Ten days ago
I kept my youngest son home from school because the Occupational Therapy clinic, the one we’d been referred to by our psychiatrist and which didn’t have any openings until late November, called us with a cancellation. God knew we couldn’t wait until Thanksgiving for help. We were struggling merely to get Truman to go to school every day and to eat anything other than dino nuggets and various incarnations of processed sugar. God knew, and He came through, as He does.
I cajoled Truman out of the house. He doesn’t ever want to go anywhere. He prefers predictable, quiet, media-focused hours at home. While eating beige carbs.
All of this makes infinitely more sense now, following the two-hour Occupational Therapy evaluation, where I learned that Truman has Sensory Processing Disorder.
As the OT went over our struggles and compared them to lists describing SPD, Truman was essentially a textbook case. All of this information on his stressors, sensory integration concerns, and a pervasive level of overwhelm both crystallized and shone a clarifying light on the nebulous issues that have marred our days since school began six weeks ago.
I suddenly had a much better understanding of my son’s inner level of conflict and terror. My empathy grew three sizes that day.
Later, I pushed a cart around Costco, which seems to be the place where I do most of my existential motherhood musing. I felt glum.
Another diagnosis. Another thing that’s going to require lots and lots of therapy, time, and parenting effort. Another layer of difference between my life and everyone else’s lives.
Yet unlike the years it took me to recover from Jack and Charlie’s diagnoses, this time I felt strangely okay by evening. This is us, I told myself. It’s who we are. I know how to do hard things, and this is actually a really helpful bit of information in allowing us to productively move forward. Hello, quick healing process. Pleased to meet you. Also, thank you Jesus, for sending this mercy of acceptance.
I ate some chocolate-covered almonds and thought about the fact that we are capable of doing this, a single step at a time. And then…
One Week Ago…
We left for Disneyland.
The timing of this trip was not great, but it had been booked for awhile. My younger boys had never been to the Magic Kingdom. We were going with Grandma Shirley and my sisters and their families. It was going to be cousin-palooza. And yet, Truman was in the throes of not coping with noise, activity, and new things, and I was dragging him to Disneyland of all places.
He didn’t want to go. I didn’t want to go. The irony of NOT wanting to go to Disneyland sat heavily on me. “We are that weird,” I thought. Even The Happiest Place on Earth is laden with too much hardship and stress.
I forced him to go. He cried on the way to the airport. He got excited after going through security, which he oddly finds exhilarating, and announced he had decided to go to Disneyland with us. This is good, since he was going with us anyway.
Our first morning in the park was, and I say this without irony, magical. There were no lines. Truman was enamored with Star Tours. The big kids were dying over Space Mountain. The guys were making plans to build their own light sabers at the Star Trader. And we were at Disneyland! That iconic jewel of deep nostalgia and unfettered joy that had been out of reach for so many years of our lives as Jack’s family.
An hour and a half into our morning, Truman started to fall apart. It was getting busier and noisier. There were no dino nuggets in sight and he’d only eaten a few teddy grahams for breakfast. I could see his tension building. The volcano was going to explode.
But before I continue, I must tell you what happened exactly…
A Year and a Half Ago
In the dark days after Jack left home for residential care, I became Facebook friends with a writer named Meg Conley, who lives in Oakland, California. I’d known about her for years and decided we had enough mutual friends that it made sense for us to follow each other.
Meg messaged me a couple of weeks after Jack left. I hurt constantly with grief in those early days. Nothing felt normal. Nothing was right. In her message, she told me she had read all my posts describing the painful days leading up to Jack’s placement. She noted that I mentioned wanting to take my other boys to Disneyland, that bastion of “normal” family vacationing, and she said that her mother-in-law is Nanny in the Kingdom, which is a business where she helps families with special needs and/or young children have a more enjoyable time in the parks. She’s an extra set of hands, she sits with overwrought children, she obtains Fast Passes and Disabilities Access Passes, she provides a calm voice and the blissful relaxation of modeling clay in the midst of the frenetic energy of Disneyland. It’s literally her job.
Meg told me that whenever I wanted to go, her MIL was on board to help us. It was covered.
Sometimes I am flattened by the goodness of people, followed by a swelling sense of rightness that this is how people are at heart, if we can only tap into our inner divinity. Anyway…
Two Months Ago
When I emailed Deb (said Nanny), she told me she was unfortunately booked when were were going to be there, but she offered to help us get set up with a DAS pass, and get us oriented in doing Disney. This sounded like a kind offer to me, since she really didn’t have to do anything for us. We exchanged cell numbers and set a meeting time.
We met Deb, a soft-spoken and businesslike woman with a big, big, big heart. She calmed Truman down, essentially diffusing the volcano. She got us Fast Passes and a DAS pass. She took Truman to play in the giant Tree House by the Indiana Jones Ride while we all ate at Bengal Barbeque. She told me that once a month she takes her younger sister, who has Down Syndrome, to Disneyland. That was her conflict that afternoon. On her days off, she helps her sister, which in turn helps her mother. It’s a bit of respite and an enormous kindness.
Truman and I went back to the hotel at midday, stopping for a Happy Meal on the way there. I pondered the fact that we were doing this–that my bigger boys were squealing with their cousins on all the wilder rides, that we could do this with family, that my online friend and sister Meg sent her mother-in-law to help us get started, that Jack was in a safe and happy place and not melting down at Disneyland, and mostly that disabilities have both limited and schooled us in humility, gratitude, and compassion. Which leads me to…
Two Sundays Ago
I sat with Truman in Sharing Time in Primary. Church is one of the many things that Truman struggles with. It’s too long, crowded, boring, and out of his control. With lots of one-on-one support, he can generally make it through two of the three hours. Mostly.
The Sharing Time model is an old-school one which values reverence, stillness, and quiet–not the easiest thing for small kids, whether or not they have autism and sensory processing issues, and who have already sat for an hour and fifteen minutes in Sacrament Meeting. At 2:30 in the afternoon. When we really should all be taking siestas, amirite?
Truman kept jumping off his chair (this is proprioceptive and sensory-seeking behavior, yo). I kept shushing him. I sang the songs while he swung his legs and wiggled in his seat. Then the Primary President popped in a Bible video of Jesus ministering to the children.
At this point, the rowdy room turned quiet. The children were watching.
I leaned over and whispered, “Jesus loves you, Truman. He is proud of you.”
His eyes widened and he grinned up at me with his gap-toothed smile. “I can actually feel it,” he told me. “I feel it!”
The frenetic energy in the room distilled into a spiritual energy. The children internalized it. They went from wanting to flee Primary because it’s too long and crowded and boring, to wanting to be where Jesus is. They felt it.
I felt it, too.
Jesus loves little boys who are afraid of everything and cry daily before school. He loves hapless, exhausted moms. He loves Meg for reaching out to me in generosity, and Deb for being kind to people. He loves us when we’re sad and scared, and when we’re hopeful and happy.
Grace is the beginning and the end of this story.