The writing on the wall

Remembering Anna B

2011-10-09T11:02:00.001-05:00

On this day, 120 years ago, my grandmother, Anna Barthel Adams, was born in Muskogee, Indian Territory to Frank Barthel and Mary Elizabeth "Molly" Kerr.

Molly died when Anna was only 10 years old.

Anna grew up to be a beautiful and very capable young woman. After a properly chaperoned trip to New York City to visit relatives, she announced her intention to move there and support herself by working as a secretary. Her father forbade her to do so, declaring that no daughter of his would work as some man's secretary!

Young Anna married Nathan Adams and, after their first child was stillborn, they had a son whom they named Hollis Fannin Adams. Shortly before his second birthday, he became very ill, and when the doctor came to the house and told the young parents that the child would most likely die, Nathan had to be restrained by several men as he threatened to kill the bearer of such bad news. Young Hollis died.

Hollis Fannin Adams

Soon Nathan left to serve as a medic on the battlefields of France in World War I. His letters home told of the horrors he saw there, which disturbed him deeply. Meanwhile, back at home, Anna gave birth to a daughter, my mother Esther. Anna waited until Nathan returned to officially name her daughter, so for 5 decades, her birth certificate listed her only as "Baby Girl Adams."

When Nathan did return from France, he was a changed man. Today we would say he had PTSD, but back then the condition was known as being "shell-shocked." After several years of trying to deal with his rages and drinking, Anna finally had to have him committed to a VA hospital psychiatric ward, where he lived the rest of his life. My grandmother applied for his veterans' benefits, but, much like the situation today, the VA denied that his condition was a result of his combat experiences.

Virtually a single parent, Anna had to support her two daughters in a time when opportunities were scarce for women. She began teaching in a little two-room country school, Sally Brown School, when she didn't even have a high school diploma, but she went on to earn not only her diploma, but a BA and a Masters, all while working full-time as a teacher. And I mean working! She drove the dark country roads long before dawn to get to school early, so she could build a fire in the wood stove so the school room would be warm when her students arrived. During the Depression, she gave the kids haircuts and ran a clothes closet out of the storeroom. She got farmers in the area to donate a small part of their crops and created a veggie burger made out of blackeyed peas and ground pecans. (The county extension agent did a survey of the nutritional status of students in the area, and the kids at my grandmother's school had the best nutrition out of all the schools.) That little school was the center of that rural community, and Anna B, as she was affectionately known by friends and family, was the backbone of that school for over 40 years.

Anna B with her class at Sally Brown School

Anna tried to get work as a bookkeeper, too, but no one would hire a woman for that position. Ironically the local business school hired her to teach bookkeeping to men however.

My brother and I went to Muskogee OK to stay with her for a week every summer, and how well I remember those times. We pulled into her driveway after the sun went down, and we rushed to the porch to ring the doorbell with the crescent moon glowing on it. She would come to the door, making a sort of cooing sound of pleasure at our arrival, and give us a kiss and hug, enveloping us in the smell of face powder and Sweetheart soap. We spent our week driving from house to house, visiting friends and family. I explored the books on my grandmother's book shelves, and she always gave me a few out-of-adoption textbooks discarded by the school. She had an old treadle sewing machine and I liked to give my dolls rides, up and down, on the treadle. As hard as I tried, I couldn't follow the adult conversation about relatives I couldn't keep straight, so I amused myself. (Now I wish I had absorbed all those family stories!)

Anna B passed away in 1974. On her gravestone her life is described in one word:

These are the strong women in my life who taught me by example to be capable and independent.

My mother Esther, my grandmother Anna B, my Aunt Jing

Happy Birthday, Anna B!

Justice for Kelly Thomas!

2011-09-25T22:18:00.000-05:00

On July 5, 2011 the police in Fullerton CA got a call that someone was breaking into cars near a transit hub. Officers Manuel Ramos and Jay Cicinelli arrived on the scene and saw a homeless, schizophrenic man named Kelly Thomas, who frequented the area. Since this was the officers' regular beat, they were familiar with Thomas and surely knew that he showed signs of a serious mental illness.

The officers searched Thomas' backpack and found items that they decided weren't his. They ordered the schizophrenic man to sit on the ground with his legs in front of him and his hands on his knees. Officer Ramos snapped on a pair of latex gloves, held up his fists, and snarled, "Now you see my fists? These fists are getting ready to fuck you up." Kelly Thomas, confused and frightened, attempted to move away. Ramos took out his baton, and Thomas held up his hands in a defensive posture, with palms out to deflect the blows.

Ramos and Cicinelli beat Thomas with their batons, tasered him 5 times in the course of the beating and beat him 8 times in the face with the Taser gun. Four other officers arrived and joined in. Bystanders were not close enough to visually record the beating, but their camera captured the horrific sounds of the murder: the zapping of the Taser and Thomas' agonizing screams and his repeated calls, "Dad...Dad...Dad!" The officers continued to beat him, even after he was still and making no further sounds.

Kelly Thomas was taken to the hospital. When his father, a former sherriff's deputy, arrived at the hospital and came to his son's bedside, he could not even recognize his son.

Kelly Thomas died five days later.

His father and the community demanded an investigation into the indefensible murder. Last week, the DA of Orange County announced that Officer Ramos had been charged with second degree murder and involuntary manslaughter. Cpl. Cicinelli was charged with involuntary manslaughter and excessive use of force.

This story has been so disturbing to me. Of course, many, if not most, citizens would be outraged by the deadly actions of a couple of rogue cops. Very few parents could hear those heart-rending screams of "Dad" without feeling empathy for this grieving father. And for those of us who are parents to sons or daughters who have schizophrenia, this is often our greatest fear...that someday our child will have a confrontation with police when he/she is actively psychotic...a confrontation that could end in tragedy.

I remember that many years ago, long before the onset of Gabriel's schizophrenia, there was a terrible incident in the middle class neighborhood where I worked. A mother was having trouble with her adult schizophrenic son, and she called the police for assistance in getting him to the psychiatric ER at the county hospital. When the police arrived, the son was in the front yard, wildly waving his arms. They thought he was brandishing a weapon, and they shot him dead. That incident stuck with me, and often comes to mind when Gabriel is having trouble.

During Gabriel's first psychotic episode, he had been furloughed from the county hospital, but by the next day, it was obvious that he was having difficulties. He was outside, when the phone rang. It was the local police department. They told me that Gabriel had called 911 and told him he was smoking. Of course they thought he was making a prank call and called to see what was going on. This was the first and only time that the police in our little burg showed restraint and didn't show up at our house to bully or harass us. Thank God they didn't. Gabriel told me later, when he was lucid, that he saw helicopters chasing him and people trying to kill him, and he called the police and told them he was smoking in an attempt to get the police to come. Of course, if they had come, the situation might have taken a turn for the worse, as paranoid as Gabriel was.

And then there was the five month period when Gabriel was very, very psychotic in 2008 (after the doctor monkeyed with his medications). He laughed and paced 20 hours a day. He stared at his aliens and the members of the Mafia who were threatening him. He began to curse at the mafiosos, and punch and kick at them. Most of the time he stayed in the house, but sometimes he went out in the front yard. I was SO worried that neighbors would see him out there, laughing hysterically or punching at thin air, and that they would assume he was high on drugs and would call the police. I was still working at the time, and it was so stressful to have to leave to see patients, not knowing what he would do. I don't know for sure what would have happened if the police had come, but I think it could have turned out very badly, as paranoid as he was, and as confrontational as those police officers were. When he is that psychotic, he is unable to answer the simplest of questions and unable to understand and follow the most basic directions. I have no doubt that those officers, lacking adequate training, would interpret his response as defiance and resistance.

I hope Ramos and Cicinelli are found guilty of the most serious charges and that they are given the maximum sentence. But beyond that, I hope that police departments in every city will strive to improve their training for all officers on how to best respond to people with serious mental illness. And I hope that they will always try to improve their psychological screening process for their officers, so that they can weed out officers who have a tendency towards such violent and aggressive actions.

When the world out there wants an explanation...

2011-07-11T11:53:00.001-05:00

When we are in our normal routine, everything seems pretty much, well, normal. After 20+ years together, I know without having to think about it what the boys' deficits are and what I need to do to accommodate for them. I know that if I'm standing to Marcus' right, he can't see me and if I don't speak or I'm not ready to spring out of the way, he will run right into me. I have learned not to think out loud around Tevis, because if I casually mention that one of these days I need to take the dogs for their shots, he will ask me 30 times a day, every day, "When are you going to take the dogs for their shots?" And I know that if I tell Gabriel something, more than likely I will have to repeat it, maybe three, maybe five, maybe ten times, because he didn't understand what I said in the first place or because he has forgotten what I said 30 minutes later. That's just how it is. There is no need for explanations.

But then there are times when the world out there demands an explanation, when it robs us of our sense of normalcy. I remember that whenever I had to take Marcus to the eye doctor or to the Commission for the Blind to discuss services he needed, he grew ever more uncomfortable and morose the longer we sat there discussing his visual impairment. Day in and day out, as he went about his daily activities, he could almost forget that he was legally blind, but those appointments always reminded him, like a slap in the face.

Last Thursday, when the mail came, I saw that there was a Jury Summons for Gabriel, and I knew that this was going to be an uncomfortable situation. For some reason, at the age of 59, I have never been called for jury duty, but almost every one of my kids has been. When Marcus got a summons in Texas, I just sent it back with an explanation that he was unable to read and write, and he was excused. I never said anything to him about it, because his inability to read is a real source of grief for him, and I felt he didn't need his nose rubbed in it. Gabriel also got a jury summons in Texas, at a time when he was actively psychotic. Again, I just sent it back myself, with an explanation that he was schizophrenic and hears voices. The court was more than happy to excuse him.

But the court here wants a note from a doctor in order to be excused for a physical or mental disability. Given the push for disability rights, I am not even sure that the doctor would automatically write a note excusing him simply for being schizophrenic. I considered the idea that maybe he should just go, banking on the probability that he would not be selected. But I could not knowingly put him in that situation. He almost always listens to his Walkman radio, to drown out the voices, and without the radio in the court, he would probably go to sleep and be found in contempt or something. And Gabriel has regressed so much cognitively since the onset of his schizophrenia, that I know he is not mentally capable of attending to, processing, and understanding testimony. I debated with myself how best to say this, tactfully, to him. So I showed him the summons, explained it, and asked him gently, "Do you think you'd be able to concentrate well enough to be on a jury?" I could see him debating with himself as well, and he finally said that he thought he would see if the doctor would give him a note "because of the voices." Over the weekend his anxiety level was sky-high over this.

Sometimes I'd like to tell the world out there to mind their own bizwhacks...

Father's Day

2011-06-19T11:33:00.000-05:00

Dad and Mother on their wedding day, 1937.

Mother and Dad were married 69 years. They grew up during the Great Depression and married a few years before World War II.

Dad served in the Navy and worked for the US Government after the war, retiring at the age of 59. He worked hard to provide for his family and to send my brothers and me to college.

Dad and I circa 1975.

This is one of the few photos I have of me with Dad, because he almost always was the one behind the camera.

Dad on the golf course in the early 1990s

This is really how I remember my dad the best. After he retired, he played golf every day but Sunday, until back trouble made it impossible to play.

It was only in recent years that I really understood how much my parents had been shaped by the hardships of the Great Depression and World War II, and how much they sacrificed so that their children would have a better life. I wish I had told Dad how much he meant to me, how much I appreciated all he had done for me. He died when he was 92, and it was almost as if he had lived so long, I thought he would live forever!

If your father is still living, never miss an opportunity to spend time with him and to tell him how much he means to you!

Looking back

2011-06-17T22:21:00.000-05:00

Ward at a state institution circa 1960

When I was growing up in the 1950s and 1960s, there were no special education classes in our public schools. People with disabilities were, for the most part, invisible. I remember one student in my elementary who had had polio and walked with leg braces and crutches. I remember one student in junior high who was blind and had a guide dog, but I don't know what special services he may have had. I only remember seeing three people with developmental disabilities when I was growing up. There were a brother and sister who could frequently be seen walking to Oakland Park to go fishing at the small lake. (I later worked with the sister when she was transitioning out of a state school.) The other person with developmental disabilities I was aware of was a girl who went through high school with us. I suppose her parents must have insisted that she be in school; she went to regular classes and the only thing she could do was write a few letters of her name on a piece of paper and turn it in. I don't think I ever heard her speak.

Where were all those kids and adults with developmental disabilities? I occasionally heard adults talking in hushed voices about someone who had a son or daughter "with the mind of a 2 year old." But these people were well-hidden. At that time, most parents were advised by their family doctors to place their delayed children in state institutions, and since there were almost no services in the community, most parents felt they had no choice but to follow that advice.

In 1974, fresh out of college with a degree in history and no marketable skills, in the midst of a recession, I got a job as an attendant at the Denton State School. With my vast experience of having seen all of three people in my life with developmental delay, I jumped in with both feet. I loved the kids in my charge, about 15 boys, ages 6-13. I taught them self-help skills, sang songs to them, played with them. I knew their little idiosyncrasies and what would make them laugh. Back then, state institutions were very, well, institutional. All the residents of the dorm slept in one large room with several rows of metal beds. The day room was bare except for hard benches along the walls, with a TV on a bracket up high on one wall. The bathroom was a large communal bathroom, with a row of toilets, a row of sinks, a raised tub, and a shower. The kids whose parents still came to visit them wore clothes their parents provided. The others wore clothes that were sewn by prisoners in state prisons; the outfits bore a striking resemblance to prison uniforms, in kids' sizes. I sometimes bought regular clothes for some of those kids, and my dear mother sewed many lovely dresses for the girls on the neighboring dorm. As much as the other staff and I tried, it was still an institution.

Because of this experience, I am deeply affected when I see folks with developmental disabilities out and about in our communities today. When I see them out eating or shopping with their families, watch them play basketball or run track, see them pursuing their interests like art or dancing, see them working at the grocery store, my heart soars! It is so moving to me, to think what a fundamental change has occurred in my lifetime.

Revisiting Tucson

2011-06-13T14:28:00.000-05:00

From that dark day in Tucson, I have been personally touched by the shooting of Gabby Giffords. Like most Americans, I hoped against hope for her survival and have cheered her amazing progress in rehabilitation. But I also felt a personal connection to the events because of my sons, one of whom had a traumatic brain injury like Gabby, the other of whom is schizophrenic like the shooter Jared Loughner.

Like Gabby, my son Marcus had damage to the left side of his brain, resulting in language difficulties and right side weakness/spasticity. And, like the congresswoman, he demonstrated the same drive and motivation to overcome his disabilities.

Yesterday I woke up and checked Facebook, and the first thing I saw was the new photos of Gabby, the first since the shootings. The sight of her smiling face brought tears of joy and relief to my eyes!

With the release of the photos, little notice was given to the other news from the shooting. It was reported on Saturday that Jared Lee Loughner's lawyers had once again filed a request with the court that they be notified if the hospital where he is being treated attempts to medicate him. Even though he is so psychotic at this point that he cannot even cooperate in any way with the lawyers, they argue that the medications pose a risk to him because of their side effects and that they would hamper his ability to cooperate with them in his own defense. They also argue that, since he is so out of touch with reality, even if he agrees to be medicated, he cannot actually give informed consent.

I found this article so disturbing! It is quite obvious that the only goal of the defense attorneys is simply to keep Loughner out of the courtroom indefinitely. They are acting in his best interests only as a defendant, not as a person. Making sure he stays in a severe psychosis, unable to communicate or to know what is going on outside of his head, is in his legal best interests, but I think most people would agree that it is not in his best interests as a person. I think it is very unfortunate that Loughner does not have a legally appointed advocate, who would be able to act with legal authority in Loughner's personal best interests, as a person who is very, very ill, rather than as a defendant. I know that most people don't really care about what would be best for him; they only want him to regain his faculties so he can go to trial. But, even though he is a person for whom it's hard to feel any sympathy, I can't help but feel some for him, because I know the anguish, the torture, the hell, that Gabriel lives through when he is actively psychotic. And I know that Jared Lee Loughner must be living in that same hell.

So it was a weekend of both good and bad news relating to the Tucson tragedy. I hope that Gabby is soon able to return home and continues her remarkable progress. And I hope that someone will do what is right for the shooter.

Another idea for a hands-free card holder

2011-06-08T11:31:00.000-05:00

Over the years, my kids have enjoyed playing cards, but, because of spasticity and/or incoordination, holding the cards was often an exercise in frustration. So we came up with this simple solution for a hands-free card holder. We simply found a shoebox or other box with a lid, turned it upside down, and placed the cards between the box and the lid, like this:

Memorial Day at Washington State Park

2011-05-30T22:32:00.001-05:00

We finally got a weekend without rain for the Memorial Day holiday. So we packed a picnic lunch and drove about an hour from St. Louis to Washington State Park. The main feature of the park is the petroglyphs on the rock outcroppings. It is believed that aboriginal tribes carved out shapes in the rock around 1000 A.D.

These carvings are thought to be fertility symbols.

The most distinctive carving was this thunderbird.

We found a picnic table in a shady area, with a nice breeze blowing, surrounded by the loudest chorus of locusts I've ever heard!

The Thunderbird Lodge at Washington State Park, MO.

We drove on to check out the river access (but we hadn't brought swimsuits), and then drove up to this scenic overlook over the river valley.

Scenic overlook Washington State Park, MO.

Tevis, Marcus, and Gabriel.

I'm sure this will be the first of many weekend outings, now that the weather is improving a bit. There are quite a few state parks within an hour or so of St. Louis, and, get this, fellow Texans, admission to state parks is free!

Buses, trains, and automobiles

2011-05-28T22:08:00.000-05:00

What a week! My transmission has been acting up, so I finally took it to the shop, hoping against hope that maybe it just needed some transmission fluid. (Fat chance!) I was told it needed a new transmission, to the tune of $4000. This was especially irritating since I just bought the car, a 2003 Honda Pilot, last summer. I weighed the pros and cons of fixing it, a decision I always hate. Should I pour a great deal of money into it, taking the chance that something else will go wrong, and that it will become a financial black hole? Or should I just throw in the towel and get rid of it? Well, the Pilot made that decision a lot easier two days later, when the oil pressure light came on, and then the next morning it wouldn't start at all. Bye-bye, Pilot! Fortunately, I left my good ol' Suzuki Sidekick in Texas with Jesse, and can use it as long as it keeps running. So I'm having it shipped up here.

So I reserved a rental car online yesterday and they picked me up to go get the car. But when I got there, they informed me that they couldn't take my debit card, only a credit card. It was then that I realized that my new credit card had never arrived in the midst of the move last fall. So it looked like we would be car-less until the Sidekick arrives.

So the plan for today was for Gabriel, Tevis, and me to go to the grocery store on the bus. Last night I was all gung-ho. After all, someday the guys will have to depend on public transportation, so we should start using it more often, so they can learn how to use it and get comfortable using it.

