How do I best explain Ds to my kids? I want them to ask questions, but don’t want them to “stare”. Is it appropriate for me to say hello to a stranger, or smile at their child, when we meet in passing in public?
I had a tough time with this question! Mainly because I know there are better answers out there for how to best explain Down syndrome to kids. My answer is still, in large part, coming from a place of inexperience. Since Jake is still so young, as are his contemporaries, they do not notice (or are too young to understand) that there are any differences at all. I am sure as Jake grows, I will refine my answer to this question, but here’s my initial stab at it!
First, the easy part!
It is totally appropriate (in my opinion) to say hello to a stranger, or smile at their child! With one proviso: that it is not a pity smile. I regularly have people smile, nod, or say hello to me when I am out with Jake. He is like a tiny little people magnet! Some people may just have a soft spot in their heart when they see him, others I’m sure are giving me a nod of understanding, as their lives have most likely been touched by someone with a disability, and still others may just appreciate the journey we are on. For me personally, I am never bothered or offended by people “reaching out” in this small way; as long as the interactions are positive and uplifting.
Second, the hard part!
I have had several opportunities to begin to explain some things to my older nephews. It seems to be an ongoing conversation with them; it’s not like I sat down once, outlined everything, and then they “got it”. It has evolved into somewhat of a fluid discussion, and is actually pretty cool.
The first time I ever talked to my oldest nephew, Elijah, about it, this is how the conversation went:
We were driving in the car, and Elijah, out of the blue, asked me why Jake’s eyes looked like his own (as a point of context, my sister is married to someone of Korean descent, so her children have very almond-shaped eyes). I then got to explain that Jake has something called Down syndrome, which is when every single cell in Jake’s body has something extra in it that most people’s cells don’t have. I said that this makes Jake really special and unique. I said that this extra “stuff” causes some differences in Jake, like his eyes looking a little different than mine, or his ears being extra small. I said that this extra “stuff” will cause Jake to always need a little extra time and a little extra help to learn how to do things. I said that Jake was super lucky to have a cousin as great as Elijah to teach him. Elijah took in all the information, said “cool”, and that was the end of that!
Since then, we have gone back to the subject whenever it comes up naturally. If Jake is having a very difficult time doing something, or if my nephews notice that other children his age are already learning how to do things that Jake cannot do yet, like speak, then we talk about it again. I remind them that because Jake has Down syndrome, he will always have a harder time learning things, and it will always take him a little bit longer. Then I remind them that we can help Jake, encourage him, and be there to teach him. I also try and tell them that Jake is also really great at some things too. He has a great sense of humor, he likes to make people laugh, he is very social, etc…
I don’t take offense when my nephews ask questions. Even if they sometimes come across the wrong way. Kids are inquisitive, and they are legitimately just trying to learn more about why things are the way they are. I welcome questions, even ones that sound rude, because to me, they are the open door to discussion, and ultimately to understanding and acceptance.
Like I said, I’m sure there are better answers out there. I’m still new at this! I’m still learning. But I think the most important piece, when talking to kids or adults alike, is to explain that the similarities outweigh the differences, and to explain the differences in such a way that it promotes inclusion, respect, and acceptance.