Hi. We’ve met, so we can spare a more formal introduction. You’ve been hanging around our house for a little over a year, but your presence was felt so sparingly those first few months I kept thinking you would go away. You didn’t, you pulled up a chair, picked a room in the house, and made yourself comfortable. You never did ask me how I felt about you being here but maybe that’s because you knew what I would say: I don’t understand who you are, please leave. That’s what every mama would say, right?
You see autism, you are still such a mystery. Where did you come from, and why did you chose to stay here? Because as soon as I thought it was you knocking at the door, I did everything possible to make you go away. Everything. Speech. Occupational. Behavioral. Then diet. Therapies and doctors and specialists and all manner of mom blogs and books. I bought essential oils, autism! But I never turned my eyes away from the red flags; I stared at them in the face and drove that sweet nineteen month old all over town looking for ways to take them down.
You never got the hint. Social cues aren’t your strength, though, so I should have expected that.
And how you got here remains a mystery. Oh sure, a lot of people have opinions about it, a fact that gives me anxiety to no end. There are so many opinions about you! Did you know, autism, that there are people who think I invited you over? That your presence here is because I did or did not do something that actually welcomed you in? And because you prefer to stay mysterious, you won’t help us clear up this confusion by just making your reasons known. But I know I can’t keep dwelling on that, on your reasons. I have to let you off the hook. Or maybe I should say that I have to let myself off the hook. You’re here, so let’s just get back to that.
You see, when I first noticed you, you looked more like a shy little boy who was still looking for his words. You were never angry, you ate really well—as far as eating like a toddler goes well—you slept all night, and you remained so elusive that everyone around us said, “No. That’s not autism. Autistic kids do this and that and not this and not that.” I have since learned that any sentence that starts with “Autistic kids do (or do not do)…” is a slippery slope to nowhere. You’re like a fingerprint, autism: you look so different on everyone.
And I know you are going to keep changing. You like to keep people on their toes, don’t you? Some days you’re in a great mood and some days you’re in a bad mood. Some days I hardly notice you and some days I cry from sun up to sun down. But that’s also childhood, so I guess you’re not such an outlier. Not yet anyway.
And still, you have changed everything for us, because you are on our minds all the time! I see a cute picture of my friends and their kids, and I am jealous that you make it so hard for my little guy to look at the camera. We go to friends’ homes for dinner and I cannot relax and enjoy a conversation because the moment you are out of sight I am worried you left the house with my child. The vacations and the parks and the places that you might enjoy but you might also very well turn in to an epic disaster. The therapies we drive to every day. The way you make me so nervous to check my mail and find another bill that I only do it once a week now. The way that friends ask, “how are you?” and I am certain they want to know something, anything besides, “Well, I’m still trying to figure out how to host this long-term guest named autism,” but I don’t have much else to say. The questions—oh the questions will kill me if I let them. The fact that you are so set on your choose-your-own-adventure ways that we will never be one step ahead of you, but making decisions as we see yours. That bugs me about you, autism, just so you know.
And then there is this: the fact that I just do not know if you were part of my sweet boy from the beginning, or if you, like an illness or disease, came later, separately. Is my little man autistic? Or does he have autism? People have cancer, they are not cancer. But I am not sure about you, not yet anyway. I guess we will have to keep getting to know one another.
And let’s just talk for a minute about that precious boy, because he is one of the greatest joys of my life. His smile will melt you, and if you’re lucky enough to get a great big pucker, well, you’re lucky. And he can run! Like, three miles ain’t no thing for this two and half year old. And he loves, loves, love to play hide and seek, and the belly laughs that come from him when we do are truly the sweetest sound in the world. And he snuggles. He snuggles better than anyone, folding up his legs and tucking in his arms and finding a place for his head right in the nook between my neck and chest. My little boy is part of my heart, and he always will be.
Autism, it is no secret that I didn’t want you around, and that I have now spent a year trying to learn—and many times failing in the most visible ways—how to accept your presence. But I am writing you this letter because I have decided not to be mad at you anymore. Because you are just, well, you’re just who you are. Being mad, feeling pity for myself, looking at my little boy as if he got robbed of a good life, those things are not grounded in any sort of hope and you, autism, you do not get to steal our hope. It's not in you anyway. And I am also leaving this near-constant state of being offended behind. You have welcomed yourself in to so many people’s lives, and everyone knows someone—or knows someone who knows someone—that has spent a lot of time with you. And because of the combination of your prevalence and utter mysteriousness, people always have a story, a book recommendation, an article, an experience, a reason. But they all mean well; they are just trying to help us find a matching finger print. And what would I prefer? That everyone say nothing? No. Of course not. You are the big white elephant in the room and you know me, I prefer to talk about elephants. You are just the only one that has ever made me cry so much as I do.
But it’s a new year and a new day and, my favorite of all, there are new mercies for all of us. Even you, autism. So, since you are here, let’s really get to know one another. I promise to be kind as we do. For purposes I may not know until heaven, God allowed our path to cross with yours. And while I do not trust myself with the weighty responsibilities of taking care of you, I do trust Him.
I trust Him.
So, let’s start fresh.
Hi, autism, my name is Katie. I’m a hard worker and a learner and I love my little boy more than I could possibly tell you. And I also believe this: God is good, all the time. You may have made my job a bit more complicated, but you did not change how much I love it. So I think you picked the right mom to get to know.