Sunday, September 20, 2009

Down Syndrome Awareness -- DS Character Traits... Or, Are They?

I always found it interesting to hear mothers whisper about how all the less-than-desirable traits their children displayed could be attributed to their husbands while the cute or smart traits were claimed as their own genetic donation. Having children is an amazing amplification of our own and our spouses' traits -- strengths and, sometimes, weaknesses -- all wrapped up in this human being that we love so dearly.

You've probably heard by now about my daughter, Olivia, and Brian and Michael... my 4-year-old identical twin boys who happened to have been born with an extra 21st chromosome (aka Down syndrome). Like every parent, I am overwhelmed with love for all 3 of my children. They are nothing short of amazing in the eyes of absolutely everyone who knows or meets them. That said, the boys -- being 4-year-olds -- occasionally display some less than desirable traits... (For those of you who are thinking, "what about Olivia?"... Yes, she does too!) I know, Bad Mommy for putting that on a blog for all the world to see. God forbid someone should know that my perfect children are imperfect. Or worse.... "normal"!

Yes, it's true. Sometimes even my kids with Down syndrome behave less than perfectly! For instance, just last night, Brian threw his first little temper tantrum (first at 4 isn't bad) because he wanted to wander off in search of Daddy who'd gone to purchase ride tickets at an absolutely AWFUL amusement park called Boomers (saving that experience for another post)! I was actually surprised at just how unruly both boys were behaving... though admittedly it was only marginally bad compared to the behavior of other children I've seen. But, these were MY kids... and I was a tad embarrassed, truth be told.

So, this morning as I pondered Brian's odd behavioral outburst -- his wriggling free from my grasp to lay down on the ground crying and pining for his Daddy -- I thought maybe he was too tired, too hungry or getting sick. Sadly, it also occurred to me that folks around the park might have attributed his behavior to the fact that he has Down syndrome. This is SO not the case. You see, he's always had Down syndrome but he's never behaved the way he did last night. Which is why I got kind of ticked off this morning as I was thinking about it.

I have seen countless children throw themselves to the ground kicking and screaming and none of them had Down syndrome. And, I'm guessing that most people don't walk up to that child's parent to assign blame to their genetics for the behavior. More often than not, they probably -- often wrongly, usually secretly -- blame the parents for improper training. Sure, I've gotten the "Can't-you-control-your-kid" look on occasion. But, unfortunately, when my child acts out or displays any less than desirable behavior, people have actually had the nerve to say to me, usually with pity and a shake of their down-turned heads, "It's the Down syndrome. You know they're very stubborn!"

Oh? I'm sorry, do you have a child with Down syndrome? And, what 4-year-old do you know that doesn't show signs of stubbornness, using their bad behavior to try and get what they want? Let me tell you, I stood my ground. I didn't let Brian get up and go find Daddy. So, the next time, when he DOESN'T throw a tantrum but waits patiently... is that ALSO because he has Down syndrome? Or is it because, as a parent, I addressed the situation appropriately?

On the flip side of that behavior coin, when my children wake up happy, or laugh with glee at something they find humorous, or greet someone they like with affection, those very same strangers say to me, often with envy, "It's the Down syndrome. You know they're all like that!"

Hmmm? You know what... it doesn't work both ways. Matter of fact, it doesn't work at all to constantly blame the Down syndrome for every little thing my boys do or don't do.
I, for one, am tired of the stereotypes. I'm tired of hearing every one attribute every negative aspect AND every positive aspect of my children's behavior to Down syndrome. How about their behavior is just their behavior because Brian is Brian and Michael is Michael? And sure, I'll take some responsibility for how they are and how they choose to display their behavior. I am their parent and, as such, it's my job to teach them right from wrong. And, it's my blood, and my husband's, running through their veins. (See a little stubbornness in there? I can't imagine where they get it from!)

Maybe my 4-year-old watched your child that doesn't have Down syndrome throw a temper tantrum in the supermarket and get rewarded. Maybe my 4-year-old is stubborn because he's 4 and it serves him well as he investigates the influence he has on his world... and not at all because he has Down syndrome. Maybe my boys who happen to have an extra 21st chromosome wake up happy because they're like me. I wake up happy every day! That's right, every morning with a smile on my face mostly because it's another day I get to spend with my kids. For that matter, my daughter wakes up happy too... and she doesn't have Down syndrome. So, maybe my kids are happy because genetically, they're MY kids and not because genetically they have an extra 21st chromosome.

Women are not dumb because they have blonde hair. People are not smart because they wear glasses. And, my children are not stubborn or happy because they have Down syndrome. They are those things and so much more because they are themselves. Yes, Down syndrome is part of who they are. But, it does not define them. It does not govern their every behavior or emotion. My children are their own unique selves. They are Brian and Michael. They are sometimes stubborn. They are usually happy. Genetically, they are MY children! Isn't that just SO obvious?
I have found in my extraordinary life that yes, white men CAN jump... Just because they can and even if they have Down syndrome!


  1. Maybe my 4-year-old watched your child that doesn't have Down syndrome throw a temper tantrum in the supermarket and get rewarded.

    That is my favorite quote! I like the idea of our children's not so nice behavior is blamed on someone elses child not so nice behavior, Down syndrom or not!

    What a great post! Thank you, because it had me thinking too, especially with Lillian and her knack for pulling hair!

  2. Amen, sista. I have two 4-yr olds who throw tantrums, fits, etc, etc... and have MANY ugly moments. And also some super sweet moments. They are FOUR. Seriously, I can't believe your boys have not thrown these fits before. You are honestly so lucky. You have the sweetest kids. And NOT because they are Down Syndrome. But because they are yours... you are a great mom.

  3. Exactly! Btw, I once wrote a similar post about large families. Basically, if my kids are dressed in mismatched clothes, throwing tantrums, or bickering with each other, it's not because there are too many of them. If I'm stressed, out of money, struggling in my marriage, or tired, it could be any number of reasons - not because I have too many children. All of the above happen in smaller families, too. Why are we so quick to judge?

  4. I have always wondered when the day comes and I know it will, what will I say,because I will say something(it's in MY blood)to a stranger who gives me the "it's because of the DS that they behave like that" line. I would love to copy your post and carry them with me basically for the rest of my life and just hand them out when needed. You said everything perfectly. I do believe this is one of my most favorite posts from anyone, ever.

  5. "my children are not stubborn or happy because they have Down syndrome."