The Long Way To Germany: Down syndrome

(This post is dedicated to all the beautiful, remarkable people in the world who have Down syndrome, as well as to the families and friends who love them.)

October is National Down Syndrome Awareness Month. With me being the very sporadic and infrequent blogger that I've been so far, it probably doesn't surprise anyone that it's taken me until the month is nearly over to write a post reminding people about it. But as one who is too-often running late and is an expert at procrastinating, I've come to learn that in most things, the old saying "better late than never" really DOES apply.

In that spirit, I present the following two-part documentary, which I discovered much to my joy on YouTube. It's about the very special Core Family, two loving parents and four big sisters who weren't about to let a little Down syndrome get in the way of loving and caring for their son/brother.

It's a beautifully filmed little piece of work (with kudos to Papa Core, who captured his children's 1960s childhoods so beautifully and poetically on his no-doubt quite primitive video equipment. The moving footage, combined with his eloquent, poignant commentary, brought tears to my eyes more than once while viewing this. The credit goes to filmmaker Roger M. Richards for the evocative synchronization of Core's audio commentary with his video images. Richards--Core's grandson, and the son of one of the sisters featured in the film--found his grandfather's audiotapes and home movies among boxes of tangled film spools he inherited upon his death, and edited them together to create this incredibly moving documentary.)

I think this "small" film says just about everything there is to say about the sacred bonds of family, and the incredible, abiding, unconditional love of four sisters for their baby brother. And--perhaps most important of all in these times when the prevalence of amniocentesis is leading to an alarming increase in the rate of abortions of fetuses revealed to have Down syndrome--it shows us the sweetness, purity and beauty (maybe not apparent to some on the surface, but there all the same) of people with Down syndrome. I think it shows quite clearly just what the world would lose if people like Dwight Core Jr. (and my son Daniel) ever became an extinct "species."

Think of Me First As A Person--Pt. 1

Think of Me First As A Person--Pt. 2

This wasn't starting out well.

I had just parked the Jeep in the high school parking lot. My two boys (ages 10 and 5 at the time) and I had just gotten out of the car, eager to head to the gym for their older brother's basketball game.

Two male students walked by, absorbed in a conversation. One of the first words I heard as they got within earshot was the F-word. They just blurted it out as loudly and casually as you please when they were right next to us. My kids looked up at me with slightly shocked expressions. I stood there a little stunned myself, wondering why they couldn't have lowered the volume just a notch as they approached us, at least for the part of the conversation featuring that word.

It was almost as if they'd wanted us to hear them say it.

Immediately I went into my I'm-turning-into-my-parents mode: indignant and inwardly fuming. How could they use that word so loudly and carelessly around young kids, in front of somebody's mom, for goodness sake, and with no shame! I started thinking all those kids-these-days thoughts: they're so rude, self-centered, no respect for their elders, etc.

Now I'm no prude when it comes to swearing. Not that I do too much of it myself. I try to save those powerful words for those rare occasions when I really need them. But I grew up in a pretty hardscrabble, blue-collar area, so a lot of the people I hung out with in high school were chronic swearers. Many of them had probably learned it at home. Or just thought it leant to their street cred. It never bothered me too much to hear it. I was just used to it I guess; some of the kids in my crowd used (or I should say, overused) the F-word as just another adjective. But even the worst offenders among them would check the swear-words at the door when in the presence of little kids and adults, especially if those adults were--egads!--somebody's parents.

But not these 21st century teenagers. This wasn't the first time this has happened to me; I've encountered groups of profanity-hurling teens while grocery shopping with my kids, in movie theater lobbies, etc. Again, it's the nonchalance with which they do it--even within full earshot of children and older adults--that I find a little disturbing. Many of them use these words indiscriminately to express even the mildest annoyance at something.

So with all these thoughts steaming inside of me at this point, I had worked myself into a bit of a stew, and was feeling pretty fed up with their whole generation. Definitely not the right sort of mood to be in when you're about to face a whole gymnasium full of 'em.

As we entered the school building, I tried to shake off all the negativity, to rid myself of those venomous thoughts. I didn't want those thoughts to poison my enjoyment of my son's game. Well, it didn't take long to stop thinking that way. What happened next helped me to change my mind about those teens and to hold out hope for them, lots of hope.

Coming from the stillness of the bleak, wintry outdoors, the loud, electric atmosphere in the gym was a total contrast. The place was positively buzzing! The bleachers were packed on both sides. What was unusual about this was the fact that this was a morning game, held while school was in session. Most of the students had come here rather than going to study hall. So they didn't have to be here. And that's a big point, which you'll see in a minute.

As the two teams walked out from the locker rooms to take their places on their respective benches, the crowd roared...for both teams, home and visitors. The players, in full uniform, beamed and waved up at the bleachers, feeling the love.

But this is where I need to mention that these weren't just any old high school basketball teams. Both teams consisted of all the TMH students from their respective high schools; in other words, these were the "teachable mentally handicapped" kids. (That's the official label the education system in Illinois gives to the more severely handicapped students, as opposed to the "educable mentally handicapped," who are higher functioning.)

But you wouldn't know that it wasn't Michael Jordan and Scottie Pippin out there from the way the crowd of their non-disabled peers whooped and hollered and cheered them on!

All these young, able, "normal" students were giving these kids the grand reception, making these two teams--filled with many clumsy, lumbering, often confused players--feel like graceful, revered NBA superstars.

Some of the players couldn't quite find their way to the basket without a friendly assist from their personal aides; and still the crowd cheered them on. Some of the players passed the ball into play by rolling it down a ramp from their wheelchairs; and still the crowed roared.

Still others (like my laid-back Daniel, who has Down syndrome) were more content to just stand in the middle of the court as the game moved back and forth around them, exchanging high-fives with another disabled friend. And still the crowd got to its feet and clapped even louder.

There was no smirking from those students in the bleachers, no pointing and laughing, no making fun. They just radiated so much genuine enthusiasm and affection out to both of those teams on the court. They really paid attention to the game, following the action closely, cheering or getting all hushed at all the right moments.

At one point I overheard a student sitting behind me in the bleachers ask his friend if he knew the name of the player in the #18 jersey, who was dribbling the ball down the court. "Oh, that's Mike," answered his friend. So the next thing I heard was shouts of "Go Mike!" and vigorous applause coming from behind me. Mike (who also has Down syndrome) stopped in mid-dribble and glanced up towards the bleachers, surprised to hear his name shouted out. Then he flashed a huge, proud grin that crinkled the corners of his sweet, slanted eyes.

And did I mention that the school's marching band was on the sidelines in full force, bleating out plenty of "We Will Rock You" riffs and other rabble-rousing numbers on their horns and drums to pump up the players and the crowd? And the cheerleaders cheered and clapped and did their flips and stacked themselves in their pyramids, putting just as much effort and skill into their routines as they would for the varsity team. From the energy in the gym that day, you'd think it was the biggest game of the year.

These weren't bored, miserable kids coerced into watching the game by their teachers after being admonished to be nice to the "retarded kids." They all seemed to be enjoying every minute of it, almost as much as the basketball players themselves.

It was all enough to bring tears to the eyes of a mom of a disabled son, and it did.

And it also made me feel really guilty for thinking those cynical thoughts I'd been thinking out in the parking lot. True, there are a lot of shallow, rude, disrespectful, self-obsessed teenagers out there. Always have been and probably always will be. But there are also so many like those teenagers in the gym that day, who gave those mentally challenged kids their chance to be recognized and to shine, and to feel very good about themselves.

And that makes me feel pretty good.