Saturday, March 06, 2004

It's hard to believe that almost an entire week has passed... since I last wrote

Last time I remember exhaling was some time on Sunday night, after the Academy Awards had ended (dull show...glamorous, but dull!). Dropped off to sleep only to be rudely thrust from my bed in the dead of night by another of those shrill calls from the blackness. Dorian in crisis. Nothing to be done but to slip my sweats over my peejays and into my car for the fast and furious drive down I-80 to Oakland. Can hardly recall precisely what the problem was except that it involved Kyle (her strange young man) and impending doom of one kind or another. Not unusual these days, but frustrating. The situation escalates with each day -- and fear for her safety escalates right along with it.

By staff decision, she was moved out into the community about 15 years ago -- after spending the earlier years in at St. Vincents in Santa Barbaba. She then returned to the Bay Area where she worked her way through a really exemplary program here in Oakland. This meant starting out in a very nice (safe) sheltered community setting near the shores of Lake Merritt, in a district of fine old large homes that had been in transition for some years -- from affluent to working class. 'Clausen House' consisted of a number of homes purchased within walking distance of the original old house -- the beautiful old historic family home of Justice Earl Warren -- cheerfully painted yellow and surrounded by mature landscaping and huge redwood trees. Within a six block area a cluster of beautifully restored homes had become Clausen House, each a group home holding 8-10 clients with a house manager. All were nestled into a fine lake front community of old homes and quality apartment buildings.

In time, the institution bought a four-story apartment building very close by that would make it possible for clients -- higher-functioning -- to live in pairs with staff on site. Wonderful plan that thrived during the early years when adequate funding was in place and endowments and fundraising teams of parents and benefactors were hard at work in support, year-round. This was another of the model programs that has been decimated by budget cuts over the years, and is presently facing even more -- unless private moneys can be raised with some consistency.

Ultimately, as the years passed and client pairs were adequately aculturated to community living, they were moved out into an independent living program that would continue support with job coaches, teachers, social workers, etc., thru entitlements for the mentally retarded under the Lanterman Act. Dorian progressed through all of the stages over time, and her final stop -- about 15 years ago was into her very own apartment directly across the street from the original old Earl Warren Home. Couldn't have asked for more. She had been travel-trained and moved around town on public transportation -- took BART when necessary -- enjoyed supportive-employment through a series of little jobs that gave her a sense of real independence. She handled her own finances with budgetary help and managed (with a handy little calculator) to maintain her own checking account and pay her own bills. What a success story.

Over time, due to budget cuts -- three of the six beautiful homes from the complex were sold off and resources consolidated. There had to be critical staff cutbacks and -- for those who remained -- cuts in staff time. The program began to be shaped by shrinking resources rather than by the needs of those being served. These are fine people doing remarkable work on behalf of this population. Those who moved Dorian toward that limited independence gradually began to turnover so that she rarely had the same social worker more than a few months before they'd leave. By this time the support system that made it possible her to be living on her own has all but evaporated, and (it's my sense that) there are few left who have any recollection of why she's "out there" or just how to respond to her needs. Along with staff changes, necessarily, went institutional memory. I'm afraid that I've refused every indication along the way -- that this was a failing system. Simply couldn't face moving her away from even this frail system and into something even less familiar and more threatening to her limited understanding of the world. My answer was to move closer into her life (as close as I dared to without threatening her independence) and to be less trusting of those who were working with her. I've surely added to the problem by encouraging her independence and making her a fairly strong woman who knows how to get her needs met -- come hell or high water! However, I see a tendency in the teachers now assigned to her (now many years younger than she), to deal with her in relation to her behavior rather than to her pathology. She's not easy, except for me, I think. We still have a remarkable relationship, more friend than parent. It feels like a successful and necessary transition to me. Problem is that new and changing staff isn't any longer meeting a pretty little girl, but an often obstinate middle-aged woman with a mind of her own!

Which brings us to now.

Where once there was full coverage, staff time hours now goes from 9:00-5:00 with weekends off. Kyle "lives" at the apartment building -- about 4 blocks away from Dorian's place. He is a serious alcoholic with a history of drug abuse. He is paranoid-schizophrenic, with no retardation that I can see. He is pathologically controlling, clever, appears relatively "normal" to the casual observer. To Dorian this is Brad Pitt, personified. In the world she lives in, he is the highest-functioning male around. Since her intellectual-functioning comes as the result of congenital brain-damage, she has a spread of anywhere from 4 years to age-level on test scores. She has moments of clarity that are astounding. She has an impressive vocabulary. However, for the most part she functions in retarded range. She has not yet hit a learning plateau, and still goes on learning and growing, though she can't live long enough to ever be "normal." Her abstract ability is clinically far below normal so "what ifs" are beyond her. She has no way to weigh consequences, but is beginning to approach that ability in some small ways. This means that she's developing some new fears that her deficits tend to cloud over, leaving her wary without understanding why much of the time.

The one place where we've been fortunate of late is that Dorian was assigned a terrific therapist who's been calling on her weekly and counseling by phone on an as-needed basis. What a lovely person! But the last round of budget cuts eliminated Carol from our lives about a month ago. She and Dorian were making great progress, and I had the feeling that this professional could read my daughter in ways that had never happened before. She was also a tremendous support to me, and over time, we'd become quite a team. Losing her has been traumatic to me -- and in time -- I'm sure that I'll see the effects in Dorrie as well.

