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

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so damaged that now, according to his last CAT scan, there is very little brain tissue left on that side and it has been replaced by cerebrospinal fluid.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

Catching up

I’ve been absent from Blogger for a while, so thought I’d write a wrap up of the last few weeks.
After Gabriel’s trip to the ER, he did start taking his meds again, but it has taken a long time for him to reorganize after this major episode. Even now, he still has not regained his previous level of function. I fear that this is how it will be…that each episode will result in some degree of permanent deterioration. If I wake up in the middle of the night, I still hear him laughing for no reason. His short term memory is terrible; he forgets things after a day or, sometimes, after only a few hours. But at least he’s socializing with us again and joking a bit.

I often go online to research which states offer the best mental health services, with the hope of moving someday. But I had not really considered the possibility that there might be non-governmental programs that might meet his needs. I have now discovered the “Clubhouse” movement for folks with mental illness, which provides a center for vocational and social programs, structured around the “work ordered day.” There are such programs throughout the US and around the world, but the one that most interests me is the one in St Louis, which is one of four US training sites for the movement. I am really excited about the program and, if all goes well, I’d like to relocate to St Louis at some point so Gabriel would be able to participate.

After Gabriel stabilized, I returned to work. I’ve been working my butt off, catching up and evaluating new patients. It was pretty hard to get back into the work routine after such a long time off (I miss those long afternoon naps!), but I’m doing OK now that the evaluations are complete and I’m caught up on paperwork. My previous bitter feelings about work have receded…getting a nice profit sharing check and a raise did wonders for my attitude! Given the current economic crisis that grips us, I feel quite fortunate to have a career that is not really impacted by the economic downturn.

A situation this week has set me thinking about some of the values we hold. I’m thinking about those values that are relatively easy or clear cut in a general sense, but which are challenged when a personal situation throws them up in our face. For example, one might be opposed to the death penalty, until the murder of a family member challenges that long held position. One might be theoretically opposed to abortion…until a loved one becomes pregnant after a rape. And so this week my firm belief in the rights of the disabled met a challenge. I discovered that my daughter who is severely disabled is pregnant. This young woman cannot take care of any of her own personal needs. She is totally dependent on others to feed her, dress her, take her to the bathroom, get her in and out of bed, etc. As a parent and as a therapist, I have long advocated that people with disabilities be allowed and enabled to lead normal lives. But this situation has definitely challenged that ideal.

On a lighter note, we now have a porch kitty. I’ve never been much of a cat lover, but this pretty stray kitten had been wandering the neighborhood for a few weeks, digging in the garbage for food. So I put some food out for him, and that was that. His name is Mufasa. He’s what I call a “dog kitty,” ie, a cat that acts more like a dog than a cat.

Unexpected visitor

Yesterday I walked out my front door to go see my afternoon patients, and I noticed a car sitting out in the street in front of my house. When the window was rolled down, I did a doubletake...in the passenger seat was my daughter Leslie, whom I haven't seen for about 2 1/2 years. She lives down on the Gulf coast of Texas, so it was totally unexpected to see her sitting there! I walked over and talked a bit, but I had to get to work, so she said that she'd try to get back to visit before she left town.

So she dropped by this afternoon with her fiance. We did a little catching up...and then it was time for me to go see patients. As I thought about my unexpected visitors, I felt oddly detached. There was a time when I would have had a much different reaction when this person who had cut me out of her life, who had told me she was "divorcing" me, who now calls another woman "mom," showed up at my door with a fiance twice her age. It's funny...I used to say that ADHD was genetic...you get it from your kids! (You see, I used to be a focused, fairly organized person, before living with 6 kids with ADHD.) Now I think it's fair to say that attachment disorder is contagious...you catch it from your kids. After so many betrayals of trust and so many rejections, I find myself feeling very detached from the kids who cut me out of their lives. I have no desire for any drama or conflict. So it was a pleasant visit, but hardly an emotional reunion. Some may think that sounds cold or heartless, but until you've lived day in and day out with kids with attachment disorder, you probably can't understand.

In an earlier post, I said that, even though many of my kids have rejected me, I do have the consolation of knowing that I gave my kids a chance for a normal life. This was Leslie in Korea at age 3. 'Nuff said...

Introduction, part three

Now I turn to my "kids" who have chosen not to be part of my life. I'll try to be as diplomatic as I can, but understand I am sometimes very (dare I say it?) bitter about their rejection after I did so much for them.

Leslie, now 23, came to us from Korea at the age of 3. As you can see from her picture, her circumstances in Korea were pretty dire and her future likewise was pretty bleak. She has severe cerebral palsy and is totally dependent on others for all her personal care. She is also intelligent. When she was about to enter kindergarten, I insisted that the school district educate her in regular classes, which at the time had basically never been done in our school district. She now lives on her own with a part-time caregiver to help her and she attends community college.

