Thursday, December 10, 2009

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.

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Saturday, December 05, 2009

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was so damaged that now, according to his last CAT scan, there is very little brain tissue left on that side and it has been replaced by cerebrospinal fluid.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."

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Tuesday, December 01, 2009

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.

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Sunday, November 29, 2009

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.

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Friday, November 27, 2009

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.

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Sunday, November 22, 2009

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!

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Thursday, November 19, 2009

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.

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