The Joy of Openly-displayed Knives

This time last year, I was bemoaning my broken house. I lived on subfloor, my washer had died, the guest bathroom leaked, and I hadn't had hot water in three months. None of that is true now. How that happened is another story, but my house is no longer broken.

Elizabeth has been mostly stable, and she has not been hospitalized in over four years. She graduated with a diploma and a graduation party, which was far more important to her than the diploma. She comes home every Saturday and goes back to her AFL home on Sunday. She has full days of volunteering, she takes a hip-hop class, and she works her paying job on Sunday mornings.

One of the gifts of her stability is that I have revived my hobby of plant parenthood. Now I get to see them as plants and no longer as projectiles. Occasionally a pot gets broken, but that's usually the fault of the cats and not the kid. I love leaves as others love birds; each one seems so different and miraculous in their variegation and texture.

But the big news is that I got a knife rack. It's magnetic and I have it on the side of the refrigerator, with all my knives openly displayed. The knives aren't the sharpest, but I no longer have to go through the drawers to find one. They are there right out in the open.

This may not seem like a big thing to you, but it is to me. When you have a child hospitalized for mental illness and they are sending you home without help or hope, the thing that they always tell you is to be sure to lock up the knives. I dutifully did that because it was something to do, even though it wasn't really what was needed.

I am inordinately proud of my knife rack. And I know, as you do, that it's not really about the knife rack. But it's a gift of grace, nonetheless, and I think I'll go look at it again.

Homemaking

When I first bought my little condo, I had a five month old baby and big plans. Friends helped me paint before I moved in. I was so happy to have a place of my own, and I painted other rooms, took down wallpaper, and furnished it almost entirely from thrift stores. Baby number two came along, but I still had an interest in keeping up with things. I loved entertaining and one of my favorite events of the year was our annual St. Clare's celebration in honor of Claire's name saint.

As Elizabeth's mental illness became more obvious and more acute, there was less time and energy to devote to homemaking. Still, friends helped me paint and lay new flooring. One summer, I sent the girls to my parents, and an amazing number of friends participated in doing a room makeover for them. Someone sewed pillows, someone else made a valance, people painted walls and ceilings, and several helped with new flooring. There was new art and new bunkbeds, with new comforters and sheets. When I'd put Claire to bed at night, she'd look around and ask me to remind her who did what. It was community at its best, and their room was a happy and safe place, at least for a bit.

But a home doesn't remain happy and safe when a family member has mental illness, especially one that causes such violence. It's one of the most isolating things about mental illness. The toll it takes on family members is mirrored by the toll it takes on the house, and I stopped inviting people over out of embarrassment and shame. Elizabeth threw furniture and ripped doors out of their frames. Anything could become a weapon and often was. During her rages she pulled books off the shelves, emptied boxes of papers, threw plants, and pushed over bookshelves. I gave up having houseplants, always a source of enjoyment for me. When the water heater started leaking, I had neither time nor money to deal with it and so I ignored it. A rug covered the buckling and peeling laminate. The broken house seemed to be a fitting metaphor for our broken family.

It's been a good year. Elizabeth has spent the last sixteen months stable and productive. It's been a long time since we've had an entire year with no hospitalizations and no police calls. She lives in an alternative family living home, with a kind couple and two other developmentally disabled children, but she comes home almost every weekend. Elizabeth does well in school, so well that school staff look puzzled when I talk about her past difficulties. She turned 18 this year and I've applied for guardianship so I can manage her finances, talk to her doctors, and help keep this vulnerable young woman safe. We go before the clerk of court next week.

Claire is doing well. She is getting married in March and her fiancé meets with my unqualified approval. She continues to teach at JRA. I enjoy the many facets that our relationship holds, and I love that she lives just down the street.

This has been a good year for me too, one in which I've been able to address and correct many of my own health issues. I've resumed walking and light weight-lifting. I've improved my diet and cut out the sugar. I feel the best I've felt in years.

I'm not sure it's a politically correct thing to say, but I like the empty nest. As much as I love my girls, I love that they have their own lives that make them happy. I love that my house is once again my own. This year I decided to make my house a more accurate metaphor for my calmer life. I started by hiring a handyman to rip out and replace the damaged flooring in the hall. He and his sons began working as I read in the kitchen. I couldn't understand the words, but I began to sense that there was a problem. Finally the one who spoke the best English came apologetically to explain. The problem wasn't just with the flooring. It was with the supporting beams. In the words of a friend, it was house cancer.

He covered it up with plywood and left, refusing to charge me for anything but the wood. I talked to the contractor who does our work at school and he fit me into his schedule, replacing the rotted beams. He charged me far less than the market rate, but it still was expensive and there was nothing left for the flooring. But I no longer worry about falling through the hall floor, and he repaired the guest bathroom plumbing while he was there.

2017's big project will be a new heat pump. The floor will need to wait a bit longer. In the meantime I'm working on smaller projects. The school contractor has made me a great offer to tile the guest bathroom floor. I have items to repair: a lamp, a drawer, the washer, some furniture. I'm going to paint all the rooms. And I've attacked the clutter with a vengeance. So far this week alone I've taken three loads to the thrift store and gone through a whole box of trash bags. There is NOTHING under my bed, except a cat exploring this unfamiliar territory. And I'm slowly bringing the houseplants back.

It's a source of joy, this reclaiming of my life and my house, all the better because it's so unexpected. I thought my life would always reflect the chaos of mental illness, and the peace of healthy children and a calm home is such a gift. I don't mind that the house reclaiming is a slow process; I enjoy the puttering and planning. I hope 2017 will be the year I allow people to visit my home, at least the ones who don't mind a plywood floor. It feels safe and happy here once again.

Grateful

This Thanksgiving was the first in three years that the police weren't involved. This is a big deal for us. Elizabeth was home for two nights. I mostly enjoyed it, but I was still very tense and a little relieved when she went back tonight. I've gotten pretty good at the police thing, but normal is something I'm still learning.

Elizabeth has spent most of the last two years in the hospital, either UNC, Strategic Behavioral Health, or Central Regional. There was a brief stint when she was in an alternate family living home, but she wasn't ready to go and the foster parents were ill-prepared for her needs; unfortunately, funding issues made it imperative that she be discharged, even if she failed. Which she did, spectacularly. So back she went for another eight months.

I have liked most of her docs at Central Regional. The one during the last stay was a prize, as was the social worker and her psychologist. There is a drug of last resort and the doc felt it was time to try it. It's a high-risk, high-gain drug, dangerous enough that they had to convene a hospital board to approve it, and she has to have weekly blood draws. It's not ideal. But it sure has been a game changer.

She has been out four months, again in an alternate family living home, and there has been no act of aggression. Not one. She follows directions. She is making A's and B's in the occupational program at Wake County's Sanderson High. We are having trouble keeping her IEP accommodations because they have seen no misbehavior. They don't understand why I'm so adamant.

And she's not drugged out, either. The comment I get most about her is, "She's back." Or "There's someone behind the eyes again." Is she perfect? Not at all. But the problems are so different. They are more normal teen things, and we have to remember not to make everything pathological. When I take her back, she often goes to her room and cries. This freaked out her foster parents and me, until we remembered that homesick people do cry sometimes. In the past, she threw things or hit or pulled hair. We are readjusting our idea of normal Elizabeth behavior.

A lot of credit goes to the foster parents. They have three kids in their home, two of whom are nonverbal. Elizabeth loves helping with them. And she loves the fact that there are often four generations in the home, including what may be the world's cutest one-year-old. This is their full-time job. They don't yell. They are problem-solvers. And they tell her daily they love her.

While I'm being grateful, I have to say I'm thankful for where Claire is as well. She lives across the street from me with the boyfriend, whom I'm pretty crazy about, but don't tell him. We have a deal that we call before we drop by, and we've done well living so close. They hosted Thanksgiving dinner this year. It was a veritable feast, with both sets of parents, one grandparent, and all the siblings, good china, place cards, and silver.

Claire teaches for me as well. She swore she never wanted to be a teacher, that she wasn't a teacher. She was wrong. Autism is her thing and she is phenomenal. She is still recovering from a concussion a student gave her earlier in the year, but does well most days. I love working with her.

So there we were Thanksgiving, acting like a normal family. It's going to take some practice to get used to it, but I'm willing to put in the work.

So grateful.

milestones

Wright School graduation, 2009

One of my favorite things about Facebook is seeing pictures of your kids' milestones: first tooth lost, first day of school, birthdays, proms, driver's license, weddings. These are all touch points highlighting our commonality, our shared culture and community. We smile at others' pictures today, knowing we'll post ours tomorrow.

