Celebrating The Extra

October is National Down Syndrome Awareness month in the United States and to start it off last week I posted a little something on my FB page. Had I been really tech-saavy, I would have first copied what I had written and then pasted it here on my blog, but alas, you have not stumbled upon such a thinking-ahead-kind-of-person. Instead, you found me, who just writes whatever she wants, whenever and wherever she wants. I’m freaky that way. So, if you want to see my first post in what will no doubt be a RIVETING series on ALL things Trisomy 21-As-I-See-it, follow this link: https://www.facebook.com/gigim/posts/10151588561797294. I edited my privacy settings on that post to “public”, so you should be able to see it just fine.

Alrighty, you made it through that missive. On to bigger and better things. Hopefully.

Part Deux: Why You Should Take The Journey Into Acceptance

I’m first going to address that mom (or dad)-to-be. If you’re not a mom-to-be, please read this anyway, because chances are you are going to know another human being in the not-so-distant future who is going to reproduce. It’s kind of what we people do, so I promise you this WILL be relevant in your life, probably sooner than later.

This idea is fairly simple so hopefully we won’t have to take all day explaining it: IT’S OKAY TO BE DIFFERENT. Yes, having what’s called Down Syndrome does by definition make you “different” from most of the population. Down syndrome, is in essence without going all genetics-geek all over you, is basically an extra chromosome on the 21st gene. For a long time (like roughly the first six thousand years of humanity) no one knew exactly what it was, but then an inquisitive British doctor named John Langdon Down started doing some targeted research on people who shared a bunch of similar characteristics, which eventually led more scientists to get really nosy with genes and then they figured out that it’s exactly on the 21st gene that people with Down Syndrome (named after that British doctor Dr. Down) have an extra chromosome. Voila! Mystery solved. So yes, because only one in 693 live births have this extra genetic material, it does, by definition make them “different” than the rest of the population. This is not bad. Repeat after me, “It’s not bad to be different”. This may be really, really difficult for some of you to say in front of the bathroom mirror at first because we live in a society (especially Western society) that WORSHIPS homogeneity. Think about it: if you’re a woman and you’re not a size 4, you’re a fat slob. If your kindergartener isn’t reading and writing and tying his/her own shoes by the time he/she STARTS school they’re already “behind” and labeled “slow”. If you don’t go to college you’re not “smart”, and so on and so forth. There are all kinds of ways that society uses labels to define who we are, instead of US as individuals proclaiming with confident boldness who we are as individuals and that we matter and are to be cherished simply because we ARE.

Secondly, having Down syndrome does NOT, I repeat does NOT equate to being sickly, medically fragile or weak. Did it used to? Yes. For the intents and purposes of this conversation, that’s ancient history. Now quick, let’s EVERYONE go to the nearest medical school and inform the doctors-in-training there of this revolutionary good news. For reasons that I cannot BEGIN to fathom, U.S. medical schools CONTINUE to this day to put forth the MISinformation and the outright LIES that babies born with Down Syndrome face insurmountable medical challenges simply because they have Down syndrome. This is STUPEFYING to me.

In 2008 our family moved to the SouthBay of Los Angeles (roughly the area south of LAX along the coast and down to Long Beach) and I was ALL excited, in part, because I was looking forward to meeting the families in the Down Syndrome community in Los Angeles who were no doubt accessing some of the most enlightened, cutting edge, state of the art medical advice in the country. I mean L.A. is the second largest city in America right? It’s home to the Kardashians, 40 year olds who commute to work on skateboards, more personal trainers and hot yoga studios than I can shake a stick at, and a juice bar on every corner, so surely this town was going to school me on best practices when it comes to chromosomal abnormalities. I seriously don’t think I could have been more wrong. I met moms who had given birth in some of the biggest, shiniest hospitals in the country who were told after their babies were born (these are moms who didn’t have a prenatal diagnosis) in hushed tones by doctors who wouldn’t meet their eyes, some of their doctors wouldn’t even tell them to their faces, leaving that to the nurse on duty, other doctors were extremely dour and grim in their prognoses for their babies, simply because their baby had been born with Down syndrome. They were shattered and terrified during a time in their lives when they should have been met with HUGE congratulatory hugs and slaps on the back and great hope for the future. I’m sorry, but that’s just WRONG. Now, does it happen sometimes that a baby born with DS might also have something else medically going on at the time of birth? Yes, sometimes. Yes, that extra chromosome on the 21st gene can mean that a baby has a heart condition (some are very minor while others require immediate surgery). Sometimes our babies are born needing extra oxygen (if you live anywhere on the continent in high elevations, you know this also applies to typical babies). And some are born with some digestive/intestinal things going on. But this America (and Canada too) people!! We have OUTSTANDING medical research, care and practices!! In just one generation of people born with DS all areas of medicine have advanced SO MUCH! Case in point: our son Hayden was born with what’s called a VSD: ventricle septum defect. It’s actually pretty common in babies with Down syndrome and preemies. Here are the Cliff Notes on VSD’s (keep in mind I’m just poli sci major, so I truly know nothing, but here’s what I remember): in utero, there is a flap inside the baby’s heart near or on the left ventricle of the heart. The flap is supposed to be open, letting blood flow back and forth while the baby’s growing in utero. That flap usually closes within hours of being born, after the baby starts breathing room air. For some reason this flap doesn’t always close right away in babies born too early and in babies with DS. So Hayden was born, at elevation. He needed just a tiny amount of oxygen. No big deal really (okay, okay, I admit I COMPLETELY freaked and needed oxygen myself when they told me that I was going to be responsible for his oxygen needs at home. I still remember my blood running cold, “I CAN’T DO THIS!!” I pleaded with the nurses, “I’m a Liberal Arts major with virtually NO marketable skills! He’ll die at home with my hands on the oxygen tank!!”). Okay, back to the story. So truly, in the scheme of things, needing a little O2 at elevation at birth is not a big deal. The thing is, Hayden continued to need more and more, until we went to his scheduled one month cardiology visit (yes, all babies born with DS do need to see a cardiologist within the first month just to make sure that everything’s okay) and what the cardiologist discovered was that that ventricle flap had not only NOT closed, but the oxygen we were giving him, was blowing it open even more. Not a good thing. The good thing? Pediatric cardiology has come LIGHT YEARS in the past 25-30 years. This VSD definitely would have side lined a person with DS from engaging in “normal” life activities (running, swimming, hiking, traveling by plane, etc….) born in the 70’s or 80’s, but by the time H was born in 1998, it was quickly and EASILY fixed in an operation the next day. We were home with our beautiful baby boy within 48 hours of surgery. WOW. So, all that to say, yes our babies CAN have some heart stuff going on at birth, but truly, if you’re anywhere near decent medical care, it’s NOT the end of the world. (more on how to find good doctors in upcoming posts) I’m sorry, but we’ve just come too far as a society to roll over and say “well just take your baby home and love him because he’s not going to have much of a life”.

