Toothpick Wielding Demons

I put a condiment cup full of pills in front of Carter this morning, as I do every morning.

As he does most mornings, Carter shouted at me, “I don’t have any water! You know I only take my pills with water!”

And as always, I pointed to the water glass sitting next to the cup of pills, and as always he groused and complained because I didn’t tell him about the water, or there wasn’t any ice in it, or it wasn’t in his favorite cup, or don’t you know I can’t take my medicine before I put on my shoes?

We go around like this over and over all day: when I turn on the car (if I start the engine too soon he is afraid; if I start it too late, he is impatient); whether or not the “right” socks are clean; what time he arrived at school (8:28 is too late; 8:25 is too early); whether or not we have the yogurt flavor he desires. He punishes me for perceived slights (mostly these involve not moving fast enough, as in, why didn’t I know what he wanted before he asked for it?), small infractions, and things over which I have no control (the weather, traffic). Most of all, he is driven to blind red rage over the word no. On and on it goes, every moment containing possible cause for fury.

I see the pain and condemnation in the eyes of Carter’s siblings: why don’t you try harder? Why don’t you do more to keep him calm? Why don’t you punish him for speaking to you that way?

The non-reaction that bothers our other kids is not something that Brian and I chose in a careful conversation the way we chose, say, Carter’s school. We didn’t formulate a plan.

We just got tired, so we redrew the line at which we would respond. And we redrew the line again. And again. And again. These days, the issue is not the frightening rages of two years ago. He isn’t a danger to himself or anyone else, not in a physical way. There is no emergency, except in Carter’s mind. Where the illness used to be a shotgun blast into the center of our family, now it’s like an army of toothpick-wielding demons, stabbing us repeatedly. Better, to be sure, but not anyone’s dream of a happy family life.

Here’s the sad fact: there are limits to how much we can do to manage Carter’s symptoms.

In a contest between responding to every nasty word and minor tantrum, or learning to let most of it slip by us, we chose to let most of it go. In the midst of an endless stream of punishable behaviors, the sound of our own voices — Carter, that’s unacceptable; go to your room. Carter, I expect you to treat me with respect; go to time out. Carter, you may not speak to your brother that way; you can’t use the computer for the rest of the day. — was nothing so much as more noise. His noise, our noise, so much noise, and none of it accomplishing anything.

So many features of Carter’s illness come together to make discipline, if not impossible, at least profoundly difficult. His extreme impulsivity makes the span of time between urge and action minuscule. His cognitive issues mean that learning something new (like responding calmly to perceived injustices) takes an astronomical amount of repetition to solidify. Paranoia makes him believe that even the people who love him the most in the world might try to hurt him on purpose. Anxiety leaves him feeling like every problem is a crisis. If he is psychotic, delusions and hallucinations make his outbursts even more irrational.

This is a hard thing, this accepting of Carter’s behavior. I know that anxiety is at the bottom of these behaviors, but what we see on the surface is just so much nastiness and anger. It’s hard to feel sympathy for a person (even a small person) who is acting in such a hateful manner.

Like Spencer said when Carter was a baby who cried all day and much of the night, “It’s a good thing we love Carter or else we’d be banging him on the floor.”

I hate that. Not as much as I hate that my little boy is living in the emotional equivalent of a pinball machine, but I hate it nevertheless. For all of us.

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16 thoughts on “Toothpick Wielding Demons”

  1. I asked Alex about this a while back. Alex is my oldest. I asked him if he thought we were unfair, harder on him than on Tim. He said, amazingly, no. Even he got to the point where it was easier to just let Tim be defiant and pitch a mini-fit, if it kept him from breaking doors, hitting people, throwing things, or threatening someone’s life. It was just the best choice for that situation. Of course, he’s an adult now, and has some perspective. 🙂

  2. I’m so sorry for your frustration.

    I know even I have complained to my mom that her discipline is way less with my younger siblings than it was with me and we have a more typical situation. I hope, like me, your older kids get more perspective as they get older.

    You’re doing the best you can and that’s all you can be expected to do.

  3. Thank you for sharing your struggles so eloquently. This world of disability that we live in is overwhelmingly difficult, and I firmly believe that we do what we have to do. I admire your strength and hope for more ease in your family.

  4. Oh, Adrienne, I so see where you are. My heart just aches for you, for Carter, for all of you. We have a different constellation of issues in my house, but I know, I know.

    Yesterday, tired out after hours of afterschool basketball on a hot day, after his first full week of 4th grade w/ lots of homework, with his new ADD medication wearing off, Ethan was not in any state to tolerate his autistic brother’s constant talking and noise making. There were explosions and bad words. I sent Ethan to his room, but then I had to follow and hold him while he carried on, sobbing and screaming about how horrible his life is and how his brother should never have been born. Little knife stabs to my heart, each word.

