Introduction, part four

I realized tonight that my introductions were incomplete. I forgot to introduce my furry "kids."

This is Coolie, striking his best pose for the cover of the LL Bean catalog, in a rare Texas snow. I found Coolie at the Arlington city shelter.

This is Banjo. No, he is not a beagle on steroids...he's a Treeing Walker Coonhound. Walker hounds have been known to actually climb trees in pursuit of a raccoon, but Banjo has not yet displayed this talent. I found Banjo at an SPCA shelter up by the Texas-Oklahoma border.



This is Blossom, pouncing towards Coolie. She's supposed to be a pointer/Staffordshire bull terrier mix. I got her from the Irving city shelter on her "disposition date", ie, the day she was scheduled to be disposed of (euthanized).



And this is Boo, our most recent addition. He, too, is a Walker hound and was in a city shelter in Texarkana. He was rescued by a rescue group on the day he was to be euthanized and was in pretty bad shape. He evidently has been mistreated somewhere along the line, and we are still working on getting him to trust people.




My dogs bring me so much happiness. I encourage anyone who wants a furry friend to consider adopting a dog from a shelter. There are millions of dogs euthanized in this country...wonderful dogs who deserve a home and family, a full tummy and a warm bed, companionship and loyalty.

Feeling festive!

This evening Gabriel, Marcus, and I went downtown to the Main Street Arts Festival. We headed straight for the Sundance Square stage, where Terrance Simien and the Zydeco Experience would be performing.

This is a view of a high rise apartment building that has a bit of history. In the year 2000, a tornado tore through downtown Fort Worth and caused severe damage to this building, which was at the time the Bank One Tower. It was scheduled for implosion a year later, but the demolition was called off and the building was later refurbished into lofts and condos.

Here's Gabriel in front of a mural celebrating Fort Worth's western heritage.

And here are Marcus and Gabriel waiting for the concert to begin.

We didn't have long to wait...soon Terrance Simien and his zydeco band came onstage.

We had a good time. I'm not sure the boys particularly liked the zydeco, but they seemed to enjoy the festive atmosphere. And we ran into two old friends of Marcus'...two young women who were classmates of Marcus and Jesse way back in their early childhood class when they were 3 years old! I was the girls' therapist when they were in elementary, so I knew them well and also knew their parents pretty well. Their parents were with them tonight, so it was quite a happy reunion. After the concert we ate at Billy Miner's Saloon and then walked around the festival a bit. It was a fabulous spring evening and a wonderful night to stroll around downtown.

Why won't they take their medication?

How many times have you heard social workers, doctors, and police officers bemoan the fact that people with mental illness just won't take their medication? Particularly after some tragic crime is committed by an individual with a history of mental illness, the litany begins. The experts explain the various reasons those people won't stay on their medicine: they start feeling better and think they don't need it any more, they don't like the side effects, they forget. But there's one reason the experts never mention...there are so many obstacles thrown in the way of even getting the medication that many poorly functioning folks probably give up.

Ever since Gabriel got out of the state hospital a year ago, getting his medication has been a source of constant frustration for me. Because the medication he's on has a high risk of very serious side effects involving liver function, initially he had to go for blood work every week. Now he goes every 2 weeks. The scrip has to be presented in person and the blood work has to be faxed to the pharmacy before it can be filled. The medication is so carefully controlled that only a handful of pharmacies are allowed by the government to dispense it. For a solid year, I was told that we had to go to a specific pharmacy, which I not so affectionately came to call "the pharmacy that time forgot." It was inconveniently located, was open limited hours (closed at 6 PM on weekdays and at 1 PM on Saturday, not open on Sundays), and was staffed by the rudest bunch of people you'll ever meet. Most of the time the blood work had not been faxed, so I either had to wait an hour or come back another time. For many months, the medication could only be dispensed 2 weeks at a time, and, since Medicaid only allowed 3 prescriptions a month and Gabriel took other medication, sometimes we had to wait until the first day of the next month to get it filled. (I finally got smart and started paying for his cheaper drug out of pocket, so as to reserve the Medicaid for the more expensive drug.) The upshot was that most of the time, getting his medication involved 3 trips to the pharmacy, during working hours. Finally a couple of weeks ago, after a year of dealing with this pharmacy, and making my dissatisfaction with it well known to MHMR, someone bothered to tell me that I could go to another pharmacy on the list (even though they had told me at first that I couldn't). There was a 24 hour CVS pharmacy on the list. I thought my problem was solved!