Except when we don't.

It's that time of year again, fancy hair and dresses, corsages, tuxedos, yesterday's gawky kid all dressed up for the prom. And mine is in the hospital. She's always in the hospital. As much as she would like to go to the prom, she can't. It's more than logistics; she doesn't have the social skills or the ability to keep herself safe in a complex social situation, not to mention a date.

For many years, she kept pace with the milestones. First steps. First tooth lost. Learned to ride a bike. Check, check, and check. Dance recitals. Swimming lessons. Birthday parties. Sometimes she excelled and reached them before her friends. And then there were the ones that her friends didn't achieve: first hospitalization, first police call, first residential placement.

This hit me initially when her friends were being confirmed at church. I'm sure someone would have worked with her, but she couldn't truly participate in the class and it would by no means be an adult profession of faith. Driver's ed? That's a scary thought. Cell phone? There are so many bad decisions to be made with a phone, and she's made most of them. It's why we don't have a landline at our house and why I still sleep with my cell. Dates? She is presently unable to safely have that kind of relationship because she is such a target for predators. High school graduation? She's not been in school since November.

When I start getting morose about this, I try to remember that Claire didn't have many of them either.  There was no high school graduation because she was homeschooled and went to college a year early. There was no prom for the same reason. While she took driver's ed, she had no interest in getting her license until the summer of her 19th year. But hers were choices, and there are many other milestones she has made.

For Elizabeth too, there ARE milestones, they're just different. She's gone four days without biting or attacking a peer or staff. We put together a 300 piece puzzle in an hour, beating our record of 200 pieces. Her blood sugar has been in the normal range for the last three months. I've kept her alive and out of jail for another year.

Don't stop posting your pictures. I love seeing them. I'm trying to be more intentional about celebrating what there is to celebrate and accepting our life as it is. As hard as it is on me, it's so much harder on her. Part of my job as her mother is holding up her accomplishments as the amazing things they are.

We had a great visit today, all three of us. She noticed and complimented Claire's new hair color, notable because it means she's looking outward. We finished another puzzle. We laughed a lot. Four days without hurting anyone, you guys! I have no pictures to post—they won't let me take my phone in—but they still happened.

Whoo-hoo, I say. And I say it with joy and without a trace of irony. Milestones.

the sound of hearts breaking

Last night I trekked over to Garner to visit Elizabeth in her hospital, the one she's been in since December 3, the one I was sure would kick her out at the end of the month. They didn't and I've become a grudging supporter of the place. That's a tepid endorsement, but hospitals for the mentally ill don't come in best and great; not-too-bad and okay and not-as-bad-as-some are the highest compliments I give.

I was shown to the communal visiting room and waited as other children came, but not Elizabeth. After a few minutes, the visitor supervisor asked me to come with her. As we walked down the hall, I heard animal-like screaming in the distance. "Is that Elizabeth?" I asked. She nodded as she showed me in the small room.

Soon Mr. J came to meet with me to explain what was happening. He explained that Elizabeth had a new roommate, and this child's father had a terminal illness. Elizabeth started taunting the child, saying she hoped her father died. Not surprisingly, a fight broke out and she had to be restrained. I can see it so clearly: I suspect a favorite staff paid attention to this new child—even a friendly word would have sufficed—and Elizabeth tore into her.

As Mr. J started telling me this, I could see him struggling for control. He got out the part about the terminal illness and gulped. He stopped and tried again, but couldn't. He broke down sobbing. "I'm sorry," he said. "This is so unprofessional. I'm sorry." He took a deep breath and started again. "But that other child . . . I know it's Elizabeth's illness talking . . . I'm sorry I'm being so unprofessional." He looked down at the desk and took deep, shaking breaths as he futilely tried to regain composure. I finally reached out to take his hand and we sat, hands clasped, without talking. I thanked him for being more human than professional and told him not to put himself through trying to tell me about this.

I feel so conflicted at times like this. Yes, it's her illness speaking. There are giant holes inside her soul that need filling so badly that she will hurt in a vain attempt to fill them. She has no impulse control that could help keep inside the mean thoughts we all have at times. She thinks it, she says it. She has an uncanny sense of every person's weak points and thin places and goes unerringly for those when she wants to hurt.

I also feel judged, even when I'm not being judged. Sometimes my feelings are accurate; the director of a school she once attended indignantly told me about something mean Elizabeth had done. "I find that the apple generally doesn't fall far from the tree," she said accusingly. Wait, I thought. Surely she's not saying that I taught her that? My other kid doesn't do that! Last night I wanted to stand and shout, "You DO know she wasn't reared like that, don't you?" even though I felt no judgment from anyone but me. My heart breaks for the bullied child and I feel fury towards Elizabeth, anger it's not productive for her to see. And then my heart breaks for her as well.

The mentally ill are most often not cute or appealing. In spite of that, there are good folks who take them on and care for mine when I can't. I have such gratitude for those who work with the mean ones, the smelly ones, those that wound and spit and bite, the ones only a mother can love. When we have a particularly unpleasant child at school, I tell my staff, "Remember his mama loves him. Let's start with that." Mr. J's tears give me more confidence in the place she is in. It's what I hope for in any placement—that there are staff with the capacity to care, ones whose humanity is more important than professionalism. It's the only way I can leave her there.

God bless the ones who work even while their hearts are breaking.


photo by Lindsay Williams

Holy Innocents

A couple of nights ago I dreamed I was entrusted with a beautiful two year old African American child to care for and love . . . and I lost her. I searched and searched, all the while berating myself for being so careless. You don't have to be Freud to figure THAT one out.

It's been a weird Christmas. We spent three and a half months trying to fit Elizabeth into treatment options that didn't quite fit. She did okay for a while but struggled with the living with another family and being sort of part of the family—she was in their Christmas card picture—but not quite. They asked for time off over Thanksgiving and she went to a respite home for the weekend. She crawled out the window and ran away, seeking shelter in a Japanese restaurant, whose staff called the police. Things deteriorated from there and soon she was back in the emergency room, then the hospital, a new one this time. 

Christmas day, Claire and I went over to visit. Five families shared a small room, observed by a nursing assistant in a Santa hat. We opened presents, passed around contraband food, and debated what the kids could keep and what would have to go home. Hang on, we kept telling her. Stay in control. That's your way out. But yesterday she got into a fight with another kid, whose parents pressed charges.

I drove over to talk to the officer. He was reasonable and immediately got it. "Why's she here?" he asked me. "For aggression," I responded. "Did the hospital know that?" he asked, puzzled. They did. "So why were they not monitoring her more closely?" I don't know. This is the third time charges have been brought against her, all in a hospital setting, all for exhibiting symptoms of her mental illness. He refused to arrest her, an act of mercy, a moment of grace, there within an insane system.

This hospital will most likely kick her out this week. They are a for-profit hospital and there is no money to be made off of Elizabeth. Realistically, I've given up hope for treatment now. My goal is to keep her alive and out of jail until . . . I don't know until what. Perhaps until I can create a place for her to be that can help her. I'm not sure people really talk about treatment for severely mentally ill people outside of hospitals right now. There are actually fewer treatment options than there were a few years ago. Since Sandy Hook, North Carolina has cut funds for mental health two years in a row. We've also refused Medicaid expansion, which could provide mental health access to thousands more. Once again legislators tried to close Wright School, the only ray of hope for NC children with mental illness. It's a bad time to be a child with mental illness in North Carolina. 

It's actually a tough time to be a child anywhere. This month Taliban militants in Pakistan massacred 132 children. In April of this year, 273 school girls were kidnapped from the Chibok Government Secondary School by Boko Haram Terrorists in Nigeria. #Bringbackourgirls we cried. But they didn't and we lost interest. Twelve year old Tamir Rice was shot and killed holding a toy gun. #Blacklivesmatter we cried. Others protested that #alllivesmatter, totally missing the point that, as George Orwell pointed out, that while all are equal, some are more equal than others. Far too many children are killed yearly by guns, often in schools that should be places of learning and safety, while second amendment advocates piously protest about any attempt to keep children safe from guns. Children languish in foster homes, waiting for forever homes, so many that the state of North Carolina maintains a catalog for you to browse.

