True colors

So Bevin pulled out the stops her first night. She spent a good deal of the time being oh so charming. Smiling, eating well, hanging out with the girls for the evening, playing with the toys. The other girls want to mother Bevin, treat her like a little sister. So they were being excited, welcoming, etc.

Everything seems to have gone well until after Bevin’s shower, Lizelle gave Bevin her shower first, so that she had time after she was finished when Lizelle was busy. The time just after Bevin has had a bath or shower and changed her clothes is the point at which she seems particularly vulnerable to one of her puffing/anxiety attacks. And she put on quite a show, apparently. While Lizelle was in the bathroom downstairs, Bevin went into the bathroom upstairs and cleared off all of the surfaces, in her most violent manner, breaking some knick knacks in the process. Then she ran into the bedroom of one of the girls upstairs and cleared off all of her surfaces (thought I don’t think she broke anything there). She also tried to raid the refrigerator. When Bevin’s new roommate, Jill (a very sweet autistic woman) started to scold Bevin, tell her not to do that, Bevin actually managed a full sentence: “J (for Jill) shut up!”

At that point Lizelle arrived, finally got Bevin to settle down by sitting with her stroking her hair, cuddling with her--such good instincts. And then the good Bevin kicked back in, started smiling and babbling about Mommie. . . . . . .

I went over there mid-day today to talk to Lizelle. Luckily she was fine about what happened, felt like she had an idea of what to expect, how to handle this. Clearly, it’s probably best to leave Bevin’s shower until last. That way she’s more likely to stay in hang-out mode with the other girls. Lizelle will set it up so she can spend time with Bevin and help her through her vulnerable period after her shower. We talked about other possibilities (including, I’m getting Bevin her own TV for private Barney viewing when nothing else will do).

I was glad to hear that Bevin’s fit was outdone by Jill at her arrival, and even one of the girls, Ginna. Jill had managed to break windows and pieces of furniture. Now she’s mostly a lamb. So despite Lizelle’s quiet way (and she’s actually smaller than Bevin), I’m thinking that she may well be equal to Bevin.

Bev moves in

I took her clothes over earlier in the day. I took her over at about 4:00 and stayed until 7:00 or so. Bevin liked the place, liked the girls. Was happy, pleasant, pretty charming. Ate a good meal. I joined in. Took lots of pictures. Hung out with the girls. Bevin is taller than the care giver. Which means that Bevin can’t be consistently aggressive and stay there.

I’m hoping the good atmosphere, the fact that she will be busy, and that things will be happening between the girls. (All of the girls are much higher functioning than Bev, inclined to be protective and friendly.) These facts on the ground will, I hope, keep her well behaved and engaged. She is well behaved at Sarah’s, interestingly enough has more problem with me. I think because of the one to one time.The fact that I’m quiet, not that interesting. And that Bevin must make some decisions on her own to keep her life interesting around me (something she’s not that good at) rather than going with the flow. . . . . . . .

I hope so. This is a very sweet, loving place. I’ve done my part. I long to have Bevin do well here. It’s up to her. Which is the scary part. I’ve done what I can to charm, prove she has a supportive and loving family, buried folks in pictures of cute families and stories of Bevin as charmer. . . . . .

The Castle

Okay. It’s not that bad!! But over the past couple of months I’ve often wondered whether I am on the outskirts. The logic of the world I’ve confronted trying to find a place for Bevin has often left me mystified.

The immediate incident that has sent me along this path of contemplation:

I found a good day program for Bevin. Her soon-to-be roommate at the group home she will move to on Monday goes to the same program. The roommate travels to the day program with a transportation service called Hope Link--three days a week. Bevin will be going to the same program five days a week. So it seems that it should be a no brainer to have Bevin travel on the same bus, the Hope-Link bus, too. But. . . . . . The rules have changed. The center in Bellevue (this center is in Issaquah) is a few miles closer. Hopelink will only take her there. (Though they will compensate me for the cost to have her use a different service, that won’t be available for 4 to six weeks). No matter that the trip to Issaquah takes 10 minutes along i_90 and the trip to Bellevue takes 30-45 minutes along the 405/520 corridor (hell holes of the Seattle area commute).

(Though there is footnote to this narrative. The director at the Issaquah program talked Hope Link into taking Bevin to the program until June--by which time I should have the other program, subsidized by Hope Link, available.)

I’m sure there is a logic that I am missing.

