The Future of Down Syndrome

Some of my more recent followers may not know this, but I frequently blog about Down syndrome and engage in a certain amount of advocacy designed to raise awareness about this genetic disorder that affects so many individuals, including my third child, blogname "Tertia."  She was born with Down syndrome nearly 14 years ago and has taken the world by storm, in her own way, ever since.  I think of her as one of God's spies.  And while my children are too old for me to be primarily a "mommy blogger," I still see Down syndrome advocacy as an important part of my calling.

You may have heard the recent news of a scientific breakthrough that can switch off the extra chromosome that causes Down syndrome in a test tube.  While any potential therapies resulting from this are years away, and while we are only beginning to raise the complex ethical questions that will need to be answered before we could go ahead with such therapies (Would it change the essence of the individual?  What are the risks?  How would it be tested? Would you "fix" your child?), there is no denying that this news comes at a critical time. 

I know I keep my blog lighthearted most of the time, but the reality is sobering. We live in an age of medical miracles, when individuals with Down syndrome have the greatest possible expectation of high quality of life and long lifespan. The irony is that fewer children are being born with Down syndrome as a direct result of the prenatal diagnostic tests commonly available now.  With the latest generation of tests designed to target the disorder even earlier in pregnancy, the numbers are dropping alarmingly.  Somewhere between 50% and 95% of parents (the numbers are understandably fuzzy) decide to terminate a pregnancy with a Down syndrome diagnosis.  The reasoning for this is even more fuzzy, but at least in part it must be due to overwhelmingly negative portrayals of Down syndrome by medical professionals and in the media.  Even the media has been turning around in recent years, with concerted campaigns to "end the R-word" and positive portrayals of characters with Down syndrome on shows like Glee (perhaps the only likeable characters, actually).  I don't know what doctors are saying to parents these days, but I strongly suspect they put on their serious face for delivering bad news just as the hospital pediatrician did when he spoke to me nearly 14 years ago.  I encourage medical professionals to follow the lead of Dr. Brian Skotko, who has made it his mission to promote a more well-rounded approach by the medical community that takes positive information into account.

What experts fear is that the pool for potential therapeutic treatments (and for the scientific funding to develop them) will not even exist in the near future, so the treatments won't be developed.  There is a concerted effort in the Down syndrome community to promote positive treatments and counteract the overwhelmingly negative, insensitive, out-of-date information about Down syndrome that is commonly distributed to new parents.  Read the excellent series (perhaps misnamed) A Brief History of Down Syndrome at Down wit Dat, and you will realize that we are only a generation removed from routine institutionalization of people with Down syndrome.  Two generations separate us from Hitler's eugenics/extermination program "Aktion T4," which murdered thousands of human beings on the grounds that they were not fit to live in a perfect society.  It is not melodramatic to say that this generation might see the effective elimination of Down syndrome as a medical specialty.  The individuals will remain, but whether in sufficient numbers to command the attention of the community is doubtful.

It's easy to get cynical when the system only works if you follow the money.  I'm glad that people with Down syndrome tend to be naturally anti-cynical themselves, and act as a kind of antidote to an overly cynical society.  Tertia has benefitted greatly from educational therapies that seem common-sense now, but had to be fought for to put in place.  (And by the way, she just finished reading Harry Potter and the Deathly Hallows, on her own). Physical therapy started when she was a baby and is light years ahead of what it was a generation ago.  She was fortunate enough not to need open-heart surgery, but it was there and state-of-the-art, if her heart defects had been any worse.

I think that God's purpose in people like Tertia is not affliction or suffering, but rather a testing of the hearts of those who interact with them.  Mother Teresa reportedly called the disabled "professors of love."  How does our culture do in learning the lessons they teach?  There are heartwarming stories like this one, and heartbreaking stories like the death of Ethan Saylor that highlight just how far we have to go, and how complicated the work is.  I've been working on this blog post for three days now and I know I won't resolve anything by it.  But I'd like it, if you've stuck it out this far, if you would think a bit about how you, personally, can make the world better and not worse for people like Tertia.