When JRA moved into a new building in June, we were at 34 children. We accepted an upper limit of 60 kids to appease our neighbors, the ones who thought the sound of children playing would lower their property value. Sixty kids seemed like an unattainable goal. 2014 ends with 52 children at JRA, with five more entering in January. The kids that come to us in January are usually in bad shape with desperate parents. They've been battered by their school systems, systems filled with mostly good people who have seen their resources cut. They're still expected to work miracles with difficult kids and they aren't allowed to say they can't even when they know they can't. Good teachers are leaving in droves and special education classes often have teachers with little understanding of the kids they serve. And so parents sit in my office and cry as they watch their once cheerful kid deteriorate and beg to stay home from kindergarten.

There will be those who want to know where my outrage is for those babies who are aborted each year. I hate abortion; I want it to stop. But I do not understand the passion for the unborn when those same people care little for the born. I don't know how to stop abortion, especially when we make it so hard for poor parents and parents of those with special needs to care for their children. My motto is that of Mother Jones: Pray for the dead and fight like hell for the living. It's all I know how to do.

One song on my playlist year round is Trans-Siberian Orchestra's Carol of the Bells. I sang this carol in high school chorus, and I know how it should be sung, lightly and joyfully: "Gaily they ring, while people sing, songs of good cheer, Christmas is here!" But this rendition is filled with a rage that is jarring and harsh. I understand this rage. Merry Christmas dammit.

Within the Christian story of the birth of Jesus is a part we don't include in the Christmas pageants. Matthew tells the story of Herod killing all baby boys in the vicinity of Bethlehem, hoping to exterminate the newborn king. While this is not mentioned in any other historical document, some speculate that the death of several dozen babies was not a serious enough thing to even be mentioned. Murdered children stricken from history by their insignificance. Kind of like the mentally ill.

Today is the feast day of the murdered babies of Bethlehem. Perhaps we could honor their memories by making the world a little kinder and easier for the children here now. Perhaps we can think a bit less of power and comfort and hold not just our own children close, but also the children who have it the hardest. Perhaps you could be a foster parent or a mentor to a child without a stable home situation. Perhaps you could give money to my school or the Augustine Project, which teaches low income children to read. You could write a letter to your legislator, asking them to learn about Wright School and keep it in next year's budget. While you are at it, remind them that kids matter more than money. Spread the word and send money to Josh's Hope, which helps mentally ill young people transition to adulthood. Get involved with Moms Rising or Moms Demand Action for Gun Sense in America. There are so many organizations, created and run by people who know it's up to us.

I am, by nature, an optimistic person, even at my angriest. We are the hands that can make things happen. Let's get with it.

Elizabeth's Law

It's hard to believe it finally happened today. So much has gone wrong that her team has started calling it Elizabeth's law. She entered Central Regional Hospital Labor Day weekend, 2013, for what I assumed was a three to four week stay. She was finally discharged today, July 28, 2014.

The problem, I came to see, is that there wasn't an Elizabeth shaped hole, anywhere. She has multiple diagnoses, but what matters in the end is that she has a developmental disability and mental illness. You really aren't allowed to have both, but of course, we've never followed the rules in this family. When it came time to discharge her, way back in October, it became apparent there was no place for her to go to school. CHCCS doesn't have a program for the mentally ill and we were told we had to put a homebound provision in her IEP in case there were any problems in school. We all knew there would be problems at school. Homebound consists of two hours a week with a teacher. The rest of the time she's mine. Which means I couldn't work and besides, that's hardly an education. Try sending YOUR kid to school two hours a week and see how fast you get reported for truancy.

So we started looking around. We'd sit in a meeting while her Developmental Disability care coordinator, Mr. W, and her mental illness care coordinator, Ms. S, and her CRH social worker, Ms. P, talked options. I was there but I wasn't much help because I cried a lot. Mr. W would throw out what sounded like a good plan, but Ms. S had to shake her head no. "Her IQ's too low for that program." We'd sit in silence while they scrolled down on their laptops. "How about this one?" Ms. S would ask. Mr. W would shake HIS head. "They don't take kids with mental illness." Ms. P ventured a suggestion. They both shook their heads. "Cardinal Innovations won't contract with that place." After one particularly frustrating meeting, I said, "So what I'm hearing is she can't come home, she can't stay here, and she can't go anywhere else. Is that correct?" After a short silence, all three agreed: "That seems to be the case."

The good thing about Central Regional is that it's the one place in the state that can't kick her out. It's not meant for eleven month stays, but they'll do it if they have to. Our two psychiatrists were awesome, but what really mattered were her psychologist and her social worker. Dr. S graphed data, looking for patterns, causations, results. He also supervised her therapist intern who made great progress with Elizabeth. Her social worker spent countless hours talking to me, looking for untapped resources, and doing cute craft activities with Elizabeth. None of them ever treated me like I was stupid or a pain. No one ever talked down to me. It's an unusual feeling.

And then in January, we found an option that worked for everyone. An agency called Caring Hands had alternative family living homes, a place she can stay until she is 21. And the home they identified was the one thing we hadn't tried: an extroverted African-American couple with a one year old grandchild living with them. Elizabeth is at her best around small children. We met them and we all fell in love with them. The only hold-up was that they were not yet licensed, but that should only take a month or so, everyone assumed.

Elizabeth's law. Four months later, they were still working on repairs to their very nice house, sneaky problems within the septic tank and well. Although it was costing the state $1200 a day for Elizabeth's hospital care, no one could front the family the money it took to do the repairs. They finally raised it, only to spend it on someone who did substandard work, causing them to once again fail the inspection.

The corollary to Elizabeth's law is that when things go wrong, someone amazing will step forward. In this case it was the contractor working on my school, who went to the home and supervised the work so that it was done correctly, without being paid for it. And this time it was. The fire and sanitation inspection was scheduled for a week out, then another permit, and then to the state for approval.

All that would have been fine, except if she were not out of the hospital by July 30, she lost the funding that made this possible, no exceptions. We all knew that date was there, but it seemed so far away. And then it wasn't any longer. No one was willing to leave it to the 30th, because Elizabeth's law meant that there would be an earthquake or something like that that would prevent her from leaving. So her discharge date was set for July 28.

I should have been very stressed, but I wasn't. My care coordinators and the Caring Hands people were stressed enough for all of us. Adding to the stress was the fact that the NC legislature has access to her medical files and get regular reports on what was happening with her from no less than the CEO of Cardinal Innovations (like the Blue Cross of Medicaid). No one wanted to be the one that messed this up, plus, they all had come to truly care about her. When it because apparent that the first home wasn't going to be licensed in time, Caring Hands identified a backup plan, with an interim foster home until the other was licensed.

Transitions are not Elizabeth's strong suit, and she couldn't see past the time she was with the second home. She wanted to be with the first one and totally shut down when we met the C's, the interim family. They are an older African-American couple with grandchildren and another child already in their home. When we met, Elizabeth wouldn't even look at them. Desperately trying to make conversation, I asked Mr. C if they were Duke people or Carolina people. He laughed and admitted to liking UNC. Elizabeth mumbled, "Holden," a family friend and familiar UNC name. Mr. C looked at her for a moment and then began to talk about what a fine person Holden Thorp was, how Holden had played piano at his brother's retirement party the last year. Elizabeth's head slowly raised, and although she still wasn't happy about the temporary placement, at least we had ascertained that our people knew each other, an important consideration for a southerner.

I had her for a pass on Saturday. We met Claire for lunch and in the middle of the meal Holden called her to tell her how much he liked this family. This meant she was willing to go, as long as we promised her she'd be with the L's soon. She was scared to go to church with them, probably because she was afraid people would think she was like their other child, who had autism and was in a wheelchair. We went thrift store shopping for baby clothes for her doll, which was allowed to go back to the hospital with her this last time. We had tearful times; she wanted to make sure I was still her mom and Claire was still her sister, and that she'd come home someday. I said yes to all three and only one was a lie.

The truth is, she can't live at home with me. Her anxiety is too high and she becomes violent when she does not feel safe. There have been too many injuries, too many police calls, too many long waits in the ER. Central Regional is the only hospital in the state that will still take her and when they don't have open beds, we're up a creek. This foster home has advanced training in all her needs. They are constantly on the go, something she craves. She can be part of a very large extended family, all the same color as she is, and that's important to her. Mr. L has 14 siblings and every single one of them graduated from college. They value the things I do and asked if they could take her to Moral Mondays. Mrs. L is a hairdresser, a real bonus. She has her own room and the house has a security system which helps her anxiety.

The school situation is up in the air. For the summer she'll go to a day treatment program. We'll figure out the school year when it's closer. It pains me to say this, but I'm glad she'll be 16 this year so she can legally quit. There is just no school for her; she cannot function socially with kids her own age. Put her around toddlers and she does just fine. I tried her at JRA; I can help everyone else's kid but I can't teach my own. The most I can hope for is a kind of karma, that the care and help I give to other kids will come back to her through someone else.

