Friday, December 25, 2009

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!

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'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.

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."

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.