left her with scars, the depth of which we had just began to understand following our household move to Singapore in 2005.
After three years of living with a child who could not sleep let alone settle, who could charm anyone but couldn’t hold still long enough to be loved, we found our way to occupational therapy and a diagnosis of SPD. This was our first experience with “OT” and we had a lot to learn about sensory issues and therapy.
I quickly got over my misconstrued notion that this knight-on-a-white-horse of a therapist would work with E and solve all our problems while I read a book in the waiting room. Instead I was beckoned, no politely instructed, to join them in the gym (a play land of swings, mats, balls, ropes and Lycra sheeting). So began my indoctrination into the world of therapy.
At first, due to E’s controlling nature, I was only permitted to observe from afar. Notebook in my lap, I watched our therapist adeptly handle our bundle of joy (and mayhem). She would use wonder and excitement to entice E’s imagination, shaping it into games that in the end would lead E through an obstacle course of E’s own making (or so E thought).
Never miss a local story.
New words: “motor planning”, “sequencing”, “proprioceptive” and “vestibular” filled my head and notes. Slowly E began to allow herself to feel pain and to come to me for comfort when told to. She slept more quickly and stayed that way for longer. She flipped upside down, hung from the ropes and crashed less often. Epic was the day she allowed me to climb in the huge Lycra hammock and rock her; equally so when she included me in her gym game.
Months of this work lead to more therapies: Sensory work at home with me trying to replicate the OT’s skills, E’s brain expanding and healing with every spin, swing, roll. “Therapeutic Listening” sessions two times a day for thirty minutes each. Brushing and joint compressions (also known as the “Wilbarger Protocol”) five times a day. Cranial Sacral therapy with a practitioner who brought the walls around E’s heart crashing down in one amazing week. “Neuro-Reorganizaton”, a movement based therapy, which has had us crawling and creeping for a total of three hundred and sixty five hours and still counting. Reading work with the Orton Gillingham teacher at school and with Daddy in bed each night.
Along the way our parenting styles were tested and tweaked more than we ever thought possible at this later stage in life. “Therapeutic Parenting” and “Floortime” crept into our parental toolbox. “Developmental Trauma” and “Attachment Disorder” became topics I could lecture about in my sleep (and bore my friends with during the day). Books on child development, SPD and neuro-science stacked up on my night table.
Now years out from our darkest hours we have all been through a lot: this wonderful child from God, our marriage, our family. And we are so much better for it, E most definitely, the rest of us less than we might like to admit. But while I can see this as plain as day, a few weeks ago I hit a wall in the world of therapy.
We had just completed five days of intensive work on brain integration in hopes of ridding E of her lingering expressive speech issues and spurring her sluggish reading forward. And while we did have some further results I found myself disheartened when she didn’t turn and pick up a chapter book and read aloud as if she had been waiting to do that one thing for the last two years.
“Enough!” I found my therapeutic heart screaming. Enough creeping, enough crawling, enough swinging and jumping. Enough reading and researching. Enough wondering, “what next, what would heal this one last neurological glitch?” Enough praying.
“We have come so far but I am so done! At what point do we step back and say ‘enough is enough, look at what we have accomplished?’ And what of E, who now pretty compliantly (given the circumstances) puts up with our work? When does she get to just be a normal kid, who walks to music and books on tape, rather than creeping across the floor on hands and knees to them?” I found myself wondering aloud all these to my other dear been-there-done-that mommy friends.
“Perhaps therapy is so much harder now because our children are so much better? Because their behaviors which woke us before the morning light and were only put to bed when we, exhausted, put them to bed, are mere nanoseconds in our days now? Because we can see the light at the end of the tunnel and it is a few car lengths away?” mused one wise mom.
She was right I realized. When I lived day in and day out with a child who could not just “be”; who drove all of us to distraction with her deep dysregulation; who could be triggered at who-on-earth-knew-what; who fell asleep midsentence and woke at 5:15 moaning to ride her bike (despite the darkness and cold); who couldn’t remember the name of her friends, her favorite objects, or the words to a beloved song; who couldn’t organize her motor planning enough to sit down and do a craft and would rather watch TV upside down thank you very much, it had been easy to climb into my therapy car and hit the gas.
But now that I spend my days with a responsible, bright, compassionate and in-love-with-us child my car is running out of gas. And from the looks of the light ahead, perhaps that is okay. Now if I can just limp to the service station just outside the tunnel we can fill up and we can get back on life’s road.