Finally, I want to talk to you who don’t have a child or relative with DS, or who, barring a miracle (think Sarah, of Sarah & Abraham fame from the Bible) aren’t going to have a child with DS. You also have a HUGE role to play in this new way of thinking that says, “IT’S OKAY TO BE DIFFERENT”. Yes, for sure children with DS do have different features and many are easily picked out of a crowd (they tend to be shorter than their same aged peers, have slanted eyes, smaller noses and ears, and the backs of their necks are often flat). So yes, with that extra chromosome do come some cosmetic (as well as intrinsic) differences. But again, I want you to repeat after me, “IT’S OKAY TO BE DIFFERENT”. One of your kids may know another kid in school who has DS. I promise you, your child will NOT, I repeat, will NOT contract Down Syndrome from that child (you should be so lucky, but that’s for another post). It is NOT a disease, it is a condition. It is NOT contagious, so you don’t need to treat a child with whom you come in contact like they’ve got the plague. I don’t care that you’ve never met “one of those kids” and you don’t know what to do with yourself. Know this: ALL babies, children, teenagers and adults with Down Syndrome are PEOPLE. Greet them and treat them like you would ANY other person. Of course, I’m making a HUGELY dangerous assumption in my hopes that you yourself are a decent and civilized person, and don’t regularly scowl or make ugly faces at total strangers. If you regularly work with the public (bank teller, grocery store clerk, retail clerk, librarian, convenience store clerk, etc….) talk to that person who has DS like you would any other person, “Hey there, how’s it going?”, “I like your shirt!”, “I like your Buzz Lightyear you brought with you today!”, “You have a great smile”, etc……All of those phrases are great openers, or just friendly greetings. The person with DS may or may not be able to respond to you verbally, but I GUARANTEE they both see and recognize your friendly intentions. Treat them like YOU would want YOUR child or grandchild with DS (if you had one) to be treated. If you have more sustained contact with a child or young person with DS, like in a Sunday School setting, or child care at the Y, Boy Scouts or Girl Scouts, or a playgroup with other moms, do whatever you can to include that child in your activity. We’ve already established that having DS does make you different to some degree, but for how YOU interact with people, know that they’re going to be the “same” more than they are different: they want to be included, they want to have fun, they want to see what you’re doing if you’re a group leader, and they wanted to be treated like every other person in the room: with dignity and respect. Also, if you’re at ease with a differently abled child, the other kids and adults near you will take your cues and be more likely to be comfortable.

It’s high time that we stop treating ANYONE, regardless of their differences, like they’re something to be feared, just because they don’t live in the middle of the boring, homogenous bell curve. I also think it’s also high time we move beyond this ubiquitous and meaningless “awareness” thing we have going on in our culture. You can still be “aware” of someone with Down Syndrome and treat them like dirt, or worse, treat them with apathy, as if they have nothing to offer our communities and society as a whole. People with Down Syndrome are worth getting to know because they are as unique, creative, and quirky as the rest of us. Different doesn’t mean less. It just means different. And it might be different for you to move out of your comfort zone to get to know someone who is not like anyone you’ve ever met, but I guarantee you, it will be worth your effort and if you’re lucky, you just might be changed for the better.

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