It All Started with the Abc's
It all started with the ABC’s.
It was innocent enough. She was innocent enough. Just a tiny thirteen-month-old who could say her alphabet, and letter sounds, and count by fives, tens, and ones.
I used to beam with pride, as I’m sure most first time moms would. You know, the ones with the wool over their eyes. Campbell was always the star student, the favorite, the chosen one. She was scouted by modeling agencies. She was praised by librarians as her peers ran rampant around the room shaking bells and sucking binkies, and there was our girl, completely enthralled in a book. So enthralled in someone else’s story she couldn’t create her own.
Campbell entered every social situation with ease. She was, and is, fearless. I remember the day we were at the mall and she ran from me. When I finally caught up, she had found her way to a man with a gruffy beard and big belly. He was intimidating even for me. But, nope, not her. She was admiring the motorcycle helmet he had placed on the table, saying, “H is for helmet. M is for man,” and so on. This was her way of communicating with her world. Coming so close, then pulling back into lists, and facts, and statistics.
But we were all so taken aback by her early milestones and incredible memory that even when the flapping started we just assumed even her excitement was advanced.
By the time Campbell turned two the red flags were flying high. She was incredibly verbal, our home was full of constant chatter, but if you listened carefully most of it came from Daniel Tiger and not our daughter’s own mind. I shared my concerns with friends and family, her pediatrician and my husband. But everyone thought I was nuts. At Easter dinner when Campbell piped up, “We’re about to enjoy a beautiful feast with our friends and family,” I was met with many an eye roll—this girl was fine. But only I knew that line was taken right from a book we had read months ago. She had retained it and used it appropriately, but free thought hadn’t come yet. And I feared it never would.
You see, Campbell was a tricky one. Because for every undesirable trait she possessed, she held a positive one. Even google couldn’t give me a definitive diagnosis. So I sat for a full year knowing something no one else would confirm: my daughter wasn’t just brilliant and quirky, she was autistic.
And when she turned three, and finally qualified for testing, my worst fear came into fruition. She was indeed on the spectrum.
An avalanche of emotion followed that label, and most of it I’m not proud of. I didn’t know a single person with autism which made me feel completely isolated. I was out on the island alone, not an ally in sight, and no one had bothered to tell me the silver lining of a special needs child yet. So I started to compare. And everywhere I looked I saw picture perfect perfection. Perfect children, and perfect parents, and post after perfect post. And there I was with a sick kid and no cure.
So I fixated on this animal called autism and all the limitations I was sure it would give my daughter. I convinced myself Campbell would never marry, or drive a car, or hold a job. I’d never become a grandmother. She’d never connect with anyone, myself included. I started to believe the mother-daughter dream team I once envisioned was gone forever, and I began to grieve. Deeply grieve. I had lost someone I loved. And even though that girl never existed anywhere but in my mind, it still took a really long time to bury her.
We’re often so desperate to be unlike our parents, but if the apple falls far from the tree when it comes to our own kids we are devastated. We expect our babies to share our hair color, or height, or hobbies. Just two peas, one pod.
But as I’ve come to learn, they are their own being. Their own mind, body, and soul. You may have birthed them, but those expectations should be cut with the cord. They will do it their way. Try and stop them. All we can do is learn to accept. And after my period of grief, that’s exactly what I decided to practice: true, unconditional, accepting love. I was never guaranteed grandchildren even with a neurotypical child. I was never guaranteed a life plotted out by me. I am not the master artist. It isn’t my birthright to determine someone else’s life, or be disappointed by it. I am no longer in control, but now know I never really was. Welcome to having children.
Campbell is an ongoing story. She is four now. She goes to a mainstream preschool. She participates in every sport under the sun. She’s never needed one day of therapy. She shows empathy and tells me she loves me daily. She compliments strangers and folds her hands into a prayer formation when she feels like flapping. She also still really struggles to have a fluid conversation and make friends.
And if you think this doesn’t sound all that bad, that she’s just a girl with a few differences and we’re handling it all in stride, then you’ve caught me on a good day. You’ve also caught me two years in. Two years of pouring every ounce of myself into this girl, trying to save her from the muck of her own mind. Do we still have bad days? Sure. But we don’t have the defeating days. Or at least if we do my perspective on them has changed. Progress is a damn good thing.
So for today, I’ll take this temporary optimism and bottle it up. I’ll bottle it, and use it as my signature scent—applying it daily as I prepare to face this beautiful, but often unfair world.
Because I need every ounce of armor and optimism I can get—as I now watch my son slowly slip away from us.