    You do what you have to do. You are an amazing mother, finding a way to navigate through an impossible situation with as minimal collateral damage as possible.

    Love to you, always.

  5. Oh, I know it too well. The funny thing is, Kieran doesn’t mind at all that the discipline is different or that expectations are different, she just accepts it. Maybe because she is the youngest and she just acknowledges that this is the way it is. Her anger with the unfairness of it all is that she is supposed to have two “big” sisters, and yet she feels like she has to take part in parenting them, something we try to explain often that this is not something for which she needs to bear responsibility. But the nonstop battles, they just wear and wear and wear – I well know that feeling. I wish I had something uplifting and non-cliched to say here, but know that you are in my thoughts.

  6. That is a difficult position to be in. You have not given up. You just realize that he is. Someday maybe your other children will be able to fully understand that it was not a lack of trying on your part, it was a lack of actions derived the result of complete understanding. Hugs.

  7. That is a difficult position to be in. You have not given up. You just realize that he is. Someday maybe your other children will be able to fully understand that it was not a lack of trying on your part, it was a lack of actions derived from the result of complete understanding. Hugs.

  8. Its a survival mechanism…you have to choose what you’re going to respond to or you’ll spend every second of your life trying to talk sense to someone who sadly isn’t capable of absorbing what you say. But to the rest of the world, you’re “giving in.” Its so patently unfair, all of it.

    Hugs to you. I love how you can address the beauty and the ugliness of mental illness.

  9. Wow great post! I dealt with these feeling last weekend when my boy attacked one of his brothers. I was experiencing such a strong mix of feelings. On one end I was feeling such love for him because I had just got up from a dream where all my kids had died (those awful dreams), so I was cherishing every moment of their being when I was getting ready for church. Then when my son attacked his brothers I was feeling strong hate. To feel such a mix of emotions over your child and their behavior to say the least is disturbing. So off to church I went where I just cried during the whole service. Being a mom is so much harder than I could ever imagine.

  10. Oh I wish I could ignore more than I am able to do. That’s something I really need to work on. Life here is such an emotional roller coaster but I feel like I am stuck on the ride even though I really want off. My younger one says her sister gets all the attention and then copies the behavior and acts out too. I’m just looking for a little bit of light at the end of the tunnel. Thanks for sharing again, it really helps.

  11. As you know, teenagers are almost completely self-centered. Even the ones who appear not to be. It’s a psychological fact that it’s hard for teens to see things beyond how they affect them. The world revolves around their feelings–much like a toddler.

    But the best thing? Most teenagers–with the right guidance–grow out of that and learn to see things in a different light. As they get older they realize your motivations.

    They will know.

    Spencer was wise when he said what he said about it’s a good thing you love Carter. And he will understand that again some day.

    That being said? I love the way your writing takes me into your life and family and makes me wish I was physically there. Even in the hard times. Because that is when I feel I SHOULD be there most.

    Love to you friend.

  12. I know so very well what you mean.

    We were interviewed for a piece on pediatric bipolar disorder recently, and the interviewer asked what some of the sacrifices have been that we’ve made to try and accommodate our oldest child. One of them was “caring what other people think / how they stare and judge” because when we’re trying to keep the entire family on an even keel, a stranger’s completely uninformed opinion has no relevance. Still hard to do, though.

    I fully understand “survival mode” – if watching TV for 8 hours keeps him from antagonizing his siblings all day, so be it.

    And the (tongue-in-cheek) line in our house is “It’s a good thing God sent him to us because any other family would have killed him by now.”

    As far as the other kids in the house go, I try to trust that having him as their brother is helping to shape them into the compassionate adults they will be. And anyway, they get to grow up and move out. 🙂


  13. My son and I have experienced several episodes similar to what you describe (except there were also mild hallucinations), when my son was not his usual self. Each episode lasted a few days and occured about once a year from the ages of 13 to 15. The catalyst seemed to be overwhelming anxiety and/or medication mex-ups. Each time those days-and-nights spun us into an extremely frightening and debilitating nightmare. I was profoundly scared. Several years later, I still am deeply concerned that the behavior will return and I constantly pray that is does not happen again.
    Your writing is an exquite help, providing loving insight into the morass of a troubled mind. Each word shows that love can illuminate and offer hope that life can be intermittently and sufficiently good to sustain us during dark hours. (Sorry to be dramatic; much of what you write brings me to tears).
    My experience tells me that you are handling these concerns in the best possible way.
    Thank you. Always,
    love, Stephanie

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