But this morning, the thought of lugging a very large amount of groceries back on the bus was daunting, plus we also needed to go get prescriptions at another store. So I discovered that I could rent a car through Hotwire using a debit card after all, and at a very good rate, if we went to the airport to pick it up. So we took off on the bus, then transferred to the rail system, which goes right to the airport. After standing in line for an hour (seems like they could have had more employees scheduled on a holiday weekend), we got the car. Then it was on to Trader Joe's and the drug store.

I was kind of disappointed in myself, that I am so dependent on a car that I couldn't do without one more than a day. What kind of message did that send to the boys? At least we did use the public transportation system to get to the airport. And I resolved today that I'll do my best to plan an errand or outing with the guys every week using the bus and/or train. As I mentioned casually to them today, "Someday I won't be around to drive you everywhere, so this is something you need to know."

Memory Lane

2011-05-23T21:23:00.000-05:00

Writing yesterday's post about inclusion started me thinking about all the activities my kids were involved in, both in the community and within our family. After all the troubled teen years, I sometimes forget the great times we had when the kids were younger. So I dug out some of my favorite photos from our favorite places or events to share with you all.

One of my favorite destinations has long been Pedernales Falls State Park, and the surrounding Texas Hill Country. Here the river runs over and around massive boulders, creating many small falls and pools.

Marcus, Jesse, and Gabriel at Pedernales Falls.

After exploring the falls, we went to a quieter section of the river to wade and swim.

Hollis, Leslie, and Gabriel cool off in the river.

In nearby Johnson City are many attractions related to President Lyndon Johnson. Near Johnson's boyhood home is the old Johnson farm. There the kids were terrorized by this turkey, who, for some reason, was attracted to their wheelchairs. (Note the look of terror on Hollis' and Cedric's faces.)

Attack of the Killer Turkeys!

Another favorite destination was Padre Island National Seashore on the Texas Gulf coast. We made several trips there and always had a great time!

Cedric, Jesse, Marcus, Leslie, Gabriel, Hollis on the beach.

Marcus and Hollis

One of my favorite pictures of Leslie!

Closer to home, we frequently headed down to Glen Rose. Sometimes we went to Fossil Rim Wildlife Refuge, where the kids enjoyed the petting zoo area. I call this picture "Stubborn, meet Stubborn."

Leslie meets her match.

Usually, we headed to Dinosaur Valley State Park, to see the dino tracks in the riverbed, wade in the river, and have a picnic.

Misha and Hollis cool off in the Paluxy River.

I loved going to Burger's Lake in Fort Worth ever since I was a kid, and my kids loved it, too. An old style"resort" dating back to the 1930s, the spring fed lake always feels so good on a blistering hot summer day!

Marcus and Jesse floating in their tubes.

I enjoy remembering these times. I hope my kids do, too.

The inclusion debate

2011-05-22T15:56:00.003-05:00

Daughter Leslie, second from right, was one of the original students at Alice Carlson ALC.

I read several blogs of parents who write about parenting their kids who have disabilities. Most of these parents have kids much younger than my own. I occasionally comment on their posts, hoping that hearing from a parent of "kids" who are now adults, might offer a different perspective. Occasionally I feel slightly miffed that my comments seem largely ignored, as if they are relics from the Stone Age, but I take a breath and tell myself that I'm being too sensitive, and remind myself that they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.

But in recent days, a debate has been going on on Ellen's blog and Louise's blog regarding inclusion. I admit that I have been taken aback by the vociferous tone of the debate, especially on the part of those who are adamant that their child (and everyone else's apparently) must be included in all aspects of normal life and should never be "relegated" to the ghetto of activities organized only for special needs kids. I also feel that there is a certain amount of disdain for those of us who have chosen segregated or specialized programs of any type for our kids with disabilities and for those of us who pushed for the elimination of barriers before many of these parents were even born. In a way, it reminds me of the disdain that Black Power groups had for the pioneers of the civil rights movement, regarding them as "Uncle Toms" and sellouts.

With so many kids, who had a wide variety of abilities and disabilities, I've had lots of experience with specialized programs and with inclusion. My kids who were capable of doing academic work at or close to grade level were all educated in regular classrooms. That includes my daughter Leslie, whose cerebral palsy is so severe that she cannot even feed herself. When she was approaching kindergarten age, the diagnostician at her school tested her, and sought me out to tell me that Leslie had scored at or above her age level in all pre-academic areas. "Good, " I said, "then you'll understand why I want her in regular class next year." The poor woman looked shocked; our district had never mainstreamed a child with such severe disabilities before. But it was all worked out, and Leslie went through school in regular classes, with an aide to assist her, and she now lives in her own apartment.

But I recognize that there are kids who don't do well in mainstream classes. I pushed for Marcus to be in regular class in kindergarten and first, and it did not work out well. In fact, school itself did not work out well, increasing his PTSD to the point that he started running away from school. I took him out of school during middle school and his PTSD was totally resolved. When he returned to school for high school, at first he was in his neighborhood school, in generic special education classes that were abysmal. Goaded by other students, who asked him things like, "Do you f*** your white mother?," his explosive behaviors returned. I then asked that he be placed in a pre-vocational special education program, where he made friends, was able to move to a sheltered workshop at the Lighthouse for the Blind, and was described by his teacher as so responsible that he was like her assistant.

Outside of school, my kids participated in both types of activities. All went to vacation church school and regular after school day care. Some went to regular summer enrichment classes, day camps, and church camp in Colorado. But most also went to camps for kids with disabilities, sports programs sponsored by United Cerebral Palsy, and adaptive horseback riding. In some of the regular programs, my children got hurt. At day camp Leslie's seatbelt wasn't fastened and she fell out of her wheelchair and broke her collarbone. At day care, Marcus got a corneal abrasion when another child accidentally scratched his eye. I'm sure Marcus didn't make many friends at church camp in Colorado, because no one helped him locate the showers, and he stank to high heaven when he got back home. One time I helped with Gabriel's Campfire group, and it hurt me so deeply to see how the others ridiculed him. One advocate of inclusion just signs her kid up for t-ball and any other activity she chooses, because it's his "right," and I guess she just expects the staff to step up to the plate, so to speak. That, in my opinion, is the path to possible disaster. Aside from the safety factor, one has to acknowledge that it takes leadership from the staff to make inclusion work, and, if the staff is ill-prepared or fearful, they will not have the necessary skills and commitment to figure out how to meet the disabled child's needs in the group.

Lastly, I know that special needs parenting has its ups and downs and frustrations. Everyone wants their child to have every possible opportunity and chafes at limitations. We still have a long way to go to achieve a society without barriers, especially to employment. But it's always a good idea to reflect on the progress we've made. When I first got involved in working with the disabled, doctors still advised parents to place their children in dreary state institutions. When I was rearing my children, I had to carry my daughter into restrooms because her wheelchair wouldn't fit, and I must have bumped Leslie and Cedric up and down about 10,000 steps in their chairs because there were no ramps. Of course, we should not rest on our laurels, but today's parents should acknowledge those who paved the way, instead of denigrating their efforts because they "settled" for less than full inclusion.

Inch by inch, square by square...

2011-05-21T21:20:00.000-05:00

One good thing about moving to St. Louis is that I can now have a garden! Longtime readers may remember the mobile square foot garden I made last year. In Texas gardening was a near hopeless endeavor: my yard had 25 trees, no sun, and the soil was a few inches of sand (like a beach!) over red clay.

Here in St. Louis my yard gets a lot of sun, so I have a perfect spot for a real 4'X4' square foot garden. So far I have tomatoes, green onions, green beans, and strawberries. I've only had to water one time so far, since it's rained every few days. The soil in my yard is much better than that in Texas, though a bit sticky like clay. But I've been able to actually grow snapdragons in the yard, rather than containers, and have planted blackberries and blueberries which are growing well.

For more information on square foot gardening, check out Mel Bartholomew's book Square Foot Gardening or visit the square foot gardening website.

"Shared home, shared life"

2011-05-20T21:49:00.001-05:00

Continuing to look for innovative programs for adults with developmental disabilities, I found the companion model developed by Resources for Human Development (RHD). RHD is a values driven non-profit that provides services to people with developmental disabilities, the homeless, and persons with mental illness. In the St. Louis area, RHD-MO provides residential programs and day programs for persons with developmental disabilities.

Their residential program utilizes the companion model, in which the disabled person shares his/her home with a caregiver. Rather than having an ever-changing staff of shift workers, the person with a disability has a roommate who shares his home and life.

I can easily imagine both Marcus and Tevis benefitting from this arrangement. Marcus is a very private person who maintains his own routine. I have always thought he would hate a group home, with its lack of privacy and independence, and the way that clients are expected to participate in group activities not of their own choosing. But I can see him enjoying the company of a caregiver/roommate who would provide conversation, play video games with him, go on outings with him. Tevis would also like this type of "care." He's been in a group home, and now has blossomed living back at home. He likes to pursue his own interests, especially surfing the net on my laptop. He loves being able to fix his own breakfast and lunch, go outside whenever he wants, having more real choices. I'm sure having a roommate/caregiver would fit nicely into his idea of what kind of life he wants.

Another year older, another year...

2011-05-19T12:56:00.000-05:00

My birthday party in the back yard, circa 1960

So today is my 59th birthday! I've already received so many well-wishes on Facebook. Tonight the boys are taking me out to eat, with Marcus paying my way. Gabriel gave me a new coffee mug, much needed after Tevis has accidentally broken most of my old ones. And Tevis...well, bless Tevis' little pea-pickin' heart. We went to Walmart to grocery shop and for the expressed purpose of Gabriel and Tevis each buying a mug. Both picked one out and put them in the cart (the element of surprise was not high on their list). Then Tevis said he was going to get wrapping paper, and I let him set off on this mission...maybe not such a great idea. He was gone quite a while and then he returned with great excitement, with a big roll of wrapping paper and a bag, proclaiming that he had already paid for it. I checked the bag and receipt...he had bought the wrapping paper, a Thank You card that played music, and a set of headphones for himself, all of which totaled $19.61. Since he had a $20 bill, that left him with a grand total of 39 cents, so he now had wrapping paper, but could not afford the gift that was to be wrapped in it! Sort of a new twist on the Gift of the Magi, I guess. As for the Thank You card, I didn't comment on that, but he later realized his error in not getting a birthday card. Sweetly, and rather insightfully, he salvaged the moment: "I got you a thank you card to thank you for doing so much for me." Awwww....

Tips for parents of kids with disabilities

2011-05-17T20:08:00.000-05:00

Marcus unloads the silverware from the dishwasher, learning responsibility at an early age.

I wrote this essay on Helium.com several years ago and wanted to share it here on my blog.

As an adoptive parent to several children with disabilities and as a pediatric occupational therapist, I would like to offer some tips to parents of children with disabilities. They are gleaned from my own successes and mistakes, as well as the various parenting styles I have observed in my work.

1. Don't be afraid of labels. No parent likes to have their child labeled, whether it is as the class clown, a troublemaker, autistic, or mentally retarded. One of my children suffered a severe traumatic brain injury as the result of abuse at an early age. Even as his cognitive deficits became more apparent over time, I insisted that the schools put a "Traumatic Brain Injury" special education code on him, not a "mentally retarded" code. When he graduated from the public schools, I came to regret that decision. As an adult, there are virtually no services for a brain injured person, while there is a vast array of programs and services for the mentally retarded/developmentally delayed. You know your child is much more than a label, but try to accept the label as a ticket to better services for your child.

2. Be skeptical of miracle "cures." Having been in this professional field for almost 30 years, I have seen many miracle cures come and go. There was patterning, neural pacemakers, rhizotomy, etc. Some people exhausted their financial resources or sacrificed their family life for what turned out to be false promises.

3. Walk the fine line between making your child feel special and making him self-centered. One of my children has severe cerebral palsy, but normal intelligence. I quickly saw that most folks assumed she was mentally delayed and they tended to ignore her or talk to her as if she were a baby. So I went out of my way to include her in social situations, brag about her accomplishments, and, in short, make her the center of attention. My strategy backfired, in that she became self-absorbed, always expecting to be the center of attention. Yes, your child is special, but no more special than every other child.

4. Let your child be a child. You may feel that, with all the therapy, medical appointments, and educational needs your child has, you have to make every minute count. But your child has other needs: to play, to develop his own interests, make friends, be goofy, daydream.

5. Encourage your child to become independent. It is often easier, quicker, or less messy to do things for your child, but you won't be around forever. Let your child develop that sense of accomplishment and competence that we all need. And if your child does need help, teach him to ask for it in a gracious way.

6. Fight for your child's rights, but teach him responsibility at the same time. If you insist that the school buy your child an expensive notebook computer to do his school and homework on, it is important that he understand that he has to take care of it and that you do expect him to complete his assignments.

7. Help your child deal with uncomfortable social situations in a positive way. Fortunately, this is a much easier task than it was 20 or so years ago when I began rearing my children. Thanks to the push for mainstreaming, most children today have had some experience in being around and relating to peers with disabilities. But your child may still encounter stares or remarks in public. Maybe it makes you mad or uncomfortable, but try to remind yourself that usually the person who is staring intends no harm, but is only curious. Often just smiling and saying hello diffuses the situation. I often think of the time I was at Six Flags with my son who had Tourette's syndrome, with many facial tics. We were in the line for a ride, and kept passing the same kid each time the line snaked through the aisles. The other kid kept staring and staring. I began to feel anxious and tried to stand between the kid and my son, so as to block his view. Finally my son leaned over to whisper in my ear, "See that boy over there? He's got an eye problem...he keeps staring!" What insight...my son was able to see the situation as the boy's problem, not his!

8. And lastly, take care of yourself! Everyone has a bad day...forgive yourself for your impatience, grief, or mistakes. Try to get your rest, find support, make friends, pursue your own interests. Don't let yourself get so drained that you have nothing to offer your child.

I hope these tips will be helpful. I like to remind myself that there are lots of different styles of parenting, but most parents are doing their best for their children.

Daring to hope

2011-05-13T23:38:00.001-05:00

Gabriel had an appointment with the psychiatrist today. He remarked on how much quicker we got in and out, compared with our appointments at MHMR in Texas. That made me think of the many differences in the services he gets here in St. Louis, compared with those in Texas.

At Texas MHMR, we usually spent 3-4 hours, to get his blood work, meet with a case manager who did nothing but mechanically fill out the required paperwork, and see the doctor for 5 or 10 minutes. When Gabriel entered that doctor's office, she almost always turned on a fan so she wouldn't have to smell him, and she often took personal phone calls while she met with us. I had begun reading about the Clubhouse movement, which is a worldwide movement with mental health clubhouses in 30+ countries from Japan to Israel to Poland to South Africa to Kosovo, but whenever I mentioned the need for a clubhouse to the staff at MHMR, not a single one of them had ever even heard of a clubhouse. Getting his prescriptions, one of which is very strictly controlled, often required 3 trips to a pharmacy downtown, including a wait of an hour.

Here in St. Louis, mental health services are provided by Barnes Jewish Behavioral Health. Today Gabriel got his blood work, met with the psychiatrist for 30 minutues, worked with his case manager for another 30 minutes, and turned in his prescription at the on-site pharmacy (we'll receive the medication in the mail on Tuesday), and we were in and out in an hour and fifteen minutes. The nurse who does the blood work knows Gabriel by name on sight. The doctor actually talks to him, asking probing questions about his symptoms, his activities, his goals. She tries to educate him about schizophrenia and related health issues. Gabriel told her today that he thinks he's doing better, because he only thinks about the Russian mob trying to kill him once every hour, rather than every five minutes. He was able to explain that his hallucinations seem real, like dreams, when they're happening, but he can understand that they're not real. Then he worked with his case manager on practical skills, like keeping a log of his blood sugar readings.

As we left, rather than feeling defeated and hopeless, as I often did when we left MHMR, I dared to feel hopeful, dared to feel that Gabriel isn't just spinning his wheels any more.

Help Nisha change the world!

2011-05-11T11:58:00.001-05:00

One of the joys of following other people's blogs is that, in reading the comments readers leave, you can meet even more wonderful, interesting, inspiring people. Last night I was reading "Love that Max," and I saw a comment by a young woman named Nisha, who lives in South Africa. She said she had cerebral palsy, as does Max, and that "in the interest of being helpful I would like to ask that you NEVER LOWER YOUR EXPECTATIONS for Max." I was intrigued, and followed the link to her blog, The Adventures of Me.

Immediately I liked Nisha's sense of humor: the subtitle of her blog is, "If God is watching, I plan on being entertaining." As I read further, I found that this is an extraordinary 20-year-old. Yes, like most of her peers, she likes to listen to music, watch movies, talk with her friends, spend time on the internet and Twitter. But, unlike many of her peers, she is determined to change the world. At the age of 20, she has discovered on her own what many people never learn in a lifetime: "I am at my happiest when I give of myself in whatever way I can at any given moment in time."

So Nisha has decided that one way she will make the world a better place is to raise money and awareness for one of the world's most urgent causes: access to clean water. She has set a goal to raise $6500 for The Water Project and to build a well in a community that lacks clean water. So far, she is 57% of the way to her goal.

I want to urge all my readers and friends to contribute whatever you can to Nisha's cause. You can donate through her First Giving page. I encourage you to visit her blog and read a few posts...you will be inspired and blessed by this young woman's writing and generous spirit!

Down home on the ranch

2011-05-09T22:49:00.002-05:00

Since my boys are now all adults with developmental or mental health disabilities, I am of course concerned about where they will wind up when I'm gone. I've done quite a bit of research online, looking for high quality, innovative programs for adults. Tevis was in a group home for many years, because of his need for constant supervision and because of his explosive behavior, so I've seen the "average" group home, and I was not impressed. The first group home was an ICFMR facility with 6 residents; the second was a Medicaid waiver home with 3-4 residents. The second was of better quality, with better administration, but both were plagued above all by the quality of direct care staff. Given the low pay and the sometimes stressful work, turnover was a constant problem and the administrators obviously had to take what they could get.

I have long admired the L'Arche movement, a worldwide movement founded by Jean Vanier in France in 1964. He had a vision of homes where people with and without disabilities lived together in an intentional community, sharing their faith and their daily lives. Similarly, the Camphill movement, based on the writings of Rudolf Steiner, has established communities where people with developmental disabilities live and work with non-disabled "coworkers," many in rural settings where they also promote sustainable agriculture. Unfortunately many of these programs charge a hefty tuition or residential fee, putting them out of the reach of most persons with disabilities and their families.

A few residential programs which have been influenced by the ideas of Vanier and Steiner do accept public funding (Medicaid), however. One of these is Down Home Ranch in Elgin, Texas. Founded by Jerry and Judy Horton in the early 1990s, it is a working ranch where 20 ranchers with Down syndrome and other developmental disabilities and live-in resident assistants live and work together. Along with caring for livestock, the ranchers cultivate hanging baskets, Easter lilies, and poinsettias in their five greenhouses to sell to the public. During the summer, 500 campers enjoy a week of Ranch Camp at the ranch. It sounds like a great residential option, and I'm hoping to check it out, perhaps sending Tevis down there for a camp session this summer.