It's hard to admit that I am not a success at parenting her. This is not a plea for reassurance, but a simple statement of fact. For one thing, it takes more than one parent to rear this child; I'm thinking five might be just right. Also, she is torn with loving me so much and wanting a different kind of family. The best parenting I can offer right now is to love her unconditionally and let her go. There was a time I thought love could conquer anything, but I was wrong. She has spent three weekends at the L's and it went well. She felt safe and connected. I am still her legal guardian and I am still her mom. She'll come home sometime and we'll still see her. We are just making the family bigger.

She just called me to tell me goodnight. The C's had taken her to their church revival, so she was able to get the scariest part behind her. Mrs. C said she really got into the music, and Elizabeth said it was fun. They had ribs for dinner and their one year old grandchild was staying with them too. Bedtimes are always hard, but it she can get past that, we should be okay. Day treatment starts tomorrow, but not until 1:30.

And I'm okay. Sorta.

a really long Facebook status

When you wish you could pick up the phone and talk to someone but most of your friends have no clue what you are talking about and a few know all too well because they live it too. And then you realize you have nothing to say and no words to say it in and so you don't call anyone but go home and get out of the car into the polar vortex air, wondering why there is ice on your face and you feel so drained.

When you try to concentrate in a meeting about your child's future but she is screaming your name so loudly the whole two hours a few rooms away that you can't hold it together. And when people in the meeting don't look at you anymore because they've tried so hard and it hasn't helped and they feel inadequate and a little angry. And when everyone at the meeting realizes she is not going anywhere anytime soon because she has been in an acute state for five months now and besides there is absolutely nowhere to send her, nowhere, not here, not someplace else in North Carolina, not out of state, except this state hospital, because no place that wants to make money is going to take her. And when the Medicaid care coordinator has nothing to offer but his prayers even though he's really not allowed to say that but does anyhow because he's a nice guy.

When the doctor you loved, the one that spent hours talking to you, asking questions and thinking about options, that doctor gets transferred to another unit and you get a new doctor who is a nice guy but he talks at you not to you and never asks one question except will you give your consent to this new medication. And you're not allowed in the unit and they rotate nurses and so you've never seen her room and you don't know any of the nursing staff that work with your kid and the only thing you know is that she cries for them when she's with you on a pass from the hospital.

When you see her holding a friend's three-year-old in church, looking like a normal fifteen year old, and you have a moment of feeling like everyone else. And then she almost breaks the psych ward window and you remember other people's kids don't do this. And they don't have door jambs torn out of the wall and they can have company who don't already know their story.

When you hold your baby's hand and see initials carved into her arm, marring the smooth brown skin you've always loved. And when her hair is wild and unkempt and she can't sit still long enough for anyone to do it and there's no point in it anyhow because it will get messed up during the next restraint but you still remember the soft powdery scent of it when she burrowed into you as a baby. And when she says mean things to you and to other people that you know aren't in her but yet they are because she says them. And you find it hard to believe that this is the same kid who is a rock star to the little kids in church and who buys them presents with her own money just because she loves them so much, who has such depths of kindness and compassion inside her and you wonder where that goes during these times.

When you read the news about a teenager shot by the police because "they didn't have time for this" and you realize that you've called the police to your house dozens of times and this is how your child's story could end too and that there are people who think this would be the best solution because she is too expensive and too hard and there's nowhere for her to be, to exist, much less get better. And you hold like a talisman the picture of her swimming with dolphins that was taken two weeks before this hospitalization and know that is her just as much if not more than the girl the meeting is about. And knowing that doesn't help.

When you are so grateful to have a job you love to go to each day, and you hope you can save some other mama's baby because you sure as hell can't save your own. And when you sit holding a child together after he just hit you because, even though he's really smart, 9 take away 2 is just more than he can handle, but you keep showing him and suddenly he gets it and shouts, "It's 7! It's 7!" and you know that a thousand or maybe ten thousand more moments like that might allow him to not spend years in a state mental hospital and so you do it again and again because it's where redemption lies and you hope maybe someone else will do it for your kid.

You know, that.

with a grain of salt

Three years ago, I woke up in the night with excruciating heartburn and nausea. I suffered through those endless early morning hours until I knew my sister Leslie was awake. She's a family nurse practitioner, and we give the family in the term a whole new meaning. It's always helpful to know she's there to triage, even if she's often in cahoots with my doc, W.  At 7:00 am I finally call her. "Go to the ER now," she orders. I had health insurance then, so it WAS a possibility, but the ER? I spend far too much time in ERs as it is. Besides, she's my BABY sister and I don't have to listen to her. "I'll just wait until W's office is open," I reply. I lie back down, trying to breathe, and sure enough, five minutes later, the phone rings and it's W. Leslie may be my baby sister, but she has my physician's home phone number. "Call 911 and go to the ER," W says firmly. I argue. She offers to pay for the ambulance. Finally I agree, although I wasn't going to call an ambulance. The last time I called them for a neighbor, I ended up chasing them around the neighborhood because they got lost, which happens regularly since our numbering is so strange. That seems a silly thing to do in the dark while having chest pains. I do call my neighbor who is happy to take me to the ER on her way to work.

Here is a secret. If you ever want to be seen in the ER or physician's office quickly, work the words "chest pains" into your conversation. "I'm here because I sprained my wrist and seem to be having some chest pains . . . " "I have a sore throat, and did I mention the chest pains?" You don't even have to finish the sentence because things will happen quickly. No triage room for me; they slammed me in a wheelchair and had me back in a cubicle before they even got insurance information.

As the morning went on, the pain increased. My sister showed up and I put her in charge and abdicated all responsibility; they administered morphine, and I remember very little of the rest of the day, which consisted of chest x-rays, CAT scans, blood tests, and my being a smart ass to the endless parade of med students and residents asking the same questions over and over again, or at least so I'm told. They admitted me overnight and discharged me the next morning. Before I left, I was visited by the attending and a covey of med students. They told me it wasn't my heart and expressed bewilderment as to what it could have been. I told them I'd had less severe episodes of the same pain, but they shook their heads in puzzled unison and toddled on. 

The pain was bad enough that I didn't want to repeat it, so as soon as I got home, I turned to Google. It only took a minute to find my diagnosis: gall bladder. I fit the demographic perfectly and my symptoms matched as well. I called W and told her. "Well," she mused, "that's easy enough to find out. Let's get you in for an ultrasound." She did and my guess was correct. I was highly indignant that the cardiac docs at UNC were so focused on my heart that they had no clue what else those symptoms might mean. It was really a waste of time and money. Someone needs to tell them about Google, an invention that could revolutionize medicine. W referred me to a surgeon and we scheduled the operation for a few weeks out.

Elizabeth was, at that time, seeing an acupuncturist, who suggested strongly that I forgo the surgery. He  gave me an alternate treatment to try. It consisted of drinking shots of olive oil, chased by cold grapefruit juice. What the heck, I thought and planned it for the following Sunday. It was pretty disgusting, but I got it down. I had cleared it with Leslie, who is more open to alternative medicine than most traditional practitioners, but she ran into W at church and let her know where I was and what I was doing. I really felt that was not information W particularly needed, and I was right because she left church and charged over to my house to berate me for my stupidity and make me promise never to do that again. And I thought doctors no longer made house calls!

And I've not needed to repeat the olive oil procedure. Three years have gone by with no gall bladder pain. I've had numerous people tell me that this treatment can not possibly work, and even explain the science of why it can't work. But the truth is, it did. The ultrasound of my gall bladder that was taken at that time indicates that I should be in a great deal of pain. But I'm not.

And that is a long story to get me to the point I want to make. Over the years, Elizabeth has had probably ten different diagnoses: oppositional defiant disorder, intermittent explosive disorder, ADHD, anxiety disorder, as well as others. When she was two, we got her first diagnosis: oppositional defiant disorder. I went home and Googled it and spent the rest of the day in tears. When the psychologist found out, she offered to change it. "Huh?" I said. "It's just for insurance purposes," she said. "It's not like it's carved in stone."

That should have been my warning that psychiatric diagnosis and treatment are inexact sciences. But as the years went on, I listened hopefully to each new doc and took his or her new diagnosis to heart. Perhaps this doc would be the one to figure it out. Perhaps this person knew what he was doing. Perhaps this drug would be the one that did it. But things just kept getting worse.

