Conservatorship, Part Five

So, it's done. The Husband and I took Sophie downtown yesterday morning and waited with many other families before filing into a small courtroom where we waited some more for our turn to stand in front of the judge, raise our hands and swear our truth. We sat quietly and listened while a grandmother petitioned to become the guardian of a fourteen year old girl. The girl's father objected, and there was some intense back and forth between the man, the judge and the girl. The court security guard stood up and walked over when the father pulled papers out of his bag and then pushed them toward the girl and her lawyer. It was hard not to notice the gun. A large young man with Down Syndrome stood between his mother and father, his arms thrown around their shoulders, a huge grin on his face when the judge pronounced them guardians. Throughout the entire proceedings, I heard the most horrific clicking, grinding noise coming from behind me, althernating with screeches, and I strained to not look back. At some point, a young man in a wheelchair was pushed up the aisle toward the judge. He was small and shrunken in his chair, rubbed his hands together over and over and ground his teeth so hard that I closed my eyes, imagined my hands on either side of his small face, willed it peace. Sophie hummed and shifted in her own chair, the judge was respectful and greeted each conservatee by name, both when they entered and when they left, was almost sweet in mien.

I realized that in the not so distant past, all of these young adults would have been chained to beds in institutions. I was grateful for the reams of paper, for the waiting and the officialese. I was grateful for the absurdity of all of it.

Eighteen years ago, on June 17th, I was in New York Hospital with Sophie in a room with six cribs and six sick babies. I sat in a plastic chair by a dirty-paned window and waited for the hours to pass, the nightmare to end. Instead, I learned how to inject steroids into Sophie's legs by practicing on an orange, the nurse cheerful in her demonstration. I pressed my nose on the nineteenth century glass of the parents' lounge and cried, my tears running off my nose and down the window. I waited for tests to come back, for reasons and answers to whys, the baby sleeping and crying and seizing in the metal crib, while I sat in the plastic chair and just kept waiting.

The papers have not been officially stamped and could take up to eight weeks to be delivered (wait for six and then call, our court-appointed attorney said), but we are now Sophie's official conservators, granted the seven powers of conservatorship.

So, that's it.

My main thought is whether I check the box next to the word Guardian or the box next to the word Parent - Mother on future official documents.

Does anyone know? I'll wait for an answer. I'm still waiting.

I've got the whole world in my hands

for Sara, Maggie and Sally

A couple of pieces of mail that were shoved through the door slot today looked as if they'd been chewed. I swear I saw teeth marks on the corners, and one was ripped.  Something had chewed off the corner of the confidential report of Sophie's conservatorship, submitted to the judge downtown. I sat on my bed and read the recommended seven powers that The Husband and I would "gain" upon the judge's decision later this month. Los Angeles is beautiful today, like most other days and despite yesterday's mayhem in Santa Monica, the sky is still blue and the bougainvillea riotously pink. The breezes are blowing even as sirens wail.  The Limited Conservatorship law recognizes the important principle that persons with developmental disabilities should not, on the basis of their disability alone, be deemed  unable to exercise certain rights, I read. The sky is still blue and the bougainvillea pink. It is not likely that she could respond appropriately to an emergency, such as an earthquake or a fire. Breezes blow and sirens wail.  I also received a copy of my poet friend Sara's new collection called Lake Effect, and opened to the world has broken blazing from a poem titled Tree of Heaven.  In another envelope was a gift for Sophie from Sally and Maggie of Maggie World, a beautiful necklace that spelled out DREAM. Again, given her significant deficits in communication, self-care and self-safety, the Regional Center recommends granting the power to consent or withhold consent to marry. If I were more beast than human, I'd chew the rest of it up, read only the poetry and swallow, a dream around my neck.

The Penultimate Stage of Conservatorship

The Conservatee

I say cool, and dig all jive,

That's the way I stay alive.

My motto,

as I live and learn,

is

Dig and be dug,

In return.

Langston Hughes

We had a visit today from a representative of our Regional Center who is required to file a recommendation with the court regarding our petition to gain guardianship of Sophie, now that she is eighteen years old. The visit went as smoothly as one would hope, given that we discussed what is called Powers Sought and the Corresponding Rights to be Limited. In the interest of educating readers, particularly those who will go through this process when their own child comes of age, here are the powers sought:

1. The power to fix the residence of the conservatee.
2. The power to consent or to withhold consent to medical treatment and to make decisions concerning the medical treatment of the conservatee.
3. The power to contract for the conservatee.
4. The power to access confidential records and papers of the conservatee.
5. The power to make decisions concerning the education/work programs of the conservatee.
6. The power to make decisions regarding the conservatee's social and sexual relationships and contacts.
7. The power to consent to marry for the conservatee.

There are few words to describe what was, at best, a pleasant conversation with the representative. The feeling I get when these sorts of things transpire is at once obliterating and grounding. 

In a couple of weeks, The Husband and I will complete this process and appear in front of a Judge with Sophie. 

Bougainvillea, Conservatorship and The Ministry of Silly Walks

I yanked my car hard to the right, parked it and jumped out to take this photo. Pink, shocking pink paper -like bougainvillea against a blue sky. I just drove back from Pasadena, where I attended another conservator clinic. The foundation holding these clinics and helping us to gain guardianship of Sophie is incredibly efficient and well-organized. It's also free. Praise the good lord on that one. The universe is abundant. Basically, we're given a folder with stacks of paper, documents that we have to go through and sign, one after the next. When we're finished signing, we're told where and when to show up next. The people sitting around the table are Hispanic and Vietnamese, African-American and Australian. We all have a child, recently turned eighteen ,who for various reasons cannot make decisions for herself, and we all share the rueful smiles and sighs that those caught in interminable bureaucracy learn to sustain themselves. No one argues when the elderly volunteer woman tells us not to open our packets until she tells us to do so. The Husband, Sophie and I will make our court appearance in June, but before then, Sophie must be served a petition, a stack of papers, basically, that someone over eighteen years of age must hand to her. Literally. The elderly lady demonstrates this particular course of action with a young man in a wheelchair in the room. She takes the stack of papers, says the boy's name -- he is busy, twirling, twirling, twirling a small piece of paper -- and places the stack in his lap, where it rests for a moment before the young man brushes it lightly with his fingers. The lady next to me looks confused and turns toward her interpreter. I imagine her culture prevents her from grasping the irony of the situation, and I imagine the interpreter breaking through irony to express the literal. You must have another person, over the age of eighteen, hand the documents to the conservatee, the elderly lady states again, and the rest of us nod our heads. That person must then fill out this document, she continues, and we all flip through the next carefully clipped set of papers, and mail it back with this envelope. 

The clinic takes little more than an hour, and we each leave with a manila envelope stuffed with papers. My anxiety about this process has turned, quite dramatically, into resignation and even amusement. To tell you the truth, I'm actually looking forward to asking one of my friends to serve the papers to Conservatee Sophie. I intend to be the Minister of Silly Walks when it's time to drop that set into the mail.