Mothers and other strong women

2011-05-07T21:22:00.000-05:00

This is one of my favorite photos, featuring, from left to right, my mother, my grandmother, and my aunt. My aunt used to refer to this portrait as "The Three Goons," probably because it was pre-nosejob for her. But I love it. These are the strong women in my life who taught me by example to persevere, to be fair, to work hard, to help others, to be independent.

My grandmother, affectionately known to friends and family as Anna B, raised these two daughters virtually as a single parent. My grandfather returned from the battlefields of WWI as a shell-shocked medic (the archaic term for PTSD), and he was never the same. Eventually he was committed to the psych ward at a VA hospital, where he lived the rest of his life. My grandmother began teaching in a little two-room country school when she was just 17. She didn't even have a high school diploma, but she went on to earn not only her diploma, but a BA and a Masters, all while working full-time as a teacher. And I mean working! She drove the dark country roads long before dawn to get to school early, so she could build a fire in the wood stove so the school room would be warm when her students arrived. During the Depression, she gave the kids haircuts and ran a clothes closet out of the storeroom. She got farmers in the area to donate a small part of their crops and created a veggie burger made out of blackeyed peas and ground pecans. (The county extension agent did a survey of the nutritional status of students in the area, and the kids at my grandmother's school had the best nutrition out of all the schools.)

Anna B with her class at Sally Brown School

Aunt Jing

My Aunt Jing followed in her mother's footsteps and also became a teacher, then a principal. She had no children, so she doted on us. "Jing" came from my brother's childish attempt to say her name Jimmye. She was christened Lillian Adelaide, but her father called her George. Finally my grandmother told him to stop calling her that, to come up with something better, so he called her Jimmye. It stuck and she had her name legally changed. Evidently Aunt Jing was known as a tomboy when she was younger, but as an adult she was always dressed to the nines, with perfect hair and makeup. She loved to talk, and when she came to visit, she and my mother would sit at the round dining table for hours, savoring their coffee and their conversation. Aunt Jing loved to tell stories and was always quite precise in her pronunciation and in her choice of just the right word. In the 90s she began to have some problems with her memory and was diagnosed with Alzheimers. We were all devastated, especially my mother. How she had enjoyed talking with her sister on the phone every Saturday; now the phone was silent. What a cruel disease...it took everything from my dear aunt: her intelligence, her language, her smile, her vivacious personality.

And then there was my mother. She was born while her father was in France during WWI, and when he returned, shell-shocked, he was apparently unable to bond with his little daughter. My mother never talked about her father until just before she passed away, saying "it was bad" before he was committed to the hospital. I knew that my mother had gone to a boarding school as a teenager, but I never knew why she was sent there, while her sister stayed home. Finally I learned that my grandmother sat my mother down when she was 12 and said, "You know your father can't accept you. It would be better for everyone if you went away to school." WOW! What a thing to tell a 12 year old child! I think this is why my mother was content to be a stay-at-home mom, even though her mother and sister had worked. She wanted to give us what she had missed out on as a child and teenager. I think of all that my mother went through, both because of the time in which she grew up and started a family and because of her personal circumstances, and I am amazed at her strength and her ability to stay positive. Over the years, she sometimes referred to "during the Depression" or "when I was at school" or "during World War Two," but I never really heard her dwell on the difficulties of those times.

My mother Esther Alice Adams Gregory

When I look back at all my mother did when I was growing up, I am humbled by how hard she worked. She brought up three children, all of whom graduated with honors from high school and went on to graduate from Rice. And those were the times when mothers used cloth diapers, hung their wash on the clothesline, ironed everything, cooked from scratch, washed dishes by hand. My mother also sewed all my clothes and hers, made curtains, reupholstered the furniture. In her spare time (yeah, right) she was room mother and Girl Scout leader and Sunday school teacher. She had a heart attack when I was in junior high and had to quit some of those extracurricular activities, but she always worked hard, keeping the house and the family finances.

Mother and the kids 1955

In her later years, she developed macular degeneration and lost most of her vision. It was a source of great frustration for her. Hardly a single conversation ended without her having made some reference to "you know how my vision is" or "I can't read that because of how my vision is." I wondered how she would get along after my dad passed away. But she was one tough little lady. She continued to live in her independent living apartment, with a little help from me to order her medication and take her to the grocery store. She had a stroke, which caused severe aphasia. In rehab, the PT told my brother that my mother would most likely have to go to a nursing home. He didn't know my mother! She was able to go back to her apartment with just a little extra help.

My mother on her 91st birthday

Those last three years after my dad died were a gift for me. I was happy that I was able to help my mother, to return in some small measure all that she had done for me. Spending more time together, especially after her stroke, we became closer than we had ever been. When her final illness came, I regret that perhaps I made medical decisions that caused her unnecessary pain. Images of her final days still haunt me. But I am grateful that we were able to speak honestly, to tell each other how deep our love was, to say goodbye. She spoke to me with her last breath, looking into my eyes.

So these are the Adams women, who helped to make me who I am. I miss them so much and would give anything to sit with them one more time, around my mother's round table, sharing coffee and conversation and love.

The cloud of the future

2011-05-04T22:04:00.000-05:00

Today Gabriel had an appointment with the nurse practitioner to recheck his diabetes medication and glucose levels. The clinic is in the same location as his mental health provider, and, as we sat in the waiting room, his case manager came in. She came over to Gabriel and began asking him if he brought his record of blood sugar levels, did he bring a list of his medications, etc. She had to take care of another matter, but she told him she would be back.

I knew that she planned on going back with us when the nurse called him. Unexpectedly, I felt a wave of resentment rising within me, and it took me by surprise. After all, isn't this what we moved up here for: to obtain the support services that Gabriel needs? Why did I have this almost visceral response? As I thought about it, a dark cloud seemed to skim across my mind. In those few dark moments, I saw a future without me, Gabriel on his own against the world and his schizophrenia. That vision was so vivid, so distressing, that I had an unsettled feeling during the rest of the appointment.

This is the worry, the sometimes anguished distress, that haunts parents of children with developmental disabilities or severe mental illness...what will happen to my son/daughter when I'm gone? We search for programs and support services, we consider residential options, we draw up wills and set up trusts. But, especially if our family is not a close-knit one, we fear that eventually our adult child will be "cared for" only by people who are paid to be there.

Let's face it, girls...

2011-05-04T02:15:00.001-05:00

I was driving to Chicago a couple of weeks ago when I passed this road sign. In this town the young folks have to watch out for people who are older and have more insurance.

A quarter of a century

2011-05-01T10:43:00.001-05:00

Yesterday was Gabriel's 25th birthday. As usual, we just celebrated as a family, going to Chili's for supper and then having cake and presents at home. Gabriel wanted a red velvet cake, which is sort of a family tradition dating back to Jesse's childhood. My mother, understanding how hectic my life was as a single mom to so many kids (not to mention the sheer number of birthdays we celebrated!), started offering to buy a cake for the kids' birthdays. Living close to the Red Oven Bakery in Arlington, she always bought the cakes there, and usually got their specialty: red velvet cake. But apparently red velvet cake is more of a Southern thing, and most bakeries here don't make it. I finally decided to make it myself, and it turned out pretty darn good, if I do say so myself!

Of course, birthdays are always a time for a bit of reflection. I have to say that this year Gabriel is doing pretty well. At least he's doing better this year than he has since his 20th birthday. It was 3 months after his 20th birthday that he had his first major psychotic break. Since then birthdays have come and gone, and he has slept through them, been hospitalized with blood sugar at 850 on one, has generally been spinning his wheels as life passed him by. But this year is different. I can look back over the last year and see that he has made progress since his last birthday. He goes to the Independence Center every day, where he is around other people, has work that he does, has a reason to get out of bed. He has better medical care up here, and adjustments to his medication have lessened the intrusiveness of the voices.

So, Happy Birthday, Gabriel! May you continue to build a meaningful life for yourself...

Artists at work

2011-04-29T23:46:00.004-05:00

Finally winter's snowpack melted and we were able to venture forth from our house. Gaining access to state programs for the developmentally disabled has been extremely slow, and I have little hope that Marcus and Tevis will actually get any services. Apparently the only folks who actually get help are those whose parents have died and who have nowhere to go. So I set my mind to finding other community programs for the guys.

Fortunately, while searching on the internet, I found the Turner Center for the Arts. Located in the quaint old downtown area of Maplewood, with other studios and shops, the studio provides an open studio for artists with and without disabilities. Most of the artists are autistic or developmentally disabled. I knew this would be right up Tevis' alley, as he has always loved any type of art: drawing, painting, glueing, cutting, crafts. So initially I took only him. I admit that the first time he went, I breathed a great sigh of relief when I dropped him off. This was the first time I had had three hours to myself since we moved to St. Louis! Ahhhhhhh! And I only had to pay $10 for him to participate for three hours. He enjoyed the artwork immensely, so he began attending regularly twice a week.

I didn't really think Marcus would be interested. He used to draw quite a bit when he was young, but hadn't shown any interest in art since then. But he decided to give it a try, probably just to get away from the house after being housebound for so long during the severe winter. Surprisingly, he enjoyed himself and wanted to keep attending.

On a warm spring evening recently, the studio held an art show. The guys were proud of their displayed work. I was proud, too, and not only of the finished products. I was proud that Tevis has been able to go to a community activity without any behavioral issues. I'm proud that Marcus was able to get out of his rather rigid routine to try something new. And I really appreciate this center that gives folks with disabilities the opportunity to express and discover their creative talents.

Marking time

2011-01-23T00:04:00.004-06:00

I have to admit that I rarely have a moment when Gabriel's schizophrenia does not weigh on my mind. I suppose that's because, relatively speaking, its onset has been recent. I mean, I rarely think about my other kids' disabilities. Since they have been disabled from the day I first met them, indeed from the day I first heard about them, their cerebral palsy or spina bifida or dwarfism is just a given. Yes, occasionally I still think about what their lives would have been like if they hadn't had a disability, but I can set those thoughts aside. But with Gabriel's schizophrenia, it's different. I know that's because the disease has taken so much from him. The Gabriel I knew for 20 years---the impish, vivacious, charming child---is gone, and in his place is a moody, withdrawn stranger, without affect or motivation. Sometimes that stranger makes me uncomfortable, sometimes he gets on my nerves, sometimes I feel so sorry for him. And of course I feel guilty for feeling that way.

Most of the time the pain is a dull ache, but sometimes it pierces my heart. One of those piercing moments occurs almost every week. Most young adults mark time by referring to their age or what grade they were in when something happened. For example, "Boyz II Men was my favorite group when I was in 8th grade," or "Remember when I was 13 and we went to Padre Island?" But Gabriel marks time in a completely different way that breaks my heart. He'll say, "I remember that time we went to Burgers Lake, before the voices started."

Hijacking MLK Day

2011-01-15T22:42:00.002-06:00

I often cringe when I see businesses hijacking noble commemorations for commercial purposes. The historical achievements of George Washington and the lofty ideals of Abraham Lincoln are now marked only by "Presidents' Day Sales." Likewise, instead of remembering the fallen on Memorial Day or reflecting on the sacrifices of veterans on Veterans Day, most Americans observe those holidays by kicking off summer or by (once again) shopping Memorial Day Sales or Veterans Day Sales. (Veterans Day Sales? Really?)

So far, at least, the stores have not appropriated Martin Luther King Day for special sales promotions. But here in St. Louis, this day has been hijacked by something even worse. A local promoter has booked the "State of Emergency" tour for Monday, Martin Luther King Day. The concert features rappers Rick Ross, Wacka Flocka, Trina, and others. Ross is known for glorifying drug dealers. The lyrics of Wacka Flocka's "Oh, Let's Do It" glorify drugs, glocks, and money. (It's not known if Wacka will be able to make it, since he recently was arrested and charged with possession of marijuana, firearms--he’s a convicted felon--, hydrocodone, and violation of probation and the state’s “Criminal Street Gang and Terror Prevention Act.”) Trina, in the words of the promoter, "has continued to push the envelope of rap, with often-offensive, sexually explicit lyrics." The promoter claims that he is furthering the work of Dr. King, because in the time between sets, he and others will preach a message of non-violence. Uh-huh.

Dr. King is probably turning in his grave, or, more likely, wiping a tear from his eye.

Scapegoat

2011-01-10T00:53:00.005-06:00

Ah, so now it begins: the scapegoating of all people with schizophrenia. This evening I had been to visit Gabriel on the locked psych ward where he has been for the last week. When I came back home, I checked the updates on Facebook and read the following comment:

"Simple soon as they sign up for SSI and claim a mental illness as the reason lock ' em up, restrain them, and medicate them thru shots or iv's. They wanna be state sucks let 'em live in a state hospital!"

I was spitting mad!

First, I thought of all that Gabriel has suffered during his 24 years. In the younger grades, he struggled in every area. Because of his OCD, he almost never turned in an assignment, because after he worked on it, it wasn't perfect, so he would wad it up and start over again...and again and again and again. Even in kindergarten he was acutely aware of his difficulties, and he would come home and ask me, "How come Matthew can spell hard words and I can't?" In primary grades he got invited to lots of parties, because it was the social custom to invite the whole class so no one's feelings would be hurt. In the upper elementary grades, that custom fell by the wayside and the invitations ended. He had Tourette Syndrome, with a number of facial and vocal tics, and that certainly didn't help him fit in. In middle school he was hospitalized twice, for a total of five months, with severe anorexia. When he was admitted the first time, he weighed 69 pounds and, in the words of the doctor, looked like he had been in a concentration camp. During the second hospitalization he was first diagnosed as psychotic. When he was 20, he had his first major psychotic episode, and was diagnosed with disorganized schizophrenia, the type with the worst prognosis. He spent 7 months in the state hospital. The disease robbed him of his cognitive skills, his social skills, and his vibrant personality. When he has a setback, the voices are unbearable, and once he said he thought about stabbing himself in the head to make them stop. And now here is a person who says he should be treated as an animal, locked away and restrained and drugged. Here is a person who sees him as nothing more than a parasite, a "state suck."

And then I was angry on a political level. This person, needless to say, is a right wing conservative. These are the people who castigate the mentally ill because they won't stay in treatment, but at the same time, refuse to adequately fund mental health services. These are the people who don't want "those people" on the streets, in view, but begrudge them the measly SSI payment that puts a roof over their heads. These are the people who don't want the government meddling in their own lives in any way, but they think it is proper for the state to lock up people for the "crime" of being ill. In short, these are the people who are bald-faced hypocrites.

This, my friends, has been a terrible weekend. Apart from the tragic loss of life and grave injuries that will change the victims forever, it has exposed America for what it has become. This is the America that the hatemongers have created. They have made their bed, but unfortunately, we all sleep in it.

Connecting the dots

2011-01-09T18:40:00.006-06:00

I feel so stupid. After the shooting in Arizona, I was sure that those who have engaged in violent rhetoric and hate speech would step back, take a breath, and take stock of their actions. I just knew that they would realize that the toxic climate had contributed to this tragedy. Much to my shock and sorrow, the right is doing anything BUT taking the opportunity for self-reflection. They steadfastly assert that this was the action of a crazy man, who apparently lived in a vacuum. And it didn't take long for the right to start taking swipes at the left, accusing them of "politicizing" the terrible events.

Well, to the right I answer this: we are NOT politicizing this! Since you are apparently unable to connect the dots, it falls to someone to try to explain it to you. I submit the following sampling of what we have been exposed to in the last year:

When the President of the United States went to Arizona to deliver a speech, these protesters, openly bearing arms, stood across the street from the hall where the President was speaking.

Rep. Giffords' opponent in the election seemed to think that this was an appropriate way to promote his candidacy: by holding a fundraiser where supporters could shoot a fully automatic M16 with him.

The astroturf movement, funded by Dick Armey et al, mobilized thousands to disrupt town hall meetings. After Rep. Giffords' town hall, a gun was found in the hall, dropped by an attendee.

The following signs need no explanation: they are a small sampling of signs displayed at Tea Party rallies.

Anyone who argues that a climate like this does not contribute to the violent acts of unbalanced individuals is, in my opinion, in denial or incredibly obtuse.

Words have consequences

2011-01-09T00:23:00.004-06:00

When I heard about the shootings in Arizona today, I thought that surely the vast majority of reasonable people would wake up and recognize that the climate of vitriol and violent rhetoric that has engulfed this country in the last two years contributed to this tragedy. I was wrong. Many of my conservative friends assert that this was just the work of a disturbed mind and that the anti-government rhetoric, the talk of "second amendment remedies," the use of violent imagery in our political discourse had nothing to do with it.

Since my son has schizophrenia, which it appears the shooter could possibly have, this tragedy has made me think a lot about what could ever push him to commit a crime like this. Fortunately Gabriel's delusions and paranoia usually involve the Russian mob and the Mafia, not the government. But I got to thinking...what if our political extremists were calling Obama and the Democrats mobsters instead of socialists? What if Obama were pictured as a Mafia boss on all those protest signs, instead of Hitler, Stalin, or Lenin? What if the right wingnuts were scaring the public about mob hits, instead of re-education camps? And what if talk of using "second amendment remedies" or "hello Mr. Smith and Mr. Wesson" led him to go buy a gun? I have no doubt that if that rhetoric was bombarding him constantly, it could push him over the edge.

I whole heartedly agree with Sheriff Dupnik of Pima County AZ: " Let me just say one thing, because people tend to poo-poo this business about all the vitriole that we hear inflaming the American public by people who make a living off of doing that. That may be free speech. But it's not without consequences."

On the locked ward again

2011-01-05T22:23:00.002-06:00

Reprising a poem that I wrote during Gabriel's first major psychotic episode...it still rings true today as he once again finds himself wrestling with the demons behind locked doors.

On the locked ward

They walk.
Through pale green halls
They walk.
Perhaps they flee their demons
Or maybe they pursue them.
Pacing, pacing back and forth,
Pacing racing thoughts,
Moving to define
The boundary between themselves
And the world in which they move.

They watch.
With haunted eyes
They watch
A scene unseen by others.
Others can only see the reaction
On their faces:
Bewilderment, horror,
Amusement, interest.
The silent movie plays
For an audience of one.

They listen.
To compelling voices
They listen.
Voices that will not be still
Cajole and threaten,
Command and seduce,
Demanding to be heard
Through their own resounding echoes.

Define "normal"

2010-12-28T20:52:00.003-06:00

A few years ago, I was considering moving Tevis out of the group home and back home with us. Over the years, his explosive, aggressive behavior had decreased, and I thought that it might work. When I had a meeting with the owner of the group home company and some other staff people, I was taken aback at their negative reaction to the idea. One of them said, "It's not normal for someone Tevis' age to move back home with his parents. People his age are leaving home, not moving back."

I've thought a lot about that statement since then, and especially since Tevis moved with us to Saint Louis. What exactly is "normal?" When someone has significant disabilities, why single out one facet of a normal life (moving out of the family home) and use that as the standard of what is normal? In doing so, many other aspects of a normal life are sacrificed. What is normal about being "cared for" (I use the term loosely) by an ever-changing staff, on three shifts, weekday and weekend, with a very high turnover rate? What is normal about having to worry if the next staff person will be fired and/or arrested for assaulting a resident? What is normal about spending most of your time shut in your room, watching TV, sleeping, and, well, let's say, entertaining yourself? What is normal about being unable to help yourself to a snack or go outside by yourself?