Edited 7/23 - Since I wrote this a few days ago I came across a network of Down syndrome blogs and it seemed like a good idea to post this at their blog hop.  Please check out the link for more individual snapshots of what it's like raising a child with Down syndrome.  And I hope to make it a regular feature of my own blog from now on.

Book Review: Lives of the Twelve Caesars

Plus ça change, plus c'est la même chose

It's a good summer to be reading Suetonius.  Disturbing, but reassuring in a way, to realize that the cultural disintegration we are experiencing here and now is nothing new.  American exceptionalism - maybe not so much.  We have made a wilderness, and we call it progress.

I read Tacitus several years ago, and appreciated his restrained yet biting style.  I'm sorry that many of the juicy parts were lost to history.  But although both of my sons have read Suetonius as part of their classical education, I had developed my 6th grade Roman history unit without it.  So in late spring I set out to remedy the situation.  In a sense, I have learned nothing that I didn't know already, and only filled out what I already knew from secondary sources with material which is almost entirely inappropriate for 6th grade.  You might want to grab your copy of Suetonius soon, before the cultural police decide he was too judgmental and bigoted to remain on the shelves.  We already know how they feel about the Bible and those who teach from it.

Suetonius is a bit more prone to repeat hearsay than Tacitus.  And it is a bit disconcerting for a modern reader who wants to see a psychological analysis of the depravity of the Caesars, some kind of explanation for their behavior - and it is not forthcoming.  But in matters of historic record he is careful to present a balanced and fair account, with not much personal feeling coloring his writing.  The ancient Romans were, as a whole, very tolerant of anything or anyone that could conceivably be of use to them.  This open-mindedness served them well as they were building their empire.  In fact, their great irony was that they were so tolerant, even of immorality, that they became intolerant of those who adhered to any basic morality.  And when absolute power was concentrated in one emperor (who expected to be treated as a god), the new intolerance could be directed toward quite unexpected victims.

In the world's way of looking at things, both Julius and Augustus Caesar were brilliant leaders, and they were both duly deified after their deaths.  Yet the arrogance and narcissism that became pathological in their successors was present in them as well.  Strangest to modern readers is the obsessive-compulsive way they arranged their own and their families' personal lives - even to the point of arranging divorces and remarriages, frequently against the consent of the parties involved.  Check out the family tree of the Julio-Claudian emperors for just a taste of the weirdness, but prepare for a confusing time.  Ironically, with all the attention Augustus gave to micromanaging his family, he was remarkably shortsighted when it came to preparing a successor.

Source: accla.org via Katherine on Pinterest

Think Paula Deen got a raw deal?  The emperor Tiberius was so sensitive to imaginary insults that he banished a Greek leader, Xeno, for speaking a dialect that reminded him of an unhappy time in his life.  He forced Seleucus, a scholar, to commit suicide because he was too well-informed about the literature Tiberius was reading.  Of course, Tiberius was perverted as well as being cruel and, hmm, maybe you could say "capricious" if you wanted to make a bad pun.  So many Romans were killed without cause during his reign that no one thought of deifying him when he finally died.

Source: google.co.uk via Katherine on Pinterest

Caligula - even Suetonius calls him a monster.  Probably the less said about him, the better.  His attempts to define as normal whatever he wanted to do were not accepted by the people, and were ultimately not successful.  There is no denying that human life was not valued highly in ancient times, and that common decency was hard to come by.  But then you read a story like this one and wonder whether we should really feel superior at all.  Or when a shrieking mob of activists is so devoted to the killing of late-term babies that they shout down a Texas bill preventing abortion when a child is capable of feeling pain.

Source: Uploaded by user via Katherine on Pinterest

I always felt sorry for emperor Claudius.  Awkward and weak, he was despised by his own family members and was never expected to amount to anything - so he wasn't prepared to be a leader.  It's hardly surprising that he was not a capable leader, and that his great weakness of falling for inappropriate women led to his downfall.

