I have a kid with autism. Correction – I have a super great kid who also happens to have autism. She’s a complicated, loving and funny girl who is also the most fascinating person I’ve ever met. But all this is so difficult to put into a few words.
The way I feel about Georgia is complex and layered, and wrapped so very closely around my heart. Peeling back those layers and putting them into words is really, really hard for me. But over the next few months I hope to uncover some of these layers, as I write about the fantastic, invigorating, inspirational kid who lets me live with her.
When Georgia entered my life 13 years ago I had no idea what I was in for. Like many new moms, I had read all the books in preparation and afforded myself those mom-to-be fantasies about the accomplished musician, world-renowned poet or caring doctor she would be. The afternoons of movies and shopping we’d have: just us girls. I remember being nine months pregnant and on bed rest in a lounge chair in my parents’ backyard, dreaming lazily in the summer sun about “the girl who would be.” A short time later, back at home, the parenting books were in a box outside my house – free for the taking – and the visions I had for my future daughter far less clear.
The process of figuring out Georgia’s diagnosis was much like that of other parents. After she failed to meet most of her developmental milestones and wasn’t able to walk at age four, she underwent a full three-day assessment, at my insistence. At one point during this grueling process, a resident informed me in a way I think she actually felt was caring that I might “just want to institutionalize Georgia and move on. Make a life for yourself.” Huh? Wait, this was my life! Move on? To what, exactly? I remember that before the assessment I had been anxious, and almost relieved that something was going to be done. At that moment, I felt cold, panicky and alone.
I remember taking Georgia from the physician’s hold, and asking for the assessment to stop for a few minutes. I needed to hold this lovely person tightly, close to me in that moment and to show to the others in the room that she was my delightful little girl. Mine. My instinct was all mother-lifting-up-a-car-to-free-my-child, take her and run.
But I didn’t. We lasted the three days and when I sat down with the psychologist and physician to discuss the findings, with Georgia playing in the corner of the room, I was told, gently, that she had autism. And a significant developmental delay. And both mobility and strength problems that would persist throughout her life. Funny thing is, though I’m a health care professional, autism hadn’t even occurred to me.
I kept saying the word over in my head, and it scared me. Autism. Out loud in the room, the word hit me as if I had run into a brick wall. I wasn’t prepared to hear it, and I was someone who was always prepared. I was angry at myself for not considering it, for not reading all I could have read about the possibility, for not having questions at the ready. We talked for a long time, in a blur, and I remember simply wanting to be out of there and in my car, with Georgia, heading somewhere, anywhere. As it turned out, we first just sat in the parking lot together in the car for a good hour, while I sobbed quietly and she played in her car seat, happily oblivious. And then I drove where many of us drive when we’re at a point like this: my mom and dad’s house.
When I finally got home, I allowed myself a few days of lying on the couch when I wasn’t caring for Georgia or answering the emails of my Ph.D. supervisor, who was of course wondering why I had fallen off the radar as I was finishing up my dissertation. I let myself feel deeply sad and grieved for some random fantasy girl I had never met.
And then I got off the couch, and I. Went. To. Work. I put that sadness and grief aside and instead focused on the most important thing at that moment, and still today: making a life for Georgia. I read, and researched, and talked to people, to everyone, anyone who wanted to offer advice, or share their experiences. I got down on the floor and played, I put on music and we danced, I took her the park and propped her into the swings and watched her laugh. I encouraged her to squash peas and splash bath water. When I found a book or piece of music that she responded to, I quickly bought every version of it and every book in the set. I took her to local cafes and restaurants, and engaged in her that busy, chaotic thing that is everyday downtown life. I filled her life with as much colour and music and words that I could. And I watched. And waited, and learned.
So now we’re here. She’s 13 years old. She loves Bob Marley, dogs and babies. She has a vast collection of safety helmets and police horse trading cards. She prefers sushi over candy, and tights over jeans. When she’s angry, she growls, “Piece of brown bread” – an expression that we now all use when we’re especially ticked off. When she’s happy, she barks. She is a great swimmer and can do some pretty funky dance moves. We’re completely used to her and she puts up with us. It’s probably a lot like other families with teenagers. Well, probably not. But that’s absolutely okay. We like it this way.