"There is for us a wonderment about another way in the world."
I guess what I wanted was a smooth life. I worked hard to arrange it. It wasn't hard work I hoped to avoid. It was chaos. It was struggle, heartbreaking, can't-fix-it struggle.
I can see now that is not how life works, but for a while I labored under the idea that my hard work = the life I always wanted which included a happy, healthy, well-adjusted family. It actually worked for a while, or seemed to anyway. Mike and I were exhausted throughout his years in medical school and then residency, but then who isn't? We seemed to worked well as a married team raising our little family with deep love and hard-won boundaries in the crucible of that white coat training. Life wasn't perfection, but it seemed to "work", for a while anyway.
When Mac was nine months old, we packed up our family of five, soon to be six, and moved to Philadelphia for a six-month fellowship. We sold Mike's old Nissan truck to buy the plane tickets and sublet an apartment for the summer I would be there with the kids. Even as I write this more than twenty years later, I can't believe how crazy it sounds and how well it worked, even for Mac.
We squeezed the five of us into four seats at the back of the plane. Somewhere over Chicago, our five-year-old started looking pale as a ghost. I took her to the airplane restroom to wash her face and hands. When she lifted her hands to the tiny sink, I caught a glimpse of small red spots on her belly. I lifted her shirt and suspected the start of chicken pox. She slept as best she could laying across me until we landed in Phili.
We grabbed our bags off of the carousel and picked up a rental car. We headed straight to a big-box store for supplies before driving into the city.
Mike added popsicles, Aveeno Oatmeal bath and Calamine lotion to our basket full of diapers and wipes, milk, animal crackers, peanut butter and jelly, fresh fruit, coffee, bubbles and a large plastic kiddie wading pool. If my suspicions were correct, we would need supplies for up to three weeks.
I was already calculating twenty days of staying home in quarantine first with Kate and next with Mac when he caught it from her. Our tight-budget plans included not having a car beyond this weekend of settling in. Mike would walk to the hospital for work and all of us would walk to and from a local market for groceries. We should embrace the urban life and stroller to nearby parks for play.
We had a history with chicken pox that taught me well. About 5 years earlier during Mike's internship year, Sean came down with a case and gave it to Mike. It was the longest time we would all be together during his eleven years of medical training. He spent it laying silent in our bed, lights off for ten solid days. Popsicles and darkness were his only remedies. On day eleven he staggered out of bed and went back to work.
So chicken pox started our life in the gritty city of Philadelphia. I tell you this not because my life was being alone with sick kids while Mike worked long days in an unknown city, it was, but more because Mac was such a trooper. He weathered sticky heat and humidity, lots of sweaty riding in the stroller and unfamiliar surroundings like a champ. And he did it all with crusty, spotty, sensitive skin in a strange urban jungle.
I still wonder about that time.
I didn't see any signs of the autism that would dawn just a few short months later. Mac slept that first night and every night after in the pack-and-play we brought from home and set up in an unfamiliar bedroom. He happily rode in the old umbrella stroller piled high with grocery bags. We walked to and from the mini market like a giant lumbering along the broken sidewalk, me pregnant with Ryan, pushing the laden stroller, Kate and Sean each carrying bags while holding on to the side of the stroller.
We walked like this all over the city: to the Liberty Bell, the Betsy Ross House and to the LOVE sculpture in JFK Plaza.
At the end of that summer, we celebrated Mac's first birthday with chocolate cupcakes made from a box followed by splashing in the plastic kiddie pool. He took his first wobbly steps in that sublet courtyard apartment in downtown Philadelphia.
I returned home to Portland in time for the start of school in the fall - Kate to kindergarten and Sean to second grade. Just before Christmas break, a huge ice storm, felling trees and knocking out power swept into the city. I was too busy counting the days until Mike came home and our baby would be born to notice that storm was headed straight into our lives.
It has taken some time, but I finally see that
a is for awe.
Awe is a mixed emotion. It has two sides. On one side is the light of overwhelming wonder, reverence, sparkling admiration and intrigue. On the other is the darkness of trepidation, fear, unknowing and grief. Autism, I think, holds it all.
When I met autism, I was thrust into a world of dark awe. Suddenly, I didn't know how things worked anymore, things I thought I understood before like communication, parenting, family, life, schooling and church. Not that I had it all figured out before I met autism, but I had some working ideas. Autism showed me how little I truly knew and it scared me. I'll be honest, at first I could not find the wonder-filled side of it all. It seemed only the dark-cloud side - the fear, the ragged unknowing, the waking to a heavy metal sky.
It seems I did not understand how simple things worked; how most of us get through life reading social cues, how we seamlessly integrate what our senses take in, how we learn to read, write, make friends and go to school. Aren't we are made to connect with other souls and then find our way to do it? How can that process be broken in child?
I didn't begin to truly understand these processes until I realized they were broken and needed restoration, or missing and need rebuilding from scratch. All I could see was the light went out in our beloved used-to-be-bright-eyed boy and I felt mine being snuffed out too like fingers to a wick.
I suppose some children on the autism spectrum withdraw and our work is to gently and persistently draw them out, but Mac seemed to lash out and fight back with a ferocity that scared us all, him most of all. Before a blowout, he would stop talking. We came to see that silence as the eye of the storm. Afterwards, he would sleep hard and wake up clear eyed, the storm having swept him clean.
Slow like molasses, I surrendered to our new normal. Slow like molasses was our new normal. All of life needed to slow down and steady itself. We needed more time with doctors and therapists. We needed more intentional space around activities for transitions and managing meltdowns. We needed more rest. We needed new ways to lean on God and his ways. We began learning different ways to parent, to communicate, to love and to forgive.
