I feel as though I have failed my child

I’m splitting this tiny hospital bed with my son, my right leg planted on the floor and my left trying to find a spot that doesn’t get tangled up in my son. 

He’s lying next to me but his body isn’t at rest. He’s watching me, waiting to see if I happen to move in a way that alerts him that I may be leaving the bed. 

Most times, I am not but this doesn’t matter. Only appearances do. So, it’s important to ensure that my movements are minimal and if necessary, they are slight. 

I’m exhausted and so is he. He’s trying to keep himself awake. Taps to his head. Clicks of his tongue. The rise and fall of his feet. The low grunts. 

All in an effort to stave off sleep. 

He doesn’t like it here in the hospital. 

Not many people do.

He is not “many people.” 

His dislike manifests in ways that often make hospitals want to keep him longer but also in a way that makes them want to rid themselves of him quicker. 

They can’t tell you that though. 

But I am wise enough to decipher the patterns of my circumstances. 

I know my histories. 

I am well versed in my contexts.

I am capable of discerning the nuances of my experiences. 

And yes, I do want to leave. Because I don’t feel that my son will be helped here. I don’t feel our family will either. 

Because when you have a nonspeaking Autistic child, it’s often a guessing game trying to figure out what’s wrong and the hospitals aren’t willing to play. 

As a parent, you’re afraid you’re getting it wrong and you always feel like they want you to choose one specific thing to address. You can’t feel like it’s his head AND his stomach. You can’t be like “it might be this or this…oh! or maybe it’s both.” 

Hospitalizations bring forth so much. 

The emotion of it all. 

The reflection it gives. 

The wave of reality that comes crashing in. 

To watch your son in a hospital gown, needles poking into his skin, machines beeping all around and wide eyes staring back at you with short deep breaths as he tries to beat the medications pushed through his veins. 

It’s a lot. 

I sit with all that may have brought us here. To this hospital, in this small bed together. Not just the symptoms he displays at the present moment but all things in all ways that paved the path here. 

What did I miss? What could I not see? Did I work hard enough with his communication this time round?

I feel as though I fail my child often. I really do. 

I can help so many people and their children, so many different organizations, and schools, etc. but I can’t help him. 

With him, for him, I am lost. 

I know him the best, and I am the most lost. 

There is something medically wrong with my son. This I felt in my bones. And I was right. 

But I also know that his care, his communicating his needs are greatly impacted by how his autism presents. 

We found something medically wrong, is there more? Was this the right thing that bothers him currently or is it something else? The behaviors he exhibits, are they because he cannot articulate his needs, a telling of pain and frustration, or both? 

I’m always reflecting on my advocacy. I am always observing the things I see and opening my ears to the stories I hear about other experiences. I compare their access with ours. I compare their situations to ours. I note their circumstances, I evaluate mine. 

I am bothered by my own advocacy at times because I don’t ever want to erase the challenges that our family faces. I don’t ever want my son glossed over. I don’t ever want our grievances to be looked at as obstacles to the “greater cause.” 

And the autism community in general does a horrible job when representing those with higher support needs and their families. 

I addressed this so much in the past and recently, I don’t like the result of my self evaluation when it came to this particular area. Don’t get me wrong, I still talk my shit. But somewhere along the line, I lost my fire here. And I know many will feel like nothing has changed or I am still doing well, but I know what makes me FEEL. I know when I put work out there that I truly feel did something that stirred my spirit in such a way that it brought forth great joy and excitement for tomorrow. Cause I looked forward to seeing what my work would do. It felt meaningful and profound. 

I still do meaningful work, but I’m not satisfied, cause I veered off course. 

This piece is a placeholder noting the moment I make yet another shift. 

My son will have brighter days. I don’t know when they will come. I don’t know what they will look like. I don’t know if I will be part of the reason he smiles again. 

I just know they will come.