Certainly getting to the point I could actually call real people who run group homes and day programs was rather indirect. Like going through a series of entries, with a warrant for entry (paperwork that made it through the system):
        1.        I couldn’t apply for services until Bevin was living in Washington. That meant that I filled out the paperwork and waited until I was told that once I apply she would qualify. (This took a couple of weeks.)
        2.        Once I had Bevin in Washington, I called. Then they put her paperwork into the system. After 10-14 days, I was assigned a DDD (Developmental Disabilities Division) caseworker.
        3.        In the meantime, I went to the Social Security Administration, assured them that Bevin had moved to Washington, had me assigned as her SSI Payee--and was told to wait for the paperwork to go through (and her SSI to begin coming to me)
        4.        I called the DDD caseworker; we played phone tag and then she finally got back to me and made an appointment--in approximately a week to ten days.
        5.        This was the “intake” caseworker. She did the intake discussion (the short one, less than an hour). Then she warranted that I could go on to the next step.
        6.        We waited until another week until Bev’s SSI information went into the system (another week). Then she assigned me the caseworker of the next level.
        7.        So I called him, played phone tag, finally made an appointment--for 7-10 days hence.
        8.        He came to our house and did the “long” interview--this one took two hours. Then he had enough information to present Bevin’s case to the group family home crowd.
        9.        So a week later he gave me the names of family homes. He also gave me the names of some day programs.
        10.        So then I made the calls and made the appointments to meet the family home directors. (Another week.)
        11.        Then I went to visit the homes, identified two that might be possibilities.
        12.        Then we had to have all the paperwork sent to them (took another few days).
        13.        And finally I identified a home--waited the best part of another week until I was accepted.
        14.        And so at this point we begin talking about the day program, the group home.
        15.        But my caseworker knows nothing about how things are paid for, what my next steps are.
        16.        You guessed it!! I have yet another case worker. The family home caseworker. He is the one who seems to hold the secret information on how things are paid for, what I need to do next.
        17.        So now I’m playing phone tag with him. I’m hoping this doesn’t take too long.
        18.        At least Bevin is supposed to move into her home next Monday. . . . . .

And I’m exhausted. . . . . . .

Found a home

Bevin is going to move into the home that is closest to Sarah’s house. It will be easy for her to include Bev in more spur of the moment kinds of things with her kids. It will be easy access for me off the easiest freeway here. So the location couldn’t be better.

The girls there are all higher functioning than Bev--more language, some of them even read and have jobs. . . . . I’m hoping this will be good for Bevin. It will mean more is going on. I just hope she behaves and fits in. It would be sad if she couldn’t.

Today we’ve been shopping for a bed. I will probably have her move in by the end of next week. That way, I’ll be able to get a sense before I have to go back to work about whether the placement will work. I’ll still have a little time if somehow it doesn’t.

Wish Bevin luck!

Visiting

I spent today visiting two homes where Bevin might live. I liked both women who manage the two homes. One exists. And the other is a new home; it doesn’t exist yet. I vote for the one that exists. But I realize that I am “auditioning” Bev, and I’m not sure she’ll get the part. Maybe in either home. My first choice. A home that exists. The girls are all much more accomplished than my Bev. They talked to me. One even asked me about my job. Bev would be the least accomplished of the group. She liked the place. She met her potential roommate--an autistic girl who is apparently more accomplished than she presents. Bevin liked her. She remembered her name. And when we left, she said, “bye ja (read Jill).” Not sure they’ll choose Bev.

The other home is a theory. A nice theory. I liked the woman. She has other homes and she is smart, in touch. I would assent to Bev living there. But I didn’t see the home as a living entity. It's assemgling. I liked the vibes in my number 1. I could see that organism.

Stay tuned. Maybe neither will want Bev. . . . . Who could imagine that?

Mommy and Me

Bevin can be weirdly wonderous. This is her masterpiece: she pronounces the consonant sound “M” for two words only, Mommy and Me. For all other words, “M” becomes “W.” Hence Milk is “Wa.” Water is “Wa.” Matt is “Wa.” Mike is “Wa.” Mommy is Mommy. Me is Me.

Even Freud would smile.

I’ve spent six weeks now with Bevin--pretty much full time (with the general exception of one overnight with her sister and family per week). It struck me recently, that this devoted one on one has not happened for the two of us since Bevin was a very small, nursing baby. Even then, I left her with her father, I left her with babysitters, and I left her with her siblings. By the time she was three, I was leaving her at a day care center--lots of kids and people. So despite the way Bevin’s language (admittedly limited and perhaps as a result more eloquent) focuses on the isolated dyad of Mommy and Me, our life hasn’t. Which makes the past six weeks all the more instructive.

I came to this experiment with hope. I would detox my daughter--love her, feed her, walk, ride, sleep. And we would arrive at the sweet, wild child I have in my heart, I remember from her babyhood, toddlerhood. . . . . Mommy and Me. The cure.