So, according to those folks, Tevis has regressed by moving back to his parent's home. But by every other standard his life is now much more normal. He spends his days in a variety of activities: drawing, taking pictures with my old digital camera, watching a little TV, playing his electronic Leapster games, and working on my laptop. He fixes his own breakfast, lunch, and snacks, does his own laundry without being told, and takes the trash out to the dumpster. He goes to the grocery store and library, and plays basketball with The ARC on Saturdays. He checks his blood sugar twice a day and takes his own medication. He can cook a grilled cheese sandwich, and he recently bought a blender and is now the "Smoothie King."

Recently I've been taking an online course on psychosocial rehabilitation. It's defined as providing the skills and supports to enable a person to live in their environment of choice. "The environment of choice" is the key. At Thanksgiving dinner, my son Jesse was asking everyone what they were thankful for. Without hesitation, Tevis said, "I'm thankful I don't live in the group home any more." Enough said.

Coffee with my hero

2010-10-28T18:47:00.001-05:00

Today the boys and I had coffee with a woman who is a personal hero of mine. Her name is Debora and, like me, she is a pediatric occupational therapist. In 1981, she began treating a set of one year old twins...my future son Marcus and his twin brother.

In spite of a slightly premature birth, the babies were generally on target developmentally. They were social and explored their environment. But over the course of the following year, Debora became concerned that the boys were showing signs of ever increasing emotional disturbance. They started to avoid eye contact, cried a lot and could not be consoled, banged their heads on the floor, crawled into corners to hide their faces. They often had bruises in the shape of a hand or of a hair pick. When they were about 15 months old, Marcus had a broken arm, and a month later, his brother had a broken leg.

Debora meticulously documented the disturbed behaviors and contacted Child Protective Services about her concerns. She described the increasing signs of emotional disturbance and ended her letter with the statement: "I seriously fear for the safety of these boys." But CPS left the boys in their mother's home.

A few months later, the mother brought Marcus to the emergency room. He was semi-comatose with a severe brain injury. He had detached retinas from being shaken. He had 3 broken out teeth and a wound on his forehead, indicating that he had been thrown against a wall or floor. He had second and third degree burns on his feet, legs, and buttocks from being placed in hot water, that appeared to be a couple of weeks old. Debora, of course, was heartbroken that her prediction had come to pass.

She knew that Marcus' emotional recovery would be as important as his physical rehabilitation. She hung a blue, handwritten sign on Marcus' hospital crib, with instructions to the nurses:

Her treatment had a vital role in Marcus' healing. After the injuries, he was regressed back to the developmental level of an infant. In a sense, he got to start over, to be re-parented with the kind, loving touch and words and rocking that he had never known.

After I adopted him, he had explosive behaviors and signs of PTSD for many years, but, over time, he resolved these problems. He grew into a kind, generous, helpful person. I give Debora the credit for starting the healing process.

I never met her in person, but for many years we exchanged Christmas cards, and I kept her updated on Marcus' progress. But we sort of lost touch a number of years ago. Last weekend, I suddenly remembered that Debora had been an occupational therapy professor in St. Louis the last I had heard from her. I googled her and discovered that she teaches at St. Louis University, only a couple of blocks from our house! I emailed her and we planned to meet.

So today we met at a little coffee shop at SLU. This was the first time Debora and Marcus had seen each other since Marcus was 2. It was a very sweet reunion. I have always considered her a hero, for trying to save Marcus and for starting him on the path to emotional healing.

The American Dream

2010-09-05T17:13:00.003-05:00

When I went to the cemetery to pay my respects to my grandparents, I left with many emotions and many thoughts to ponder. One thing I discovered was how little I knew about my family. Buried next to my grandmother was Mamie Barthel Hathaway. I'm embarrassed to admit that, at the age of 58, I had not known that my grandmother had a sister, who had died at the age of 26! Next to Mamie was Hollis Fannin Barthel, my grandmother's son, who died just shy of his second birthday. His portrait had always hung in my grandmother's bedroom, but my brother and I only learned who the beautiful child was after my grandmother took the portrait to be cleaned and repaired. She reported to my brother that, after the frame shop had finished with it, they hung it on the wall in the shop, until she could pick it up. The shop keeper told her that several people had been so taken with the little boy's picture, that they had asked to buy it. "Can you imagine?" my grandmother said with indignation. "How in the world could I sell my own son's portrait?!" Nearby was a headstone, engraved simply "Infant Adams, January 26, 1914." And so I learned that my grandmother's first child had been stillborn.

It may seem incredible that I've known so little about my family. We always had a close relationship with my maternal grandmother and my mother's sister, Aunt Jing. But I never knew that my great-grandmother had died when my grandmother was only 10 years old. And I was in third or fourth grade when I learned for the first time that I had a grandfather who had spent about 30 years in a VA psychiatric hospital. Of course, back in my childhood, most adults felt the need to shelter children from the harsh realities of life. But when I think back to the conversation which surrounded me in my grandmother's living room or around our big circular dining room table at our house when the family gathered, I remember family tales of accomplishment, togetherness, and relationship, not tragedy.

Similarly, only towards the end of my mother's life did I learn of some the adversity she had faced. I had never known that when her father returned from WWI, traumatized by his experiences as a medic on the battlefields of France, he could not accept this baby born in his absence. I knew my mother, as a teenager, had gone to boarding school, working for room and board, and I had sometimes wondered why her sister had stayed at home. Only as my mother neared the end of her life, did I learn from my brother the sad story. When my mother was 12, my grandmother sat her down and basically said, you know your father can't accept you, so it would be better for everyone if you went to boarding school. When my mother had talked about school, she spoke proudly of working hard and graduating when she was 16, and her only complaint was that on Sunday evenings, they always gave the students a sack lunch with a peanut butter and banana sandwich, the smell of which ever since would turn her stomach. She came of age during the Great Depression and started her family as WWII began. When I was growing up, she made occasional reference to "during the Depression" or "during the War," but her stories almost never touched on hardship.

As I learned more about our family and its trials and tribulations, I felt humbled by what I learned. I thought of how we complain in these present times, how we bemoan the "Death of the American Dream." Most of us interpret the "American Dream" as the promise that things are always getting better, that if you work hard, you will improve your lot, and that your children will have things better than you did. I came to realize that this "American Dream" is the fantasy of us Baby Boomers, who happened to grow up in a time of prosperity and optimism, that came on the heels of depression and a horrific war. I considered the lives of our parents and grandparents, only one and two generations behind us. Their lives were a constant struggle to get by, and they were buffeted by frequent tragedy. Yet, at least in my family, they seemed to concentrate their attention on what they accomplished against the odds and how they supported each other. Perhaps that is the real American Dream.

Every chapter

2010-09-05T00:30:00.005-05:00

Returning from St. Louis a couple of weeks ago, I left the interstate to take the route through Muskogee. This was the hometown of my grandparents and my parents. As a child, I spent a week or two there every summer, staying with my maternal grandmother, "Gaga" Adams, and making the rounds to visit all the other relatives who lived in town. Gaga was the last surviving grandparent, and after she died in 1974, I had not been back to Muskogee since her funeral.

I headed straight for the cemetery, where I stopped in the little office to inquire about the location of the graves. First I found my paternal grandparents' grave and the nearby grave of my dad's sister, who died last fall at the age of 98. Then I drove to Gaga Adams' grave.

And then the tears welled up, as all the memories from so many summers washed over me. I remembered the anticipation as we neared Gaga's house, usually after the sun had already gone down. How vividly I remembered that sort of cooing sound she made, as she fussed over us, and how she smelled of face powder and Sweetheart soap as she kissed us. I remembered that we sat around her Formica kitchen table and ate vanilla ice cream with Hershey's syrup. I thought of how the whole family would sit in the little living room, and the grownups would talk, and I would amuse myself or, if my aunt was visiting, too, I would sit on the floor while she brushed my hair. And I thought of those times when Gaga took us out to her beloved Sallie Brown School, the little two room schoolhouse, once a chapel, where she began teaching at the age of 17.

And the tears ran down my cheeks as I realized that when my brothers and I are gone, there will be no more direct memories of these precious people. At some point they would be like others in this cemetery: a name on a headstone at an unvisited grave.

I came back home in a somber mood, weighed down by the thought that the real loss that comes with death is the end of a lifetime of memories, and the end of the living connection with the past. And then I happened upon John Donne's Meditation XVII, which begins, "All mankind is of one author, and is one volume; when one man dies, one chapter is not torn out of the book, but translated into a better language; and every chapter must be so translated." How those words spoke to me at that moment!

Treasure hunt

2010-07-21T23:38:00.005-05:00

So I've been going through lots of boxes, throwing out and sorting, trying to get organized for our upcoming move to St. Louis. I am a confirmed pack rat. I've been this way ever since I was a kid. My brother Jim is just the opposite...so neat and tidy and unsentimental that I've often compared his living quarters to a monk's cell. When we were kids, he would be cleaning out his room, tossing things in the trash with abandon...and I would be fishing them right out, saying, "Oh, you can't throw this away! Can I have it?" So I have boxes in closets and the garage, many of which haven't been opened in years. It's not exactly a picnic, but the one rewarding aspect of the job is finding treasures that I haven't seen for the longest time. I have thrown out a lot of things (WHY did I keep THIS?), but, yes, I am very sentimental for some mementos.

I found an old scrapbook, which contained this class picture of my sixth grade class at Meadowbrook Elementary (1963-64), on the east side of Fort Worth. Amazingly, I remembered the names of about 2/3 of the class, and my friends on Facebook provided the rest. This was a time of great stability, and many of these kids were my classmates from 1st through 12th grade.

I found this envelope, with the note on the outside, written in my grandmother's hand, "Found by Nathan S. Adams on the Battlefield in France World War I." Inside were this rosary and the flight wings. Unfortunately, this wasn't the only thing my grandfather brought back from WWI. He came back with a severe case of PTSD, which was known as "shell shock" in those days. After a decade or so of deteriorating mental health, he was committed to a VA psychiatric hospital for the rest of his life. I met him only once, when my parents took me to Shreveport to see him for a brief visit.

I found the box that contained special items related to my kids. For most of my kids, at least the ones who were adopted at younger ages, I kept the outfits that they wore home the day I brought them home. This is the outfit Marcus wore home at age 3. I remember that his social worker almost cried when she saw him in it, saying with great emotion, "Oh, someone bought him new clothes for this day." His foster mom did not come out to the car to see us off...it was too hard to say goodbye to this special little boy, whom she had started on the road to emotional healing after he was so severely injured by his birthmother.

I made this purse during high school or college. I never took art in high school...didn't want to take the risk of ruining my grade point average. But I hung out in the art room sometimes with a friend of mine. Ms. Dorothy Weatherby, the art teacher, said to me one day, "I know something that I bet you would enjoy..." and she proceeded to show me how to macrame. I later bought some instruction leaflets and made this purse. When I found it in a box this week, I was somewhat amazed that I had made it!

This is our venerable copy of "Little House on the Prairie," which was a gift to my brother from my grandmother during WWII.

This is some of Jesse's art work, probably from kindergarten or first grade. As you can see, his calling as a beautician had early roots.

I was SO happy to find my old monkey, JoJo. I'm not sure who sewed JoJo, but it was my brother's before it was mine, so it was probably made around the time of WWII. So this little monkey is somewhere between 60 and 70 years old.

Now this may be the most inexplicable memento (I told you I was a pack rat). This jar once contained a yellow salve, compounded at Morrison's Drug Store on East Lancaster. It was my mother's cure-all when we were growing up. Scraped a knee? Go get some of that yellow medicine. Burned by steam? Go get some of that yellow medicine. Got a blister on your heel? Go get some of that yellow medicine. I have a feeling that it had sat in our bathroom cabinet so many years, that it had long lost its effectiveness, but we kept using it. Morrison's Drug Store had significance to me for other reasons. The store was robbed one evening and Mr. Morrison was murdered. It was the first time that crime had intruded into my world.

We awaited the arrival of Haley's Comet with great anticipation. I bought Jesse this shirt; the back says, "See you again in 2061." We drove out to Lake Benbrook at 4 AM to try to see it. I was expecting a huge fireball blazing across the sky with a flaming tail. I'm not sure we actually saw it, but we convinced ourselves that we did. We bought donuts on the way home. I had the boys draw pictures of the event and we wrote a story about it, which I also found tonight.

These cute little shoes are Korean slippers that were sent with Leslie when she flew to the US when I adopted her. Evidently they are unisex, because Hollis arrived with a pair, too.

Here are some of my political buttons that I've collected over the years. For several years I thought I might never have a winner among my collection, but there have been several now.

These are baptismal stoles from the baptisms of my first 7 children. The three children who came from Russia had been baptized in the Russian Orthodox church.

I'm sure there are more treasures squirreled away...more boxes await!

Back from Colorado

2010-06-18T20:21:00.012-05:00

We left last Saturday for our trip to Colorado. We were more than ready to escape the Texas heat and we were not disappointed. In fact, we were welcomed by snowfall as we drove over the mountain towards Winter Park.

We got settled into the Rocky Mountain Inn and Hostel and awoke the next morning to a very cold rain and gray skies. Undaunted, we headed up to the western side of Rocky Mountain National Park. The Trail Ridge Road, which follows a stunning path along the ridge of the Continental Divide to the eastern side of the park, was closed due to icy conditions. So we explored the western side. We ate a picnic lunch and then walked to the nearby historic cabin, built by a would-be farmer in 1903.

We did some hiking.

This was Tevis' first time to see mountains and he thought they were pretty cool!

We were on the lookout for wildlife and were thrilled to see moose grazing in a thicket near the Colorado River.

The next day we drove the LOOOOOONG way around to the east side of the park, not realizing that the Trail Ridge Road had been opened at noon. But there was some spectacular scenery on the long detour route.

We stopped in Estes Park for a late lunch. I was surprised that it was such a tourist trap...I much prefer sleepy little Winter Park!

And then we began the drive along the Trail Ridge Road. Since I don't like heights, I missed a lot of the spectacular views, since my heart leapt up in my throat when I looked off in the direction of the precipice. We stopped at several of the scenic turnouts.

But sometimes a still photo can't do justice to a spectacular vista.

The last day of our stay dawned with brilliant sunshine...perfect weather for the guys' rafting trip, organized by the National Sports Center for the Disabled. They took off for a great adventure, while I returned to the national park. (Sure wish I had photos of the rafting trip, but of course everyone was too busy paddling to worry about a camera.) I did some more hiking and took some photos in the sunshine. First, Grand Lake was on the way.

I hiked along the beginning of the Colorado River.

The elk seemed to be enjoying the sunshine as well.

And then it was time to return to Texas and 95 degree weather...sigh.

St. Louis---WOW!

2010-05-30T00:51:00.005-05:00

This week Jesse and I went on a road trip to check out St. Louis. I had been there once before, at a professional continuing education course, but on that trip, I spent all day in the course, and tried out my luck at the riverboat casinos at night. So I didn't really see much of the city on that trip. So we spent a couple of days trying to see as much as we could. I wish I had taken more pictures of neighborhoods and street scenes, but, given our mobility problems, we weren't able to do much walking.

We went to Forest Park, which has SO many free and interesting attractions. We toured the Missouri History Museum, which had a fascinating exhibit about Charles Lindbergh.

A unique attraction in the park is the Jewel Box, a lovely Art Deco greenhouse built by the WPA in 1936.

Jesse, of course, wanted to pose on the spiral staircase of the Jewel Box.

We took the Metrolink to the famous Arch of St. Louis. I would have liked to take some photos of the stations and platforms, but, of course, that's a big security no-no.

And, lest we forget...

Jesse took the ride to the top of the Arch, but, with my fear of heights, I was quite satisfied to explore the exhibits at the base.

As it turned out, nature provided its own impressive arch after a thunderstorm late in the day.

We took a look at some houses. St. Louis has wonderful, historical houses, with a great variety of architectural styles. Unfortunately many homes have decayed and many have been razed in some neighborhoods, but quite a few have been rehabbed. I really liked this duplex!

I'm looking forward to a return trip in the near future.

My mobile garden

2010-05-17T20:14:00.003-05:00

Last summer I was standing in line in the garden center of Walmart, when I struck up a conversation with the woman behind me. I was admiring her flowers and she started explaining that they were an addition to her "Square Foot Garden." "Have you heard of square foot gardening?" she asked. When I indicated that I hadn't, she began explaining the main tenets of SFG, with the ardent passion of a true believer.

I kept meaning to look into it, but only got around to it this spring. I checked out the SFG website and ordered the SFG book from Amazon. I got all fired up and ready to go, but there was one BIG problem. The typical square foot garden is built 9 to 16 square feet...a small space, right? But I literally do not have 9 square feet that get sufficient sunshine all day, much less all summer. With about 25 trees on my lot, and given the ever-changing position of the sun, every promising spot eventually winds up in total shade.

Spurred on by the thought of eating a homegrown tomato, I began to consider possible solutions. Maybe I could make it smaller, maybe I could make it portable...voila, the Mobile Square Foot Garden!

As the Beatles sang, "I'll follow the sun." As the sun moves north and then south during the summer, I can relocate my garden as necessary to try to keep it in as much sunshine as possible.

So I managed to make two squares for tomatoes and one for green beans.

Hoping for a bountiful harvest!

Mother's Day 2010

2010-05-08T23:56:00.003-05:00

"The bitterest tears shed over graves are for words left unsaid and deeds left undone."

Harriet Beecher Stowe

This is my first Mother's Day without you, Mother. And I have shed many bitter tears in the last two months. As painful as your last weeks and days were, I was grateful for the opportunity to tell you much that was in my heart. Yet every day, I think of something I wish I had told you, something I wish I had done.

Thank you for the countless things you did for me: sewing all my clothes, leading my Scout troop, sending me to camp, saving to send me to college, etc. There are literally too many things to list, but I remember something different every day.

Thank you for all you taught me: right and wrong, responsibility, to have high expectations for myself and to do my best, to be considerate of others, to think for myself. You can rest assured that if Debbie stuck her head in a hot oven, I wouldn't do it, too.

I wish I had appreciated much earlier in my life how much you had overcome, how much you had sacrificed, how strong you were. You occasionally referred to "during the Depression" or "during the War" or "when I was away at school," but it was only in the last months of your life that I learned of some of the hardships you endured. After Dad died, in spite of your visual impairment, and even after your stroke, you fought to stay independent.

And lastly I wish I had made all of those other Mother's Days more special for you. I know that you didn't care a bit about presents. What you enjoyed most of all was my company. I wish I hadn't been so concerned whether my own children would honor or insult me on that day, and had focused on honoring you.

So today, dear Mother, you may not be here in body, but you are always with me.

“All that I am, or hope to be, I owe to my angel mother.”

Abraham Lincoln

Housing crisis hits home, new direction, etc.