Source: 2.bp.blogspot.com via Katherine on Pinterest

The first recorded account of gay marriage was by the emperor Nero.  Oddly enough, this is not something that makes it into the current press coverage, but I'll quote from Suetonius, p. 228, right after Nero raped the Vestal Virgin Rubria:

"Having tried to turn the boy Sporus into a girl by castration, he went through a wedding ceremony with him -- dowry, bridal veil and all -- took him to his palace with a great crowd in attendance, and treated him as a wife.  A rather amusing joke is still going the rounds: the world would have been a happier place had Nero's father Domitius married that sort of wife."

There follows a paragraph describing Nero's most likely incestuous relationship with his mother Agrippina, and then another gay wedding, this time with Nero playing the bride.  So much for the "committed, loving" relationships we keep hearing about as the gay agenda is imposed on modern America: the second time was with Doryphorus, not Sporus.  It would have been amusing, if it had not been accompanied by so much wanton cruelty.  Nero was responsible for killing an obscene number of human beings who crossed him, including most of his family members.  The word "unnatural" does come to mind.  One can only imagine what might have happened to the poor florist who refused to provide flowers for his gay wedding.

I wonder, will future generations look with the same freak-show amusement at modern America that we have when we read about the decadence of the Ancient Romans?  Bottom line, what I get from Suetonius is, the ancient decadent Roman emperors practiced perversity and the cruel slaughter of innocent people, but even the pagan historians still viewed their behavior as unnatural and depraved.  Human cultures do not turn around on a dime (or a sestertius), and trying to force people to accept what they know at a very deep level to be wrong will not be successful.

Randomday

We have a pest raccoon that has twice shown up in broad daylight now, to gobble Smudge's food on the back porch.  Steve has chased it off with a 2x4 both times, but it's probably living in our tall cedar trees.  We've been bringing in the cat food at night for awhile now, because there used to be three raccoons that would roam the yard after dark... but it's almost worse to have one who comes out in daylight.  Poor Smudge!  He's a total coward to begin with.

National Latin Exam results were announced yesterday!  At Cedar Tree we give the Intro version in 5th and 6th grades, the Latin 1 exam to 7th grade, and the Latin 2 exam to 8th grade.  It's a big deal, and the kids do well with it.  We had 2 perfect Intro papers in 6th grade, and over 80% of those Intro kids got some kind of certificate.  In 7th and 8th grade the tests are a little harder, but we still had 3 gold medals and 2 silver medals and a selection of magna cum laude and cum laude papers.  My hands couldn't keep up with handing out all the purple ribbons and certificates yesterday at the Grandparents Day assembly.  School-wide, 2/3 of all our students beat the national average on this test, and that's significant when you realize that probably a majority of students taking the test are in High School.

Quarta's class recited The New Colossus and did a skit about Ellis Island.

Latin Jeopardy was lively in 6th grade.

Chaunticleer crowed over the egg that Pertelote laid.  They are graduates of the Kindergarten chick-hatching project of 2012, (this year's 1st graders.)

The Auction signature quilt is on the machine and being quilted, at long last.  Maybe I can finish it in a week or so.

I made a grape pie for tomorrow.  A batch of granola is also toasting in the oven; I am trying some agave nectar in it instead of honey.

Quarta is away at a birthday party at a friend's house; Secundus is working down in Tigard again today; Daniel is nearing the end of an intensive production of Seussical far away in Pennsylvania, and so the only child at home right now is Tertia, who is quiet as a mouse, reading Harry Potter 5 or Star Wars graphic novels.  It gives me a taste of empty-nesting, and I don't like it!  By the way, Tertia finished reading Harry Potter 4 this last week, and was rewarded with watching the movie, mostly from behind her pillow.  Makes my blood boil when I hear about the academic papers proposing infanticide for children with Down syndrome.  And the bioethicists who think the general public is just too unsophisticated to appreciate their argument.

