There's So Much That I Do Not Understand

A journey through grief

There’s so much that I do not understand.

When we first brought Jacob into our lives, I had a very unhealthy imagination in regard to what it meant to parent a neurodivergent child… and particularly this child who lives with severe autism and a variety of neurological challenges that stem from early childhood abuse and neglect. (Well before we ever met him)

I had it in my head that there was some miraculous way that we were going to “help” Jacob “escape.” I even sat down on his bed with him one day when he was seven or eight, looked deep into his eyes and said some bullshit like: “I know you’re in there… and we are going to do everything in our power to help you break free.”

Like I had the ability to lead my autistic child in some inner mind jail break that would free him to live a life more… more what? Normal? (I hate that word!) No, I wasn’t headed there. I just thought, at the time, that there was something hindering Jacob’s day-to-day living that could be lifted from his young life to allow him to live more free.

How could I have been so dumb?

Over the years as Peter and I grew into our parenting role with our boys, we also grew in our knowledge around the various diagnosis that follow our boys from room to room and out into the world.

Jacob’s “neurological challenges” diagnosis is probably the most difficult to navigate. There’s nothing concrete about it. And the line between that and autism is so very gray. Most days I don’t even consider them as separate. They are two realities of his life that he will never escape… nor does he need to.

As much as I have grown to better understand Jacob over the years… as much as I have equipped myself with knowledge shared from a variety of experts and other sources… as much as I have done… there’s still so much that I do not understand.

I don’t understand what causes his sterotypies… the involuntary, repetitive, rhythmic and purposeless movements he makes.

I don’t understand what causes his mood to change as quickly as I can snap my fingers. One second he’s laughing that incredible laugh. The next minute he’s trying to dig his fingernails… or teeth… into my skin, or clearing everything off the kitchen counter onto the floor.

I don’t understand what causes him to force his body to vomit once he goes to bed. Is it sensory? Is it attention seeking? If that’s the case… well-played, you got what you were seeking.

I don’t understand what causes him to beat his chest, his stomach, his hips so hard that I have to keep checking to make sure he’s not truly injuring himself. (And not leaving marks… “honestly, Ms. Social Worker… he did it to himself.”)

I don’t understand what causes him to be so fixated on pulling the stitching out of his clothing.

I don’t understand what causes him to roam the house in the middle of the night.

I don’t understand what causes him to jump up and down on his bed.

I don’t understand what causes him to not respond to the recent medication changes… or the previous one… or the one(s) before that.

I don’t understand what causes him to walk repeated laps through our living room, hallway, kitchen, and dining room… head leaning just a bit to the left and his eyes and mind zoned out elsewhere.

I don’t understand what causes him to tap each piece of furniture he passes.

I don’t understand so much about him.

What I do understand is that I love him.

I understand that he will never live independently.

I understand that he will have to transition to some sort of living situation where I can only hope and pray that the staff working with him are patient… and understanding.

I understand that it is going to rip my heart out when that decision is made.

I understand that a transition like that may have to come sooner rather than later.

I understand that I cannot care for him forever.

And I understand that I cannot live in fear.

And I understand that Jacob is doing his damndest at trying to be the best Jacob he can be.

And I understand how much it means to me to be able to be part of the life he is living.

I also understand that I am now rambling. I guess that’s what occurs when we have a night like we’ve had tonight. It’s good to get some words out, clear my mind, breathe a few breaths… so I can get some rest and then wake up to do it all again tomorrow.

This shit’s hard, ya’ll! At times I think I’m going to break. Tonight, I thought I was going to break. Maybe I did… a little.

And then I remember how much I love him, how much it means to me to be his Papa, how much it means to me to be able to provide for him, to protect him, to encourage him, to love him.

And then I remember how much easier this was when Peter was alive.

Tomorrow’s a new day!

Maybe I’ll understand a bit more then.