2010-05-07T21:17:00.007-05:00

Well, the housing crisis has finally hit home here. A few weeks ago I got a check for about $1000 from my mortgage company, refunding overpayment into myescrow account. I was so pleased at this unexpected windfall, I didn't think about the ramifications of the overpayment. When I got my statement from the county tax assessor this week, I realized that this was not a cause for celebration. The valuation of my house declined about $40,000 in the past year! Now it was over-valued in the past, considering all the rehab and repairs it needs, but this was quite a shocker. It is now valued at the price I paid for it...in 1993.

I finally took the first step on my path to a new career yesterday by signing up for an online course in psychosocial rehabilitation. I plan on taking three courses offered by Boston University, and another two offered by St Lawrence College in Canada. Hopefully I will then be able to pass the exam to become a Certified Psychiatric Rehabilitation Practioner, and by the time the training and certification is complete, I will have had some effective treatment to relieve my spinal problems enough so that I can work at least part-time.

We're looking forward to our trip to Colorado in June, but I have to say that so far, our weather here has been fairly mild. And this is that wonderful time of year when I walk out my back door and the air is fragrant with the heavy sweet smell of honeysuckle, and I walk out the front door and am greeted with the heavenly aroma of jasmine. Texas at its best, in a very brief window of time.

Another year

2010-05-02T10:45:00.003-05:00

Friday we celebrated Gabriel's 24th birthday. We went to Texas Roadhouse for dinner and then yesterday we had red velvet cake from our favorite bakery (the same cake we had on most of Gabriel's birthdays---see above) and the presents. In recent years, Gabriel has asked for clothes and he always comments on the irony that, when he was a kid, he never thought he'd be asking for clothes on birthdays and Christmas! For me, the biggest reason to celebrate this year was that it has been a whole year since Gabriel and I have made a trip to the ER.

My bodyguards

2010-04-29T10:21:00.002-05:00

Grief, despair, and guilt...

They fill me up and surround me,

Like hulking bodyguards,

They keep others at bay.

"Always so serious,"

"Everything's depressing,"

"Just can't take a joke,"

"I want to run away."

Well, this is how I am,

Take it or leave it,

And if you leave, just know

I know how to be alone...

Alone through great sorrow,

Alone in solitary vigil,

Alone in darkest despair

When not a single light shone.

I just wish I could sleep,

But when I lay in bed,

Images of pain and death

Play and repeat in my brain.

If someone would listen

And put an arm of comfort

Around my weighted shoulders,

Perhaps that would ease the pain.

Violets

2010-04-21T02:56:00.002-05:00

I brought you two pots of violets

To brighten up your room.

One was laden with pure white flowers,

But the other had yet to bloom.

I put them on the window sill,

Where they caught the winter light.

You smiled and said, "That's good,"

Pleased by the homey sight.

We considered the barren plant:

What color would the violets be?

"I don't know," I told you softly,

"I guess we'll just wait and see."

Simple words, yet carefully chosen,

I wanted us to share expectation,

To look to a future, to hold out hope,

To banish death from consideration.

Now you're gone, the white blooms have withered,

But now pink violets have burst from the other.

Their beauty brings me bittersweet pleasure,

If only you could see them, too, Mother.

My mother's hands

2010-03-24T10:05:00.000-05:00

Her hands are gnarled and deeply veined,
Their trembling now is still.
At unaccustomed rest they lie,
From work at last released.

Childish hands in younger days
Knew the toil of country life:
Feeding chickens, toting water,
Planting, picking, shelling, shucking.

Shell shocked soldier and Great Depression
Conspired to send her off to school.
Her hands not only wrote her lessons,
But also worked for room and board.

Independent, self-reliant,
With the inner strength her mother taught her,
With determined hands she pushed
The confining limits placed on women.

A mother's hands worked ceaselessly,
Keeping the house, keeping the books,
Sewing thousands of straight, true stitches,
Guiding her children with a straight, true heart.

In later years, her weary hands
Of necessity took over other tasks,
As touch replaced her fading vision,
And gestures augmented her jumbled speech.

Through her pain and through my sorrow,
Our hearts spoke all they had to say.
Her hands grasped mine with newfound strength,
At once both gaining and giving comfort.

And then those precious hands grow cold,
As we look into each other's eyes.
And yet, even now, I feel their warmth
As Mother's strong hands guide me home.

Esther Adams Gregory 1918-2010

2010-03-16T11:54:00.003-05:00

The eulogy, a group effort by the family:

Esther was a Christian who believed and taught her children that religion was a private matter and that one witnessed one’s faith by practicing the Golden Rule. Her code phrase was “Don’t hurt anyone’s feelings.” She was born and raised her children during segregation, but neither expressed nor instilled in her children racial prejudice. Her mother told her always vote for the Democrat. After marrying a federal civil servant from a staunchly Republican family, she rarely expressed her political views until Ronald Reagan’s policies toward retired federal employees had transformed her husband Newell into a Democrat as well. After surgery in early 2001, she told every healthcare worker that she was counting on them to see that she recovered because she needed to live to vote again in 2004.

Esther graduated from high school and entered junior college at age sixteen. It was there that she met the love of her life Newell. Each was walking to vespers with others from their respective men’s and women’s dormitories. When the groups met, they paired off into couples. When he and Esther were the only ones left, Newell remarked that it appeared that it was the two of them. Esther thought he was being a bit presumptuous but reluctantly agreed to walk with him. Telling this story, Newell always added that Esther was the only woman who would have him. Esther and Newell honored her mother’s request that since they were so young, they wait one year to marry. They were married for sixty-nine years. On Valentine’s Day, they would go to the buffet restaurant that they frequented. That day lunch was free for couples married at least fifty years. It was not the free lunch, but the opportunity to announce how long they had been married that drew Newell there.

Esther knew adversity and hardship early in life and overcame it through independence and self- reliance. She and Newell raised their children to be equally independent. After years of being Newell’s ears and he her eyes, Esther returned to independence and self-reliance upon his death. More than anything else, she wanted not to burden her children. Next most importantly, though legally blind, she counted on the continuing judgment of her ophthalmologist from his very first diagnosis of her macular degeneration that she would never be completely without vision and require a full-time attendant.

After her marriage, her children, grandchildren and great-grandchildren, Esther perhaps found the advancement of women during her lifetime most gratifying. As a young woman, her mother had returned to Oklahoma from a properly chaperoned trip to visit relatives in New York City to announce an intent to move there and support herself as a secretary. Esther’s grandfather had forbidden her mother from doing so, declaring that no daughter of his would ever be any man’s secretary. Esther’s mother subsequently taught bookkeeping to men attending business college but could not obtain bookkeeping work herself because she was a woman. By her death, Esther had watched her and Newell’s daughter, granddaughters, nieces and great-nieces pursue whatever careers they chose. In 1984, considering it historic for women, she stood for hours at a rally to hear Geraldine Ferraro campaign as Mondale’s vice-presidential candidate. In 2008 she watched Hillary Clinton compete for the presidential nomination. She transitioned from signing as Mrs. N.W. Gregory to signing her own name and from being “et ux” to being one of the named owners of real estate. When advised that contrary to the apparent custom, her first name had been inscribed on the left side and Newell’s on the right of the plaque marking their couple’s tomb, she responded that if her name was indeed first, it was for the first time ever.

While gratified by the opportunities that opened for women, Esther herself wanted to be a full-time wife and mother. She stretched Newell’s income by employing the home economics which she had studied in junior college and by carefully managing their finances. Her brother-in-law told everyone he knew that if Esther’s sister Jimmye had managed money as well as Esther, he would have been able to retire as a very young man. At one point, Esther studied for and earned a real estate license. Upon realizing that the prime hours for showing properties would be after school, she decided that her family needed her more than whatever income she might earn.

After Newell was drafted, Esther and Scotty spent part of the war living with her mother and sister. Newell’s sisters and sisters-in-law were similarly gathered in Muskogee. The bonds and friendship among them all were forever strengthened as they assisted and supported each other.

Her children thought she authored phrases like “Don’t run with that – you’ll put your eye out.” “Eat your _________. There are children starving somewhere in the world.” “Of course you can’t have a BB gun. You’d put someone’s eye out.” Somewhere in the ozone there is a trove of water guns, pea shooters, Spud Guns, bean flips, sling shots and such. They all disappeared at her hands. Why? Well, of course, they could put someone’s eye out! If one dared use the argument that “Johnny is doing it,” the response would be, “Well, I’m not Johnny’s mother.” Or “If Johnny put his head in a hot oven, would you put yours in too?”

Her daughter-in-law of almost fifty years says that had she looked the world over, she would never have found either a mother-in-law or father-in-law who could have treated her any better or accepted and loved her anymore.

Setting opinions about fashion aside, her grandchildren remember her love, acceptance, support and belief in them. Within her own family, she was truly able to judge a person not by the color of his skin...or his disability or his sexual orientation...but by the content of his character. And, after so many years of being on the receiving end of Grandma's kindness, some of them learned the satisfaction of giving back, by helping her in many small ways after Granddad's death.

Her great-grandchildren remember their and their Grandma Essie’s mutual love but maybe not her exclaiming that they were trying to jump out of their skin or her thinking that Gramps was buying them too many toys. She was proud of their accomplishments, such as earning their Eagle Scout award, and loved to be included in discussions of their college plans.

Newell’s nieces and nephews recall her as tough but kind and dear.

All of her family loved Esther and will miss her so very much.

Advocate for Medicare therapy services

2010-01-27T23:22:00.001-06:00

Today my mother's physical therapist informed me that my mother will be discharged from PT this Friday. This was frustrating to hear, since this is the first week my mother has really felt well enough to benefit from therapy, and after 6 weeks basically spent in bed, she definitely needs therapy to increase her strength and endurance for walking and independence. So why is she being discharged? Because of the Medicare Therapy Cap:

Medicare Therapy Caps to Return in 2010 Without Exceptions (At Least Temporarily)
The Medicare therapy caps will return on January 1, 2010, although the policy will likely be in place for only one month as both health care reform bills that were passed by the House and Senate contain provisions to extend the exceptions process. These bills are being merged together for a final vote which congressional leaders have said they would like to have completed prior to President Obama's State of the Union address in late January.

Until that time, the Centers for Medicare and Medicaid Services (CMS) have reported that speech-language pathology and physical therapy will continue to share a combined cap of $1,860, with a separate cap of $1,860 for occupational therapy. As before, the cap does not extend to services provided in hospitals. Settings impacted by the therapy caps include private practice, rehabilitation agencies, skilled nursing facilities, comprehensive outpatient rehabilitation facilities, physician offices, and Part B home health agency services

Please, friends, contact your representatives and Senators to encourage them to pass the "extension to the exceptions process for Medicare therapy caps."

Colorado Bob is fundraising for Shelterbox - JustGiving

2010-01-27T10:01:00.001-06:00

Colorado Bob is fundraising for Shelterbox - JustGiving

Posted using ShareThis

As the end approaches

2010-01-09T10:06:00.002-06:00

My mother has been in the hospital for several weeks now. She had surgery, and after a few days, was sent to a skilled nursing facility for rehab, to regain her strength and her mobility. Her plan was to be home in 7 days (she's a tough little lady!). But after a few days there, she seemed to be declining. I called her on New Years Day, and I didn't even recognize her voice at first, she sounded so frail. I rushed over to the SNF, and, after spending a few minutes with her, listening to her cough and laborious breathing, I told them to send her to the ER. She was admitted to the hospital with a heartbeat that was way too high and irregular, plus a mild case of pneumonia.

On Sunday, she seemed to take a turn for the worse. It was so alarming to me and so dramatic, that I sent a message to my brother, telling him that it would be good if family members could call her that day. I really thought the end might be approaching.

When my dad died three years ago, it was sudden and unexpected. He went about his business that day: gassing up the car, checking his email, calling his sister. That evening, he died in his recliner, watching TV. We knew this was how he would have wanted to go...no hospitals, no lingering. My mother remarked many times that it would have eased his mind so to know that this was how the end would come. But, because his death came unexpectedly, I felt a lot of regret that I had never told him the things I wanted to say.

So on Sunday, I sat there next to my mother's hospital bed, as she coughed and gasped for breath and moaned, fearing that death might be near. But I couldn't bring myself to start THAT conversation, because I feared that she would think I had given up hope. But obviously she was thinking the same thing, because she opened the door for me by telling me that she wanted me to have her car. Once she said that, the tears welled up, and I began to tell her so many of the things I wanted to say....as did she. It was a conversation I will never forget.

Fortunately she turned the corner the next day and has continued to improve. She is supposed to be discharged back to the SNF today. I'm hoping that she is able to return home, and that when the end does come, it will be sudden...no lingering, no hospitals. But this time, I won't be left with the regret of things unsaid.

The ghosts of Christmas: past, present, future

2009-12-25T22:40:00.003-06:00

OK, I admit it...I'm a melancholy sort of person (otherwise known as clinically depressed). So as Christmas approached, I found myself focusing on all our Christmas traditions that have fallen by the wayside as many of my kids cut me out of their lives. Of course, with so many children, the excitement was palpable, and it looked like Santa had left a whole sleighful of presents under our tree. I made such a conscious effort when they were younger to build our traditions, thinking that, as adults, they would return home for the holiday or at least would continue some of those traditions themselves. But as we dealt with all the turmoil and tribulation of the teen years, the traditions were painfully stripped away, piece by piece. Attachment disordered teens often did their best to ruin the holiday. When we hung stockings, the numbers dwindled, as troubled teenagers ran away or refused to come home from residential placements, and young adults left and never looked back. Fewer and fewer decorations and lights were put up. There were some Christmases in recent years when my depression made the thought of putting up a tree or cooking a big dinner seem overwhelming, especially the year my dad passed away in December and Gabriel was in the hospital for 7 months, or last year when my mother had had a stroke and Gabriel was actively psychotic. This year my mother has been in the hospital and was transferred to a skilled nursing facility a few days before Christmas, so I really gave little thought to Christmas until I suddenly realized I had two days to shop and plan a dinner.

So I've been in a very "humbug" mood, until yesterday, Christmas Eve day. I had heard rumors earlier in the week about the possibility of snow, but, like most cynical Texans, I've heard too many dire warnings about impending winter weather events, only to be disappointed (or relieved) when they totally fizzled out. So I was flabbergasted when it began to snow...and snow...and snow. It snowed for a solid seven hours. And with winds gusting up to 40 mph, it qualified as a real, honest-to-goodness BLIZZARD! The weather folks assured us that there wouldn't be any accumulation, since it had been almost 80 degrees on the 23rd, so the ground would be too warm. WRONG! With such an uncommon snowfall on Christmas Eve, I began to feel quite festive! And this morning I awoke to my first real White Christmas! The last white Christmas on record in Fort Worth was in 1926!

So we had our quiet little Christmas. The gifts were modest, but the boys were pleased. The house was cluttered, but there was no one to criticize me for that. For so many years, I tried to teach my kids that there was more to life than material possessions, but the culture and their peers taught a different lesson. I like this Christmas Present, stripped of the excess, the frantic feeling, the emptiness that can never be filled. The one thing missing was my mother's presence.

As for the Ghost of Christmas Yet-to-come...I don't want to look at what that spirit has to show me. The empty chair today was enough to make my eyes turn away from that vision. For now, so much better to live in the present!

Forever Young...a blessing for my family

2009-12-10T01:27:00.002-06:00

I just finished a little project I've been wanting to put together: a slide show of my family, to Bob Dylan's "Forever Young." I love this song...it's such a powerful blessing to bestow on anyone. So I've been going through my huge box of photos that never got put in albums. It was hard to narrow down the selection and laborious to scan them at Walgreens.

I have to admit it was a bittersweet experience to go through all these pictures. After all the severe behavioral and emotional problems many of the kids had during their teen years, and which many continue to have in young adulthood, sometimes it's hard to remember all the good times. But the pictures don't lie...there were moments of great joy, adventure, fun, and love. I was determined that all my kids, despite their disabilities, would have a normal childhood, including not only the fun parts, but the responsibilities, too.

Five of my children no longer keep in touch with me. I've tried to include at least one picture of each kiddo, but my focus was on the ones who remain part of our family life...the ones who learned some of the values expressed in the song.

Craving conversation

2009-12-05T01:18:00.002-06:00

Human speech is like a cracked kettle on which we tap crude rhythms for bears to dance to, while we long to make music that will melt the stars. Gustave Flaubert

There are times when I would give anything for a normal, free-flowing conversation. I spend most of my time with my family members who have some type of language disorder.

There's Marcus, who suffered a severe traumatic brain injury at the age of 2. The left hemisphere of his brain was so damaged that now, according to his last CAT scan, there is very little brain tissue left on that side and it has been replaced by cerebrospinal fluid. So I guess it's a testament to the plasticity of a young brain that his right hemisphere took over the language responsibilities. He is able to understand a great deal of what he hears on the news, especially with the extra visual input of the video, and sometimes he surprises me by some fairly sophisticated vocabulary he uses. But his ability to pronounce words is impaired, as is his grammar. He has difficulty with memory and often fails to understand something simple I'm trying to tell him. He also has a habit of using a very repetitive, circular type of conversation, in which he basically says the same thing in about a dozen slightly different ways...a habit that really tests my patience at times.

Gabriel, as I have mentioned before, tends to obsess on certain topics like the Mafia, the Queen of England, rappers and gangsters, etc. His hebephrenic schizophrenia also causes him to be on the silly side, so he'll make really silly jokes over and over again. For example, he says, "Coolie (the dog) was making gang signs," and he thinks this is hilarious. He jumps from topic to topic, in a schizophrenic stream of consciousness. His memory skills are very poor, so he asks the same questions he asked yesterday, or even earlier in the day, because he has literally forgotten the answer or that he even asked the question before. I try to engage him in more normal conversation, but often my efforts are met with a total lack of affect and/or interest. When he's quoting someone, for some reason he assumes a very high pitched voice, and has taken to flapping his hands when he's talking as well.

Tevis, who spends most weekends with us, is a different challenge. He has the WORST stutter/disfluency I've ever heard, repeating the beginning sound or word or phrase up to a dozen times. He has a certain amount of apraxia and a very nasal quality to his speech, so he is pretty hard for most strangers to understand. He also asks questions repetitively, ones he has asked a hundred times and knows the answers to. (I personally think special education teachers inadvertently reinforce this, as they are constantly asking their students questions to test their skills and knowledge, rather than simply conversing with them.) And he thinks he has to be talking about 55 minutes out of every 60! But, to Tevis' credit, although he has a measured IQ of about 40, he has a lot of common sense, is very observant, is tuned into other people's feelings, and has picked up a lot of information he's heard. For example, when I told him that we might move to St. Louis, and they have more snow up there. "You need to get a car with 4 wheel drive, in case we get stuck in the snow," he opined. In some ways, he's more functional than Gabriel, which makes me very sad.