Ah those twisted family plots. This is partly true. Bevin is happy. She loves me, she cuddles, we have great times together. We love to drive, we love to walk. I’ve discovered that Bev is great in coffee shops and bars--any place where her focus can be on a good drink (for her a soda, or in Bevin speak, “pa” or “poppie.”) But I am now also confronting those epic narratives about mothers and daughters, Mommy and Me. One on one can be more challenging than one in a group. Especially for Bevin, who doesn’t have a great deal of commitment, goal oriented behavior. It’s easier for her to encounter me, love me, fight with me, disobey me, than it is to work herself up to such battle in a group.

Sometimes Bevin seems out of time, out of place. A world to her own. And then I push a bit deeper and I find a truth about the most common place things we do. Mommy and Me. Continuity. Disconnect. Love. Fight. Me. Other. It’s how we come to who we are. Bevin is so very human. And that means, oh so complicated, frustrating, frightening, intriguing, wonderful.

A Bevin whisperer

I want to be one. This is now my goal.

Bevin can be scary when she cycles out of control. Not often. But often enough to require attention. She dips down into a well of anxiety and discontent. She runs about the house. She flushes toilets--again, again, again, again, again, again. . . . .. She begins puffing, spitting (not sure how to describe this very weird behavior). If you impede her progress in running about the house (and flushing toilets, and puffing) , she is way pissed. Throws things, big things (a toy microwave, a lamp, a vase, anything at hand . . . .). And she is aggressive. That means she hits--me, if she can.

What to do? I love Bevin. I find her charming. Even at her worst I’m scared, but intrigued, interested, engaged. I’ve always thought of Bevin as my wild child. So I forgive her beyond what I can sustain for others.

The basic task: to control her behavior to the point that others will find her as charming, intriguing, lovely, as I do. And treat her the way they would any charming, intriguing, lovely, young woman. I find myself returning to two memories that are weirdly parallel, in synch. Which makes me pay attention.

Number ONE: Last fall, my husband and I visited my son and his wife. And I learned about how to be a dog whisperer. My son’s wife (SW) had rescued an enthusiastic, badly behaved black lab from certain death. Maggie. Smelly, loving, on the edge. SW was clear on these basic principles. Here’s what I remember:
--You (person, homo sapien) must establish yourself as alpha dog.
--Establish boundaries. (For Maggie, she can go into the kitchen, the family room, the hall, the stairs, but not the living room, the computer room, or the kid’s room.)
--Reward good behavior. (For a dog, lots of pets, loves, food.)
--Make bad behavior less than pleasant. (For a dog, this means a choke chain.)
--Ignore neutral behavior.
--Do everything you can to help your dog succeed. This means lots of exercise. Letting your dog outside when she’s about to lose it.
And Maggie was making progress. She lapsed from time to time. But for the most part she didn’t come into the living room and she didn’t come into our bedroom.

Number TWO: Bevin’s first school was CBTU in Salt Lake City--the Children’s Behavior Therapy Unit(at Douglas school on 13th East). Bevin began attending at the age of three. Most of the children were autistic (Bevin never had enough “points” to be autistic, or autistic like, but she this school definitely made a difference in Bevin’s life.) This school rescued badly behaved, developmentally disabled children. Taught them to behave in a way that brought them closer to what the world expects. You attend. You don’t bite, hit, fight. . . . . You comply. This is what Bevin learned, to attend, to fit in. And this was important. The rules of the therapy unit:
--You win. Don’t engage a struggle if you aren’t willing to take it to the end.
--Establish boundaries. The developmentally disabled child (DDC) will behave as specified. Look at me, listen, smile. . . . .
--Reward good behavior.
--Make bad behavior less than pleasant--boring, a dead end. (For A DDC that means isolation, repetition, boredom. For Bevin, that sometimes meant a blindfold, not looking at her, repetition, a timeout corner, a hold to quiet her in publoic.)
--Do everything you can to help your DDC succeed. For Bevin, this means, lots of driving, walks, trips into public places where there are lots of interesting people. . . . . .

Since bringing Bevin to Seattle, I’ve been rummaging in my grab bag for tools that will help the two of us succeed. And I’ve gone back to this twinning structure--the dog whisperer, behavior therapy. Bad behavior is annoying. How to extinguish the behavior? With a a very basic creature--she just won’t listen to reason. She has no reason.

And so? I want to be a Bevin whisperer. She needs to succeed, to be lovable. And that success depends on me--the alpha dog. And she’ll be happier if we succeed. Certainly I’ll be happier if we succeed.