Abby doesn’t say much, but if she could I’m sure it would go like this. “No no no no. No. OH HELL NO. NO no no no no. Give me a hug. A HUG RIGHT NOW! No. NO. HOW DARE YOU TOUCH ME?! No. No. Food. MORE FOOD. I threw my food on the ground. Clean it. WHY ARE YOU CLEANING THAT? I was saving it. No. No. Wanna go outside?”
You know, regular toddler stuff.
She is, in fact, a toddler. A spoiled diva toddler who has gotten away with too much because she’s too freaking adorable. But she’s also got her own stubborn personality, her own ‘free will’ that she’s learning to harness as if it were some super power. She’s frighteningly good at it, too. She yells. She throws fits. She wants HER way and she wants it RIGHT THIS SECOND.
She’s a toddler.
She’s also a toddler with Down syndrome, so it’s a tricky relationship. She knows what she wants, but doesn’t quite have the ability to express those wants all of the time. She throws fits and after a while, so do I. It’s hard, and what’s more, I get crap for saying that it’s hard. I feel like people want to think that because she has Down syndrome she’s supposed to fit into the Down syndrome stereotype of being happy placid all of the time. She’s not. She’s her own person with her own wants, likes, and PERSONALITY.
Stereotypes do exist for a reason. It is generally seen that people with Down syndrome are pretty happy. Abby is pretty happy. She’s pretty laid back too. But not anymore than Carter was at this age. My issue with this stereotype, even though it’s seen as a positive one, is that it tries to put her in a box that she doesn’t fit into. That no person I’ve ever met with Down syndrome fits into. It takes from her own individuality as a person and defines her by her diagnosis.
My friend Deanna wrote an amazing article on how the Down syndrome community has overshot in their efforts to prove that Down syndrome isn’t as horrible as some make it out to be. Read it. Right now even. I’ll wait. Listen, I’m all for showing people that Down syndrome isn’t a death sentence. That it’s not what doctors say it is when they counsel someone whose baby just got diagnosed with it. There’s a lot of misinformation about the reality of Down syndrome. I hope that this blog helps to negate some of that information. But at some point, our zealous need to prove to the world that people with Down syndrome deserve a chance at life, we’ve lost some of our grip on reality. In our characterization of all people with Down syndrome being angels, we’ve done what so many in the community hate- we’ve defined our children by their diagnosis, and not as the individuals they are:
Cute, sweet, but sometimes totally bratty, individuals.
Lexi Mag 
When people used to tell me that children with Down Syndrome had the sweetest best dispositions, it would make me mad, like they were saying that Madeline somehow lacked intelligence to have an opinion or figure out what she wanted. I hate that stereo-type. Love this!!!
That’s the other thing! I think it lends itself to the belief that they’re happy because they don’t just know any better.
PUuuuuhhhlease.
I have become, in the last 6-8 months much more aware of how I was processing news stories about individuals with Down syndrome through my special “Down syndrome filter.” When I look at the world through my Ds filter, every story about Ds has some relation to me and my child with Ds. I do not use that filter with my other children. I wouldn’t read a story about a typical mother who shot her adult daughter and worry “will my life in 20 years be so miserable that I will do the same thing?” I don’t know anything about these individuals – I don’t know if there is mental illness in this family that they all experienced (including the individual with Down syndrom) that might have led to these circumstances. Violette can be as stubborn as anyone I’ve ever met. But do I ever envision a day that I will be starving her and worrying about collecting her disability checks? Not really. I have friends whose children have multiple, complex medical issues related to Down syndrome. I have friends whose children have behavior issues. We all have our own realities, and if we know one individual with Ds, we know one individual with Down syndrome. In my mind, there are rotten people with Down syndrome, shoplifters, brats, who have an extra chromosome, just like there are lovely sweet sassy (name your adjective) individuals. I have a child with Down syndrome, but haven’t liked every individual I’ve met with Down syndrome. The message shouldn’t be only positive. The messages we give women who might be raising a child with Down should be realistic and accurate.
That last picture shows some ‘tude!
She doesn’t talk, but she has the most expressive face I have ever seen. And sometimes those expressions, while I am sure you aren’t enjoying them so much, are freakin’ priceless. She’s her own girl, all right. Kinda like her mom?
Thank you. She does communicate well with her expressions. And even when they frustrate me, I really really love them.
I GOT A SHOUT OUT ON LEXI’S BLOG! Day made. Your awesome take on this totally made me want to go back and rewrite every last stumbling word of my own. Well said! I think you are officially on my hero list.
That’s all it takes to make your day, D? You’re EASY!
THANK YOU for your writing (this post in particular). You filled something with your words that has needed a name for 7 years. I didn’t know that I needed to hear what you had to say, but I honestly cant tell you what comfort these words have given me. THANK YOU
I think we should aim for the reality of every child being unique. No matter their disability or not. Instead of doctors telling moms who are pregnant, their own version of what life with a child with Ds is like, pointing them in the direction of education, inspiration and positive role models. Popular literature often depicts individuals with Ds as being happy, happy, happy but of course that’s a myth. There are great books out there like Estreich’s ‘The Shape Of The Eye’, but there is misleading and just plain false information as well. If it were me, I would not want to hear what COULD possibly happen sometime in the future maybe never etc etc I would want accurate, real ‘this is how it is’ firsthand from parents who KNOW. When I was in college, part of my Early Childhood Ed curriculum was caring for a toddler boy with Ds. He spent the night sometimes, went shopping with me, stayed at my house whenever his mom was busy. That was hands down the BEST way to get a handle on how to care for a child. ANY child. I had no child care experience prior to that. He happened to be a child with Ds. I’ve never met a more stubborn child before or since. However he had a great little personality and when he finally DECIDED to walk at four years old, we all cheered. He just made up his mind he could do it. Didn’t cruise or crawl, just stood up and took off. Now THAT is a positive analogy for the mix of stubborn determination present in some individuals with Ds. By the way Lexi, I get a kick out of your little ones expressions. Cracks me up. Words not needed. Plus she looks like her momma. LOTS.
I wanted to say in this last picture, it looks like she wants to send her food back to the Chef in the kitchen. Her thought bubble says ” This is not what I ordered.”
Funny! My 2 year old with Down Syndrome is that. A 2 year old first with all the positives and negatives of a 2 year old. Not happy all the time.
This is an amazing article.Your awesome take on this totally made me want to go back and rewrite every last stumbling word of my own. I like your article.Your article will give me the help for my children caring.Well thoughts.Thanks for this amazing article!!!
It is really very interesting or turf job specially for man. Because we haven’t more experience about it but women have more knowledge about that !! It is interesting when child is funny but if you will get child like crying baby defiantly you will feeling irritating. So child care must be necessary for us but not specially for man…Thanks