And then there's my mother. I remember the days, when the kids were young, that I used to call her every day, just to talk, blow off steam, get advice. As she got older and a little more cranky, I called less often, as I wanted to avoid her complaints. What wouldn't I give now to have a normal conversation with her, complaints and all? Her stroke last year left her with Wernicke's Aphasia. She understands what is said to her, and knows what she wants to say, but much of what she says comes out as gobbledy-gook or the Jabberwocky of Lewis Carroll. I call her and ask how she's doing. She can now answer automatically, "Oh, pretty good." But then she continues, "I was just lasting here frankly on the clasp. The man was spelling the sepler today, and it was something, but we got it done." Somehow I understand that she is sitting on the couch and that her personal care aide came and did the laundry, which there was a lot of. I often think of that scene in "Saving Private Ryan," in which the young medic, sitting in a darkened, deserted ruin of a church, talked about how his mother would come home from the late shift and would want to talk with him. "She'd stand in the doorway looking at me... and I'd just keep my eyes shut. And I knew she just wanted to find out about my day - that she came home early... just to talk to me. And I still wouldn't move... I'd still pretend to just be asleep. I don't know why I did that," the young soldier says quietly, with pain and regret in his voice.

Even when my other kids lived at home, it wasn't any better. I had the "cocktail party" speech that is a feature of Non-verbal Learning Disability and hydrocephalus/spina bifida. I listened to the circular reasoning of Fetal Alcohol Effect. I tried to tune out the insults of a sociopath. I was bombarded with the emotional abuse and the narcissistic monologues of a borderline personality. And I had to use intense concentration to understand the language of severe spastic/athetoid cerebral palsy.

When I was working, I used to have the opportunity for normal conversation sometimes. Now, I didn't get much of that from my co-workers; the "Me-generation" doesn't engage in much give-and-take with anyone twice their age, it seems. I did enjoy conversation with some of the parents of my patients, especially those who were closer to my age. But we were under instruction from the agency to refrain from conversation about our personal lives, so I felt some restraint in my interactions. Some parents....well, let's just say there wasn't much to talk about with them, like the mother who complained when I dared to take a whole week off when my dad died. But now that I'm not working, my interaction with others outside my family has been limited. OK, I admit it, I'm something of a hermit, though not entiredly by choice!

To my readers who have children who are non-verbal, you might be thinking, "What is she belly-aching about? At least her kids are able to talk!" I know that I am very lucky that all of my children, even the ones who have very significant disabilities, are verbal. It's just that sometimes a little normal conversation would "melt the stars."

Poem for World AIDS Day 2009

2009-12-01T01:05:00.002-06:00

For all the sons and brothers,

For all the sisters and daughters,

For all the friends and partners,

For all the lives touched by AIDS,

We remember.

For all the unknown homeless,

For all the famous celebrities,

For all those surrounded by family,

For all those who suffer alone,

We remember.

For all the poetry unwritten,

For all the songs unheard,

For all the voices silenced,

For all the work unfinished,

We remember.

For an end to prejudice,

For healthcare for all,

For compassionate support,

For a real cure at last,

We hope and pray.

The dark cloud to the silver lining

2009-11-29T13:38:00.004-06:00

For the last couple of days, we've had the pleasure of Gabriel's company during our normal waking hours. Usually he wakes up after midnight, stays up for only 6 or 8 hours, and goes back to bed in the morning. Needless to say, this is not a very good schedule for him, as it limits his socialization with the family, his activities, his exercise, and his regulation of his diabetes. But it has been a very difficult pattern to break. But since he got up for an early Thanksgiving lunch at my mother's and stayed up the rest of the day, he actually managed to stay on a more normal schedule for two days. I was feeling pretty good about this, and tried to give him some positive feedback ("great to spend some time with you, do you like getting out more since you're up during the day, etc").

But last night I realized that this might not be as positive a development as I had thought. We went out to eat and Gabriel was fairly morose and withdrawn. During the day he spent most of the time with his headphones in his ears, with his Walkman radio blasting. And in the evening, as I watched TV and worked on the computer in my room, he came in and hung around, talkative at first (more gangster and Queen of England talk, along with other topics). But then i realized that he was sitting silently on the daybed in the room, staring at a fixed point on the floor, then sitting miserably with his head in his hands. I asked if he was OK and he said yes. But then I got more specific and asked if he was seeing things or hearing voices: affirmative on the former, negative on the latter. Questioned further, he said they weren't scaring him or threatening him. But he stayed up until 3 or 4 AM, and that wakefulness often indicates a certain amount of agitation or fear of being by himself. I went to bed with that familiar knot of apprehension tightening in my chest.

Strong foundation

2009-11-27T18:15:00.005-06:00

Well, well...it's been quite a week. When I posted a simple statement on the Oak Cliff Bicycle Company site, expressing my opinion that the poster and theme for the Kennedy Assassination Bike Race was in poor taste, and followed it with a blog entry on my own personal blog, I never expected such a furor. Many folks have expressed agreement that the poster was offensive, and a poll conducted on the CBS 11 News site found that 76% of those participating thought that the poster was "A bad idea-It's offensive."

But there has been a vocal minority, mostly young cyclists, who have defended the poster and theme, many leveling personal attacks at me. Most have accused me of wanting censorship, though I never asked that the poster be removed. I have been called a "nosy old busybody." (I guess that means I'm interested in history, current events, and what goes on in my society and community.) Another person characterized me as "a humorless bore." (My friends actually consider me fairly witty, but I don't see anything humorous in assassination, violence, or intentionally causing people pain.) I have been compared to Sarah Palin (scratching head)!?!? My spinal condition and my weight have been fodder for snide remarks, and one person stated, "Her son is a schizophreniac (sic)," as if that were the punchline of a joke.

The most amusing comments were those that suggested that I find something more constructive to do with my time. One such comment read:

Surely, in this day and age, you can find plenty of other things to spend your energy on changing or speaking out against. There’s all sorts of injustices in the world and in our home state. Might I suggest volunteering at the local animal shelter, feeding the homeless on Thanksgiving, visiting the elderly at a local nursing home or something else equally noble to get you away from your computer?

Once I stopped chuckling, I informed this helpful young lady that I had adopted 10 kids with disabilities, raised them as a single parent, provided therapy to disabled kids for 30 years, help take care of my 91 year old blind disabled mother, and have rescued 5 animals from shelters. To both of the people who suggested that I do something to better the world, I asked what exactly THEY had done to contribute to the common good. Strangely, neither responded. It is SO typical of that generation to think they are superior and qualified to lecture someone more than twice their age about how to live their life!

I hope that these folks aren't representative of an entire generation. I see people who are self-absorbed, hedonistic, and amoral. They don't build anything up; they only tear things down. Everything is a joke, and the more insulting or degrading, the better. They don't have respect for anyone or anything. They have the attitude that "anything goes," at least anything THEY want to do. Their mantra is "whatever." To me, they are pathetic: empty, lost souls with no moral compass.

But, I didn't intend for this to be a rant. I must admit, I'm not feeling very charitable towards these folks after all their comments this week. I was sending some mental arrows their way: I hope you have freezing rain for your race, I hope a construction truck drops a case of nails on your route, I hope you get a bad case of hemorrhoids. (Actually I have read one report that the race may have to be cancelled because the organizers did not get a permit for use of the park.)

But, rather than cursing their moral retardation, I'll send them a blessing. This is what I wish for them (in the words of Bob Dylan):

May God bless and keep you always,
May your wishes all come true,
May you always do for others
And let others do for you.
May you build a ladder to the stars
And climb on every rung,
And may you stay forever young,
Forever young, forever young,
May you stay forever young.

May you grow up to be righteous,
May you grow up to be true,
May you always know the truth
And see the light surrounding you.
May you always be courageous,
Stand upright and be strong,
And may you stay forever young,
Forever young, forever young,
May you stay forever young.

May your hands always be busy,
May your feet always be swift,
May you have a strong foundation
When the winds of changes shift.
May your heart always be joyful,
May your song always be sung,
And may you stay forever young,
Forever young, forever young,
May you stay forever young.

Disgusted

2009-11-22T21:21:00.006-06:00

Recently I've been pining for the vintage vehicle of my college youth...a 3-speed bike. I see no need for 24 speeds, and every bike I ever bought my kids constantly had problems with the derailleur. So I've been browsing online to check out 3-speed commuter bikes (not easy to find!). My search took me to the site of the Oak Cliff Bicycle Company where I was horrified to find the following flyer for a local bicycle race next weekend.

This flyer is so repulsive to me on so many levels, I don't know where to start. First, I left a comment on the bike shop's site, telling them how offensive I found the poster...and the very concept of the race. I added that I assume that the folks behind the race and poster did not live through that terrible time. The site owner responded: "No they did not. We’re sorry, we honestly do not want to offend anyone but I’m also not going to censor their Flyer."

In my mind, this poster is a symbol of so much that is wrong with our society. It is a reflection of how so many people, especially those of Gens X and Y, have become numb to images of graphic violence. From video games to movies, these young people have seen hundreds, if not thousands, of scenes of exploding brains, steaming entrails, and other gratuitous gore. It also expresses that desire to shock people's sensibilities, just for the sake of being shocking.

In this age of the 24 hour news cycle, when cable news devotes a whole afternoon to live coverage of the Balloon Boy hoax, these folks can't imagine the depth of a nation's despair during the week of November 22, 1963. I remember that, after the assassination and into my high school years, when that ominous voice broke into a TV program and intoned, "We interrupt this program to bring you a special announcement," my heart leapt into my throat, and I braced myself for some bit of devastating news. I was in sixth grade in 1963, and to me the assassination marked the end of innocence, the end of childhood as I knew it. I watched as the caisson moved down Pennsylvania Avenue, and the drumbeat and the clopping of the horses' hooves was the soundtrack of grief. After seeing the widow in the blood-stained pink dress, or watching a little boy on his third birthday saluting his father's coffin, it is impossible to understand how anyone could make that poster for the JFK Assassination Bike Race.

Maybe I should give them the benefit of the doubt. Maybe the people behind this race and poster aren't cruel or sadistic. Maybe they are just ignorant. Maybe all they know about the JFK assassination is what they learned in high school history class, which probably amounted to answering a couple of multiple choice questions about the presidency of Pres. Kennedy. Perhaps this video will give them an inkling, just an inkling, of the scope of the nation's grief.

UPDATE:

The race went on as scheduled, even though the organizers did not have a permit. When interviewed by Channel 11 news, Race organizer, Alain Warchilde, stated: "It's not my art work. It's a cover from the 1978 single for the Misfits; something I felt tied in with to the theme of the race. That's the reason it was used, not to offend anybody… not to upset anyone."

What an absolutely specious argument! The Misfit single Warchilde is referring to is an obscene, even more offensive, song about the assassination. If it tied in with the theme of the race, then the whole thing was obviously intended to offend and upset people!

Troubling signs

2009-11-19T23:40:00.003-06:00

Oh, no, please...not again! We've had about nine blessed months of relative calm, at least in regards to Gabriel's schizophrenia. After our five months of hell last year, when the doctors started messing around with his medication, he's been functioning fairly well, thanks to his Clozapine. Well, I do use the term "functioning" fairly loosely. He still has major cognitive problems, he sleeps about 18 hours a day, and his hebephrenic silliness seems to be increasing. But the delusions and hallucinations have been kept at bay, and that's something.

But I'm seeing troubling signs that things may be deteriorating. Now Gabriel has always been somewhat quirky and obsessive about certain subjects. Over the years his consuming topics of interest have been fast food (through severe anorexia and back), video game systems (he rarely plays video games but loves to discuss the pros and cons of all the systems that have come out over the years), the stock market, Men in Black (the source of many of his previous hallucinations of aliens), etc. Now his favorite topics of conversation (monologues) are the Mafia and the Queen of England.

The Mafia has been a frequent component of previous delusions. During his last decompensation, fears of aliens suddenly gave way to fears of the Mafia trying to kill him. Now, with daily exposure to Sopranos reruns, he talks frequently about the Mafia. Do you have to be born into it, does it have a lot of money, isn't it different from the Mob, and on and on. At this point, it doesn't seem to have devolved into real delusions, but when he ruminates on a subject like this, one that has a threatening element, it can be a troubling sign.

His other obsession is the idea that his birth mother is really the Queen of England. This one seemed to start as a joke, and still retains some of that playful quality, but it seems to taking hold as something of a delusion. He asks how many police and body guards would accompany the Queen if she came to Forest Hill to visit, and jokes that someone is at the door asking for John X (his name at birth) as his birth mother, the Queen, wants to meet him. I really have to bite my tongue to keep from blurting out, "No, actually, your birth mother was Tina Turner!" (That was HER delusion...)

At this point, I'm hoping that these ideas are just manifestations of Gabriel's quirky thinking and not the beginnings of genuine delusion. I'll bring them to the doctor's attention at his next appointment. Meanwhile, though I feel guilty admitting it, sometimes it's a relief that he sleeps during so much of my waking hours, as the obsessive monologues wear on my nerves at times. I'm looking into some cognitive remediation training, but more on that in a later post.

The cure for coonhound depression

2009-11-17T10:52:00.005-06:00

In my previous life (before spinal stenosis), one of my favorite pastimes was walking or hiking with Banjo. We would go to the urban grassland preserve here in town or, on a nice Saturday, we would head down to Dinosaur Valley State Park to hike, explore, wade in the river, "hunt." (At least Banjo thought we were hunting.) But with my mobility limited to about 15 minutes of painful walking, hiking fell by the wayside, much to Banjo's chagrin. Like that sad dog on the Cymbalta commercial, waiting expectantly with his leash in his mouth, Banjo would agree, "Depression hurts."

But in recent weeks a change in medication has relieved some of my pain, allowing me slightly more mobility. And I discovered a city park in nearby Arlington where there are wonderful nature trails, with native plants, a tiny creek, animal habitats, and a very comfortable cushioned surface (thick mulch, perhaps?) that is less stressful on my spine and legs. So I've managed to take Banjo hiking there several times and we're both loving it!

A couple of weeks ago Tevis and I spent a pleasant fall afternoon exploring the trails. At my insistence we stopped to take some pictures of Banjo in the ravine. As you can see, Banjo took umbrage at interrupting his hunting to pose for pictures! He wanted to get his nose back to the ground, sniffing for raccoons or possums.

Just like a child, he got a bit of an attitude and decided, "OK, if you're going to make me stop for a picture, I'll just make a silly face!"

As you can see from this picture, hiking is the cure for coonhound depression. (And it's pretty effective for humans, too!)

Hooray for fall!

2009-11-15T14:03:00.011-06:00

For most people, fall is associated with decay, death, deterioration, rot, and withering. But here in Texas it often brings a new flourish of life!

During the summer months, when we swelter in 100+ degree temperatures for days on end and even the nights bring no relief, life often seems to come to a stand still. When a person opens the door and is overwhelmed with a blast of hot air, akin to the opening of a blast furnace, only the hardy or foolish will venture forth outside unless they unequivocally must. Parks and playgrounds become barren wastelands. The heat is too much for many flowering plants, which droop listlessly without a bloom.

But then fall arrives. No, we don't have the spectacular fall foliage that our northern neighbors enjoy, but we have new life, resurrection! Those withered vines grow with renewed vigor, blooming more spectacularly than they did in the spring.

Pink morning glories twine and put forth little trumpet blooms.

Purple morning glories open each morning

and stay open well into the afternoon, glorying in the cooler temperatures.

Black-eyed Susan vines stare wide-eyed at the autumn sun, angled now from the south.

And finally people emerge from their houses. Unconsciously they hold their breath when they open the front door, expecting that blast of heat, but, amazed, they find welcoming cool air. Suddenly people are everywhere: raking leaves, playing football, riding bikes, taking their kids and dogs to the park, feeding the ducks, luxuriating in life!

So here's to fall, which brings some of us welcome relief and sense of vibrant life!

AWOL

2009-11-12T09:46:00.002-06:00

I've been AWOL from my blog for so long, I figured I'd give everyone an update. I'm still on long-term disability (it's been almost a year now) due to my spinal problems. I haven't really had any treatment yet, except for medication, because my cardiologist wouldn't release me for any procedure that required going off my Plavix or aspirin. Now he's released me, and I've consulted with several doctors with a growing sense of frustration. I've had conflicting recommendations (you need nerve blocks not steroid injections, you need steroid injections not nerve blocks, you're not a candidate for minimally invasive surgery, you are a candidate for it, etc). One doctor completely turned me off by seeming to trivialize this problem that has put my life on hold: "Well, you have a little arthritis and a little slippage." (This one told me that the baby aspirin that I take for my cardio problems should take care of my pain!) At two surgeons' offices, I didn't even see the doctor, just the physician assistant. So the upshot is that I'm going to have epidural steroid injections and if they don't provide any long term relief, I will hopefully have minimally invasive surgery. I want relief and I want my life back!

As for the boys, they are doing fairly well. Gabriel hasn't had any major problems since he got back on his Fazaclo. He sleeps too much and seems to exhibit more of that hebephrenic silliness, but the major hallucinations and delusions have been kept at bay, plus he's interacting with us. Keeping his diabetes under control is another story. He has managed to learn how to give himself the insulin injections, but getting him to check his blood sugar regularly or to modify his diet is like beating my head against the wall.

My mother just keeps plugging along. She just celebrated her 91st birthday and is still living at the independent living apartments, with some extra services. With the benefits of an antidepressant, she has become much more sociable, and so is enjoying life much more. I've started taking her out to eat once a week and Jesse goes to do her hair and nails frequently, and she really looks forward to that time together. I consider myself so fortunate that I have this time to spend with her, as it has brought us closer.

I am now a grandmother...Leslie had her baby, a little girl whom she named Hosanna Rachel (Hosanna is Leslie's middle name). As she is unable to care for a baby, Leslie's caregiver has agreed to become the baby's guardian and take Hosanna into her own home, so that she didn't have to go into the foster care system. I have a lot of mixed feelings about the whole situation, but it is what it is.

So, that's the wrap up. I hope to be more regular in my posts...glad to be back.

Autumn Days

2009-11-11T10:27:00.004-06:00

The windows facing northward let in only muted light,
As autumn days grow shorter and the sun moves towards the south.
With long-dimmed vision the old woman on the couch
Scarcely observes the subtle changes of the shifting light.
The shortened days pass slowly, monotonously, silently,
Interrupted only by the clock punctually chiming the hour
And by three trips to the dining room, equally punctual.
Between rising and retiring the hours must be filled,
And so she fitfully dozes and dreams, wakes and remembers.
Ninety-one years worth of memories flit erratically
Through her mind, like a rare, delicate butterfly, sometimes
Alighting long enough to be studied, savored, embraced,
Sometimes flitting so quickly that they are only a blur.
A short childhood, a Depression, hard work, World War,
College, a marriage that endured for sixty-nine years,
But most of all she remembers the people in her life:
Dear Mother, steadfast husband, beloved sister---all gone---
And the three children to whom she devoted her life.
So many memories that make up the fabric of her life.
She'd like to wrap her children in the warmth of that fabric,
But now it is too late. A cruel stroke of fate has robbed
Her of her voice; her words are jumbled, twisted, fabricated,
Stubbornly refusing to convey the meaning in her mind.
Now she waits, through ever shortening days, to be wrapped
In the warmth of the memories of her children, as they weave
Her history and strength into the vibrant cloth of their lives.