Most of the things that worked, I've figured out on my own. I owe Leslie the credit for introducing me to the Feingold diet, in which I removed petroleum-based food dyes, artificial sweeteners and flavorings, along with high fructose corn syrup, from Elizabeth's diet. We saw an immediate difference. She does not do well with petroleum in her body. Most of her doctors rolled their eyes and talked about the fact that there was no science to back it up, although that's not entirely true. When she was hospitalized for the first time, I lost control of her diet. These very fragile children were being fed Froot Loops and Jello as well as brightly colored medications. There was and is very little recognition that the foods we eat may have an effect on our brains. There was no understanding that the systems of our body may be interlinked inextricably so that what we do to one part affects another.

January 2011 started a horrifying journey through the crisis mental health system. We entered it via Duke's ER after a hellish day of her attacking me. There a psychiatry resident told me I was misusing their facilities because I was unwilling to discipline my child. When I explained that this was an ongoing problem that was so much more than just behavioral, she rolled her eyes and stomped off to find her attending, who thankfully overrode her. From there we went to Butner, the state hospital for those with mental illness. The care there seemed good but she got worse instead of better. They discharged her to a PRTF (psychiatric residential treatment facility) in Winston, but they couldn't handle her and dumped her in Baptist Hospital's ER, where she remained for ten days because they didn't want her and no other hospital would take her. She deteriorated to the point that she was, at times, shackled to the guerney; they finally admitted her, where she stayed for a month until a bed at Butner came open. Another six weeks was spent there before being sent to a PRTF in Kinston. After fifteen minutes observation, their psychiatrist threw out the months of testing and observation, changing her diagnosis to psychotic and removing her from most of her meds because they didn't fit his diagnosis. Denying her medical diagnosis of diabetes, they decided she was underweight and packed 30 pounds on her, sending her blood sugar soaring. After she continued to deteriorate, they sent her home, saying she was too difficult for them.

And so, on February 16, I woke up with a child no one could handle and no one wanted. I looked through the stack of reports from the various places we had been. Very few of them agreed with another. And so I did what I should have done long before: I took what made sense and threw the rest out. Psychotic? Nope, psychosis doesn't occur just during times of frustration. Bipolar? I'm not buying that one either; only one doc diagnosed that and I have serious concerns about his competency. Anxiety? Yes, debilitating at times, but it doesn't look like most anxiety in kids. Expressive-receptive language disorder? I have said that for years and no one would believe me. Sensory issues? Hell yes. She still can't be trusted with liquid soap and she wears the tightest clothes she can find.

Put together, you have a child who is not comfortable in her own body and who loses the ability to communicate when she is anxious. Her language drops to about a two year old level. And what do two year olds do when they fall apart? They hit. They throw. Sorta like what Elizabeth does.

And so I made my own treatment plan. With her pediatrician's help, we got her into UNC endocrinology, where they put her back on meds for diabetes and thyroid disease. Our intensive inhome therapy team from Carolina Outreach helped with therapy, psych med management, and coordinating care. Both her pediatrician and her therapist recommended speech as well as occupational therapy. She sleeps with a compression vest, the tightest pants she can find, under a 15 pound weighted blanket. I brush her. Then I enrolled her at Just Right Academy, which provides structure, consistency and help for her academic deficits. And last, I took her to a holistic practitioner.

He strongly suspected gluten intolerance. Elizabeth has two autoimmune diseases, diabetes and hashimoti, a thyroid disease. Dr. Y explained that those often go along with gluten intolerance, and the inflammation in her body, shown by her blood tests her pediatrician ran, make that even more likely. And most interesting to me was the fact that there is also a correlation between anxiety and gluten intolerance. Further testing showed his hunch was correct, and that she was also intolerant to corn, dairy, and millet.

It was overwhelming and at one point I broke down sobbing in the bread aisle at Whole Foods. Who knew they had such a good pastoral care team? The employees surrounded me, giving me hugs, samples, and really good advice. My friend Lisa got me an awesome cookbook with recipes for truly elegant food. Another friend, Jan, practiced and perfected tasty cookies that we all love. And Claire rolled up her sleeves and got to baking. We learned about quinoa flour and xanthan gum, how to curdle coconut milk with lemon juice to make buttermilk for ranch dressing, and the advantages of cooking with coconut oil. The hardest part is finding food on the run.

The food issue has been brought to the forefront by two events. First, Elizabeth was admitted to the hospital for crisis stabilization. It took two days for this nationally known research hospital to come anywhere close to a gluten-free, corn-free, dairy-free, diabetic diet. The first night they sent macaroni and cheese and bread sticks. The nurse sent it back. Then they sent a hamburger on a bun. Finally someone gave me a pad of paper and asked me to write down what she COULD eat. I did: unbreaded, unsauced meat. Fish. Fruit. Vegetables. Brown rice. Quinoa. Salad. Eggs. Beans. Potatoes. They looked at it in surprise; "Wow. That's a pretty healthy diet." Yes, actually, now that you mention it. Yesterday's lunch consisted of black beans, rice, salsa, and salad. Finally!

The second slap upside the head was a meal, one held at my friend Meredith's farm. She provides us with organic vegetables and eggs throughout the year. Last night she hosted a Farm to Fork meal with fresh vegetables from the farm prepared by a Kenyan chef, Njathi Wa Kabui. It was a four course, four hour meal that was vegan and gluten-free. Africans and Americans made up the guest list. The blessing was given by a Muslim; my table included a Jewish couple. The food was so filling and because it was so good, no one overate. We ate on her big porch by the pond, listening to the ducks and the cicadas. I left feeling fed in more ways than one.

And isn't that what we all want? We grab fake food to eat while we are rushing from one place to another, forgetting that meals are more than nutrients, not that we're doing so well at getting those. The word companion comes from the root bread and the prefix with, but so many of our meals are eaten alone or in front of the TV. With a child on such a restricted diet, it's easy for eating to become a grim, purpose driven activity, and that is just wrong. I wonder if our skewed ideas about eating don't contribute to mental illness, especially depression and anxiety. Perhaps lovingly prepared meals using healthy appealing foods, eaten with people we care for could help move a lot of us towards wholeness. I don't want to say that mental illness is not a real thing, but I believe that among the therapies, meds, and techniques we try, care-full food needs to become another intervention.

It's worth a try. Today I smuggled Elizabeth a pocketful of Meredith's grape tomatoes; her eyes lit up and she ate them gleefully. At home, I take the okra from my CSA bag and prepare to roast them with olive oil and garlic. It's too important not to give it a shot.

just a bump in the road

So Elizabeth is back in the hospital and I'm just fine with it. After all, she has a chronic condition which has an acute flare-up every now and again. Some things I can prevent and some things just are. And this trip falls into the second category.

She has done well with a relatively unstructured summer. I signed her up for two weeks of camp with a couple of weeks in between. She did great at the first week right up to 4:30 Friday, when she had a freak-out and had to be briefly restrained. She was able to process this with a couple of people, something that just isn't her strength. Before she went back, the camp director, her community support team and I all talked. We made sure there was every support in place, constant one-on-ones, my talking to the staff, a crisis plan. But there is always something you can't plan for.

The unplanned thing was a lice outbreak. I had her checked and she was clear before camp started, but on Monday, they found a louse and a nit. We went into town, bought the chemical stuff, raced to a local friend's house, washed and combed her, and then I took her back to camp, all before 10:30 am. She was able to reintegrate into camp just fine. Tuesday she was clear, but she was pretty fragile by the end of the day. Wednesday they found more nits, so we drove all the way home (45 minutes) to do the washing and combing thing again. She was back by noon and seemed okay.

But she wasn't. She didn't want to leave when it was time to go because she didn't want to leave her favorite counselor, Addie. After the first camp, I could see she was becoming obsessed with Addie and I talked to her about it, as did her therapist. When it was time to go Wednesday afternoon, she became violent towards me, hoping that Addie would intervene. Which she did, but Elizabeth couldn't calm herself and I had to call 911.

The deputies they sent looked about 12, although they were driving, so they had to be older than that. I always worry with young cops; do they have the life experience to read people accurately? Will they see the sweet child having the breakdown or will they see someone dangerous? One thing I give thanks for is that Elizabeth is a girl because a black violent boy does not stand a chance. But they were good at their job as well as kind, and after they got her in the car, they gave her a stuffed dog which she held close the remainder of the night.

