The truth as I see it.
You see, the truth is always as we see it. We see truth filtered through the glass we've erected, that window through which we see the world. It's a glass forged from what we've touched, how we reach into the falling-water curtain that is "reality". We see something happen and we filter that past everything we've previously used to wallpaper and glue the circuits of our reasoning together. If we have any ability at analysis at all,we force our minds to act as a cipher of what we now perceive, a cipher molded of our own experiences; we use anecdotal evidence from others, families, friends, perhaps our philosophical beliefs, our religions, what we read, what we interpret as we read, what we hear, bits and pieces of stories, maybe tales told round the dinner table, sometimes facts and sometimes not facts. The decisions we make are like beings that we escort out of the differently decorated rooms in our souls. Different categories or levels of choices we make come from different rooms and how we've chosen to appoint those rooms.
Because my mind is random tonight, I'll pontificate a bit and tell a little story as well. I'll spin it out gradually – maybe I'm trying to lessen the impact of what I'll say. Maybe I'm trying to frame it more sympathetically. Maybe I'm just trying to excuse my own peculiarly decorated rooms. Maybe I won't tell the whole story.
I'll tell of Todd, my nephew. He's 35 years old and he's lived at home, with the same bedroom, in one house on a street in Ballard, a suburb of Seattle, all of his life. This street has not changed all that dramatically since his birth in 1971. The same brick Tudor houses built in the 1920's, others built with GI funds right after WWII, and some houses on the block pre-date both eras – some lovely old Craftsman houses with two full stories and full-front porches facing the street.
Todd's life has not changed all that much in 35 years either. He was born the second son, the third child. His older brother, Rick, born in 1962, was hit in a crosswalk and killed when Rick was six years old in 1969. My sister, Todd's mother, was five months pregnant with her daughter at that time, and it was a tough year. My niece was born in September; my dad was killed a month later in October. 1969 was quite the banner year for my sister.
When my niece was a year and a half, and my sister was 33, she discovered she was pregnant again. Life was just beginning to settle, I think. My sis and brother-in-law welcomed another child – they were more or less ready again, as much as can be, with the fears and terrors and now-known recognition of how transient life can be still fresh in their minds.
And it was Todd. It took a few months before some things were evident. Like the fact that he couldn't roll over. Or grasp things with his hands. That his eyes always appeared slightly swollen, the eyelids more epicanthic than even the rest of our family, with our mixed mongrel bloodlines.
We have to have some ability to analyze. We cannot just take someone else's word as the truth unless we can analyze all that is given, draw in as many elements as we can to shape an opinion. It really isn't possible to walk through life and say, "Oh, that's nice!" to everything we see, although I sometimes think I've known people who try to live like that. We have to have our own frame of reference; we take what we know and we should throw it up against that frame. Sometimes the thought, the fact, the reality, will slide down off that frame, like paint splattered and running in a river down a wall. Sometimes it sticks like mud on the wall and solidifies. Sometimes facts, memories, impressions, get distilled with time and we forget the import of their original meaning. Sometimes how we wind up analyzing things just doesn't fit with anything we think we believe.
By the time Christmas of 1971 rolled around, my sister and her doctor finally determined that Todd had Down Syndrome. In the early seventies, she was able to access programs through the University of Washington that were early childhood programs for the mentally retarded (by which programs were named at that time) funded both by the Federal government and by the Kennedy Foundation. For a few years, there was support and resources, training and therapy.
And then came Reagan. And the federal side of the program became de-funded. And all kids were "mainstreamed".
And then economic hard times for my sister and her husband. In the late 80's and early 90's, he lost his job of some thirty years. My sister went back to work in the early 80's after not having worked from the time of their marriage in 1961 until around 1983 or so. It was a sea change in the family. It meant shifting schedules with each other, it meant trying to make it work with a disabled child so that there would not have to be outside care-givers, who were nearly impossible to find in any event.
I'm getting derivative here, as there is no need to drag out all the sorry details. I'll reduce it down to – lack of resources, lack of time, lack of money, lack of patience in dealing with the "system". Lack of real attention paid to the "normal child", who in many ways grew up too soon as a care provider for her younger brother, as the mediator in parental disagreement, which was often loud and often verbally abusive. Lack of ability and energy to find outside support, because the task of searching for additional resources and city, county, or state help is an often circuitous one and a complex one with multiple forms and demands for documentation.
Fast forward to 2002. My sister left her job of some fifteen years in early 2002, as my brother-in-law, now suffering from late stage terminal cancer diagnosed in December of 2001, lay dying at home with hospice care. My sister could no longer cope with the demands of dealing with an adult child, a dying spouse and full time work at the age of 63.
Since that time, and the loss of his dad by the summer of 2002, Todd has lost an anchor, a presence that had always provided an attentive emotional stability, if never really a financial stability. When my brother-in-law died, he left no life insurance, no savings, and no inheritance of any kind – just simply unpaid bills from years of underemployment. Years of unfiled tax returns, which my sister was only vaguely aware of. Years of invisible non-maintenance of the house they had remortgaged multiple times to get through bad years.
Todd had lost his anchor. But he gained a stronger mother for a time. My sis has been able to clean up finances somehow, file old tax returns, get guardianship papers in order and begin to claim home care worker income as the care provider for a disabled adult – allowed in Washington State. That new strength is slowly draining away now under the harsh realities of time, age and money.
The irony is that her paid hours were just cut by 20% - from 144 hours a month to 119. The job hasn't changed and will never change as long as she continues to assume it. The income is limited in relation to the SSI that Todd receives. She makes ends meet on her own Social Security, coupled with the homecare income. She's getting by – barely.