But, no, last Friday I took the scrip to CVS, and they said they'd have to wait for the bloodwork and that they had to order the medication anyway, since they didn't have it in stock, so it would be Monday before I could get it. I went back Monday after work and told them I was there to pick up Gabriel's meds. They said they had to get it ready. After I waited 45 minutes, they called me to the counter, to tell me that they hadn't got the bloodwork. I called MHMR the next morning, and yes, they had faxed the bloodwork. So they said they would fax it again. I went back (are you keeping count? my third trip), and was told they hadn't got the bloodwork. I informed them that it had been faxed 2 times! They let me have the medication. Time to try yet another pharmacy on the list...

Well, my point is this...if everyone agrees that it is a challenge to keep schizophrenics on their meds, it seems that it would be a good idea to make getting the medication as easy as possible. Every time this happens, I think about how frustrating it is to me and how much time and effort it takes to get 2 or 4 weeks worth of medication. And I can't help but think about how, if Gabriel were living on his own, there is NO way he would be able to jump through all these hoops to get his meds. There's the lack of motivation, there's the poor memory, there's the lack of transportation. He would have been off his meds long ago if it were up to him to get them.

So the next time you see some expert, wringing his hands on the news after some tragedy, talking about how "those people" won't take their meds, call up the local news affliliate and tell them that the system bears a large share of the responsibility.

Introduction, part three

Now I turn to my "kids" who have chosen not to be part of my life. I'll try to be as diplomatic as I can, but understand I am sometimes very (dare I say it?) bitter about their rejection after I did so much for them.

Leslie, now 23, came to us from Korea at the age of 3. As you can see from her picture, her circumstances in Korea were pretty dire and her future likewise was pretty bleak. She has severe cerebral palsy and is totally dependent on others for all her personal care. She is also intelligent. When she was about to enter kindergarten, I insisted that the school district educate her in regular classes, which at the time had basically never been done in our school district. She now lives on her own with a part-time caregiver to help her and she attends community college.

Hollis, now 24, also came from Korea at age 3. He has mild cerebral palsy and has many indications of Fetal Alcohol Effect, namely poor cause and effect thinking and an inability to learn from his experiences. He works in a nursing home and lives with his brother Cedric.

Cedric, now 25, was also adopted at age 3. He has spina bifida. He does not work but lives on his own with Hollis.

Kristina, now 26, came from Russia at the age of 11. Her history and some of her personality traits also indicate the possibility of Fetal Alcohol Effect. She definitely had attachment disorder, and never bonded with me and never even referred to me as her mother (in conversation she referred to me simply as "she"). She could never forgive me for taking her from Russia and her favorite housemother, even though the housemother was desperate that Kristina be adopted because "there is only one future for a girl with black skin."

Misha, now 23, came from Russia at the age of 10. He was born with a form of dwarfism and had gone straight from the maternity hospital to a baby home (orphanage for kids under age 3). He stayed there until he was 10, because the director knew that the next and last stop for Misha would be a bleak institution for "invalids." He lives on his own and works at a movie theater.

Sergei, now 26, came to us one month shy of his 15th birthday. Like Kristina, he had been in children's homes since the age of 1, abandoned because he was biracial. He is a highly intelligent young man, but his emotional scars from being abandoned and from the devastating effects of Russia's racism run deep.

Suffice it to say that early neglect, abandonment, and abuse took their toll on these kids. And parenting them definitely took a toll on me. I was assaulted and emotionally abused. One child threatened to burn down my house (we found matches squirreled away in his drawer). For many of them, I was the convenient target for all the anger they felt for their birthmothers. All I can say is that I did the best I could, and the one small comfort I have is that the 5 who came from other countries got the opportunity to get an education which they never would have had in their home countries.

