The ghosts of Christmas: past, present, future

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

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

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

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

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

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

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

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

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!

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

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

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

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

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!

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?

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

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

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

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

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

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

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

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

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...

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

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

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

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

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.