She gets Todd up every day, shaves him every day, helps him bathe every day, clothes him everyday, prepares the foods he will eat each day, and sends him off three days a week for four hours to a job. These are literally the only hours – some twelve hours a week – that she has off from continual care. He is moderately to severely retarded. He cannot speak, except in the occasional shout and grunt, as he has severe aphasia. At 35 years old, he appears to be showing signs of early onset Alzheimer's, though the diagnosis hasn't been completely certain – no funds for an extensive study at this time.
There are days when his frustration – frustration from boredom, frustration from being inside when the weather is bad, frustration from repressed anger on both her part and his – overcomes her ability to handle him. He's sometimes violent and in fact has been dismissed from a previous job due to aggression against a supervisor. It was duly documented and assigned to a county case worker and it was determined that he was depressed by his father's death – a likely diagnosis but a difficult one with few applicable measurements to go by when attempting emotional therapy on a mentally and developmentally disabled individual.
He's begun some OCD behaviors over the course of the last year and these may be tied to the depression and to the boredom. One of these behaviors involved repetitive head-banging. Twice he's cut his head open in the course of acting this behavior out. And twice the State has reported the possibility of domestic parental abuse against my sister because of this evidence. Laughable really, if you saw my sister, who, at barely over five feet tall, with failing hips and knees, has somewhat limited mobility, and further, has become somewhat fearful of Todd. It is the responsibility of the State to report such potential incidents and it's understandable how the process works. But continuing mental therapy for Todd as suggested by the case worker has so far not been allowed under Medicaid – it's in appeal right now. So for the time being, my sister is without much recourse but to keep the home front as calm as possible and vary the routine as much as possible and make certain supervisors at his work do not attempt to physically dominate him, so as not to spur an incident at work.
Furthermore, she has to justify to Social Security each year that Todd's disability has not gotten better. As if.
And she is damn tired at 68.
So, in a roundabout way, I come slowly to the point of this diary.
If we believe ourselves "liberal" or "progressive", we use this tag as one of our frames of reference – the wall we throw ideas against. We'll get challenged a great deal – how does this idea fit with our preconceived progressive frame of what we think we believe is right? How does that action play out against our liberal backdrop? What facts, what sources are we using to mix together in that paint bucket of ideas that we want so much to add to our reasoning and our rationale of how we perceive a liberal life should be, how the progressive rooms of our brain should be painted?
I consider myself a Liberal, a Progressive, someone who cares a great deal about human life and the quality of life and how certain decisions should be made and should not be made. Righteousbabe's excellent diary Not the Diary You Want to Read spurred me into an interesting whirl of thought. Which made me realize that I suspect I will never settle on the right decision on this particular topic.
Do we call it eugenics when we create a way to test a fetus to see if they have Down Syndrome? Is this a thing that should be "culled" from modern day life? There is no certainty in this. All I have to offer is subjective and anecdotal. And I have a question to offer. What is it that you want for your child?
I know. I know there are hundreds of thousands of Down Syndrome individuals who have lives of great delight and bring joy and love to their families. I've met many. I certainly do not intend to imply that Todd has not done this for our family. There have been days when there is pure sweetness pouring from his soul and a playful recognition of something funny that only he sees. And you understand there is a consciousness there on a level that the rest of us have a hard time grasping. It is a world seen through eyes that see a different world than the one we've constructed. Our world is the one he has to live in, not by his choice and not easily navigated.
I'm left with no resolution on this, except to paste the last comment I made in righteousbabe's diary...:
It's easy for me to write about this in a more or less "factual" way. It is much harder to discuss the personal angle and how it has affected one family - my sister's family.
As for your statement that I referred to in my initial comment - "The same goes for arguments that it would be better to not be born with Down Syndrome and have to deal with the stigmatization that implies."
This kind of got me in the gut. I'd parse it better, I know, if I were a bit more detached, less involved with the situation, and I would probably agree with you for the most part.
However. It's not just the stigmatization of having Down that I see as the major problem - at least as it relates to my family.
It's the day-to-day life, the way that the future plays out, the downhill slide from beginning to end, the lack of resources - from within the family and from without, the never-ending realization that this is never going to get any better, any better, any better, the isolation that occurs no matter how hard everyone tries, the understanding that your child can never reach, never really have what they need, grasp a potential that you as a parent always hope for in your children, the subliminal guilt that something you've done, something in you has caused this to happen, no matter what science says, no matter how much or how little we know about DS.
I'll stop now. Suffice it to say that I think it's better not have been born with Down's.
See? I really am an "insensitive assaholic troll".
Perhaps it's because there is no "right" decision. I can't frame these walls correctly, I can't find the right paint, the right pattern to decorate this particular room out of which I walk this decision right out of my brain. Perhaps, in this, in gray areas like this, I possess no resoluteness of design.
Suffice it to say that I think it's better not have been born with Down's.
See? I guess I wrote it down after all.
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If you or anyone you know has a child with Down Syndrome or any other developmental or intellectual disability, you may want to look into a grant offered by the Joseph P. Kennedy Jr. Foundation – it's a great opportunity to learn and become politically active and find out how government policy on disabilities is shaped at both the federal and state levels. The applications have closed for 2007, but there will be an application for next year available by summer, I believe.
For information, go to the following linked website of the National Down Syndrome Society – and scroll towards the bottom. The grant is detailed there with links to additional information on how to apply:
The Joseph P. Kennedy, Jr. Foundation-Parent Public Policy Fellowship Program
Additionally, Joseph P. Kennedy Jr. Public Policy