Finding Our Way in the Darkness


Two nights ago my daughter was sobbing uncontrollably on the hallway floor. The reason? She had removed a strainer from the cupboard and wanted it in the toilet. I had taken it out.

But that wasn’t the reason, really.

First of all, I have no idea how she even knew it was in the cupboard. She hadn’t seen it used in the toilet, so I am not sure how she decided it belonged there. And although I am 100% positive that my removing it was the source of her great distress—I may never know why it distressed her. Because in spite of the leaps and bounds she has made in communication, conversation is still not an option for us.

Other parents will reassure me by letting me know their children are unable to express what’s really going on inside their heads, too. I imagine children who have regular conversations with their parents do sometimes fall to the ground in fits of rage over something they can never quite put into words. And then I think, maybe this is one of those times and we are just like everybody else.

How can I explain the difference to someone who hasn’t experienced the ways missing conversation can truly keep you in the dark? It’s easy to throw up my hands and say “who knows” while I wait for her to calm down about an insignificant strainer. I strongly doubt it will affect her long-term. This one is easy. And really, it is more than slightly easier than the tantrums over something put in the wrong place, or because the neighbors didn’t park their car in exactly the same spot today. The good news is that it will pass, and she will survive. Maybe I don’t even need to know the details.

What isn’t as easy is when I do need more information and I know there is no way to get it. Like when she comes home from school crying, or comes down with an illness. I have no way of understanding what might be going on. I could ask questions all night long and never get closer to the truth. She would only go back and forth between completely ignoring my inquiries, and repeating the last word I said back to me. 

She has regular episodes of sobbing and screaming that appear out of nowhere. This is very different, and far more intense than the type of disappointment she displays after denying her use of the strainer or refusing to ask a neighbor to move their vehicle “just a few more feet forward.”

She will be happy one moment, and then I see a familiar look flash across her face. Something suddenly overcomes her, and she is so used to it that she will immediately hand me whatever she is playing with and dive under her blanket. If she can, she will go into her room and shut the door. She does not want our help, and if we approach her she will say “okay” until we leave. And then, after a few minutes of crying, screaming, and kicking the walls– she snaps out of it and goes back to what she was doing.

This interpretation of events comes from experience. To an outsider, it just looks like a kid throwing a temper tantrum. Most parents would call it a meltdown. The specific pattern of how these “meltdowns” unfold is so similar to the pattern my husband’s seizures follow, that when I first realized it I asked him what he thought. He said when he was a child his seizures did not begin as seizures. They were something he called “feeling sad.” The feeling would overwhelm him and it was the only way he knew to describe it at the time. His parents would recognize a change in him and ask, “Are you having the sad feeling?” Eventually the feeling turned into actual seizures.

He never kicked out his bedroom windows, though.

This does not give me any reason to be concerned about epilepsy, but it does make me believe something is happening in her brain that she cannot possibly control. It begins and ends just like one of my husband’s seizures. It may seem obvious from the way I explain it, but it did not appear obvious for a very long time. Originally we believed she was reacting to something she did not like in her environment. It appeared as a behavior issue, and we acted accordingly.

But she has known better for a long time. How often was she scolded for breaking something before she figured out to hand things to us when the feeling struck? This is how every phone and tablet screen ever broke—she got “angry” and bit it at the beginning of one of these episodes. Now she hands it to us and bites her blanket instead. She recognizes the feeling and takes cover. It would all make so much more sense to me if only she could explain what happens and what she feels like. It looks as if she is being tortured. Is she in pain? Is she just overwhelmed with emotion?

I have no idea.

And we wasted too much time reacting incorrectly. Everything is a long investigation. She is now quick with matching keywords to familiar activities, and we can easily instruct her on basic tasks. Her vocabulary is constantly improving, and she has no trouble grouping words together to make specific requests. It wasn’t long ago that we were pulling our hair out because we had no idea what she wanted to eat or to do. I will never stop being thankful those days are over.

But discussing feelings is a whole new level of communication that we are nowhere near. We take for granted how easily we developed the ability to tell our parents when we felt sick, sad, or disappointed; but even as adults some of us are unable to express anything deeper. Even if we can get to the point where she can tell us where something hurts, or how something made her feel—we will be wading through this level for a lifetime. Because we all do. But for her it is always going to be harder.

I would be happy just to know what happened during her day. Was it good or bad? Why? I have no access to that part of her. I only know when she likes someone because she will go up to them and hold their hand or sit on their lap. Occasionally she does it to strangers. If she didn’t trust someone, would I know? And would it be for a good reason—or will I judge someone based on my daughter’s reaction the same why I don’t trust someone after a dog growls at them?

(I’m not saying it’s an incorrect way to measure, of course.)

I do my best to separate what’s typical and what is not. I try to pay attention. Sometimes it’s enough, and sometimes it isn’t. Sometimes I am optimistic, and other times remaining in the dark feels too unfair. Every day is a new adventure.

Communication. The never-ending struggle.

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