We are pleased to welcome Megan Wilcox Goates as the newest member of the Segullah Blog Team.
Four months ago, I drove my son Jack two hours away to a new town and moved him into a group home. He turned thirteen just the day before.
The necessity of placing my second child in residential care was something God knew was coming, and for which he had been preparing me. The painful execution of it—getting approval for Jack’s placement and then transitioning him from the only home he had ever known to life in a faraway town—depended on me deciding it was time to get on board with God’s plan for Jack’s life.
Knowing God’s will and accepting it are parallel paths which don’t always converge. In my case, I found myself having to beat a track between “knowing” and “accepting,” to bring the two together.
For the thirteen years that I raised Jack at home, I was, as Isaiah describes, “acquainted with grief.” Special-needs parenting is challenging. Add severe aggressive and destructive behaviors compounded by nonverbal autism and intellectual disability, and you have a perfect storm for deep and abiding hardship.
But this is not a tale of woe.
I don’t like recounting the bad days, which for many years felt like most days. I prefer to think of the breakthrough moments, like when Jack told his big brother to shut up and we squealed with laughter and pride at his use of words (WORDS!) that made sense in context. Or the time my family sat on the couch and watched an entire movie together, without anyone screaming, throwing things, or painting the house with applesauce. That winter’s night equaled a teaspoonful of my someday heaven.
My life raising kids on the spectrum has been characterized by difficulty, but also by growth and, surprisingly, humility. It took me an age of mothering travail to understand that the most important thing Jack and his two younger brothers (who also have autism) would teach me, is that the way to survive one’s life is to cast aside the natural woman and be humble.
Pride is the universal sin and, it turns out, handling your robust preteen as he has loud meltdowns in public is the universal antidote to pride. My inability to project perfection humbled me. I couldn’t stop Jack from throwing the Kitchenaid mixer across the room. I couldn’t fix our problems.
In this post-Pinterest generation, womanhood and motherhood reflect an unspoken need to demonstrate more than competency. Is it good enough to be a “good enough” person? Or must we demonstrate mastery of fitness and health, aesthetically-realized wardrobes and homes, fashion-forward party-planning skills, and correspondingly curated social media pages for capturing and retouching our life into striking posts?
I am raising my special-needs children in an age when the pendulum of disabilities parenting has swung from the place-him-in-a-home-and-forget-about-him model of earlier generations, to the new world of disabilities awareness, acceptance, and inclusion. Parents now raise and celebrate their children with special needs. The convergence of this new wave of disabilities parenting with the invention of the blog has created a wide and well-traveled avenue for moms like me to write, parent, and sprinkle bits of empathy for differences around the internet like bread crumbs.
Herein lies the tension: I write about inclusion and acceptance, and yet because of the nature of my son’s disabilities, I can no longer raise him at home. He must attend a specialized school without typically developing peers. Our family’s life is unfolding “less progressively.”
In the thick of this tension lies my faith. God’s plan contrasts with my desires for my life and Jack’s life. Sometimes I wonder if the My Will/His Will conflict is the central underlying struggle of humankind.
After our most recent visit to see Jack, I wept as I told my husband, “If there had been any way to keep Jack in our home, I would have done it.”
He looked at me and said, “I know.” And then, “There was no other way.”
If life unfolded my way, it would be easy, worldly, hedonistic. Jack wouldn’t be disabled and would live at home with his family.
God’s way hurts more. It’s harder. I’m learning that he has the long view, though, and it’s better. It has made me better.
I feel I could have written Psalm 118:5: “I called upon the Lord in distress: the Lord answered me, and set me in a large place.”
I did cry out, repeatedly, and he did answer me, placing me in the prickly garden that is my particular life, with all the right pruners and trowels for cultivating peace.
The breadth and expansiveness of the earth, and the experience it has to offer, pain notwithstanding, astonishes me. It is bigger and richer than I could have imagined.