I tend to be fairly slow on the technological uptake, so it took me a while to understand what hashtags meant. At first I thought it had something to do with search engines. Then whenever I read a hashtag, I thought of hash brown, and I got hungry.
Eventually I figured out that they are the subtext of the conversation; the implied meaning or opinion.
Last week, on the first day of summer vacation, our 6-year old Henry broke his leg riding his scooter down the driveway.
I’m not sure I can adequately capture the level of chaos immediately following his fall, but I will try. Let me start by saying our family is not very good in emergencies. We do not band together efficiently, or even coherently, to care for the injured party.
Instead, we shout over one another. We hold our heads in our hands and gnash our teeth. We race around like crazy people for ice and band-aids and tissues.
Generally speaking, it’s bedlam, and this time was no exception.
Let me also say that, except for my husband Joe, my son Jack is pretty much the last person I want around me in a crises. He is distracting. He is a nuisance. He is like a fly buzzing around your head while you’re trying to put out a forest fire, mostly because of his a tendency to fixate on the least useful—the least helpful—aspect of the matter at hand.
This time, it was brownies.
Henry: [perched on the counter, clutching his leg, screaming, crying, wailing]
Joe: Carrie, he needs to walk on it.
Jack: We need to make brownies. You said. For brownies.
Me: He’s screaming, he can’t walk on it. Maybe we should take him to Urgent Care.
Jack: Brownies, brownies, brownies.
Henry: [shrieking as if someone was amputating his leg.]
Our other three children: Is Henry dying what happened where is his sneaker are we still getting pizza Henry does it hurt why don’t you take him to the hospital he’ll probably never walk again.
Joe: I think we should take him to the ER.
Me: What about Urgent Care? They take X-Rays there.
Joe: No they don’t. Stop talking about urgent care! Will you stop bringing it up? I think we should go to the ER.
In moments like this I realize how, in our house, we live autism out loud. It isn’t a secret. It isn’t a subtext, or even a hashtag.
Jack’s three brothers and one sister all know he is diagnosed with autism, and with the exception of our oldest son Joey, our kids have lived with the spectrum disorder all their lives.
Autism is their background noise: it is the steady hum of Mozart and Alicia Keys, and most recently, the Beatles. It is the tympani of baking pans and tantrums and stimming.
I can’t say we ever really had a game plan for when or how to tell them about it. We sort of waited for them to bring it up, and then we had “The Talk.”
You know, the Your Brother Has Autism and That’s Why He Screams/Jumps/Hardly Sleeps and Can Remember that Daddy’s Birthday Fell on a Tuesday in 2004 talk.
Also known as the Your Brother Has Autism and That’s Why He Just Asked the Cashier How Many Teeth She Has talk.
Or the Your Brother Has Autism So Please Do Not Touch the Radio One More Time Because He Will Scream talk.
Although each conversation took place at a different time and place, all four of the kids asked the same questions.
Where did he get it?
Will he always have it?
Can he die from it?
Will he get married?
Can he have kids?
We answered them honestly and carefully, and gave them as much information as we ourselves have; yes, Jack will always have autism. No, he won’t die from it, and we don’t know if he’ll get married or have kids. We explained he was born with it—that an unusual twist of genetic fate brought us a baby boy who thinks in color.
If Joe was out of the room I told them that he got it from Daddy’s side of the family.
By living his diagnosis out loud, I guess I hoped they would learn to appreciate autism’s many sides and angles; like a brilliant diamond, their brother’s spectrum disorder has thousands of tiny facets and surfaces. Yes, it can be sharp, and acerbic, and his screams can cut glass.
But it can also be funny and colorful and interesting and bright. It can be shiny.
Practically speaking, this means we refer to it a lot, both to Jack and to the rest of our kids. We say things like, “Jack, your autism is making your brain want to listen to Yellow Submarine three-thousand four hundred and twenty times. Play a different song.”
Or, “Joey, can you grab the headphones? Jack needs them for the fireworks again this year, because his autism makes his ears so sensitive.”
Looking back on all of the times we’ve talked about it as a family, I realized there’s been an unspoken undercurrent after all. There has been a hashtag.
I’ve never asked them how it feels to have a brother with autism. We never asked them what they think of it, or how it feels for them, or if they’d change it.
I have no idea what it’s like to grow up alongside of Jack, what it’s like to have him scream about baking brownies when your leg is broken, or sit next to him during dinner when he rolls his piece of pizza around in his hand before he eats it.
What’s it like to have a brother who wakes you up at 5:30 on your birthday because he’s too excited to wait another minute?
How does it feel to see your older brother walk through the hallways at school accompanied by an aide, or scream during fire drills, or sit all alone on the school bus every day?
I decided to ask, and this is what they told me.
I have mixed emotions about it. Sometimes it feels like you have different rules for him, like when you make us turn off the computer and go outside but he gets to stay inside and play his music.
I worry about him. I think he could get married but I can’t really imagine him ever being a father. You know? It’s hard to picture him as a father.
He is so smart, and I’m proud of him. I know it isn’t always easy to be him, to have his autism.
Jack and I don’t really the same things, so we don’t play together too much. He doesn’t like badminton or football, but he likes to sit next to us when we play chess. He likes his music.
It’s getting scarier when he gets upset. He’s getting louder and I’m not sure what he’s going to do next.
I think he’s the smartest one in our family, because he can remember so much.
When I hear him jumping around downstairs in the morning, that’s how I know it’s time to get up. He’s like my alarm clock.
He gets mad sometimes. You know? Like if the radio isn’t on right or he doesn’t like a certain restaurant.
But you have to just be gentle with him. Use gentle words. In the morning when we eat breakfast together and I see he’s using his fingers for his cereal, I just put the spoon in his hand to remind him. He’s the smartest person I know, because he remembers every single thing.
Whaddya mean, how do I think about autism? Autism is my brother. It’s Jack. He’s very smart. He knows everyone’s birthdays and when gum was made.
Throughout the week, bits and pieces of my conversations with them floated in and out of my mind. I thought about how, with words and worry and broken crayons and sharpened pencils, they sketched a vivid, brilliant picture of the diamond that is their brother Jack.
Like a painting that’s been hanging on the wall forever, I thought I knew almost everything about Jack’s spectrum disorder. But I looked at the picture again with my children, and saw autism’s details through fresh, young eyes. I saw deep jewel tones and sunny pastels. I saw parallel play and regulation and behavior modification. I saw their concern, and their hope, and most of all, their admiration.
He is so smart.
He’s the smartest one in our family.
He’s the smartest person I know.
He’s very smart.
However, it was Jack himself who added the final, colorful brush stroke to his own landscape. He reminded us that even in the heart of chaos, he too has something to give.
“I wanted to make brownies. For Henry to feel more better.”