Telling a 4 Year Old That His Sister Has Down Syndrome

The other day, Micah was thinking about Mac and what would be going on when he would be three years old.

“Well, when Mac is three years old, he’ll be starting to talk, just like Moxie,” he said with a confident nod, his little voice full of assurance.

I stopped for a moment, wondering if I should just let that pass – because Mac, not having a disability (that we know of, anyway), will most likely start to talk long before he’s three years old. And yet addressing that he will likely be talking long before he’s three years old – but Moxie won’t – would necessitate talking about the reason he will but she won’t: Down syndrome.

Then I laughed a little at my hesitation. I mean, it’s not like we don’t talk about disability in our house! Besides the fact that I’m deaf, conversations like the one we had about having no arms or legs isn’t in the slightest out of the ordinary. I think it just feels different when I’m talking about Moxie, Micah’s little sister.

So I took a breath and turned to Micah, “you know, Mac will probably start to talk before he’s three years old,” I said. “In fact, he’ll probably be talking when he’s two years old, and maybe even when he’s one year old.” Micah nodded in that way he does when he wants to make it seem like he knows what I’m talking about…but he really doesn’t. I went on, “Moxie has Down syndrome, honey.” He nodded again, this time with excitement, and said, “yes, like my friend William!” I said, “yes, she has Down syndrome just like William has Down syndrome. That means that both she and William have an extra chromosome, an extra bit of information in their blood. That extra bit of information can change some things and talking can be one of those things.”

My friend William can talk,” Micah said. “Yeah, honey, he can talk and it doesn’t mean that just because he and Moxie both have Down syndrome that they are the same. He is William and she is Moxie. It’s like you and other boys that are 4 years old, right? You are a boy and they are boys and you are all 4 years old, but they might not like Star Trek or reading or playing pirates – you can have some things the same and some things different. It’s like that with William and Moxie. They have Down syndrome in common but he’s William and he’s a boy and she’s Moxie and she’s a girl and they are very different people.”

He nodded, but I could tell that I had lost him after I mentioned Star Trek and playing, and I was right because the next thing I knew, he was talking about a girl that he likes in pre-school and he likes her because she will play Star Trek with him. That’s my boy, all right.

I let it pass, let the conversation move in the fluid way that conversations do, all the while thinking that I’m glad we are talking about this, glad that Down syndrome and the differences that it brings won’t be something we’ll tuck into a pocket, unexplored. Rather, it’s something that we are already pulling out and having frank conversations about.

That’s my advice in this: to be upfront about disability, any disability, but especially about disability present in your own family. Rather than making a big deal about it, and waiting for some auspicious drum-rolling, book-toting moment, weave the talk about disability that is present in your lives into your typical conversations. But do talk about it. Kids are like ants with the largest antannae ever – they are everywhere and tuned in completely when you may not think they are. They can smell it when you are not being honest or you are putting them off, so don’t. Just tell the truth.

Bite-sized, fun-sized, kid-sized. Truth.

Some kid-sized truths to remember about Down syndrome:

  • Down syndrome is really pretty easy to understand: it’s just an extra chromosome
  • Down syndrome is different for everyone. Like all disability, it’s not one-size-fits-all
  • It does have the potential to change some things in the way that the person with Down syndrome will learn/grow
  • Remember! Down syndrome is nothing to feel sad about. If you feel it’s a tragedy, your child will pick up on that! Keep those little antennae in mind when you talk!

That’s all the advice I have for now and that’s as far as our own conversation has gone, so I’ll leave it here.

Tell me: any other kid-sized nuggets you would add?

 

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Meriah

is a deaf blogger, global nomad, tech-junkie, cat-lover, Trekkie, Celto-Teutonic-peasant-handed mom of 3 (one with Down syndrome and one gifted 2E).

She likes her coffee black and hot.


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8 Comments

  • Thanks for this.  my almost 5 year old often says things about her 17 month old brother that make me wonder if I should bring it up.  Like she'll say, "maybe Teddy will be a police man when he grows up."  I always feel awkward in these moments.  Do I say, "maybe but it's unlikely because he has Down Syndrome"?  I usually say something like, "who knows, what do you want to be" (redirect).  Or when she says, Teddy is going to be a big man like Daddy.  Are these opportunities to bring up Down Syndrome and how his probable short stature will result in him being much shorter than their daddy?   I don't know but I do like the idea of casually mentioning it now and then.

  • Finn spent two weeks in the NICU after his birth, so his having Down syndrome was almost an unavoidable topic with our other kids.  We were just very matter of fact about telling them, and it's remained an open topic since then.  Because of this, my kids really don't think it's a big deal, and I think it's instilled in them a sense that everyone is different, and difference is okay.

  • I love this and I totally agree.  This is how I would hope to handle the question. Of course, Cora is an only for the moment and not sure if I'll get the guts to try again, but we'll see.  I wonder how different it will be if your other kids are younger.  Like talking to Mac about it.  Probably not much.  I have a girlfriend whose 6 year old son asked his mom if his 21 month old sister (who DOES have Ds) maybe has some special needs.  It was interesting for him to observe that now so early on.

  • Yeah, because 4 year olds *all* understand the easy concept of chromosomes!  LOL  (just kidding…)  Love this post.  In a way, it applies to our conversations with Samantha about her having Down syndrome herself.  I've been working on it for a while, easing it into my talks with her.  She doesn't necessarily understand, or at least she isn't letting on that she understands, but I suspect she may understand more than I know.  Good stuff.  Thanks, Meriah!

  • Manolo has a 7 year old step brother and he usually comes to Florida for summer vacation. Last year after his first day of camp he came home saying: "there is a girl with Down Syndrome in my summer camp" I asked him how did he knew this girl had Ds? and he said "because she looked cute just like Manolo"

  • Thank you for posting! Figuring out what to tell my 7 year old daughter has been a challenge, but she brings a lot of humor and grace to the situation. She loves her brother so much I hope it will open her eyes to the value of all “kinds” of people like loving him has opened mine.

    I struggle with hearing some of those comments too, like a radiologist covering up my son’s lap during x-rays to “protect his future kids” and my friends saying “Wait until he can drive.” I know I should use those as teachable moments but I am not sure I would be as gentle as I intend to be in my replies.

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