The ER gods were kind to us as well. We were sent right back to a room. UNC has a behavioral health emergency department, separate from the others. They have apparently accepted the fact that emergency rooms are the front lines in mental health care and have prepared for it. This is good except they won't let me take my computer or phone in, and so I look forward to a long night's stay without the online scrabble games that used to make these stays bearable. The drill is that she is seen by a pediatric resident, then the attending, then a psych resident, then their attending. Getting four docs down there can take hours. But within an hour we have the first resident, and her concern about lice brings the attending down to see us. She is one of the best we've ever had and she does what she can to make things easier for me. Elizabeth is so dehydrated that they can't get any blood out for tests; after three tries from three different nurses, the attending puts her foot down and tells them it will have to wait until the next morning.

The psych residents come down before midnight, two of them. One interviews Elizabeth and one me. Mine asks me for her history. If you've followed this blog, you know it's long and it ain't pretty. She finally puts her pen down and just listens. Within an hour, they've decided to admit. And there are beds so they can admit there. I'm home by 2:30 am; this may be our all time shortest stay in the ER. Our fellow inmates are moderately entertaining; one does a little dance for the resident and me before he is discharged.

Once in the unit, we also get the luck of the draw when she is assigned to a fellow and not a new resident. He keys in on my use of the word obsessive when I describe what happened. "Has she ever had a diagnosis of obsessive-compulsive disorder?" There are so many of her actions that I can ascribe to her anxiety or her language disorder or her sensory integration problems, but there are many that just won't fit. I visualize them lying around the floor like pieces of paper without a place to go and suddenly someone hands me a file and it turns out that they all belong there. He asks to do a test called the Y-BOCS which screens for that. I like him and I like that he thinks like a detective. He agrees not to change her meds and I appreciate that. Sometimes the residents get all excited and want to play with meds, but he's fine with leaving them as they are.

When I get home, I tell Claire what he said, and she goes into her ranting riff she does whenever Elizabeth gets a new diagnosis. She did it last when Elizabeth was referred to UNC Opthalmology for possible glaucoma: "I am relatively sure that what this black, mentally ill, gluten allergic, adopted kid does not need is TO BE BLIND!!!" Today she starts in, "Let's just give her ALL the diagnoses because she doesn't have enough as it is!" I have to agree with her. Lice are very unusual among African-Americans, but she's the one that gets it. Claire and I don't, just her. Why is she the one that's diabetic with thyroid disease plus gluten, dairy and corn allergic? Why does she have the sensory integration disorder and a speech disorder too? Anxiety? Mood disorder? No one promised fair, but could we just have a break? Apparently not; instead we get OCD.

But as we're cleaning up Elizabeth's room, Claire hands me ten sheets of notebook paper where Elizabeth has started writing a letter to Addie: Dear A, dea, Dear Addie, I ho, Dear Add. We look and see a tiny mistake on each which caused that draft to be rejected. We pick up her clothes off the floor and joke about how she tries on ten or twelve outfits each morning. OCD looks like it's in the running.

I look for grace and find plenty. Another piece of the puzzle is one of them. She has received intensive inhome services from a community agency; since it's working so well, it will be taken away from her, which is the way the system works. But this setback should earn us another two months. It's also nice to have some time to myself. Tonight I go to Claire's play and tomorrow night I have dinner plans. There's time to putter, to clean and to eat gluten. We all agree that this is just a glitch, one that can probably be resolved with a tuneup. And this time I don't see the psych ward as a sign that I'm a failure but as another tool to help Elizabeth towards health.

food as enemy

I'm southern, which means food isn't just what you do for nourishment, it's what you do for everything. When people come over, you eat. When someone dies, you start cooking. Holidays are marked by seasonal food and lots of it. When my kids were young, we celebrated lots of days with themed meals: red, white and blue food on the fourth of July, blue milk for a blue moon, steak, beets, and strawberries on Valentine's Day. We ate meals together and I, for one, found a great deal of joy in our meals.

When Claire was seven, she convinced me to let her try being a vegetarian. She proved she could responsibly find other protein sources and not overindulge in carbs as many young vegetarians do, and she has continued on this path to this day. About that time, I tried Elizabeth on the Feingold diet, which removes artificial petroleum-based food dyes, artificial sweeteners, artificial flavorings and high fructose corn syrup from her diets. Her behavior improved and my insomnia ceased. We continued this diet until she became hospitalized on a regular basis; they fed her Froot Loops there and seemed puzzled when I complained. After all, what does food have to do with mental health?

Then she developed diabetes, type 2, and that involved a whole new set of food rules. We counted carbs and tested her blood sugar. She could eat almost anything, but it had to be in a balanced and responsible way: one pieces of pizza, not six, and that with a large salad. At her last PRTF, they obviously knew nothing about diabetes management, denying her peanut butter and lip gloss because they had sugar, but allowing her unlimited servings of potatoes, rice, pasta and bread. They were also big on artificial everything, and her diet was less healthy than ever before.

While she was gone, Claire figured out she was allergic to soy, not a happy thing for a vegetarian. Okay, so we'll cut out tofu. Except that wasn't okay. Soy is in everything. Most fast food restaurants use soy oil; most chocolate contains it as well. The restaurants we could eat in dwindled to two or three. Soy candles were banned and even magazines printed with soy ink. We read the labels on everything. Claire learned to bake out of self-defense, and we enjoyed the fruits of her efforts: challah, chocolate cupcakes with kahlua icing, brownies with cream cheese.

Today I took Elizabeth to a holistic practitioner, one who comes highly recommended by a friend. He looked at the numbers from her blood tests (done by her pediatrician) and pointed out the signs of inflammation. Her race, along with her diabetes and Hashimoto (thyroid disease), mean the likelihood of her having sensitivities to wheat and dairy are extremely high. We can do the $300 blood test, he explains, or we can just take it out and see what happens. We opt for the latter. He also wants her to stop eating anything deep-fried, due to the trans fat produced by high heat. He feels that the interactions that happen in the body have a huge effect on the brain.

I want to argue and say I don't believe this, but unfortunately it feels too right. I explain it to Elizabeth, putting the best spin I can on it: there are lots of good things to eat that don't involve wheat or dairy; you'll feel so much better. But that is no consolation for life without pizza, sour cream and Lockhart's fried chicken. Claire and I walk her through Whole Foods, exclaiming in rapture about the options we have. OOh, chocolate muffins! Quinoa! Gluten-free oatmeal! Seaweed snacks! Claire points out things that her friend Henry (gluten-free) and Grace (vegan) really like. Slowly she starts to come around. We pack up two small bags with $65 worth of food and head home.

Sometime after she went to bed, she got up and ate a muffin, the seaweed snacks, fruit snacks, and a bag of chips, her snacks for the next three days.

I know there are people who healthily and happily live on a gluten-free, dairy free diet, just as I live with someone who copes with a soy-free vegetarian diet. And I hope she will accept that this is what will make her feel better. But right now I grieve for my children who have to see at least some foods as the enemy, who have to read every label and pass on the cherry pie and bread and butter.

one lousy hand

Two days after my meeting with Nova last month, the supervisor called me and did some serious eating of crow. Her people had let her down. It turned out that the numbers weren't really as bad as they had told her and that Elizabeth HAD made progress. She was still learning her job and wanted to apologize, and the director/CEO of the facility was going to sit down with them and look at treatment goals. I felt like I was holding a handful of trump cards and that we could get some things accomplished now. There were some good folks there and I knew it would be very disruptive to Elizabeth to start over somewhere else. Transition is not her strong suit. I was ready to move ahead.

I'm obviously a pretty lousy poker player.

Elizabeth's Child and Family Team has been busy this last month. We've met twice and worked over email to come up with some thoughtful goals. We invited NOVA to participate via conference call at last night's meeting; no response. I finally called Disability Rights NC; it turns out they have had several complaints about NOVA, and they called and talked to Elizabeth's therapist there about some of them. They asked me to report her threatened discharge to the state, saying they couldn't just decide to kick her out like that. The worker I talked to at DRNC actually had met Elizabeth on another visit there. They were concerned about her diabetes too.

When they called yet again about another restraint, I asked once again that she be put back on the beta blocker that was looking successful when she came. The psychiatrist had pulled her off it in the first week. At clinic on Tuesday, he agreed to put her back on it for seven days to see how she did.

Today I took the reworked goals to NOVA for our monthly treatment team meeting there. Our team charged me with presenting these goals and asking them to work with them to hone her treatment. They had said they didn't know what to do, and our team was going to help. When I arrived, I was pleased to find their director/CEO had come to the meeting and I passed out the goals.

