Listen, I don’t like to give a lot of advice when it comes to autism. I mean, I hardly know what I’m doing and it’s all very complicated and every kid is different, right?
But after we chatted for a few minutes in the Target aisle, and I walked away with my cart and you walked away pushing yours while your little guy banged his feet, well, I thought of a few things I wished I’d said.
Maybe you could pretend I’m your much older sister. Like I told you, my son Jack was diagnosed with autism thirteen years ago.
We were on the cusp of a giant bubble that burst wide open—back when the only experience people had with the spectrum disorder was Dustin Hoffman in a movie called Rainman.
It was before IPads and horse therapy and autism support groups on the Internet.
Nowadays, there’s almost too much out there, you know? With the special diets and all the programs and articles about vaccinations.
It feels like if we make one wrong decision—if we choose horseback riding over art classes, or accidentally buy the wrong pretzels, this tender, vulnerable child will sink instead of swim and never get out of the basement or make a life for himself and it will be all our fault.
It won’t though. That’s the thing.
This is a very long road we’re traveling, and I’m telling you right now, you can’t burn yourself out early worrying about horses.
Please, learn from my mistakes.
In the very beginning, after the doctor looked me straight in the eye and announced our diagnosis like he was announcing the weather, all I saw was autism autism autism.
What I’m trying to say is I no longer saw my son. I saw a collection of symptoms and behaviors and things I needed to work on so he would be whole and good and right.
I wish I could tell you it’s getting better now that he’s a teenager, and it is, but still there are days when I look at Jack and I notice the diagnosis before I notice the boy.
Don’t do this.
You asked me if it gets easier, and I know I didn’t really answer you. I didn’t know what to say. I didn’t want to upset you.
No. It doesn’t exactly get easier.
I mean, some days will feel easy-breezy and he’ll eat what you made for dinner and sleep most of the night and you will think, huh. We’ve got this handled.
And other days he might scream through the whole meal and throw his dish to the floor and sleep for maybe a half hour and you’ll think, huh. I can’t go on like this forever.
Autism is forever. But that doesn’t mean it has to be terrible and consume you completely until you can’t think of anything else and you neglect yourself and your marriage and your other kids.
Can I be blunt for just a moment? I hope you can forgive me, because I’m really not a blunt person, but there are a few things I think are important.
First of all, for the love of all things holy, teach that child to sleep.
That’s right. You heard me. Help him get on the family’s sleep schedule.
You need sleep. He needs sleep. You all need sleep to survive autism and be decent human beings and kiss each other good-bye in the morning and smile at one another across the table at night.
You know the deal. Establish a routine. Have him in his own bed in a dark room. Calmly put him back as many times as it takes.
And if none of that works, there is a wonderful thing called Melatonin in the aisle at Walgreens, and normally I would never suggest medication but this stuff is pretty safe and natural and does wonders.
Second, throw away your timeline. Throw away the timeline of middle school dances and drivers licenses and graduations and college applications. They are meaningless in your new world.
You live on autism’s timeline now. It’s different. It’s slower, and the pace is a little more gentle. And if you bring yourself to succumb to it just a little bit, well, you’ll feel like a thousand pound weight has been lifted from your shoulders.
Oh, and another thing. Don’t be all up in the teacher’s grill.
That sounded so gangster, didn’t it? I’ve waited my whole life to use that line and I think I finally found the perfect opportunity.
Don’t be all up in that teacher’s grill.
But, seriously, I mean it. Let the teacher, the para, the occupational therapist, the speech pathologist, the librarian, the person who serves hot lunch, the playground monitor, and the principal do their jobs.
Their job is not to make you feel better that your child has autism or to hold your hand or to promise you that your kid will get the very newest IPad in the whole school. They have a whole bunch of kids exactly like yours and also exactly not like yours and they need to teach each one.
Their job is to grow his world. It’s to introduce him to concepts and learning skills and sliced pears in a plastic cup. It’s their job to make him wait in line for the slide. Stand back, and let them do it.
Your job is to be his mother.
Be his mother. Trust me, at times that will be hard enough. It will be so hard you won’t believe it. It will be so hard that some days you’ll want to open the door and walk right down the driveway and never come back.
But in the middle of the hardness, please. Do all of the things I didn’t do.
Cup his soft head and feel the way his damp hair curls after his bath.
Hold his squishy cheeks in your hands and gently tilt his beautiful face towards yours. For one moment, don’t worry about eye contact, or the next therapy appointment, or if you should stop using Windex because you read somewhere that cleaning products cause autism.
Simply take in the curve of his face—the way his eyelashes gently sweep and his mouth looks like a butterfly when he smiles.
Sit with him. Take five minutes and sit with him on the floor and watch what he watches. See what he sees.
I didn’t do any of these things. Can you believe it? I didn’t cradle his head in my hands or feel his chubby cheeks or even play with him on the floor. I was too worried about scheduling appointments and researching programs and countless other stupid, meaningless tasks.
Do them for me. And try to remember the two things it took me thirteen years to realize.
He is whole and good and right.
And so are you.