All of that background was carefully laid as prelude to telling you that Kyle's alcoholism has progressed to the point where insomnia has become a real problem. With staff leaving at five o'clock each day -- he's free to roam the streets. He lived with Dorian for some time before I learned of the seriousness of his illness. In time, he became threatening to her was moved out and transferred to the more sheltered apartment house form of the program. I was relieved. It was clear that Dorian was obsessive about him and that he was being smothered by her demands for his full attention at all times. Must have been terribly hard for him. They do not have compatible neuroses, clearly. Having him live a few blocks away would allow him to be away from her smothering attention at least some of the time.

What I didn't know was that his insomnia created situations where he would arrive at her place very late at night, well past midnight. He kept his stash there. He would spend his nights drinking and playing video games in silence until dawn. The upshot of that is that her inner clock has been reversed to the extent that -- unless interrupted -- she sleeps soundly until 3:00 or 4:00 in the afternoon, making it impossible to have any kind of constructive day life. She feeds and clothes him to the best of her ability to do so. She buys him beer and liquor when he demands it. He drinks what little money he has then steals hers. She washes his clothes and spends her entire existence waiting for him to pay attention to her. Her visits home have become rare unless I'm insistent. All of the space that I purposely left for her (to grow toward eventual independence), he has absorbed. I've learned that I unwittingly left a vacuum that he's filled. Where I often left her questions unanswered, he supplied them all. She takes her cues from him. She's begun to emulate his every move and bad habit. For a time, she dressed only in black. Lost a job because of shoplifting an item (that he wanted). He'd walk to work with her and then hang out all day waiting for her to get off. Her (supported) employer, PetFood Express, simply couldn't deal with it and let her go. I soon began to smell tobacco smoke on her breath and to suspect that he was teaching her to drink along with him, though I've not seen her under the influence, except for New Year's Eve. His influence started showing up in her speech with phrases and words popping up that I didn't know she had ever heard. Her therapist explained that she was showing all of the signs of a rebellious teen. The day came when she let fall the fact that they'd been hanging out in a pool hall in a questionable downtown community. That, I think I squashed -- as far as I know.

I started shamelessly competing with him, but he cleverly picked up the game and his control of her increased. For a long time he was winning. Eventually, he began to sleep around among the women-clients, and life became harder for her. He became abusive as he found other desparately lonely women in their community. All were also severely handicapped women.

I began to fear for her ever more as the months passed. She is now on sedation but her meds ($10/100 in November) are now $300. Her living conditions are no longer tolerable, but I've been reluctant to pick her up and move her out of an environment that has held her for 20 years. It will mean having to reconstruct her entire social structure. She's known no other setting since she was a 19 year-old. It will mean travel-training and trying to build a new life for her without Kyle. There are few choices left. Her physical safety is at risk. That social safety net you've heard about has, indeed, disappeared, and Dorrie is only one of the many casualities.

So, on Sunday night I brought her home. Returned her on Monday at her insistence (and against my better judgement), only to find myself responding to another middle-of-the-night call early on Tuesday morning (2:30 am) because she'd had another encounter with him and was hysterical. Brought her home this time, complete with her two cats in carriers and more than a day's change in clothing. She began to sound as if she'd reached some level of real understanding of the ghastly situation she was in -- though it would pass -- but I made the firm decision that we will finally close her apartment, give 30 days notice -- and that she will live with me until we find some answers.

Have spent this week sharing my bedroom. She's here with her cats and a growing wariness that she's losing her independence (she speaks of it in those terms), but I'm seeing little reason to not follow through. My condo is small for two. Will have to give up my little office that will now become a second bedroom. Will look for a program for the retarded -- the California Foundation for Autism is only a few blocks away. Have had some contact with the organization through my work for the State. Am planning to take her there next week to explore the possibility of her volunteering for a while -- at least it will give her a place to begin to construct a new social set among her peers. She may even know some of those clients through her Special Olympics participation over the years. It's worth a try. Have talked with her social worker at the Regional Center of the East Bay (her agency) who will surely be of help in our transition and is fully supportive of our decision to move her here. Unfortunately, we'll be moving her from one county system to another.

With any luck, this transition period will be relatively brief. She needs to be on her own just as soon as we can arrange it. Saving up "first and last and cleaning deposit" will take a while. This time I may want to revert to a group living situation for her, but that would be a backward step, I know. She knows what it's like to be on her own and won't easily accept what she will see as regression. She'll know. I want to honor that, and I know that there is danger that I will infantalize her if this doesn't turn over pretty quickly.

What I'm thinking is that -- to move out of her home of 15 years and a total community -- will be of such powerful disruption in her life -- that I'd like to keep her with me here while she begins to rebuild her new environment and social structure. I can't see her trying to do that while living in totally new surroundings. When that's in place (or at least when it's taken root), we can begin to look for housing that isn't too far away. One day she'll live here in my condo (when I'm no longer around) so having her in this general area makes sense and some important continuity.

Today? Dropped her off in Berkeley to basketball practice for Special Olympics. She then will take BART to her place in Oakland where she wants to work on her apartment and "pick up some things." Loosely translated, "...will try to reach Kyle and see if he can come over." We've pre-arranged that I will pick her up between four and four-thirty. Will drive her to and from her place and her programs and return her home with me each evening while we figure out how to get her apartment ready for the move and her possessions packed in here someplace ... . Arrggghhh!!!!!

But you know what? Given this horrendous week of changes, I still managed to vote (as did Dorrie); to get to a potluck dinner with my friend, Jennifer, and the Arts bunch in their Berkeley loft on Monday night (before all hell broke loose!), and then -- on Tuesday -- the two of us strolled for two hours through the brilliant Romare Bearden exhibit at the S.F. Museum of Modern Art. Life stops just about there, though.

And -- I've found my tango teacher, despite all.