Today you told me you hated me.
I know you were very angry and frustrated and you probably didn’t mean it but still, it stung.
I know you were shocked when I told you about your new school schedule, and how it’s been extended to include August as well as July. I know how much you were counting on finishing your summer program and having a whole month lounge around and watch TV and do whatever it was you felt like doing.
I hope that one day you can look back and understand how difficult this decision was—how torn I was between keeping you in your routine, and keeping you at home.
I hope you know how often I have turned your diagnosis around and around in my hands—not the actual piece of paper with the doctor’s messy signature on the bottom—but the words themselves. I have rotated it like a prism and examined every angle, every color, and every ray of golden light.
Autism spectrum disorder.
What does it mean? What will it mean?
It means medication, and social stories to explain an ordinary trip to the mall.
It means fresh hot tears on a summer afternoon.
I know you hate me right now. That’s okay, because I kind of hate me too.
I hate that I can’t help you understand why we made this decision.
I hate that you are hurting and I don’t know what to do.
I hate watching the waves of grief wash over you, while you gulp for air beneath the spectrum’s rising tide.
I think you said it best when you shouted, “Goddamn. This AUTISM.”
What does the future hold for you? What kind of person will you become?
I wish I could say that I hardly ever think about it—that I have left it all to chance and social stories—but the truth is, I think about it all the time.
I think about it when I’m driving and I’m at a four-way stop and all four cars have stopped at almost the same time and then one of the people in the cars does a little wave to let me know I can go first.
I think about how you may never understand the little wave.
Maybe you’ll sit there forever as all the cars line up behind you. Or maybe you’ll get really anxious and your hands will start to twitch on the wheel and then you’ll press your foot on the gas at the wrong time and shoot forward just as another car moves ahead.
I think about it when we are at the airport and we go through security and we have to show our passports—you know, where it says your name is John—and then the customs officer asks if you are John and you shriek no no no that is not my name I am not John I am Jack I am Jack.
Honestly, buddy, after all that shrieking it’s remarkable we haven’t all been detained and strip-searched by this point.
I guess you could think of school as a vaccine, or a shot. You probably don’t remember this, but when you were a little baby I had to bring you to the doctor’s office and you would get a shot in your arm or the top of your chubby thigh. It hurt. You cried, and sometimes I cried a little too.
But in the long run, these shots protected you. They made you healthy. They helped you live a full, happy life.
This new schedule, it’s like that shot, and right now it really, really hurts. But I have faith that it is going to help you live the life you’ve always wanted. It’s going to help you understand the non-verbal cues of our culture and give you tools to manage your anxiety and at the same, teach you math.
Because the thing is, buddy, I can only take you so far. And I have already made so many mistakes. I am sorry.
I’m sorry for telling you to clean up the kitchen instead of admiring the cookies you baked.
I’m sorry for the nights you laid awake, restless and alone, while I slept unknowingly in my room down the hall.
I’m sorry for the day we all went to the beach and you cried the entire time because you were afraid of the seagulls flying overhead but I kept telling you to relax, it was fine, stop crying Jack, because I did not yet understand the way anxiety held you within it’s relentless grasp.
I am sorry for all the times I snapped at you to stop talking about Disney movies, and all the times I lost my temper, and all the times I should have comforted you with soft, motherly kisses on top of your head.
I’m sorry we didn’t just name you Jack.
There is a little secret hiding behind my impatience and my, and that is I am afraid that I am not good enough. I am not a good enough mother to raise a boy with autism, and I am making all the wrong decisions and because of how stupid I am, you will never learn the little wave and you will never be able to drive a car and your life will not be full, or happy.
One day, I hope you can forgive me.
I know you hate it when I tell the server at restaurants or the ticket-taker at the movies or the cashier at Walgreens about your diagnosis.
I hope one day you can look back and realize I am trying to make autism a just a regular old word—something that people hear again and again until they don’t even think twice about it.
At the same time, in less than a minute, I am trying to reach them. I am trying to tap into the things that trigger them, and excite them, and make them sad. I am trying to connect them to us, and our story, the way a child connects two Legos together to make a piece that is big and strong.
I am rooting for you, that’s what I want you to know. I am on your side. And even when I am not standing right next to you, I am with you every step of the way.
One day, I hope you know that I have always seen you for the boy you are, not the diagnosis you have.
You are more than rigidity and movie facts and little white pills before bedtime—more than the wily snake of anxiety and fear.
You are more than autism.
You are the strongest swimmer against an uncertain tide.
You are courage, and triumph, and color, and light.
You are fresh hot tears on a summer afternoon.
You are Jack.
I am proud of you.
I love you.
You make the most delicious cookies I have ever tasted.