Introduction, part two

And, continuing the introductions:

Gabriel, about to turn 22 at the end of this month, came to me at the age of 5 months...the only one of my children who came to me as an infant. So, in my mind, he's always been my "baby." His birthmother was schizophrenic, so delusional that she sometimes thought she was Tina Turner, sometimes a white woman from California. She did not realize she was pregnant until she was about 8 months along, so she had still been getting injections of a powerful antipsychotic medication during the pregnancy. Gabriel appeared normal at birth, but at the age of 1 month became jittery and developed high muscle tone. Doctors suspected seizures and cerebral palsy. Over time, both diagnoses were ruled out, but they were followed by many more. As a toddler, he had speech and language delays. In elementary school, he had successive diagnoses of ADHD, obsessive compulsive disorder, depression, and Tourettes syndrome. But he was a charming, goofy kid...one speech therapist who evaluated him wrote "too cute!!!" in her observation notes. Then things got more complicated when he was in middle school. At the beginning of summer after 6th grade, I gradually came to realize that Gabriel had virtually stopped eating and was exercising for hours. He soon started to look shockingly thin. The pediatrician took a wait and see approach for a month, while Gabriel's weight continued to plummet. By the time he was admitted to an eating disorder program at a children's hospital in Dallas, he weighed 69 pounds...he'd lost about 30 pounds in a month. He was hospitalized twice, for a total of 5 months, that year. It was during his second hospitalization that the doctors diagnosed him as psychotic. But during the next 5 years, his psychosis was characterized by some skewed thinking and poor motivation. Then, in July 2006, over a weekend, he became somewhat moody and obsessive about certain thoughts. One evening, as I was walking through the den, he told me that I needed to put some curtains in the back windows, because someone was trying to kill him. When I pressed him to elaborate, he clammed up, saying, "I've said too much already...they'll kill me for sure now." He would say no more. I was unsettled, but we don't live in the best neighborhood, and I thought it was conceivable that some punk had made an idle threat. Later he came to my room, asking about police protection, whispering, closing the A/C vent. He said the people were trying to kill him because of something he had told me and Marcus at dinner a couple of nights earlier. But how would they know he had told us, I asked. He looked at me incredulously. "You don't know???? The police are in the room upstairs, listening to everything we say!" I realized that he had had a psychotic, paranoid break. Luckily I was able to convince him to go to the hospital. Incredibly, they didn't even want to keep him there and were going to just send him home. I convinced them to keep him a few hours for observation...a "few hours" turned into 7 months, as his condition quickly deteriorated and he was committed to the state hospital. I was shaken to my core. For months, he was unable to understand the simplest bit of conversation, he was so absorbed in his hallucinations. He moved unseen objects and talked with unseen people. He's been home for a year and does OK...considering. Schizophrenia has been worse than I ever expected and I am often disheartened at his present condition and fearful of his future.

Tevis, 18, came to us at the age of 16 months. Like Jesse, he had been diagnosed as having cerebral palsy and developmental delays. I have to admit, I thought that he might overcome his delays as Jesse had. But he didn't. He is moderately retarded, hyperactive, and has had severe behavior problems. He has to be supervised every waking minute, and actually during the night as well, as he wanders and gets into EVERYTHING while everyone is asleep. I decided to place him in a group home several years ago, when the school started calling me frequently to tell me to come pick him up as they couldn't handle him. I'd been through that with Marcus and knew that it was almost impossible to hold down a job under those circumstances. I wish I could manage Tevis at home, but it's not possible. He comes home several weekends a month. When he's not acting out, he's SO sweet, loves to help, and comes out with some really funny comments. After 7 years on a waiting list, he finally got on a state program that pays for a higher quality group home with only 3 residents. Tomorrow he's going with other clients on a cruise to Cozymel!

That wraps up the introductions to the kids who remain part of my life. In my next post, I'll introduce the rest of my kids...

