Mornings that turn into days

Rosie's on trileptal, a dual purpose anti-seizure and mood-stabilizing drug. It's worked better than anything else. She was on depakote for a long time - the only epilepsy drug that worked given that she didn't actually have epilepsy. And depakote is also an anti-seizure/mood-stabilizing drug.

She's had ups and downs over the past year, well swings actually, some more extreme than others, but lately, she's in a pit, the pit of despair. Yesterday, she woke up and was instantly set against going to school. Some days I know that I can push her- that I can make her go with the right bribes or calm negotiation. But there are days, and yesterday was one of them that I know that she was too fragile. Too fragile to handle the academic and social relationships of school. Her tears were real. Her fragility was palpable. And she screamed, "I just feel so much pressure, mom. You don't understand how much pressure I feel. "

When I tried to get at the source of the pressure she would just scream again, "I feel so much pressure - you don't understand. The pressure builds and builds and builds in my head and it feels like I'm going to explode. I want to die. I want to kill myself because I don't want to feel this pressure anymore. Don't you understand?"

We talked for a long time after that. She let me hold her and she cried. And I told her about my own depression and how sometimes I don't feel good about the world either. She spent the day on the couch watching TV and working on Legos and doing some homework. She had a low-grade fever all day. She always has a low-grade fever on days when she stays home from school. We talked to the psychiatrists, we've done blood tests, and no one knows why she doesn't feel good on her medicine. They think it's just some strange side effect, not toxic, but still affecting her in a way that makes her feel awful.

It's the second time in as many weeks that she's talked about killing herself. So, I called the doctor again and told her about the pressure that Rosie feels. I told the psychiatrist that she wants to kill herself and that she feels hopeless and more depressed than she has in the past few months.

So, last night we went to the drugstore and picked up Abilify, another atypical anti psychotic drug for her to try. She tried risperidone and had extrapyramidal symptoms, so we had to stop. She tried seroquel for two weeks, but she stopped eating completely, so she had to stop.  Today, she felt wormy (her words) and restless and her feet hurt. After only one dose of the new medication she's already starting to feel badly.

I thought that maybe it was just Monday, that she needed a slow start to the week. But now it seems, as I look to Wednesday morning, that she probably won't go for the rest of the week. This makes everything pretty difficult for the family. I can't teach my classes. It's hard to figure out Harper's schedule- when I can her pick her up and take her to all of her activities.  Every new medication means every day is different and it is utterly, inexorably exhausting. And my girl is only seven. There will be many days ahead and I'm not quite sure where that energy's gonna come from.

Our Protective Bubble

Two days ago, my mom was visiting and Chris made pizza.  Unfortunately, it was not to Rosie's specifications and she screamed at us.  "You never ask me what I want for dinner? You ask everyone else but never me.  You all hate me, you hate me and you don't even care about me. I just want to die." And then she ran out the front door, slammed it and was gone.  We thought we'd give her a moment to cool off, but then the red-headed little boy neighbor came over and told us that Rosie had just had a fight with his mom.  Apparently, Rosie had slammed our door, then immediately marched over to our neighbors, with whom we are friends, and demanded that they feed her.  You see, their dinner was more appealing.  When our neighbor kindly said that she only had enough for them, Rosie started screaming at her.  Replay previous screaming conversation. Then she ran off.

After we got the news that our girl was loose and guano in the neighborhood, I set off in my sweatpants (I thought I was in for the night), to try to deescalate.  Deescalation is all you can with a kid who has a mood disorder.  You can't yell, can't threaten them with time-outs, can't do anything in the parenting handbooks.  Believe me, we tried. Our new method come from Ross Green's The Explosive Child.

So I wander down and hear screaming.  She's lambasting the twin five-year old girls and the six year old red head who was been a step ahead of me.  He's crying - I send him home.  The twins are throwing their hands up in consternation and I send them home.  And my girl is wedged in a driveway (not ours) between a minivan and a brand new Audi.  All I can think is, please don't fuck up the new car. More screaming, violent thoughts and then I walk slowly toward her, extending my arms.  She yells at me to go away, but I keep walking and she throws herself in my arms, dissolving in tears and pain.

When I bring her home, she runs in her room, hides in the closet and refuses to come out.  My mom makes her a grilled cheese, just something so that her meds won't upset her belly, and she falls asleep.

This happens at least once a week. Other things happen too - making our nights, our days and school challenging.  But something really struck me on this night. We live in a very kind bubble. Every neighbor knows what Rosie has been through, her current diagnosis and what we live with everyday. They can hear it.  Our houses are close.  So I've told everyone.  I would have told them anyway.  I believe in the circle of empathy.  Make a circle, tell people your feelings, your pain and people will care and they have.  I have never lived around so many loving people in my life.  That night, no one came out to ask if I needed help, because they know that there is nothing to be done.  Deescalation means one on one, with minimal shame.  That can only happen with as few eyes and witnesses as possible. At least that's how Rosie feels.  Later the texts came, the check-ins.  "Everything okay?", "Do you need anything?" And I love these people, because they trust me and they trust Chris and they love Rosie and they know that things are hard and there is nothing to be done.  It's sounds impossibly flippant but I think we're all training for the police lights when she's a teenager.  Right now, I can sit on her.  I can hold her.  I can control her.  But when she's bigger, stronger and wiser, many more hands will need to be involved.  And that's why I 'm so glad that I live in this very kind bubble - because when that days comes, they will come out of their houses and help me.  And I love them for that.

Guano Intro

Rosie is seven.  When she was four, she started hearing voices.  Imaginary friends?  We wish. After two years of being treated for pediatric epilepsy, unsuccessfully (because she never had it), several doctors determined that she has a mood disorder with psychotic features.  They won't say early onset bipolar yet, because she's too young and the DSM V (the statistical manual which classifies all psychiatric disorders) has determined that bipolar can't really happen before adolescence.

But, she gets really angry about legos.  She's threatened to kill us all with knives through our hearts and she tried twice to jump out of her window to kill herself.  She has a voice inside her head, Jack, who tells her what to do.  So far, he's been kind and helpful, even encouraging.  We hope that their relationship stays positive.  Since we found her newest medication, she's been better.  Much better.

I haven't been able to start this blog until now because I feel as though we live day to day, inside a bubble of chaos and unpredictability, but things are getting better and I thought people might want to share their stories about living with children who have a mood disorder.  I do.  Oh, and when things get really crazy, we call her guano girl, to ourselves only - as in, bat shit crazy.  If that characterization alarms or offends you, this blog will not be for you.  Things are about to get real, people.