Hollis, now 24, also came from Korea at age 3. He has mild cerebral palsy and has many indications of Fetal Alcohol Effect, namely poor cause and effect thinking and an inability to learn from his experiences. He works in a nursing home and lives with his brother Cedric.

Cedric, now 25, was also adopted at age 3. He has spina bifida. He does not work but lives on his own with Hollis.

Kristina, now 26, came from Russia at the age of 11. Her history and some of her personality traits also indicate the possibility of Fetal Alcohol Effect. She definitely had attachment disorder, and never bonded with me and never even referred to me as her mother (in conversation she referred to me simply as "she"). She could never forgive me for taking her from Russia and her favorite housemother, even though the housemother was desperate that Kristina be adopted because "there is only one future for a girl with black skin."

Misha, now 23, came from Russia at the age of 10. He was born with a form of dwarfism and had gone straight from the maternity hospital to a baby home (orphanage for kids under age 3). He stayed there until he was 10, because the director knew that the next and last stop for Misha would be a bleak institution for "invalids." He lives on his own and works at a movie theater.

Sergei, now 26, came to us one month shy of his 15th birthday. Like Kristina, he had been in children's homes since the age of 1, abandoned because he was biracial. He is a highly intelligent young man, but his emotional scars from being abandoned and from the devastating effects of Russia's racism run deep.

Suffice it to say that early neglect, abandonment, and abuse took their toll on these kids. And parenting them definitely took a toll on me. I was assaulted and emotionally abused. One child threatened to burn down my house (we found matches squirreled away in his drawer). For many of them, I was the convenient target for all the anger they felt for their birthmothers. All I can say is that I did the best I could, and the one small comfort I have is that the 5 who came from other countries got the opportunity to get an education which they never would have had in their home countries.

Introduction, part two

And, continuing the introductions:

Gabriel, about to turn 22 at the end of this month, came to me at the age of 5 months...the only one of my children who came to me as an infant. So, in my mind, he's always been my "baby." His birthmother was schizophrenic, so delusional that she sometimes thought she was Tina Turner, sometimes a white woman from California. She did not realize she was pregnant until she was about 8 months along, so she had still been getting injections of a powerful antipsychotic medication during the pregnancy. Gabriel appeared normal at birth, but at the age of 1 month became jittery and developed high muscle tone. Doctors suspected seizures and cerebral palsy. Over time, both diagnoses were ruled out, but they were followed by many more. As a toddler, he had speech and language delays. In elementary school, he had successive diagnoses of ADHD, obsessive compulsive disorder, depression, and Tourettes syndrome. But he was a charming, goofy kid...one speech therapist who evaluated him wrote "too cute!!!" in her observation notes. Then things got more complicated when he was in middle school. At the beginning of summer after 6th grade, I gradually came to realize that Gabriel had virtually stopped eating and was exercising for hours. He soon started to look shockingly thin. The pediatrician took a wait and see approach for a month, while Gabriel's weight continued to plummet. By the time he was admitted to an eating disorder program at a children's hospital in Dallas, he weighed 69 pounds...he'd lost about 30 pounds in a month. He was hospitalized twice, for a total of 5 months, that year. It was during his second hospitalization that the doctors diagnosed him as psychotic. But during the next 5 years, his psychosis was characterized by some skewed thinking and poor motivation. Then, in July 2006, over a weekend, he became somewhat moody and obsessive about certain thoughts. One evening, as I was walking through the den, he told me that I needed to put some curtains in the back windows, because someone was trying to kill him. When I pressed him to elaborate, he clammed up, saying, "I've said too much already...they'll kill me for sure now." He would say no more. I was unsettled, but we don't live in the best neighborhood, and I thought it was conceivable that some punk had made an idle threat. Later he came to my room, asking about police protection, whispering, closing the A/C vent. He said the people were trying to kill him because of something he had told me and Marcus at dinner a couple of nights earlier. But how would they know he had told us, I asked. He looked at me incredulously. "You don't know???? The police are in the room upstairs, listening to everything we say!" I realized that he had had a psychotic, paranoid break. Luckily I was able to convince him to go to the hospital. Incredibly, they didn't even want to keep him there and were going to just send him home. I convinced them to keep him a few hours for observation...a "few hours" turned into 7 months, as his condition quickly deteriorated and he was committed to the state hospital. I was shaken to my core. For months, he was unable to understand the simplest bit of conversation, he was so absorbed in his hallucinations. He moved unseen objects and talked with unseen people. He's been home for a year and does OK...considering. Schizophrenia has been worse than I ever expected and I am often disheartened at his present condition and fearful of his future.