Introduction

I started this blog with one thing in mind, but am beginning to change my idea of what it will include. When I began here, my main blog was on Yahoo 360. I considered that blog to be my personal blog, since it was on a social networking site. In my mind, the 360 blog would be the one which detailed every day events and thoughts in my life for my circle of online friends. I saw this Blogger blog as something a bit more literary, a place for some of my favorite essays and poems. But Yahoo 360 appears to be in its death throes, so I've been spending more time browsing blogs on Blogger. I've found some fascinating blogs, many of which fall into the more personal journal category. So I've decided to make this one more of a personal log, and I realized that, if I'm going to do that, I ought to introduce folks to the cast of characters who might be appearing here.

In my earlier post of my obituary, I've already given an overview of myself, so I'll move on to my 10 "kids." First I'll introduce you to the kids who remain an active part of my life:

Jesse, 28, was adopted when he was 2o months old. He had a diagnosis of cerebral palsy and was considered mentally delayed as well.

Well, yes, he did have mild cerebral palsy, but he turned out to have an IQ in the superior range. By fourth grade, his vocabulary and reading skills were on a college level. But he never did that well in school, and by the time he was 11, he began to display serious behavioral problems. This was a long time ago, and not that much was known about attachment disorder, so I had not realized the serious effects of his early life experiences: born 10 weeks premature to a teen who had already planned on giving him up for adoption, spending months in NICU with no one to bond with, moved to a foster home and then to another a year later. I would later learn much, much more about attachment disorder. So he acted out, ran away, got involved with drugs, etc. He spent some time in residential treatment, got kicked out, came home, and ran away for good, eventually living with a much older partner. He cared for this man several years as he battled AIDS and cancer. When his partner passed away, Jesse went through a rough period, hooked on painkillers. But a couple of years ago, he suddenly decided to get his life together. He got his GED and enrolled in cosmetology school. He graduated a year later...the longest he'd ever stuck with anything! He's currently working full-time as a stylist. He has long been destined for this vocation. When he was 2 or 3, he was obsessed with Snow White. He dressed up like her, listened to the soundtrack for hours, staring at the pictured 33 rpm album spinning on his Fisher-Price record player, even went so far as to offer a plastic apple to a stranger in a doctor's office waiting room, saying, "Would you like a bite of my poison apple?" But at the age of 4, Snow White gave way to Cindi Lauper. He brought home a little book of nursery rhymes he made at preschool, with a memeographed page for each rhyme. Jack B Nimble had flaming red hair. "That's Cindi Lauper/Jack B Nimble!" he explained. Each time I see Jesse now, his hair is a different color, sometimes purple, sometimes blond, and, yes, sometimes Cindi Lauper red.

Marcus, now 27, came to me at the age of 3, ten months after he had been brought to the ER semicomatose, with a severe traumatic brain injury, 3rd degree burns, detached retinas, and broken-out teeth. This severe battering was the culmination of 2 years of ever increasing abuse at the hands of his birth mother. Tragically, CPS had had an open case on Marcus and his twin brother most of that time, but chose to leave them in the home, in spite of both boys having broken bones, numerous bruises, and increasing signs of emotional disturbance. Marcus' injuries left him legally blind, paralyzed on his right side, and with severe learning problems. He was also prone to unpredictable fits of rage, due both to the brain injury and to the emotional scars of the abuse. But for many months, each night I would rock him, and the bond of trust between us grew strong. At home, he was loving and playful, but at school he was often withdrawn, electively mute, and unpredictable. When he was in 4th grade, his PTSD reached its peak, and he began running away from school in a blind rage (and the school just let him go!). So I quit my full-time job and homeschooled him during his middle school years. It turned out to be the right thing for him. He felt secure and safe at home and was able to work through his PTSD. By the time he returned to high school in a vocational program for disabled students, he was mellow, got along with everyone, and, according to his teacher, was like her personal assistant, he was so helpful. At last the rest of the world saw the Marcus I had always known! Marcus lives at home and would like work, but hasn't had any luck finding employment. He developed seizures a few years ago and just had 2 operations on his foot, so medical issues still affect him. Of all my children, Marcus is the kindest, most loving one, so amazing when you consider the horror of his first two years.

