It was great to see you at the wedding last week. It was such a lovely day, wasn’t it?
I wanted to take a minute and apologize if I came across as a little abrupt. I know you were just trying to help with my son, Jack. I know you were trying to be nice.
You kept telling me not to worry, that it was just fine if he wanted to touch all the champagne glasses, and no big deal when he snatched your cell phone off the table and tried to download a song from ITunes with your password.
I wasn’t worried. I always know what to do when it comes to my 13-year old son and his autism.
Well, okay, not exactly.
I mean, I don’t know what to do when he picks at his scalp until it bleeds.
I don’t know what to do when he asks me on Christmas morning fifty million times what we’re going to eat for dinner on the fourth of July.
I don’t know what to do when he sits down next to me on the couch and tells me that sometimes he is very worried about suicide—he is worried he will take a knife and put it into his body and then he will be dead even though he does not want to be dead.
I know, it had been a long day for him already; the ceremony in the church and the drive to the reception and the itchy shirt he had to wear. I knew he would be rascally by the time we got to dinner.
We did lots of things to prepare him. We packed headphones for the car ride, we did jumping jacks in the parking lot. We told him how long the church part would be and how long the drive to the reception was and what he would have to eat.
See, routine, structure, and planning–lots and lots of planning–are the ingredients to a successful day with my Jack-a-boo.
And when that fails, I have to parent him. I have to redirect him, and tell him no. I have to help him regulate his body so he can stay calm. This is my only hope for slowing the tide of autism’s constantly impending chaos.
In other words, once he gets going it’s hard to stop him.
In other words, once he picks up your cell phone and realizes he can get away with it, he will walk to all the other tables in the banquet hall to pick up everyone’s phones. He will beg for the password. He will type his name into the list of contacts.
I mean, do you know how long it took us to get him to eat with a fork?
Forever. That’s exactly how long it took us to teach him not to touch his food with his fingers.
See, it’s not like it is with a regular kid. With a regular kid, you can say, listen, I know Aunt Margaret said it was fine for you to roll your food in your hands at the wedding yesterday but we’re not going to do that anymore, so pick up your fork and eat like a human.
With Jack, it’s different. If someone says loud enough for him to hear that it’s no big deal, he can squish the meatball between his hands before he eats it, well, the next day we have to start all over again.
That’s autism for you. It takes three thousand four hundred and ninety-one tries to get him to do something, and one moment can turn it all backwards on us.
Please, don’t turn it backwards.
Maybe I’m making it sound like autism is some wild, screeching animal that we have to cage up and silence. That’s not it.
But it’s also not a cute puppy we should dance around on a leash and tickle while it pees on the carpet and jumps on the furniture.
I don’t know what it is. A jaguar—sleek and smart and stealth?
Or a fish, swimming up to the surface to look at the blue horizon?
Autism, well, it speaks a listener’s language. It speaks to those who are willing to hear–really hear–to put their ear to the ground and interpret the softly spoken whisper.
Please, let me be his mother.
Maybe it seemed mean the way I brought him out to the hallway so he could calm down a little bit. Maybe it made you kind of uncomfortable.
Don’t be. Think of it this way: if he had diabetes and I had to bring him somewhere quiet so I could check his blood sugar and give him his insulin, you wouldn’t bat an eyelash.
Autism is a condition of the mind. It is a neurological disorder that affects the way he talks, eats, sleeps, and acts. Jumping jacks in a quiet hallway are like insulin to his nervous system. It is something he needs.
I know you love him. I do, too.
I know you want him to be happy. I do, too.
It’s not enough, though. It’s not enough for me to love him and keep him happy, because every day, I am running a race with no finish line. There is an invisible clock that ticks in my ear and I have to always be watching him, waiting for him, prompting him.
Some days, I am so tired of it all—the jumping jacks and the social stories and sliding his fork into his hand during dinner—that I don’t think I can do it for one more single second.
But then I think of all the things autism has stolen from me—my son’s easy smile, a spontaneous first word, countless hours of sleep. I cannot let it steal from him, too. I must keep the thief at bay so this boy of mine may enjoy unexpected moments of his own.
Please, let me be the mother. It is the most important, scary, unusual job I have ever done.
The road to progress can be long, and bumpy, and uncomfortable. But if you love him like you say you do—if you care about him even the littlest bit, then you will understand. You will sit back, and let us run our own race.
A fish. I think he’s a fish.