Sunday, October 09, 2011

Remembering Anna B

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!

Sunday, September 25, 2011

Justice for Kelly Thomas!

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.

Monday, July 11, 2011

When the world out there wants an explanation...

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...

Sunday, June 19, 2011

Father's Day

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!

Friday, June 17, 2011

Looking back

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.

Monday, June 13, 2011

Revisiting Tucson

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.

Wednesday, June 08, 2011

Another idea for a hands-free card holder

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:

Monday, May 30, 2011

Memorial Day at Washington State Park

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!

Saturday, May 28, 2011

Buses, trains, and automobiles

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."

Monday, May 23, 2011

Memory Lane

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.

Sunday, May 22, 2011

The inclusion debate

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.

Saturday, May 21, 2011

Inch by inch, square by square...

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.

Friday, May 20, 2011

"Shared home, shared life"

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.

Thursday, May 19, 2011

Another year older, another year...

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....

Tuesday, May 17, 2011

Tips for parents of kids with disabilities

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

I wrote this essay on 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 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.

Friday, May 13, 2011

Daring to hope

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.

Wednesday, May 11, 2011

Help Nisha change the world!

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 will be inspired and blessed by this young woman's writing and generous spirit!  

Monday, May 09, 2011

Down home on the ranch

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.

Saturday, May 07, 2011

Mothers and other strong women

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

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!) 

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 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.