Speaking of well-educated fools... I was glued to the television along with everyone else in the country watching the great Boston manhunt yesterday.  (I don't know how I survived the 2000 election without cable news... Steve laughs at me, but I'm never going back!)  So glad they caught the guy.  I hear that he may have been an alumnus of the prestigious Cambridge Latin School, and a currently enrolled student at U. Mass Dartmouth.  Which begs a whole bunch of questions.  For example: why can't we take the tired, the poor, the huddled masses yearning to breathe free... and teach them something other than how to become murderous, America-hating narcissists?

"I am afraid that the schools will prove the very gates of hell, unless they diligently labor in explaining the Holy Scriptures and engraving them in the heart of the youth."
 --Martin Luther

Political Tuesdays: April Horrors

On Political Tuesdays I let myself get more philosophical than most days on my blog, and range freely over the political and cultural landscape.  It's not my intent to give offense in such posts, just to record my interaction with current events.  But I reserve the right to think freely here, and if you are one who is easily offended by differing opinions you may be happier in a different corner of the internet, at least on Tuesdays.

I first learned to wonder, "What is it about April, anyway?" in 1995, the Oklahoma City bombing.  Waco, two years earlier, was just another mishandled aspect of the Clinton administration I tried not to pay attention to.  Then there were the school shootings; at Columbine, just down the street a few miles.  I remember pulling the little boys back inside for safety as helicopters circled until late in the night.  Little Elian Gonzales, stolen from his family at gunpoint, again a Clintonian blunder.  Then as a teacher myself, I became more aware of the rhythm of the school year, the "spring fever" phenomenon.  Yeah, kids do crazy and unpredictable things in the spring, just when you'd think they would see the light at the end of the school year tunnel.  The ancients called it "Naufragium in portu facere" - to make a shipwreck in harbor.  Why is that?  Why do kids drop out, run away from home, pick a fight with their families, or make a disastrously bad choice that will ruin their lives right before they reach a positive milestone?  I don't know more than anyone else.  But I've learned to cringe through April, both on the personal and the national scale.  Maybe national leaders are just overgrown children, making bad choices and doing random things in the spring just like so many schoolchildren.  And then there are the obvious bad guys.  They take random to a whole new level.

The carnage in Boston is clearly the work of a psychopath, and a very anti-American psychopath at that.  I would think an anti-government kook would target a federal building or an IRS convention; a deranged madman would stick with schools and movie theaters; but this attack on athletes and civic celebration has the feel of our terrorist enemies from the Middle East, and the methodology was designed to maim and terrorize more than kill.  Whether the criminals will be caught and brought to justice is uncertain.  Whether our current leadership is even competent to prosecute a campaign for justice, rather than a political campaign, is even more doubtful.  We know that the left is utterly opposed to using American military force to wage war on terrorist states, and the American public is at best flaky about supporting such efforts.  John Kerry would be the hard-headed negotiator in charge of any diplomatic solutions; I can just see him now, riding his swift boat to narcissism.  No, I don't have a lot of confidence in political solutions for the Boston attacks, any more than there are political solutions for school massacres.  I hope for justice nonetheless.

I do see a certain chilling parallelism in the terrorism of yesterday and the moral and cultural decline of the last 40 years. And before I am charged with saying that God is judging America for gay marriage and abortion, credit me with being a little more nuanced than that.  America is judging herself.  There is a retributive principle of justice here, one that has been ignored in this country for my whole generation.  We are simply reaping what we have sown.  For forty years the lives of millions of our youngest children have been snuffed out in the privacy of clinics and doctors' offices, if they were somehow inconvenient to us: the emanations and penumbras of the Constitution told us this was permissible.  Now we are surprised that we have enemies who want to kill our athletes in the flower of their youth and strength.  Kermit Gosnell collected severed baby feet in jars in his Philadelphia abortion clinic for years, never inspected by health authorities or questioned by journalists, who said they were too squeamish to deal properly with the subject.  "I am someone who cringes when I hear a description of a sprained ankle."  Now the severed limbs of adult victims scroll across our Facebook feeds for all of us to see.  C.S. Lewis had a profound observation about the moral bankruptcy of the 20th century: "We castrate, and bid the gelding be fruitful."  In the 21st century, we kill our children, and bid their surviving siblings build a just and enlightened society.