Her name is Neda

2009-06-22T22:40:00.002-05:00

Her name is Neda.
She is daughter, sister, friend,
Loved by many.
She studied, laughed, and walked
Down Tehran's streets.
She dreamed of a future
Full of promise.

Her name is Neda.
Cut down by a coward's bullet,
She lay on the street.
While her friends begged, "Stay with us,
Don't be afraid,"
Staring into the light of heaven,
She breathed her last.

Her name is Neda.
Her clear voice calls out to all
Who love freedom.
We hold her memory close,
Close in our hearts.
We will stay with you, Neda...
We are not afraid.

Courage in Iran

2009-06-16T01:36:00.004-05:00

For a long time I blogged on Yahoo 360. Then Yahoo decided to put it on the chopping block, and it got so glitchy, adrift on the sea without support, that I moved elsewhere. 360 is officially closing in July. I haven't checked out my page or friends' updates in many months, but I returned today. Mainly I was curious to see what was going on with my one friend in Iran. I was amazed.

I don't even know my friend's name as her page is in Farsi. Of course, I am unable to read a word on her page. But the meaning today was clear. On her page the profile photo is now a burning fire and many of her friends have the same profile picture today. As I visited page after page, pursuing a trail of flame, the message became ever clearer and more urgent. Some people had posted pictures of the protests. Some had posted a graphic picture, censored by the western press, showing the protester killed by the government militia, his head in a pool of blood. Many bore the message, in English, "Where is my vote?"

Browsing these pages opened my eyes to an Iran that I hadn't even realized existed: one where people dissent, where women have non-traditional roles, where western TV, movies, and music are popular.

I admire these young (and old) Iranians for their courage as they take to the streets to insist on a fair election and as they dare to dream of change.

What an inspiration!

2009-06-13T14:26:00.003-05:00

I was watching CNN while ago and they happened to have a story about a camp in Georgia for kids with Tourette Syndrome. The driving force behind the camp was a man named Brad Cohen, who has TS himself. I googled his name and discovered that he is an award-winning elementary teacher who has written a book about his experiences growing up with TS and becoming "the teacher I never had." On his website he has the video of his appearance on Oprah. I was so moved by his story, and especially the video of the kids in his class and school at the end.

May all of our children be lucky enough to have at least one teacher like Mr. Cohen in their lives!

A new beginning?

2009-06-04T22:44:00.003-05:00

Thank you, Mr. President, for reaching out to the Muslim world, for attempting to engage them in a dialogue and in common interests. In light of the President's speech in Cairo, this beautiful version of an old song seemed fitting for the day.

Please visit my new blog

2009-06-04T18:07:00.002-05:00

I have decided to start a new blog called "Hands Up," which will be a venue to share activities for fine motor development. I hope you'll visit and, if you know anyone who might be interested, please let them know about it, too.

Memorial Day family camp at NSCD

2009-06-01T20:10:00.010-05:00

We spent a long Memorial Day weekend at the Family Weekend Camp at the National Sport Center for the Disabled in Winter Park CO. I use the term "camp" loosely, since we stayed in a beautiful million dollar condo (my kind of camping!). We flew up to Denver on Friday and drove out to Winter Park, where we spent the first night at the Rocky Mountain Hostel and Inn.

Since it was the first night the hostel was open for the summer season, we had the whole place to ourselves! We had a restful night's sleep in a very nice private room and the next morning woke to find a fully stocked kitchen, where we cooked a tasty breakfast.

Then it was on to camp. After settling in to the condo, we took off for Monarch Lake to canoe.

After a picnic lunch, we unloaded the canoes and kayaks.

Marcus gets a quick lesson in paddling.

We paddled to the end of the lake in search of moose, but, alas, no moose were to be found.

Then it was back to the condo for the night. With only one other father and son participating, we had plenty of room to relax.

The next morning we got up early, ate breakfast, and drove through rugged country up the Colorado River to go white water rafting. Unfortunately, I have no photos of the white water, because I was too busy paddling and trying not to fall off the raft!

Marcus and Gabriel did their share of paddling.

We lucked out on the weather, until the last 10 minutes of the raft trip, when it poured a VERY cold rain. We were glad to get into some dry clothes and get back to the warmth of the condo.

The last day we went on a trail ride (unfortunately I don't have any pictures). It was the first time I've had the chance to ride through such spectacular surroundings. Then, alas, it was time to leave.

I am so glad we went on this trip. It was our first family vacation in 13 years, since I never could afford to take time from work. After my heart attack last summer and Gabriel's deterioration during the fall and winter, I felt an urgency to do something special with the boys, to give them some new experiences. The only downside of the trip was coming back home to Texas where the temperatures are in the 90s (groan).

Update: Ups and downs

2009-05-03T10:24:00.005-05:00

Since I've been neglecting my blog for the last few months, I felt that I should give you all an update on Gabriel. When I last wrote about him in January, he had finally been hospitalized after all those months of being actively psychotic and non-functional. At that point the plan was to commit him to the state hospital. But once they had him back on Clozapine (the "gold standard" of antipsychotics), he rapidly improved. Within a week and a half, he was well enough that they were able to send him home from the local hospital. In fact, he's functioning quite well on half his previous dose. It's good to have him back.

On the downside, he spent last week in the hospital, because his blood glucose was sky high (875!). We've had to make considerable changes to our schedule and eating habits, and now he's on insulin injections, as well as oral medications. This crisis was a sobering one for me. I always worry about what will happen to Gabriel when I'm gone, and now this fear has increased exponentially. I know that if Gabriel doesn't have someone to care about him and supervise him closely, the path to life on the streets will be short, and that street life would be deadly for him, given his diabetes and his vulnerability.

I also feel what Martin Luther King called "the fierce urgency of now." I know that at some point Gabriel may not function as well as he does now, so I feel an urgent need to make his life as full as I can while he can enjoy it. So Marcus, Gabriel, and I are going to Colorado over Memorial Day weekend to a family camp at the National Sports Center for the Disabled in Winter Park. There are probably a lot of other things I should be spending my money on, but this urgency of now put the camp at the top of my priority list. Gabriel has never seen mountains and never been on an airplane, so I wanted him to have those experiences. In fact, we haven't taken a vacation in about 13 years. Now that I have the free time, I want to take the boys to see some new places and have some new experiences. We are very excited about the trip and I hope to post pictures and video when we get back.

The end of the line: expectations collide with reality

2009-05-02T04:16:00.001-05:00

And so I’ve come to the end of the line…the end of my 30 year career as an occupational therapist. I’ve been put on long term disability and terminated from my job. After 30 years of lifting kids at work and at home, the pain from my degenerative disc disease and spinal stenosis is unbearable, and the doctors say I shouldn’t be putting any more stress on my spine. Barring some medical miracle, I doubt that I’ll ever be able to return to this kind of work.

I have to say that, at the end of the line, my expectations had a head-on collision with reality. This certainly wasn’t the way I saw my career ending. It’s not that I ever imagined myself as a supervisor or department head. That’s just not my cup of tea. I hate telling other people what to do…I’d rather do it myself. I am the first to admit that I lack the organizational skills to manage or supervise, and that I have an aversion to paperwork that borders on a phobia. What I always loved about my job was working directly with the kids and seeing the progress they made.

But what I did expect was that all those years of experience would count for something in the eyes of my bosses and colleagues. I was wrong. I didn’t see Gen X and Gen Y coming. I guess I had always assumed that I would be supervised by people who were my seniors or at least my contemporaries, people who had respect for the knowledge and experience I had gained over 30 years. But, no, Gen Y disdains experience, you see. In their eyes, it only makes you out of touch and outdated: a dinosaur. In their opinion, it is irrelevant that I was practicing OT before they were born. So what if I had treated kids with disorders that they had never even heard of? So what if I had personally raised 10 kids with disabilities? (They felt quite qualified to give patients’ parents directions on managing behavior, even though they didn’t have even one normal child of their own.) I must have appeared to have no ambition and did not constantly promote myself, and to them those are signs of inferiority.

And, so, in the final 5 years of my career, when I felt that I had earned a measure of respect, I came up empty handed. When I signed on with the company, I was offered a respectable hourly compensation, based on my extensive experience. It was downhill from there. I first realized which way the wind was blowing when I attended my first Christmas party, when they announced the winners of Therapist of the Year. I’m embarrassed to admit it now, but I actually thought I had a chance that first year. But as I saw all of the 20- and 30-somethings step up to receive their awards, I realized that my time had passed. In meeting after meeting, I heard therapists praised for the astronomical numbers of visits they made each week, and realized that, given my declining endurance and energy, I could never compete. While the parents of my patients were often complimentary of my work, as their children made impressive progress, those positive words were never repeated by the bosses.

And then the downward spiral began in earnest. Those of us who had been offered a higher rate due to our years of experience saw our pay cut by 11%. This was a tremendous blow to me, as it signified a lack of respect for my accomplishments. With the onset of my son’s schizophrenia and then my dad’s death, I struggled with profound depression, but tried to keep plugging away. I was floundering financially because I was never given an adequate number of patients, and then I found out another therapist (one of the self-promoters) who worked in the same area was making 50 visits a week, compared to my 12 or 14. Last June I was given a mediocre job performance evaluation, and I was devastated, as I felt it was an evaluation that would have been given to someone right out of school. I have no doubt that the stress of that evaluation contributed to my heart attack the next month. I got an inkling that my decision to discharge a patient was being second-guessed between another therapist and the manager behind my back. I was quite disappointed that the milestone of my 30 year anniversary of practicing OT passed without mention. And then, the coup de grace: I recommended discharging a patient and his mother called the office to question that decision. Did the case manager and district manager express confidence in my professional opinion? Did they stand up for me and tell the mother that I had more experience than any therapist on staff? Nope…they arranged for another therapist to provide a second opinion, as if I were a rookie therapist.

And so my life’s work comes to an unceremonious end. No retirement party, no testimonials, no gold watch, no nothing. Just an envelope of COBRA forms in the mail and a last trip to the office to turn in my electronic equipment. The words of T.S. Eliot keep going through my head:

This is the way the world ends
This is the way the world ends
This is the way the world ends
Not with a bang but a whimper.

But wait, I do have a testimonial. A few years ago I ran into a former student of mine, a young man with cerebral palsy. He was in first grade when I started working with him my second year of practicing OT, so he was in his mid-30s when I ran into him. When I told him who I was and that I was his OT in elementary school, he grinned and said, "I remember you. You taught me how to write and how to dress myself. You wanted me to be independent. My mother wanted me to be dependent, but you wanted me to be independent!" And that was better than any Therapist of the Year award.

This and that

2009-03-15T00:57:00.004-05:00

I've been letting my blog slide lately, I'm afraid. I'm still writing a lot of articles on Helium. I'm really enjoying it, as I'm learning quite a bit as I research various topics. Plus, I have to admit, I'm kind of competetive, so I like watching my articles move up in ranking.

I've also been feeling down. Sometimes I feel so isolated, and it seems like even if I try to reconnect with old friends, I don't have any success. I think that in the past, when I was going through trying times with my kids, I was abrasive and alienated a lot of folks. Or, maybe we just drifted apart. Anyway, on a whim, I called an old friend and we talked a long time. We were catching up on some common acquaintances, and, in an off-hand way, she said something like, "oh, I think that was when Leslie's husband died." I couldn't believe my ears. Leslie and I had been pretty good friends in the past and I had known her husband back when he first came to the US from Croatia, but we had lost touch over the last 10 years. I deeply regretted the loss of our relationship.

And meanwhile, I've had several calls over the last month or two from an administrator at the center where my mother lives, reporting that my mother has been getting very angry and almost aggressive at times with other residents and the staff. I felt like I had been transported back in time to the days when I got all those phone calls from my kids' schools about their behavior! I called her doctor and he prescribed some medication, but it wasn't effective. So I did some research online and found that "inability to control anger and aggression" had been identified as a condition that occurs in 1/3 of people who have had strokes, especially those with left brain strokes and aphasia, like my mother. The recommended treatment was the use of an SSRI anti-depressant. So I called the doctor back, he prescribed an SSRI, and, thank goodness, it seems to be helping. I'm so relieved. I know that my mother is pretty isolated, due to her severe aphasia, and I would hate to think of her spending her last years isolated even more by being unpleasant to those around her. I think it would help her outlook if our family members would keep in touch with her, and I wrote everyone an email to encourage them call or write her, but no one but my brother in Houston has done so. I just don't understand...

Sometimes it seems as if some people have so many relationships, that some become expendable. But the folks tossed aside may lose their only connections.

Links to my Helium articles

2009-03-01T11:46:00.003-06:00

I am still off of work on short-term disability due to my back problems. So I've had a lot of time to pursue some of my interests, including writing on the Helium website. I hadn't been active on the site for some time, so, alas, a lot of my articles lost ground in the rankings due to my inactivity. I thought I'd post links to a couple of my pieces that pertain to disabilities, as they might be of interest to some of my readers here.

Parenting a handicapped child (for those who prefer "people first" language, keep in mind that on this site, the title is already chosen for the suggested topic!)

Autism: Why and how to treat toe-walking

And, by the way, I earn a small pittance when people link in.

A glimmer of hope

2009-02-21T11:55:00.003-06:00

I have often bemoaned the fact that, after so many years of parenting, I felt like a failure in so many ways. Foremost among those failures was the fact that so few of my children seem to have absorbed the values I hold dear. But every once in a while, there is a small glimmer of hope that maybe, just maybe, something stuck.

My son Jesse has been going over to my mother’s every couple of weeks to give her a haircut, which both she and I have greatly appreciated. But this week Jesse came up with an idea that really blew me away. He said he wanted to go over to see Grandma every week, just to visit, but he was trying to think of something they could do together. I have to say I worry a lot about my mother and the fact that she has so little to do during the day. Her vision is so limited that she can’t read nor does she watch TV; in fact she got rid of both TV s after my dad died. She won’t participate in any of the activities at the center, mostly because she doesn’t think she can due to her vision. She is totally intimidated by even the simplest technology, eg, turning on her radio or pushing a speed dial button on her phone, so listening to audio books isn’t an option. Her main pastime used to be talking with folks, but since her stroke, she can’t even do that.

So Jesse was trying to think of something they could do together. Finally he said, “I was thinking I could read to her.” We started considering what he might read, and I suggested that if he could find a novel set in Oklahoma during the Depression, she would enjoy that. So we came up with “Where the Red Fern Grows” and “Remnants of Glory” as two possibilities. I think my mother will be thrilled. She will enjoy Jesse’s company immensely. He was always special to her, and even during his turbulent youth, she never lost hope that he would “straighten up and fly right.” She is proud that he is so intelligent and was always such a precocious child with an amazing vocabulary, and that he was such a good reader. So she will undoubtedly love listening to him read.

I am so pleased that Jesse came up with this plan…maybe something did stick, after all!

Been there, done that

2009-01-26T11:32:00.001-06:00

Blogging has become a wonderful tool for parents of disabled kids. While exploring Blogger, I have discovered so many fascinating blogs where parents celebrate their kids’ achievements, grieve their losses, support other parents on their journeys, vent their frustrations with the medical and educational establishments. They have created a network of support that spans the globe.

With my kids all grown up and mostly on their own, I admit to having a feeling of “been there, done that” at times. I remember my outrage at insensitive or condescending doctors. I remember the ache I felt when my kid was left out or teased. I remember my sweet sense of victory when I successfully fought to have my daughter with severe cerebral palsy educated in regular classes (the first time our school district had mainstreamed a student with such severe disabilities). I remember my pride at accomplishments, big and small.

I also remember that we had it a bit tougher back then, just one generation ago. Accessibility was not yet the law of the land. I had to bump my kids’ wheelchairs up and down stairs hundreds of times. I often had to leave my daughter’s wheelchair outside the tiny restroom stall and carry her in. Most children had never encountered a child with disabilities in those pre-inclusion days, so we endured so many stares and hurtful comments. For that matter, most adults had had limited exposure to disabled kids, and I often had to challenge their stereotypes as well.

But, when I start feeling smug or patting myself on the back for being such a pioneer, I catch myself. Over the last year or so, I made the acquaintance of a woman whose daughter is my age (56) and has cerebral palsy. We have spent a lot of time reminiscing about the 50s and I am struck by how nonchalantly she talks about raising a child with disabilities in that time. She mentions her daughter‘s stint in Girl Scouts: “Of course, I had to be the leader so she could participate.” She talks about signing her up for dance lessons. She tells me matter of factly how her daughter had to manage the stairs at school on her crutches. She recounts how her daughter was almost not allowed to graduate from high school because she couldn’t participate in PE (finally the family doctor, who was on the school board, intervened and got them to allow her to substitute another elective). And she proudly talks about how her daughter went off to college about 300 miles away, with an adaptive bike her dad had made for her to get around campus. I am really in awe of this woman, who, by her own account, was just a “country girl,” who assumed her daughter would have a normal life and made sure that happened in an era when it wasn’t easy.

So, when I read these blogs by parents who have only been on this journey one year, four years, or nine years, I may initially have that “been there, done that” feeling. I may feel somewhat smug or amused: “What? They think they’re discovering something new?” But then I pull myself up short. Yes, they are discovering something new…something that’s new for them. And it’s in the discovery that it becomes real for them.

If only...

2009-01-23T18:27:00.000-06:00

For three or four months I have watched Gabriel get worse and worse. In October the psychiatrist at MHMR took him off clozapine, the medication that is the “gold standard” in treating schizophrenia. Within a week, I knew it had been a mistake.

I called MHMR many times, telling them with rising desperation that Gabriel was getting worse by the day. Sorry, I was told, the doctor is booked, the doctor got sent to another clinic on the day he was supposed to see her, the doctor is on vacation for 3 weeks. Meanwhile, the voices became unbearable, the hallucinations were frightening, he paced and laughed for hours on end.

I took him to the psychiatric ER five times. He told them he saw aliens who were trying to kill him (and that sometimes he thought I was an alien); they sent him home. He told them the voices were bothering him a lot; they increased one of his medications and sent him home. He told them he was scared because the mafia was trying to kill him; they put him in the hospital at his request, but discharged him a week later without changing his medication. He told them he sometimes thought about stabbing himself in the head to make the voices stop; they changed his medication, told me to hide the knives, and sent him home. He told them he saw assassins, the mafia, and Jesus; they admitted him to the hospital as a voluntary patient.

Yesterday I learned that they had gotten an Order of Protective Custody, ie, he had been committed. He says that the doctor told him he will probably be sent to the state hospital next week.

I am so angry! If only the doctors at MHMR or the ER had listened to us, if only they had tried to understand how bad things were, if only they had acted to get him back on track early on! We would have been spared months of pure hell AND Gabriel wouldn’t have regressed to the point that he has to be committed.

Reconciled

2009-01-22T14:40:00.001-06:00

She was

Unseen.

She knew that the people she met

Simply looked right through her,

As if she were invisible.

She was

Unheard.

Her humor, ideas, opinions

Were met with blank faces, ignored.

Soon she alone listened to her inner voice.

She was

Unknown.

Her darkest fears, her dearest dreams,

Remained unspoken, held within,

Nourished in her secret garden.

