waiting for spring

I'm a good southern girl who was taught not to talk back or argue, at least not without a "bless your heart." Southern girls are nice. But good southern girls don't do so well if they have a child with mental illness.

I haven't posted much lately; no news is good news. Elizabeth seemed to be settling in to NOVA. Progress was slow, but there was progress. The number of behaviors had dropped significantly, and almost gone away during school hours. She had three trips home in the fall, for my birthday, hers and Claire's birthdays, and Thanksgiving, all of which went without a hitch. I looked forward to having her home for Christmas. In my mind, I hoped they could continue to work with her through the summer and then enter my school in the fall. We had talked about this plan in team meetings at NOVA.

Which is why it was so shocking to get a casual email a couple days ago, telling me that she was doing poorly. Her behavior had deteriorated after Thanksgiving, and they weren't recommending she go home for Christmas. They didn't feel she is making progress. And oh, by the way, her discharge date is January 20 and they suggest she be placed in a restrictive environment, for her safety and that of others.

When I talked to her last night, she was weepy about not being allowed to go home for Christmas. My policy is to never contradict the staff in front of her, no matter how outrageous the report. I will check into it, of course, but we need to be on the same team because it's confusing to her if we aren't. Sometimes it's just easier to tell her that something is a team decision; she knew we were having a team meeting today and I told her we'd talk about it. I knew they wouldn't really keep her from coming home, especially when home visits are a PCP goal (a PCP is a person centered plan, sort of like an IEP for the mentally ill). The discharge date was so outrageous I couldn't even take it seriously. It takes months to find a PRTF bed, and that is common knowledge. And they HAD assured me they never kicked anyone out, and that is what they were doing.

So although I made a few phone calls and checked with a few folks, I really wasn't too worried when I went down tonight. I had sent some opening volleys via email, asking for various paperwork, pointing out places they hadn't followed through, asking for authorization forms for folks in high places to have access to her records, the usual bitchy stuff that any parent of a child with mental illness knows to do in the ongoing fight to have ones child treated like a human being by the people charged with taking care of him or her.

But they were absolutely unyielding. A decision had been made by their treatment team (note to self—check on legality of that). My case manager, on conference call and livid, points out that it is short notice. We are giving you 30 days notice, they reply. "It's over Christmas and New Year's," she shouts. "Not to mention there ARE no PRTF beds," I chime in. The supervisor shrugs. "Take her home then." My case manager is stunned into silence, and I am too, but only for a moment. "Take her home? I don't have health insurance. She's put me in the ER twice. The team decided it wasn't safe to have her at home long-term, and you've just said she needs to be in a restrictive environment. That's why she's here!" "January 20," she says again. "Elizabeth is not invested in her treatment goals." Of course not. That's one of the symptoms of mental illness, a brain-based disorder that causes people to make poor choices that don't make sense to most of us.

I put in a call to another of my Child and Family team and ask the supervisor to explain it to him. She doesn't like what he has to say or how he says it and refuses to talk to him any more. He's furious. My case manager is furious. The NOVA staff is furious. I'm furious.

I calm down and talk about Elizabeth's severe expressive-receptive language disorder. Because she has trouble finding words to name her feelings, she acts out, often violently. Those behaviors are clues, I tell them. When she's acting out, look for the cause of the anxiety. I suspect the anxiety is over not being allowed to go home for Christmas. NOVA had agreed to look for a speech and language pathologist in Kinston or Goldsboro, something that never happened. How could you allow that to go untreated? And then there is the fact that her diabetes is back, which probably means her thyroid condition is back. Could that not account for behavior changes, I ask.

The supervisor gets very still. "What diabetes?" she asks. She's an RN, like all of their supervisors. "The diabetes that I told you she had before you ever took her, " I said. "The diabetes that is listed on her diagnoses on her PCP," our case manager blares from the speaker phone. I sense a breach in the wall and press on. "The diabetes that was under control without meds when she entered here, until your doc decided she was underweight and ordered double food portions for her." The supervisor starts flipping through her chart. "I've asked for her blood sugar levels to be checked every month when I met with you," I continued. "And last weekend, Elizabeth tells me they finally started doing it and it's 196. No one called me to tell me this." I'm on a roll now, righteous anger fueling my speech. "I've asked for a thyroid test to be done every month and I asked for one again yesterday, before this meeting. And when was it finally done?" "Last month?" she answers uncertainly. But she knows it was only done yesterday, just as I do. The other RN nods confirmation when I say that.

I tell them I plan to appeal and ask for a grievance form. She isn't sure where it is; there is a crisis in another part of the building and she needs to go, so she'll mail it to me. Not acceptable, I tell her. You've given us very little time and we need every day. I'll fax it to you, she says, desperate to get away. I don't have a fax machine. Her voice gets higher and she offers to email it to me. I agree and ask her who NOVA's accrediting agency is. She closes her eyes for a brief second and tells me.

They let Elizabeth see me for a few minutes. She asks me to write her a letter while I'm there. We often communicate by pictures and notes, because it makes so much more sense to her than spoken words. How wise that she knows that about herself. I tell her in the note that the team has decided she could come home for Christmas. I will be back next Friday, early, to get her, and then we'll go Christmas shopping. I ask her to remember that her behavior doesn't determine her getting to go home, but I'd still like her to really try to let go of the anxiety and stay calm. She reads the note and nods. Then she cocks her head. "Listen," she says. I hear a child screaming wildly in the background. "That's the new kid," she tells me. "He does this every night. That's what I did when I first came." She believes she has made progress.

One of the staff comes to take her to supper. As I leave, an ambulance is pulling up, lights flashing, the reflections making flickering pools of colored light on the wet pavement. I assume the screaming kid is being taken to the ER. I hope he won't stay for days waiting for a bed. I hope someone will stay with him. I hope someone remembers he is a child, alone, without his mom.

There's a cold rain falling as I drive the two dark hours home. When I get back in Chapel Hill, I stop by Harris Teeter to pick up a few things. I can't remember what I need, but my eye is caught by some red tulips. I buy two bunches and some lemons, just because I like the color.

Then I go home and wait for spring and remember wistfully the time when I was a nice southern girl.