autism boy

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I hear the scuffle from the basement as I am putting laundry away. “No, Cannon! It’s my turn to pick the show!” our four-year-old, Jordi, yells in frustration as his older brother fights him for the remote. I know before I go back upstairs who will win this battle.

“Nooooo!” Jordi continues, frustration now turning into sobs and anger as his big brother refuses to give back the tv remote. I walk in the family room and he begins pleading his case with me in one breath between the sobs. “Mom, Cannon took the remote and it’s not his turn it’s my turn and he just took it and I was watching sumfing!” 

“I know Jo, let’s ask him nicely and with self-control if he will give it back.”

“Nooooo!” Self-control be damned, Jordi takes a swing at Cannon’s back, who yells a little bit but continues trying to navigate the buttons on the remote without acknowledgement of his brother’s feelings. 

Jordi’s cheeks grow redder and redder and his voice more and more upset. He and I both know what will happen if we force the remote back out of Cannon’s hand: aggressive swings and high pitched yells and a little boy who will be unable to calm back down for who knows how long. 

Finally, Jordi finds the sentence, the thing that makes him more upset than just having the channel changed in the middle of his show: “Autism boys don’t get to pick! Only boss boys get to pick. I am the boss boy! Cannon is an autism boy!”

I stand there looking at my boys, one wildly upset and the other seemingly indifferent just two feet away. It is the first time I realize Jordi knows his big brother has autism; the first time I understand that he is well-aware of the differences in his brother, and that those differences feel frustrating and at times, very unfair to a four-year-old mind. 

And it is the first time I realize I need to help Jordi figure out something I am still very unsure how to do every single day. 

“Oh JoJo, come here,” I say as I pull him into our bedroom and onto my lap. We sit there in silence for a few minutes, as I pretend my big four-year-old is more like a baby so he can snuggle up really close. His body isn’t the only thing I am holding; the heavy feeling of his sadness about his brother and mine at not knowing what to tell him next felt like more weight than his body. 

“Hey bud,” I finally break the silence. “Let’s talk about Cannon, and about why you are sad, and how we can help him learn to do better.”

Jordi sniffs a little, then nods his head. 

//

For the last four and a half years, our family has been learning how to live with autism, and for almost all of that time, I have seen the struggle through two sets of eyes: the parents, and my son’s on the spectrum. I’ve sat and held him tightly to keep him from hitting his own head on the wall. I’ve reacted in anger when he slapped me in the face for asking him to put his clothes on. I’ve researched and googled and read books and spent a lot of money on oils and supplements and vitamins and anything that promised the slightest glimmer of hope that tomorrow would be better than today. And of course, I’ve wondered how impossible it must feel for a little boy to be living with a mind that will not form the words he needs to tell me what hurts, why he is sad, what he wants to do, or what happened at school today. It’s been me and my husband, and it’s been Cannon - the three of us living in this little complex word; and because our other children were so young, I have enjoyed a few years of compartmentalizing my parenting into two categories: autism - with it’s stringent therapy schedule and special diet and separate classrooms - and “typical” children - with social rules and manners and reasonable expectations for what the day will bring.

But now, I see there are not two categories. There is just us.

Special needs is a road the whole family has to walk, but the truth is—separating the paths is easier, for my heart and for my hands, than bringing everyone on the same one. But here we are, my husband and I leading the way with a trail of Cannon’s siblings behind us, who are too young to fully understand developmental disabilities, but plenty old enough to know it makes them frustrated. And right now, I have to find the words to tell another little boy what it means for his brother to be an “autism boy”, and after more than four years of searching, I still don’t know the answer.

//

I sat there with Jordi on my lap, still reeling at the injustice of having his tv show taken from him so abruptly, and knowing full well I would never let him do that to someone else. I truly thought when the time came, I would be ready for this moment, this delicate conversation that introduces two opposing truths to the world for my kids: Cannon is a good boy, but autism is a very hard thing. 

Paradox is hard for everyone, but it can be especially disorienting for a child. 

Alas, I’m not ready for the conversation, because on any given day, I deal with that paradox differently as well: sometimes with solid faith in a good God and other times with desperate cries and genuine anger that sovereignty could allow a child to struggle so much. 

“Jo,” I whisper to him as I scratch his back and watch his sad breaths slow to a calmer cadence, “I know this is so hard sometimes, to have a brother who has different rules than you.” 

He nods again, lulled into listening with the magic of a mom’s light touch.

“And bud, I get upset too, but I also know this: Cannon loves you, and he loves jumping on the trampoline with you, and chasing you, and squirting you with the hose!”

“Yeah, Cannon loves that,” Jordi says with the slightest hint of a smile as he pictures the hose and the backyard and the laughter from the day before in his mind. “He likes to put it on my head!”

“I know, he thinks you are the most fun brother ever!”

“Mmm hmm,” Jordi responds, a satisfied smirk settling in on his face.

“So I think, Jordi, in the really hard moments when we don’t understand what Cannon is doing, or why he is doing it, we just have to work really, really hard to remember how much we love each other. Autism makes so many things hard for him that are not hard for me and you. But,” I lean my face in as close to his as I could get and heighten my pitch with a little bit of excitement, “God knew he needed a little brother exactly like you to make him laugh and to play with him, didn’t he? No one will love him better than you will, JoJo.”

Another nod and smile - not one of resolution, there will always be much to be resolved, but one of acceptance.

“We will keep learning together, Jo. And so will Cannon!”

Maybe the only answer to two opposing truths is a third one: we love each other.

And wouldn’t you know, Cannon walks in the bedroom just a moment later, holds out his hand and says, “Heee go, Jordi,” and hands him the tv remote.

“Fanks, Cannon,” Jordi responds, then walks back out to the living room to finish his show.

//

*This essay first appeared on the Coffee + Crumbs Patreon site.
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