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Sunday, October 23, 2011

The Wonder of a Toddler

In my guest blog post on Parents.com Having a Child With Down Syndrome: What Nobody Tells You, I write that eight years ago I wouldn't have known that October was National Down Syndrome Awareness Month. I'm fully aware that the only reason I know this now is because I have a child with Down syndrome. I think it's safe to say, that if Kayla was born with 46 chromosomes I don't think that eight years later I would know this was Down Syndrome Awareness Month.

Because why would I? It wouldn't have impacted my life. It's not something you hear mentioned in the public. Outside of the "Down syndrome circles" does anyone talk about it? I guess it's possible, like some of you who read my blog and don't have a child with Ds, I might have still started a blog, and I might have come across a blogger who has a child with Ds, and maybe followed that blogger, and maybe I would have been aware, who knows.

I guess bit by bit the word is getting out there. All of the bloggers who are participating in 31 for 21 have readers who aren't directly impacted by having a child with Ds so they are becoming aware. Word is being spread in social media.

Then I came across the article Down Syndrome Awareness Month Opens My Eyes As a Parent. I realized it was written by a parent who doesn't have a child with Down syndrome and doesn't seem to have any connection to Ds at all ... just somehow became aware about October being DS Awareness Month.

She mentions watching video clips of the National Down Syndrome Congress We're More Alike Than Different campaign and said that they are getting their message across.

I thought, "Great!"

She went on to say that the campaign features young adults telling their stories and what she realized was that they love life. "They love their lives."

I thought, "Great!" again. I thought someone is getting the message that people with Ds are their own unique individuals with hopes and dreams and lives like everyone else.

But then. Then she said, "These earnest souls never lose the ability to be amazed; instead, they somehow retain the wonder of a toddler just discovering the world." And the bit about 'retain the wonder of a toddler' was italicized in the article. To emphasize it. To draw attention to it. To make it the main point of her opinion after watching the video.

If it wasn't italicized in the article I was going to do so in my blog post because that's the phrase I want to draw attention to as well.

In the paragraph above she mentions the videos are of young adults. Young adults telling their stories. Something about the phrase "wonder of a toddler" rubbed me the wrong way. These are young adults. The message is "more alike than different."

Yes, maybe some/most people with Down syndrome do have a more ... innocent (? Is that even the right word?) view of the world. Maybe they do have a more positive outlook? Maybe they do appreciate life more? Maybe they 'get' something that most of us don't? Maybe they know something we don't?

But they still deserve the respect of being treated like the young adults they are. They don't need to be described as having the wonder of a toddler. Maybe they just have the wonder of life. Of living life. Of loving life. Of exploring life. But not the wonder of a toddler.

I remember when Kayla was very young and frequently hearing things like "you get to enjoy her being a baby longer" and it would make me cringe. Inside I would think, "No! She is not going to be a baby longer. She's going to grow and develop at her own pace, but we will treat her as age-appropriately as we can." She might have delays, she might not be doing all the things kids her age are doing, but we are not going to baby her.

I just feel like this description patronizes these young adults into something less than what they are.

It doesn't give them credit for reaching adulthood.

It doesn't give them credit for being "the college student with dreams of singing on American Idol to the teacher's assistant who likes to dance and "get his groove on" to the exercise enthusiast ..."

I'm glad she has a new outlook on Down syndrome. She does say, "How dare I look at these families and assume their lives are more difficult than anything else? Maybe automatically "feeling sorry" for Down syndrome families is an insult of sorts. Who am I to say that their differences equal nothing but disadvantage?"

But I wish the whole message she got was that they are just people. Just people with an extra chromosome who deserve the same amount of respect.

Or am I the only one who was disappointed in the "wonder of a toddler" comparison?

ETA: Thanks for the comments so far! Appreciate your thoughts on this as well. I admit I probably was a bit overly sensitive when I read that and took offense to it! I felt it perpetuated yet another stereotype - that people with Ds are always, or will always be, 'child-like.' And by continuing to have that mentality about people w/Ds it makes it hard to make any progress with the impression society in general has on individuals with Ds.

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Andi @ Bringing the Sunshine said...

I clicked through to the article and while I can sorta see what you're saying, I feel like maybe it was just a poor choice of words on her part, rather than an indication she really thinks they are like children. People with Down syndrome do tend to have a more positive outlook, are often full of enthusiasm, and frequently sport an uncanny ability to enjoy the small moments in life that so many of us don't - young children are the same way. I think her analogy was more along the lines of the "kid in a candy store" cliche' that we might use to describe ourselves when we're excited about something.

At least that's what I'm going to choose to believe about her, because she's on our side when few typical people are. :)

Nicole said...

I think that sometimes as parents of special needs kids, we can become very sensitive, and possibly even OVER sensitive, about things like this. My child has dwarfism, and it wasn't until my pregnancy with her that I learned that the word "midget" is offensive. Yet when I was pregnant, my husband told his colleague that our daughter would be a "midget" thinking that it was just another term for "dwarf". I see so many parents get their backs up about people using the term "midget" when I think most of the time that it's used, it's used in ignorance by people who mean well.

I think that each individual syndrome has it's own terminology, it's own way of "PC speech" etc... and sometimes when we read something that is not PC, it would be wise to take a step back and ask "was this said in a cruel/mean/disrespectful way, or just out of ignorance?" - I really don't think that it helps us to get offended by everything...

Mom24 said...

I think you make some really good points, and I understand what you were trying to say, but I also appreciate what the other commenters were saying. It's good to think about the words we choose though, and I can see how her word choice could be hurtful or frustrating to you.

Crittle said...

Reading the previous comments almost makes me want to change what I was going to say. I realize that maybe I'm not the most mature person in the "room."

But it bothered me. Really. I get that she's one of the "good guys" and that the motive behind the article is a good one. But still. Ick. Adults are not children and being likened to a toddler? Huge perpetuation of a tired stereotype.

She tried though. I do give her that. Most people don't. And I hate to bash someone that wants to be on our team for doing something that she may not have even realized. I just wanted to give my pure first reaction.

Ms. Kathleen said...

I personally found this statement perfect. You had every right to be upset.

"I just feel like this description patronizes these young adults into something less than what they are."

They are not toddlers and that was an insult to those young adults.

Thanks for a great post :)

AZ Chapman said...

I think u hit the right point I actually wrote about something similar in my blog post recently (it is a repeat of an old blog will send u the link on fb

My name is Sarah said...
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