Your birthday is coming up this week.
I remember the day we brought you home from the hospital. I looked out of the car window while Daddy drove and I noticed how all the trees were sprouting small buds at the end of their branches. And the grass was so green, I couldn’t believe it. A new season was upon us.
This week, you are turning fourteen.
Instead of saying this:
“My son is thirteen. His name is Jack. He has autism.”
I’ll say this:
“My son is fourteen. His name is Jack. He has autism.”
Autism, well, it’s the postscript at the bottom of your letter—the addendum after your name, the follow-up for a boy. It trails behind us all day long, like uninvited guests to a party.
I’d like to make an eye appointment for my son, Jack. He has autism.
I need to sign my son Jack up for swimming lessons. He has autism.
Could we get the tacos without cheese? That’s how my son Jack likes them. He has autism.
Every memory of you is tagged, and labeled.
Remember when he started karate? He was really off that day.
How about the time we all went to that new restaurant for dinner? Jack had a meltdown because we asked him to use his fork instead of his hands.
Disney was a lot of fun! Jack had a hard time waiting in line though.
I regret this.
Okay, maybe more than a smidge of rigidity.
I never meant for this to happen. I didn’t plan on attaching autism to you like some kind of ball and chain. I never meant to keep mentioning it over and over again to everyone.
This is where I failed you. This is where I failed myself.
I wish I could talk to every mother and father who is hearing an autism diagnosis for the first time. I wish I could sit in the waiting area for them to emerge, shell shocked and shaken, from the exam room. I would comfort them. I would try to make them feel better. I would bring snacks.
I would take their hands, and lead them over to a big, soft chair. Together, we would sit, and shake our heads, and smile ruefully. Autism. Who knew?
I would tell them, don’t be like me. Be different. Be better. Because all this time, while I’ve been looking and watching and waiting and hoping, I focused on the diagnosis more than I focused on the boy.
I would say, listen, I know. I know all about the appointments and the neurologist and the race against the clock and the scary research and the way your heart starts to flutter in the stillness of the night.
And then, in the light of the morning, you can’t help it. You just look at that child sitting at the table and you start cataloguing all the unmet milestones, the delays, and the limitations. Before you know it, you’re barely thinking about how cute he looks in his little blue pajamas, because you’re too busy trying to remember the last time he strung three words together and then you might think you are going literally, factually insane because maybe he never even said three words at all.
I’m just saying. It could happen.
It’s so easy to do. It’s so much easier to quantify the work that needs to be done, the therapies that need scheduling, and paperwork that needs organizing. It’s easier to do all that than contemplate an unknown future.
The thing is, Jack, somewhere deep in my brain and my heart, I was scared if I celebrated even the smallest success—if I took my eye off the spectrum ball for one single second, we would backslide altogether. We would regress.
Regress is such a weird word. Yet it is a term with which we autism parents are well acquainted. It is the monster under our beds, the stranger banging on the door, the carjacker waiting at the stoplight on a dark, deserted street.
What does it mean? Well, it means to go backwards, like the time you stopped eating applesauce when you were three years old.
There you were, eating it just fine all la la la, until one day you wouldn’t touch it.
Oh, how I tried with that stupid applesauce! I tried to get you to eat it as if my life depended on it. I added cinnamon. I bought new spoons. I made ridiculous airplane noises while I nudged it into your mouth and I clapped my hands like a moron if you took a tiny nibble.
Still, you spit it out. You always spit it right back out.
And then I launched myself into a tizzy and worried you might stop eating all kinds of food and maybe this was a sensory thing and I should look around for a therapist who helped kids eat regular stuff.
Somewhere along the way, I forgot to separate the two.
Today, Jack, I don’t want to remind you to use your fork.
I don’t want to worry about applesauce.
I want to tell you bigger, more important things.
As you approach fourteen during this lovely spring, I want to tell you all the things I should have said.
I want to tell you I believe in you.
Time and time again, I have watched you swim against the wide tide of doubt. I have watched you persevere, and persist, and search for the right words to express yourself.
I am proud of you.
I am proud to know you. I am proud to be your mother.
You make me happy.
I believe you will have a beautiful life. I’m not sure what that looks like just yet, but I know it is true.
I believe there is a place for you in this world. I don’t know where just yet, but there is. It is a good place. It is safe, and kind, and full of wonderful people who love you.
I love you. I know I don’t say it enough, between the forks and and the rigidity and the waiting in line, but I do. I love you. I love you the way the sun fiercely loves the earth. See, the earth is not perfect, and sometimes the clouds get in the way. Yet each morning the sun rises and shines down warmly.
From now on, I’m going to say it like this:
“This is my son Jack. He is fourteen.”
I forgot how green the grass can be.
Happy birthday, my Jack-a-boo.
It’s a new season.