It became reluctantly clear in some of Mac's early testing that he had a receptive language delay. I didn't even know precisely what receptive language was or that this part of language is meant to come first in a child's development. Somehow he had skipped right over the understanding part to the speaking part. I still cannot tell you how that happens.
When he did not understand instructions or activities, he was doing a whole lot of guessing and looking around for clues. The closer we paid attention, the more we could see it in how he played with his siblings, with other children or on the playground. It was more near than with, it was more alone than together.
Yet he wanted to understand, at least sometimes. He knew there something to understand. His misunderstanding of how to navigate the world or his own wild feelings either made him shut out the world or brought hot frustration to the surface of his sensitive skin. He had no nuanced skills to handle the burning heat of his emotions so he alternated between volcanic eruptions and being frozen in place.
I started paying better attention to what Mac understood and what was lost to him. I, who spoke and moved quickly, who wanted quickness in my children, learned to break down my words, take pause and wait to speak. I wasn't the best of students and slipped often back into my fast ways.
I remember one ordinary day when when a light went on for me. Mac was about two years old standing at the scale in our pediatrician's office. We had been here many times before.
This is how it went when we walked with the nurse out in the hallway to the scale. There were little blue feet taped to the bottom of the scale and when the nurse asked him to, Mac stepped up on the scale and she moved the metal weight sideways along the ruler to measure his weight. No problem.
Then she gave a three part instruction and gently touched his shoulder, "Jump down, turn around and back up to the ruler so we can see how tall you are." Mac hit the deck like a bomb had gone off.
This time, I saw something different. I ignored her disapproving look and asked her to give us a moment. I got down on the floor with Mac, but did not touch him. He wasn't in trouble for throwing a tantrum. I suggested we try again.
Eventually he got up. Where he could see it, I reached up and slowly brought the metal measuring arm down near where we might need it to record his height.
We began again. He stepped up onto the blue feet taped to the scale, facing forward to match the feet. Then I said, "Jump down." and I jumped a single time in place. I waited for him to do it. Once he did that, I quietly said, "Good job, Mac.". Then I said, "Turn around." while making a circular motion with my index finger. I waited for him to do it. Once he did that part, I asked him to back up to the scale and backed my own feet up to the edge.
This part was a little trickier because the picture of the feet was backwards to what I was asking him to do. I stepped my own feet onto the imaginary scale behind me and he imitated me. I think I imitated the straight posture of a soldier without saying anything. Without touching him, I brought the metal arm down near the top of his head, but not touching. Close enough.
It was as if the clouds parted and let the sunshine into my heart. A whole new world opened up to me, between me and God and in being Mac's mama. To be understood, for someone to really attempt to know us, is a deep-seeded need for us all. I felt the wonder of how Mac understood the world, how God had crafted him with me as his mama and then met us at that crossroads. It is what God has done for us in Jesus.
I felt like Jacob and his dreamy stairway. In the darkness, in his sleep, he stumbled onto a ladder, a place where angels can move between worlds and God could meet him. I didn't know that was what I needed. I was trying to hold fast to the world I thought I knew and get Mac to meet me there. Instead I learned to go to him and to God. By God's grace, I found a new place, an opening in the heavens where God has already been and waits for us still.
When Jacob woke up, he said,
“God is in this place—truly. And I didn’t even know it!” He was terrified. He whispered in awe, “Incredible. Wonderful. Holy. This is God’s House. This is the Gate of Heaven.”
That is how I slowly began to see autism with a mixture of fear and wonder, a place that taught me to move between heaven and earth and let God come down. We still had tantrums, plenty of tantrums. But less and less did I think God was far off or that he had closed off the sky to me or Mac. More and more I started to wonder if this other way might have something beautiful to teach me, to shape me and craft me more fuller into God's image.
I had crossed over to the brighter side of awe, that is from only terror and despair to intrigue, wonder, maybe even praise. There came a series of small epiphanies that made life a little brighter. Mac needed to receive language in small bits and with a patience pace. He needed pictures to support language. He needed sensory space around his body.
I needed to bend down to Mac's eye level and see the world the way he sees it, something God does for all of us whether we recognize it or not. Don't all of our children need this bending down?
I needed to feel some of Mac's true fear and lostness in the world of fast moving words, speedy information and incomprehensible time. I needed pictures. I needed small steps and patience for his processing pace. I need to get over myself and any disapproving looks from the world.
We were both learning. Our whole family was learning and we had a long way to go. But there was a glimmer of light in the darkness.
We would learn together. It took me a while to realize that if autism weren't overwhelming to me, how could I understand Mac's response to the world that overwhelmed his little body and soul?
Temple Grandin, that rare and articulate human being on the autism spectrum capable of telling us how she sees the world, explains that she thinks in pictures and in details. Other minds think in patterns or words. Here is beautiful thing. We need all kinds of minds to make our world whole.
I have finally come, by the long and winding road, to think of autism as awe-tism. All of the brokenness in connecting and interacting with the world in a "typical" manner brought by autism makes us find and appreciate other ways of connecting, other ways of thinking and learning. Maybe we have been missing those other ways.
Maybe loving our different child helps make us more whole. Certainly it make us more creative.
Loving our child with autism or any special need may not be smooth, but there is wonder and intrigue in every human being that began in the heart of their Creator. I still like for life to be smooth, but the rugged view is one I am glad I didn't miss.
See Temple's TEDx talk The world needs all kinds of minds.
Temple also wrote a book Thinking in Pictures