Well, this introduction will obviously take a while, so I think I'll do it in installments. So...to be continued.

A moment of despair

I lost it last night. I'm talking free-flowing tears and the occasional sob. And what brought me to this point? A box of laundry detergent.

Let me explain. I came in from work with aching legs and fairly exhausted after staying up until 3 AM to finish my paperwork. The first thing Gabriel said to me was, "I was going to do my laundry, but I couldn't get the box of soap open." I struggled to contain my overwhelming feelings of frustration. This isn't the first time this has happened. I have shown him several times how to pull the paper tab and pull the strip around the top of the box. I showed him once again. All evening long that box stood as a symbol of what the schizophrenia has taken from him. And, finally, after he went to bed early, I dissolved into tears of despair.

When most folks think of schizophrenia, they think of the "positive" symptoms: hallucinations, paranoia, delusions. And, believe me, Gabriel has had his share of those. He reluctantly admits that he still hears voices on a daily basis. But it is the "negative" symptoms that are the insidious, truly debilitating aspect of the illness. There's the lack of motivation, the flat affect, the lack of social skills, the neglect for basic hygeine...and most of all, there's the cognitive deterioration. Reasoning, memory, problem solving...all of these have suffered. One day I can spend 10 minutes telling Gabriel how our dog Blossom did at her obedience class, and the next day he asks me, "How did Blossom do at her class?" It's sort of like watching a 21 year old suffering the early effects of Alzheimers. It's so depressing and brings such a sense of loss.

And it's so frustrating to know that no one is addressing these major problems of his. MHMR dispenses medication and does the required bloodwork, and that's about it. I've researched online for resources. There's a program that sounds really comprehensive, with cognitive retraining, transitional living programs, family programs, etc...but it's in Connecticut. I did find a clinical research project being conducted by the NIMH in Bethesda, which is recruiting volunteers. The focus of the research is to determine the extent to which cognitive deficits are the result of the disease or the result of the medications' side effects. While the research isn't aimed at improving the lot of the individual participants, the volunteers will benefit from the expertise of the NIMH professionals and the programming there. I haven't yet proposed to Gabriel that he should volunteer. I don't have very high hopes that he will. First, he has little self-awareness of his condition or his limitations. Second, I think it will be difficult to convince him to voluntarily return to a hospital setting for six months. I keep waiting for a good time to broach the subject. Perhaps last night's episode with the detergent box would have been a good opening...

Sunday mornings

Yesterday, as I was out running some errands, doing a bit of shopping and picking up prescriptions, I found myself reflecting on Sunday mornings. As I looked back on so many years, those Sunday mornings seemed to be the chronicle of my life.

My spiritual journey is represented by the succession of churches I attended over the years. Unitarian, Quaker, Lutheran, Methodist...various expressions of faith, until at last my faith faltered. As a single person I found Sunday mornings a retreat into the sublime. As a single mother, I often found them to be an exercise in strained patience, as I struggled to get everyone ready and out the door and to make them behave during the service. (I don't miss those days!)

I remember having a definite leisurely ritual on Sunday mornings, with a steaming cup of coffee and my Sunday paper. But gradually that ritual faded, as the internet took the place of my paper.

Sunday mornings often meant excursions...to Dinosaur Valley, to the dog park, to the zoo.

That leisurely feel of Sunday mornings often offered the time to get in touch with loved ones. For many years, I would frequently talk with my friend Donna (also a single adoptive mother) for hours, catching up on the week's events and the latest frustrations with our kids. For a period of time a few years ago, Sunday morning was the time I wrote lengthy letters to my son in prison.

In more energetic days, Sundays would find me on some back road, gathering rocks to build flower beds. Or I would spend long hours working in my yard, planting and mowing and mulching.

And so, what do Sunday mornings represent in my life now? I see a certain emptiness...the loss of faith, the isolation, the lack of energy and motivation. They often evoke frustration with myself, as I see another weekend slipping by with so little accomplished. They are often a time when worries about Gabriel and my mother will not be silent in my mind. Hopefully this is just a phase, another detour on the journey...