Unseen,

Unheard,

Unknown…

Yet somehow she was reconciled to this existence:

Better to be unseen than to only see outer appearance,

Better to be unheard than to speak nothing of substance,

Better to be unknown than to be an open blank book.

Bush's note

2009-01-20T04:52:00.000-06:00

So George W Bush left a note in his desk for President Obama. I wonder what it said????

1/20/09 The day we've been waiting for

2009-01-19T06:33:00.001-06:00

Tomorrow's the day. We will finally wake up from the nightmare of George W. Bush's two terms to a new day. Unfortunately it will take many, many years, if not decades, for this country to recover from the damage this man has done to our country. In my opinion, he almost managed to do what Osama bin Laden couldn't: destroy this great nation.

I will be glued to the TV to watch the inauguration. I expect that the greatest highlight of the celebration will be President Obama's inaugural address. The second greatest highlight, at least for me, occurred yesterday at the inaugural concert, when Pete Seeger led the crowd in "This Land is Your Land." At age 89, Pete's voice has faltered a bit, but his spirit is as strong as ever.

Back in the hospital

2009-01-18T15:53:00.000-06:00

I'll keep this short, since I did another all-nighter with Gabriel at the psych ER last night...seven hours. They admitted him and are apparently going to try to get him back on clozapine, which is the medication that he really needs. I'll keep you all posted.

One minute

2009-01-17T12:19:00.003-06:00

I left my camera on this morning and this is just one minute of video it captured. You may find it annoying. You may find it disturbing. You may find it very sad. However it makes you feel, keep in mind that it is only one minute.

Now, multiply that feeling times 60 minutes per hour, up to 12 hours per day, for much of the last 4 months. This is what Gabriel and I have been enduring all that time.

According to the doctors at MHMR, the psychiatric ER, and the inpatient hospital, this is an acceptable outcome for Gabriel. Six months ago he spent his time talking with me, researching stocks, downloading music, playing basketball, going to the movies. No one should have to spend their life like this!

Please help Gabriel go to Johns Hopkins!

2009-01-12T16:25:00.002-06:00

Dear Friends,

I am asking for help from everyone I know to help Gabriel get to Johns Hopkins for a psychiatric consultation. If you've been reading my blog, you know that things have been very bad for Gabriel for several months, with very little help from the doctors here. I talked with a psychiatrist at Johns Hopkins today and he felt that a consultation there would be helpful.

I am currently on short term disability again, due to back problems. After missing a lot of work due to my heart attack, my mother's stroke, and Gabriel's condition, money is pretty tight right now. So any help towards reaching our goal would be greatly appreciated.

Here's the link to our fund raising site http://www.fundable.com/groupactions/groupaction.2009-01-12.5144311663/groupaction_view?portal_status_message=Your%20changes%20have%20been%20saved.

To Gabriel

2009-01-10T01:41:00.004-06:00

At the bottom of my desk drawer, tucked inside an envelope, is a small collection of my favorite photos of you. Looking at them, I can’t help but smile. What a little imp you were: exuberant, mischievous, curious, happy.

Today those times seem very far away or as if they belonged to someone else. It seared my soul to hear you say that you sometimes want to stab yourself in the head to make the voices stop. I feel so helpless, unable to silence the voices or chase the visions back into the shadows. I would give anything to give you some peace.

Another night at the ER

2009-01-07T10:35:00.003-06:00

Maybe the psych ER should just reserve two chairs for Galen and Gabriel in the waiting room. Monday night we spent yet another night there. Gabriel came to my room about 11 PM and said he needed to go back to the ER because the voices were really bad. By this point, I have become the devil's advocate when it comes to seeking "help" there. Once again I reminded him that when he's gone there before, with exactly the same complaint, they haven't done anything. I suggested that he put on his headphones and listen to the radio to drown out the voices, as he usually does. He said he'd try. A few minutes later, he was back, again complaining that the voices were really bad. As I had heard the doctors ask so many times, I asked him what the voices were saying. "They say they're going to kill me...or that I should kill myself." OK, I knew we had to go.

At the ER, the waiting room was full of folks with very tired faces. Listening to the general conversation, I learned that some of these people had been waiting since 2:00 that afternoon. Sigh...I knew it was going to be a very long night. It was a pretty typical crowd. There were a couple of middle aged ladies with teary eyes, a young woman with her boyfriend, a teenaged boy with his mother who compared experiences in prison with another ex-con in the next seat, an intense young man, a homeless man who apparently had just come to get out of the cold rainy weather to sleep someplace warm. For a while we had to deal with an obnoxious woman who had come with her sister and somewhat elderly father, announcing with dramatic flourish that she had come to commit herself. When she wasn't granted immediate entrance to the exam area and was told to fill out the required registration forms, she started complaining loudly in a string of obscenities. "F-ing fill out f-ing forms? No wonder people f-ing jump off f-ing bridges!!" A staff person at the window told her that they'd get to her in a few minutes. So she went downstairs to smoke a cigarette and, when she returned, she was outraged that they didn't take her right back to the exam area, and her ranting escalated, with her family members hovering around her, trying to calm her down. Far from being sympathetic, I was getting more and more irritated. I'm not a psychitrist, but after all these years of living with my kids and dealing with lots of psychiatric disorders, she struck me not as someone who was suicidal, but as someone who had borderline personality disorder, who was there for one simple reason: the drama. She wanted to stir up her family and she wanted the attention. Sitting there, knowing the severity of Gabriel's problems, I was further irritated that she was demanding to be seen ahead of him and all these other folks who had been waiting up to 10 hours. I finally couldn't stand it any longer and spoke up: "You know, other people have problems, too, and some of these people have been waiting since 2:00." Oops. All eyes were riveted on me, and the woman instantly turned her wrath and her obscenities on a new target. I thought she might come barrelling across the room for me. After several minutes of verbal assault, she left with dramatic flourish, shortly before two security officers showed up.

The rest of the night was uneventful. Several folks finally stretched out on the floor to sleep while they waited for their name to be called. By the time they called Gabriel back to see the doc, it was 6:30 AM and we were the only ones left in the waiting room. The effete resident doctor sat aloofly at his desk, reading through the notes from Gabriel's hospitalization last week. He asked Gabriel about the voices. He asked Gabriel if he felt like hurting anyone else: no. He asked him if he felt like hurting himself. I was stunned and frightened by his answer: "Yes, sometimes I think about stabbing myself in the head with a knife to make the voices stop." Now, a couple of weeks ago, I would have been outraged that they didn't think Gabriel should be hospitalized as a danger to himself or others, but, knowing how worthless the latest hospital stay had been, even in terms of observing his behavior and mental state, not to mention adjusting his medication, I accepted the decision to send him home. I did convince the doctor to try Gabriel on a first generation antipsychotic medication, and, with prescription in hand, we left.

Fortunately, as of Monday, I'm off work on short term disability due to my back problems, so I can observe Gabriel on the new medication. As I write this, he's had 2 doses of this med that he is to take 3 times/day, and he was actually talking with me a bit last night. So there is a glimmer of hope...

The best health care in the world?

2009-01-04T09:44:00.003-06:00

"Seven years ago, the World Health Organization made the first major effort to rank the health systems of 191 nations. France and Italy took the top two spots; the United States was a dismal 37th. More recently, the highly regarded Commonwealth Fund has pioneered in comparing the United States with other advanced nations through surveys of patients and doctors and analysis of other data. Its latest report, issued in May, ranked the United States last or next-to-last compared with five other nations — Australia, Canada, Germany, New Zealand and the United Kingdom — on most measures of performance, including quality of care and access to it. Other comparative studies also put the United States in a relatively bad light. "-New York Times, August 12, 2007

Many Americans suffer under the delusion that our medical care is the best in the world. Maybe they're equating "most expensive" with "best." Perhaps they're talking about the care the wealthiest, best insured among us receive. Most assuredly they're not talking about the uninsured, the folks on Medicaid, the folks with chronic physical or mental illness, the people who happen to live in states where human services are a low priority. Anecdotal evidence might not give a complete picture, but it's a telling part of the whole...

First, there's Gabriel's continuing sad story. I convinced the hospital not to discharge him on Tuesday, when they had done absolutely nothing for him. I asked the doctor directly, "What was the point of his being there, then, if you weren't going to try to adjust his medication?" I also pointed out that Gabriel himself had asked to be admitted (since doctors seem never to read the charts, I thought this fact might have eluded the doc). He agreed to start Gabriel back on Clozaril. But Friday he called to say Gabriel had not tolerated the drug due to a high heart rate, so he'd taken him off it and was discharging him on the same medications he had been on when he was admitted. I was SO frustrated. I asked him, "So what you're saying is that he will have no life, that he will never be functional again?" The doctor assumed a condescending tone of voice and began lecturing me: "He'll never be normal, he'll never be able to hold down a job..." With great exasperation, I replied, "I KNOW that...how about just being able to carry on a conversation, or do something besides pace and laugh all day?"

Well, I ranted in my car all the way to the hospital and was sinking into despair the rest of the day. Saturday morning I got online and started researching antipsychotic medications and alternatives to Clozaril. I made two important discoveries. Gabriel takes an injectable form of Risperadol and an oral medication called Invega. It turns out that basically they are the same medication! As one article on the oral med was titled, "Invega-Can You Say Patent Extender?" No wonder the combination of the two meds isn't helping much...it's just a huge dose of a single medication, packaged differently. The second thing I discovered was actually some information I had caught in passing on NPR a couple of years ago. The NIMH did a clinical study of the efficacy of different second generation antipsychotics, but at the insistence of some scientists on the study committee, one first generaton antipsychotic medication was included in the study. Now it is a common belief among psychiatrists that the second generation drugs are far superior to the first, but in this study, a moderate dose of the first generation drug was found to be every bit as effective as the newer (more expensive) ones. Plus the old drugs don't have the same serious metabolic side effects as the new ones (weight gain, diabetes, high cholesterol, etc). So why have the old drugs fallen out of favor? According to that NPR report a couple of years ago, it boiled down to the aggressive marketing by the drug companies.

Anyway, if you've managed to read through all of that, the point is that I'm going to ask his doctor to try him on one of the older drugs. He's never been on one before, so maybe he'll do just as well, or better, and might be able to lose some weight and get the diabetes under control.

Second anecdote concerns that pain I've had in my legs for at least 4 years that has severely limited my activities. I used to walk a couple of miles several days a week, even jogged part of the way. Then this pain began, getting so bad when I walk or stand that by the time I walk around the grocery store, my legs are killing me and are numb and I have this tightness in my hips like spasticity. Over the last 4 years, I've become less active out of necessity, gained a lot of weight, developed diabetes, and had that heart attack. Meanwhile, I've been telling every doctor I've seen about this pain, hoping that they would find out what's wrong and do something to help me. One doctor wrote it off as diabetic neuropathy. My current doctor tested my segmental blood pressure, to make sure it wasn't PAD. When it wasn't, she stopped listening to my complaints. Last spring, when I took the boys to the arts festival, the pain and tightness in my legs was so bad, I thought I wasn't going to get back to the car! So the next time I saw the doctor, I asked her if she would order an MRI. I had done enough reading online by then, that I was pretty sure I had spinal stenosis. I had the MRI (she still didn't get it, ordering it because of "back pain" and wanting to check for a disc problem). When I finally got a hold of the nurse for the results, she told me the MRI just showed "normal wear and tear." Shortly thereafter I had the heart attack, so I never followed up with the doctor about the MRI, until the last time I went in. I finally thought to ask her, "Are you sure that MRI didn't show any signs of spinal stenosis?" She checked my chart and said, "Yes, it showed moderate spinal stenosis." I wanted to cry. After suffering this pain for 4 years, not to mention seeing my activities so limited and my health deteriorating, I had finally been diagnosed and the diagnosis had simply been filed away!

So, I did more research and found that 3 years ago the FDA approved a new, minimally invasive procedure for this condition that has given a lot of people back their mobility and their lives. Tomorrow I have an appointment with an orthopedist who does the procedure and am fervently hoping that he thinks I am a good candidate for it.

My point is this: if we have the best health care in the world, why did no one listen to me all those years while my health deteriorated and why did I have to ask for the MRI and why was I told that I just had "normal wear and tear" and why did I have to find the possible solution online and refer myself to an orthopedist? To those who oppose any changes to our health care system, just remember, it might be working for you, but for many folks, it isn't working. Some people are driving a Lexus or Escalade, but many others are driving an old jalopy, others are riding the bus, and millions have to walk.

Farewell, 2008!

2008-12-31T23:33:00.011-06:00

As I look back on the year 2008, it would be easy to dwell on all the trials and tribulations. But since I’ve written at some length about the negatives, I’ll give you all a break and remember the good things that happened during the year.

Our second treeing walker coonhound, Boo, joined our family in March. Coming from a background of being abused and/or never being socialized in the first place, he has had a slow adjustment. He still cowers or slinks away when anyone enters the room, but has finally begun to approach me to be petted and will snuggle up next to me on the bed.

The election, of course, was a high point of the year. During the primary season, Texas actually was part of the process, for once, and the candidates made several appearances here. Gabriel and I went to Dallas for an Obama rally.

We watched election results at the rehab hospital with my mother, whose 90th birthday was on Election Day. We were all thrilled with the result.

I had hoped to be able to take the boys on a vacation this year, but with all our medical problems and expenses, it just didn’t work out. But we did have some fun times close to home:

A hike at Dinosaur Valley State Park…

The Main Street Arts Festival…

The Fort Worth Zoo.

Although my mother’s stroke was one of the storm clouds of the year, the silver lining was that I spent a lot of time with her and felt grateful that I could help her, give her support, and be her advocate.

And lastly, this confirmed dog lover fell in love with a stray cat, whom we named Mufasa. For several months he was our porch kitty and all of us, but especially Marcus, got very attached to him. About a month ago, I saw the body of an orange cat in the street a few blocks away, and feared the worst. Several weeks went by and we didn‘t see Mufasa, so I had to face the fact that the dead kitty must have been him. But then yesterday, I walked outside to go to work, and here came a cat walking down the street. At first I couldn’t believe it was Mufasa, but when I called his name, he came to me! We were so happy to have him back, safe and sound!

So, farewell to 2008 and welcome 2009. May the new year bring us health and happiness.

49th in the nation, indeed!

2008-12-29T21:31:00.002-06:00

In case I haven't mentioned it in the last 5 minutes, Texas ranks 49th in the nation in per capita mental health spending. That should give you an indication of the quality of services in our great state. So I suppose I shouldn't have been outraged by the phone call I got today from the social worker at the psychiatric hospital, informing me that they would probably discharge Gabriel tomorrow.

Now, I went to visit him briefly yesterday. He was talking a bit more, so I asked him if he was feeling better. "No, not really," was his response. Keep in mind that this is the county's public hospital mental health stablization unit, not some private country club facility. Images of Bedlam come to mind. So it's fair to say that no one in their right mind (no pun intended) would choose to be there if they could get out. I would expect Gabriel to say that things were fine just to get back to his cigarettes, music, and fast food. So, if he says he's not better, he must really be having problems, that even HE can recognize.

So, when the social worker told me that he might be discharged tomorrow, I couldn't believe my ears. I asked her if they had adjusted or changed his medication. No, they hadn't. I told her that I would of course come pick him up if they let him go, but that I was quite sure things would be the same as they had been for the last 2 months: hell. I gave her an extensive rundown of the recent history regarding med changes and behavior, just as I had already given it to the ER doctor and the unit nurse.

What I really wanted to ask her was, "What the hell have you all been doing with him for the 4 days he's been there????" It dawned on me that every time I have asked the staff how he was doing, the answer was either (a) I haven't seen him much today, I guess he's been in his room, or (b) he hasn't had any behavior problems. In other words, he has mostly been withdrawn and hiding out in his room, hallucinating and feeling paranoid. Great...big help. At least at home I notice if he's agitated or hallucinating or firing imaginary guns at the aliens.

Psychotic Christmas

2008-12-26T23:13:00.003-06:00

Our house is very quiet tonight...Gabriel was admitted to the hospital last night. For the first time in two months, there is not the sound of hysterical laughing, high-pitched gibberish, or pacing feet. I feel a bit guilty saying it, but the calm is something of a relief. Here is how it came about...

To say our Christmas was low-key would be putting it mildly. For only the second time since I adopted Jesse, we didn't have a tree. With all that's gone on this year and my recent bout of severe depression, the holiday season has hardly registered on my radar. So there were no lights, no stockings, no tree, no hullabaloo. Frenetically, I did my rather limited shopping (tight budget this year after missing so much work and still paying hospital bills) in the last two days.

So on Christmas morning, it was a far cry from Christmases past. When all the kids lived at home, we gathered around the den, passed out the gifts, and then went around the circle, opening one gift at a time. I had wanted the kids to take the time to admire and appreciate each gift. But with dwindling numbers, that tradition fell by the wayside. This year it was even less ceremonial, as Gabriel paced back and forth through the den and kitchen, opening a present, sometimes seeming to forget what he was doing. Soon it was time to get ready to go eat at my mother's center. Gabriel required frequent reminders to brush his teeth and put on some deodorant. I gave up on trying to get him to change clothes.

At my mother's we had a delicious buffet. The meal went fairly well, though we continue to get quite a few stares when we show up for a special meal. I guess we seem quite a spectacle to some of these old folks. Gabriel hardly spoke during the whole meal, of course, as he now rarely speaks to anyone unless it's to ask me to take him to some fast food place. At some point he left the table, and I figured he'd gone out front to pace in the parking lot and listen to his radio on the headphones (this is how he tries to drown out the voices).

Back home, he was withdrawn and morose. The laughing was gone, giving way to a very depressed state. He went from room to room, spending some time lying on Marcus' bed while Marcus watched TV, lying on my bed, sitting silently in my computer room while I worked and watched TV. He didn't interact, but seemed not to want to be alone. Much of the time, he sat with head in hands, the picture of misery. I asked him how he was doing, was he hearing voices, etc, but he flatly said he was OK.

But a few minutes later, about 11 PM, he came to my room and asked me to take him to the hospital. I admit that at first I was reluctant. He'd been to the psych ER 3 times in recent weeks and all they did was adjust his medication once and send him home. I figured it would be the same this time. But when he said "I'm scared," I decided he should go.

Amazingly, we were the only ones in the waiting room. I was relieved to see that the doctor who was there was the best one we've dealt with in the past, a very kind person I first met at the dog park a few years ago. He talked with Gabriel and with me, and I couldn't believe my ears when he said he was going to admit Gabriel and left to do the required paperwork. Gabriel had been in much worse shape during his previous visits, but had never been admitted. Then it dawned on me that the difference was that Gabriel himself had asked to come...it was a voluntary admission, not a commitment...at least for now.

I didn't go see him today. I felt bad about that, but for one thing, I knew we would just sit there in silence while he hallucinated, and for the other thing, I was afraid that if I went he would want to leave with me and, since he's there voluntarily, they'd have to let him go. I'll go for a short visit tomorrow, probably, and take him some clothes and toiletries. But today I took advantage of the quiet and calm to unwind from the tension of the last two months. Aaaaaahhhhhhh.....