Tevis, 18, came to us at the age of 16 months. Like Jesse, he had been diagnosed as having cerebral palsy and developmental delays. I have to admit, I thought that he might overcome his delays as Jesse had. But he didn't. He is moderately retarded, hyperactive, and has had severe behavior problems. He has to be supervised every waking minute, and actually during the night as well, as he wanders and gets into EVERYTHING while everyone is asleep. I decided to place him in a group home several years ago, when the school started calling me frequently to tell me to come pick him up as they couldn't handle him. I'd been through that with Marcus and knew that it was almost impossible to hold down a job under those circumstances. I wish I could manage Tevis at home, but it's not possible. He comes home several weekends a month. When he's not acting out, he's SO sweet, loves to help, and comes out with some really funny comments. After 7 years on a waiting list, he finally got on a state program that pays for a higher quality group home with only 3 residents. Tomorrow he's going with other clients on a cruise to Cozymel!

That wraps up the introductions to the kids who remain part of my life. In my next post, I'll introduce the rest of my kids...

Introduction

I started this blog with one thing in mind, but am beginning to change my idea of what it will include. When I began here, my main blog was on Yahoo 360. I considered that blog to be my personal blog, since it was on a social networking site. In my mind, the 360 blog would be the one which detailed every day events and thoughts in my life for my circle of online friends. I saw this Blogger blog as something a bit more literary, a place for some of my favorite essays and poems. But Yahoo 360 appears to be in its death throes, so I've been spending more time browsing blogs on Blogger. I've found some fascinating blogs, many of which fall into the more personal journal category. So I've decided to make this one more of a personal log, and I realized that, if I'm going to do that, I ought to introduce folks to the cast of characters who might be appearing here.

In my earlier post of my obituary, I've already given an overview of myself, so I'll move on to my 10 "kids." First I'll introduce you to the kids who remain an active part of my life:

Jesse, 28, was adopted when he was 2o months old. He had a diagnosis of cerebral palsy and was considered mentally delayed as well.

Well, yes, he did have mild cerebral palsy, but he turned out to have an IQ in the superior range. By fourth grade, his vocabulary and reading skills were on a college level. But he never did that well in school, and by the time he was 11, he began to display serious behavioral problems. This was a long time ago, and not that much was known about attachment disorder, so I had not realized the serious effects of his early life experiences: born 10 weeks premature to a teen who had already planned on giving him up for adoption, spending months in NICU with no one to bond with, moved to a foster home and then to another a year later. I would later learn much, much more about attachment disorder. So he acted out, ran away, got involved with drugs, etc. He spent some time in residential treatment, got kicked out, came home, and ran away for good, eventually living with a much older partner. He cared for this man several years as he battled AIDS and cancer. When his partner passed away, Jesse went through a rough period, hooked on painkillers. But a couple of years ago, he suddenly decided to get his life together. He got his GED and enrolled in cosmetology school. He graduated a year later...the longest he'd ever stuck with anything! He's currently working full-time as a stylist. He has long been destined for this vocation. When he was 2 or 3, he was obsessed with Snow White. He dressed up like her, listened to the soundtrack for hours, staring at the pictured 33 rpm album spinning on his Fisher-Price record player, even went so far as to offer a plastic apple to a stranger in a doctor's office waiting room, saying, "Would you like a bite of my poison apple?" But at the age of 4, Snow White gave way to Cindi Lauper. He brought home a little book of nursery rhymes he made at preschool, with a memeographed page for each rhyme. Jack B Nimble had flaming red hair. "That's Cindi Lauper/Jack B Nimble!" he explained. Each time I see Jesse now, his hair is a different color, sometimes purple, sometimes blond, and, yes, sometimes Cindi Lauper red.

Marcus, now 27, came to me at the age of 3, ten months after he had been brought to the ER semicomatose, with a severe traumatic brain injury, 3rd degree burns, detached retinas, and broken-out teeth. This severe battering was the culmination of 2 years of ever increasing abuse at the hands of his birth mother. Tragically, CPS had had an open case on Marcus and his twin brother most of that time, but chose to leave them in the home, in spite of both boys having broken bones, numerous bruises, and increasing signs of emotional disturbance. Marcus' injuries left him legally blind, paralyzed on his right side, and with severe learning problems. He was also prone to unpredictable fits of rage, due both to the brain injury and to the emotional scars of the abuse. But for many months, each night I would rock him, and the bond of trust between us grew strong. At home, he was loving and playful, but at school he was often withdrawn, electively mute, and unpredictable. When he was in 4th grade, his PTSD reached its peak, and he began running away from school in a blind rage (and the school just let him go!). So I quit my full-time job and homeschooled him during his middle school years. It turned out to be the right thing for him. He felt secure and safe at home and was able to work through his PTSD. By the time he returned to high school in a vocational program for disabled students, he was mellow, got along with everyone, and, according to his teacher, was like her personal assistant, he was so helpful. At last the rest of the world saw the Marcus I had always known! Marcus lives at home and would like work, but hasn't had any luck finding employment. He developed seizures a few years ago and just had 2 operations on his foot, so medical issues still affect him. Of all my children, Marcus is the kindest, most loving one, so amazing when you consider the horror of his first two years.

Well, this introduction will obviously take a while, so I think I'll do it in installments. So...to be continued.