He held out a hand to stop me. "You aren't going to like what I'm going to say," he said. "Effective February 12, Elizabeth will be discharged from our facility." I said something about their inability to change their treatment to help her, that I knew they were out of strategies, repeating what they had said last month. "Oh, no," he said. "We can work with her just fine; it's you we can't work with." He quoted their handbook, saying that the therapeutic relationship was too broken to continue and that was grounds for dismissal. When I asked for specifics, he said that I had copied regulatory agencies and legislators on my emails and that could be construed as a threat. 

I asked about the diabetes testing. They had records showing that they had been testing all along, their nurse said, but no, I couldn't have them. Besides, a blood sugar of 274 isn't too high and they don't believe she has diabetes. The director/CEO said that he had diabetes and he knew about it. She certainly didn't have type 1 and she was too young to get type 2. I asked for the incident reports about the restraints she had while she was there, reports that I had been promised. They were refusing to release them. I asked the supervisor about her telling me that her staff had let her down and that their numbers were wrong. She never said that, she told me.

In the two days she's been back on the beta blocker, she hasn't had a single aggressive incident.

So there we are. I have a child coming home in a month. I'm not going to fight their decision and I'm trusting that she is okay in the time that is left. There are some good folks there and I have to believe they will watch over her. I have a lot of work to do in the next thirty days.

But not tonight. Maybe tomorrow.

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.

liturgy of leaving

My last job was that of Christian education director. I had no previous experience when I took the job, but I was desperate for health insurance and figured I could find Sunday school teachers with the best of them. I was surprised to find how passionately I came to feel about the work; much of it was helping people find their places in the community and another large part was helping children and adults learn to live liturgically. One of my gurus was the author and speaker Gertrud Mueller Nelson, who wrote the book To Dance with God. Nelson feels strongly about the place of ritual, not just in church liturgies, but in day-to-day living. Transitional times, she says, are dangerous times. The Church has always recognized this and marked those transitions—birth, coming of age, marriage, death—with sacraments and rituals. Nelson encouraged us to mark important moments in our lives and difficult periods of our days with well-designed rituals to make them safer times.

She says, "In our creative ritual making, we draw a circle around that place and that event so that we can be more fully awake to the magnitude of the moment." We ignore these transition times at our peril. Liturgy of transition can moor us to what and who is important, while ignoring those times or pretending it's just another moment can cause us to feel unsettled and beside ourselves.

Forgetting this wasted a lot of time and did a great deal of harm to Elizabeth.

In the last four months, she has careened around the state, going from a level II foster home, to Duke Hospital ER, to Central Regional Hospital in Butner, to a PRTF in Winston-Salem, to Baptist Hospitals ER, to their psych ward, and then back to Butner. She fought desperately to get back to CRH, at one point telling me, "But I didn't get to say goodbye to everyone." She left Baptist, her home for a month, with just an hour's notice. She muses about how nice Aunt Jackie, her foster mom, was and how she hopes she can see her again. She has a lot of regrets.

I knew we had to do a better job of helping her depart if we didn't want a repeat of the previous fiasco. I asked Mr. G, our CRH social worker, to help her figure out what she needed to do to say goodbye for good as she prepared to leave for a new PRTF. She asked for a notebook and had staff and peers write in it. That was a good start.

Our friend Tom, who has met with her almost weekly for a year, came up with the idea of a ritual as she left. He wanted her to know that she was part of a community and that she was loved. His hope was that she could use that love to sustain her through hard times. We invited those who were close to her to come to Butner and tell her in person. Because the hospital wouldn't allow children to come in the unit, Mr. G suggested that we be given a pass to take her out.

Tom and his wife Janice brought her to a restaurant in Butner, one where Claire and I ate regularly when we visited, one that had the advantage of a private room. Our friend Patti brought four of Elizabeth's friends. My sister and niece were there, as was our neighbor. Paul, our youth minister from church, rode with me and Claire. We ate pizza and mugged for the camera. The kids, who hadn't seen her in four months, picked up right where they had left off.

After our meal, Janice presented Elizabeth with a decorated shoebox. Tom explained that he and Elizabeth had talked about putting all that was important to her in a metaphorical box and holding it close to her when she left. This was metaphor made concrete; in the box she placed the letters and pictures we gave her. Each of us told her what we had brought and what she meant to us. She listened, wide-eyed, nodding at the things people said. Each item was placed carefully in the box. Tom talked about how he hoped, when she felt out-of-control, that she would use the love she was taking with her to help her remember to control her actions. Elizabeth and Paul recited the 23rd Psalm, alternating every word, something they did whenever he visited her. Then Paul prayed, asking that God be with Elizabeth and with us during this time.

It was good liturgy: meal, symbol, psalm, charge, prayer. And at least in the short term, it helped. She was tearful that night at bedtime, but appropriately so, as anyone might be who was leaving something comfortable and familiar to go to something scary new. In the morning, she was excited. When I talked to her Friday night, she seemed settled and happy. We acknowledged the magnitude of the moment and gave her something tangible to hold on to. We made it clear that our family and community were what she was leaving, not just Central Regional. And we told her directly, that even though she wasn't with us, she was still a part of us and deeply loved.

This is where we went wrong before: we didn't acknowledge the magnitude of the moment. In my desire to protect her from my pain, it must have felt as if we didn't care. That's not a mistake I will make again.

Go in peace, Elizabeth. Our family and our community are strong enough and elastic enough to handle your absence for a time. You are still a much loved part of us and always will be. Remember that and use it to help you do the hard work you have to do.

you just might find you get what you need

It definitely wasn't love at first sight. You know those hokey ads of two people running towards each other in a field of daisies, arms extended, ending in an embrace? Well, we would have missed, turned around to try again, and smashed heads together, knocking out a tooth in one and inflicting a black eye on the other. It was really that bad.

When I found out that Elizabeth was being shipped back to Butner, I emailed E, our wonderful social worker from the last time there. She had a full caseload and didn't think we would end up with her this time. We didn't. I didn't hear anything after a day or so and emailed her again. Finally I got a phone call from Mr. G, our new social worker. He was obviously multi-tasking and apologized for being too busy to call. I said the best way to get ahold of me was to email. He said he didn't email. When I started talking about something I felt it was important for him to know, he cut me off and said he'd see me when I got there that afternoon.

By the time I did get there, I was in a fury. I was early enough that I figured a supervisor would be around and I planned to ask to be switched to a more compatible social worker. I was madder and meaner than the last time we'd been in Butner, and I was in no mood to be messed with. I waited in the lobby for him to come get me to take me to the unit. He arrived and started talking immediately about Elizabeth as we made the five minute walk to the lower level. E and I used to make small talk on that same walk. She made me feel like Elizabeth was the only patient she had and she had all the time in the world to listen. I felt like I was in the presence of another human and that made it easier to focus on the difficult work we had to do.

I don't do well with what I hear. Like Elizabeth, I have my own auditory processing problems. I got through college by writing down every word of every lecture and then going back to the dorm and rewriting the important parts. I can't walk and listen at the same time. I need to see it, and pictures help too. And I communicate best by writing, so that I have time to think about every word and whether it conveys what I want it to say.

Every encounter Mr. G and I had seemed to be a negative one. He talked fast; I listened slow. He strode; I moseyed. I was an idealist; he was a realist and impatient with my impatience with the system. He was interested in facts; I told stories. He interrupted constantly; so did I. We seemed doomed.

Before Elizabeth came in to the visiting room, Mr. G and I sat and talked, mostly at each other. "Why won't you do email?" I asked. "I need you to do email." He said that HIPAA regulations made it so that an email with identifying information in it could cost him an outrageous fine and he wasn't taking the chance. "Okay," I said. "But I don't do well on the phone, so it will have to be in person. And you can't do something else while you are talking to me." I could feel his irritation growing. "And you can't interrupt," I added, "Or I'll have to bring a talking stick and you can only talk while you are holding it." He looked at me in semi-amazement and then laughed.

When I left that day I hadn't talked to a supervisor yet. But Mr. G seemed reasonably competent and fairly personable. I asked Elizabeth what she thought. "I like him," she said. "Some of the kids don't because he's strict. But I think he's nice." That was important. After all, she was his patient, not me. I didn't have to like him. He sure was hard to talk to though.

As a southerner, it's hard for me to trust someone if I don't know their people. Have you ever noticed that when southerners meet for the first time, they start playing the Who Do You Know Game? It's an easy way to find out if someone is good or trustworthy or maybe not so nice. You can't play that game in hospitals, especially psych wards. In Baptist we lucked out and there WERE people who knew my people, and they were people I trusted. But this guy was the HIPAA king and I didn't know his people or his stories, and he had my kid.

