My aim in writing is to present the often-overlooked positive side of families like mine. I want those reading to know that raising a non-verbal child with autism, or any special needs, isn’t the end of the world. It’s something that, for a loving parent, becomes the norm. My daily routine is fairly routine, at least from my own perspective.
People also need to know the beautiful qualities my son has because of, not despite, autism. He’s loving. He’s sweet. He’s kind. He’s innocent. He’s all the best things a boy could be in his heart and soul. I write posts about those aspects of his personality all the time.
This isn’t that. This one is about something else.
Just because I don’t often speak about the difficulties that come with some aspects of special needs parenting doesn’t mean they don’t exist. The hard moments, almost exclusively, are made harder by my own doing. Sure, the situations can be strenuous, but it’s me who breaks down piece by piece. My brain, my heart, and my achy breaky body all conspire against me.
I’ve had mornings that many caregivers in my position can relate to. For whatever reason, his room is trashed. He could be upset or happy. It doesn’t matter which, as either case could lead to a destroyed sleeping area. The trash itself is also a constant surprise. Items, all along the awfulness spectrum from toys to terrible, are strewn about. Pillows are missing. Objects litter the hallway. He’s naked. It’s four in the morning.
And there I am. I went to bed three hours ago.
My back hurts. My back always hurts. I exercise every day and my back still hurts. It makes me wonder how horrendous the entire scene would be if I was just middle-aging along from a docile existence. With a kid like mine, that isn’t a possible option. Even if I didn’t have that heart surgery, I’d still have to keep in shape. This boy is massive. He’d rule the house otherwise.
He’s eleven and one of the two most incredible things I ever brought to this Earth. I live for him and his sister. That said, he’s gigantic. Even at his young age, he’s built like a mutated Thanksgiving Turkey with hair. Maneuvering him around is a struggle. My body knows this very well.
Of course, it’s not my body that gives me the most trouble during these sunrise nightmares. It’s my brain. As I kneel down and help him maneuver into a pair of pants, I hear that voice in my head. Sometimes it sounds like people who have left my life. These mornings, though, it always sounds like me.
How long are you going to do this? You’re going to have to dress a grown man one day. Like soon. Then you’ll die and who’s going to do it then? This is awful. You pretend it’s not, but it is. Write about that.
And that messes me up.
The reason why is that I know that statement is only half true. Moments like this and long-term concerns that haunt the halls of my brain are awful, but they are real. They are statements that, while often assuming the direst outcomes imaginable will come to fruition, have the potential to come true.
They also have the potential not to come true. Huh? Right? Everything could be just fine. Hooray. That’s the positive response to a dark thought like that. People like that. I should write that. Put it on a shirt and sell it.
OK, that’s great. But, let’s face that fear head-on, rather than silver-lining it away. What if those chilling possibilities do come true? What if there is no miracle change or sudden burst of understanding? What if everything I fear and the darkest future comes to pass? What then, huh?
I don’t know. Nothin’? Just keep going?
Life has thrown me many worst-case scenarios. The final curtain has closed on my play countless times. Yet, every single finale has been followed by a sequel. If the worst is yet to come, let it come. All I have control over is this moment right now.
Time stands still on these miserable mornings and, just as I finish restoring his room to something resembling a room, I feel my phone vibrate. My hands are full of horrible things, so I ignore it and lead him to the stairs. The only thing he’s carrying is his iPad. I’m holding the entire contents of the world.
Rushing to get downstairs quickly, I know that even just a few minutes could be hell. Some mornings he runs straight for the kitchen to eat anything he can see. Donuts, bread, leftovers, scraps – you name it. If he’s hungry and impatient, he’ll eat whatever looks like food. This morning, I made it in time. Other times, I’m not so lucky .
From there, I finalize lunches, take my pills, make some coffee, and feed him breakfast. The sun isn’t even up yet.
Then I look at my phone. Know what that notification from earlier was?
I don’t know. Whatever. Some nonsense.
Whatever it is and whoever it is almost definitely someone who didn’t deal with a morning like mine. This email, text, or message is usually coming to me for something. Are you kidding me, Kohls Charge Card? You’re coming to me for money on a morning like this?
The unsympathetic nerve of some companies. My brain hops to everyone who has done me wrong in the last few weeks, months, and years. Why don’t they have mornings like this? They deserve mornings like this. There should be some sort of time-sharing thing to give everyone a fresh perspective. I’d keep a list of people who deserve it, but from what I see on True Crime shows, listing potential people to do a thing to is frowned upon.
Then my son comes over and gives me a huge hug for no reason. And I feel bad.
Then he asks me for a second breakfast with his communication device. I say no. He has a full-scale meltdown. I don’t feel bad anymore.
If you have mornings like this, I feel you. I have them too. Many parents in our boat do. What boat is that? It’s the one my kid spilled orange juice in, broke the sail off, and lost one of his shoes on somewhere.
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