Flashbacks to Columbine

Secundus went to a midnight showing of Dark Knight Rises with friends today.  I slept well, woke up early enough to catch the end of the Tour de France stage of the day, and was mildly surprised to see Secundus out of bed before 9:00 a.m.  He was checking out reviews of the movie, which he said was the best yet, when he found and told me the news about the horrific shooting in Aurora, CO himself.  At least I never had to worry about him.  At least I was able to do ordinary things with him today, like going on a practice drive, helping him clean up after he spilled gasoline on his clothes while pumping gas for me, and trying to understand why he likes movies with dark themes so much.

Thirteen years ago last April, I was 4 months pregnant with Tertia, just beginning to come out of the haze of hyperemesis and contemplating the pros and cons of trying to eat Thai food.  We had just moved from a 3-bedroom house to a 4-bedroom house in suburban Littleton, Colorado.  It had a finished basement that we planned to use for quilting and homeschooling (I was still under the delusion that they were compatible) and it had a nicely landscaped yard with a playhouse and small swingset.  I used to let the little boys, 4 and 2, play in the backyard while I concentrated on trying not to barf.  There was an interesting odor in the house: not bad, but not really good for one in my condition either.  I think it was maybe old wood polish.  Once the doorbell rang and a kind passerby informed me that she was worried about my little boy (that would be Secundus).  "He's on the roof of the playhouse!"  As if it wasn't one of the safer places for him to be, actually.

On that particular day, I can't remember where I first heard the news about the Columbine High School shooting.  It was either TV or radio, both of which I used to have on in the background to try to occupy my mind so I wouldn't think about how wretched I felt.  They broke into the regular programming with the first reports: shooting at the school, less than 2 miles away; breaking news had reports of escaped perpetrators in the nearby park, possibly at large in the community.  I brought the boys back in from the yard and pulled down the blinds.  We could hear helicopters circling for the rest of the day and into the night.  Reports of fatalities began trickling in as I stayed glued to the TV.  I needed to understand the sequence of events, but that didn't happen for days until the newspapers pieced it together for me.  A reporter from World magazine called and asked if I knew any of the victims, but none went to our church.  I was able to point her in the direction of some of the churches I had heard were affected through my day of watching the coverage, one of them being Cassie Bernall's church.  I remember being upset that the first responders hung back for so long while evaluating the situation, and left people bleeding and dying inside the school.  It does appear that first responders in this situation have had the benefit of training post-Columbine.  People may be alive now as a result, and that is something to be thankful for.

I know at least one family affected by the shooting: a young girl, whom I remember as an even younger girl at the church we attended in Colorado, is hospitalized after taking 4 bullets, one still lodged in the back of her skull.  Please pray for Petra, that her family will once more be able to enjoy doing ordinary things with her.

There is a sense of helplessness in a tragedy like this, but for a thinking person, there is also a desperate need to make sense of it.  For the community at large, it is devastating.  The long-term effects are more subtle than the immediate aftermath, but no less profound.  I find myself thinking back to that April day today, and remembering how thankful I was to be moving out of Colorado a few months afterwards, even though it did mean a second move in one difficult pregnancy and a great deal of disruption.  I'm just as irritated as I was then by the attempts to politicize a tragedy, to posture on gun control or violent video games.  But I do feel very sad, each time something like this happens, that our society has so few mechanisms to stage an intervention for a troubled young person before a tragedy.  His own mother reportedly suspected him immediately.  We'll learn more in the coming days, but I suspect that, like the shooting in Arizona, there were clear warning signs above and beyond the shooter's clean criminal record.  Perhaps our society, without sacrificing the freedoms that we cherish (above all else?), could come up with ways of identifying individuals who are a danger to themselves or others, and acting appropriately to prevent them from carrying out that threat.