The next time I came, Elizabeth said, "Mr. G knows Louise." Well, THAT was unexpected. Louise is a bona fide wise woman who knows both of my children well. I emailed her as soon as I got home. "He is one of the best people I know," she said. Oh. My friend Janice, herself a social worker and a member of my Child and Family Team weighed in. "He seems to know what he's doing." That was high praise from her. When we next met, I told him that Louise and Janice had vouched for him and I was willing to keep working with him. "But please don't just dive in. Ask me about the weather or something."

And he did. He really tried and I appreciate that. He made small talk, obviously itching to get on with it. As time went on, our relationship became easier. When I'm talking about Elizabeth, I have stories I tell, stories that I think say far more than a straight narrative does. He started listening to my stories and in the process discovered that it's easier to do that than to calm me down when I can't get my point across. He took time to hear what was being said in between the lines. He learned to laugh at me when I pounded the table and said I wanted to control everything. Then he helped me find what I could control and get on with it.

Claire and I visited Elizabeth last night. I was incensed about a decision the hospital had made, and this time I was the one who started in on him as soon as he came down. "How come I have to obey your rules but the hospital doesn't have to obey their own rules?" I fired at him. "What are you, an idealist?" he countered. We went on like that, yet somehow managing to accomplish what I had wanted to before we ever got to the unit. While he was out of the room getting Elizabeth, Claire asked if we were going to have the conversation I had talked about having all the way to Butner. "Oh we got that straightened out," I answered. She narrowed her eyes in confusion. "You two were each carrying on a conversation, but it wasn't the same one," she said. "How could you have accomplished anything?" But somehow, we did.

As I signed reams of paperwork tonight in preparation for Elizabeth's leaving Friday, I stopped between forms. "You are a good person and I appreciate everything you have done for us," I began. "You said that yesterday," he said, "Here, you didn't sign this one."

When my kids were little, I used to infuriate them by countering their complaints with singing the Rolling Stones' song, "You can't always get what you want . . . " I still miss the easy relationship I had with E at Butner. She was just what Elizabeth and I needed our first trip to Central Regional, kind, patient, knowledgeable, pastoral. But Mr. G kept me from getting too comfortable. This was just a temporary resting place on our way to better things. He wasn't about bonding, he was about getting her what she needed and sending her on her way. He, jarring yet compassionate, was the right person for this part of our trip. Because, you know, if you try sometime, you just might find you get what you need.

Where we're headed

. . . . and all I do is miss you and the way we used to be . . .

It's looking like the Butner chapter of this journey may be coming to a close. Since Elizabeth has been back there, the push has been to get her out quickly before she gets too comfortable. She likes Butner and she feels safe there. Hell, I feel safe there too. It's hard for both of us to leave. Again.

We have been looking at PRTFs, psychiatric residential treatment facilities for those lucky enough not to need that particular acronym. There aren't enough anyhow, and the situation is complicated by the fact that a Virginia PRTF that had 113 NC kids lost their NC funding, and so those kids bounced back into the already overcrowded NC system. Some PRTFs have turned her down, based on her high level of need. I have the world's best Child and Family Team (CFT) and they, along with our Butner social worker, work long hours calling, submitting applications, and calling some more. Finally two accept her, both in eastern NC.

Yesterday I drove down to visit the one in Kinston. It's a haul, over two hours or three Dire Straits albums away. My heart remains in the mountains even though I've lived in central NC for 23 years, and so this flat dusty land feels especially alien and alienating. Why are there so many RV sales lots on this road? I pass Cleo's Concrete Creations, Chosen Vessel Ministries, and lots of Christian academies. Yellow signs with red spray painted words sprout like weeds all over the roadside: peaches, tomatoes, yorkies. Yorkies? I check again. Yep, yorkies. Do I really want her in a town that boasts the 2nd AMEN ment Gun Shop? I'm suddenly very homesick for Chapel Hill.

I continue along Hwy 70, cut off on 268 and find my way to the facility. Road construction debris fills a vacant lot next to it. The place itself looks like a prison, with a fence around it and several low buildings. I stop and sit in the car for a couple of moments, my mood matched by the heartrending strains of a Mark Knopfler guitar solo, the notes echoing the words of the last verse: rockaway, rockaway. In my mind it sounds a lot like walk away, walk away, but I resist. The song ends and I get out.

A staff member is walking with a obviously upset and indignant girl, who cries and tells her side of the story. The staff member listens and makes sympathetic sounds. The girl calms down and I can no longer hear her voice. That's positive. I am directed to the administration building. Kim is perky and upbeat, obviously excited about this new unit. She points out that a new unit is different from a new program. They already have 24 beds for kids ages 7 to 17. This new unit will house 18 more kids. Elizabeth is being offered a bed in a pod for six girls, most of them 12 and 13.

We go to the new building which is in that final stage that all teachers know from the week before school starts. Floors are shiny new, bedspreads are on the bed, but the computer lab is empty. Boxes are stacked in the hall. The building is light-filled and attractive. She would be in a three girl living area, with three bedrooms, a kitchenette, one bathroom and a sitting area. As I look around, I suddenly see all the things that I didn't know to look for in the last PRTF, signs that tell me that perhaps this place can handle someone with her level of need. The TV is behind glass. There are no visible projectiles. There is one seclusion room for every three kids. Kim tells me that even when they are asleep, there are four people assigned to a six bed unit. Okay, that's good.

We find an empty office and sit, and I fire questions at her. I'm going to tell her just how bad my kid is, making sure she knows what they are in for. I thought I had told the last PRTF that, but somehow they didn't get it. I'd rather tell them now than have THEM tell me later. "Are you sure you can handle her?" I demand. Kim smiles. "That's what we do here," she says. "I could tell you stories about kids that make your child look easy. They deserve to be helped too. We can handle her." I ask how many kids they have kicked out in the four years they have been open. None, she tells me. My kid can get kicked out of just about anything, I brag. She's been kicked out of schools, camps for mentally ill kids, PRTFs, and psych wards. There's a first for everything. "Are you scared yet?" I ask. "No," she says. "That is what we do," she says again.

I tell her I'll let her know something on Tuesday and head back home. I call members of my CFT team. We talk about good points and bad. I realize most of what I object to is due to my snobbishness: eastern North Carolina, the gun shop, the fact that Kim mispronounces words. But I'm mostly stuck because I no longer trust my gut, a real handicap for someone who makes most decisions by what feels right. I loved the last PRTF; I loved that it was a working farm on 400 acres. They had a cat, for God's sake. There is no cat here. It was in the mountains. I liked the people at the old PRTF. But bucolic and nice didn't work so well. I need competent more than I need lovely.

At our treatment team meeting today, the social worker and psychiatrist sit and listen as I babble, even though they are pushed for time. They are in their best therapeutic mode, patiently asking hard questions to help me clarify what I want to do. Finally Mr. G, our social worker, asks, "What do you need from us?" "Tell me what to do," I say. They hesitate and look at each other, knowing they aren't supposed to impose their views or wishes, and then turn back. "Take it," they say in unison. Finally—certainty from someone! They talk about why they like it and their reasons are good. They point out that she is in far better shape than the last time she left Butner. And we've learned from the mistakes that we made in her last discharge plan.

We make a plan: Mr. G will have her decide what she needs to do to say goodbye. They'll make a list and check things off. Butner will transport her down there; I won't go. She isn't allowed visitors for 30 days, but I can call. It won't be easy; she refuses to come to this treatment team meeting and hangs up on me twice when I try to tell her about the place. If I'm having trouble trusting, how much harder for her? On June 3, she and the other five girls will arrive at the facility together. That's not much time.

One bright point: our seminarian (a student priest to those not liturgically inclined) will be assigned to a church in Kinston. The Holy Family diaspora, which served us so well in Baptist, comes to the rescue yet again. Tom agrees to visit her and I feel better knowing another pair of eyes are on her.

If they do what they say they can do, she will spend the next one to two years there. They will do medication management, therapy and something they call ART—aggression replacement therapy. She'll get schooling and she can earn trips into town, and eventually even home visits. The assumption is that she will leave there and come home because our system naively assumes that a few months of services will cure mental illness.

I would like that but I no longer count on it. It's a long, winding road our family is traveling. This part is dusty and flat. I hope for a more scenic route someday, but that might not be where we're heading. When the things that you hold /Can fall and be shattered/Or run through your fingers like dust. . . I turn up the volume, hoping it will cover the conversation in my head. Right now my job is to get to this next turnoff and hope it's one that leads somewhere good.