Lila has Down Syndrome......

And we tell her that she has Down Syndrome. We don't make a big deal of it, we just bring it up once in a while. We own videos that have kids with DS in them, so it's easy to point out. "Lila, see that cute little girl with Barney? She has Down Syndrome like you do!"

Lila also has a lot of friends with Down Syndrome and sometimes I'll include the fact that they have Down Syndrome in conversation. "Lila, we're going to play with Roxy, Josie and Baby Lena today. Roxy has Down Syndrome like you do!"

Having Down Syndrome is a part of her life. We want her to hear those words from her family first. Words said with love. I am pretty sure that at some point in Lila's life she will hear those words from someone and she won't be feeling any love from them.

In the last few days I have read 3 different stories of people who were basically freaking out because their kid was "catching on" that they have Down Syndrome. These kids range from 7-12 years old. I have to wonder if these kids "caught on" to the fact that they have Down Syndrome a while ago but are just now letting their parents in on it.

Any thoughts?




  1. I've never actually thought of a 'time' to tell Malakai he has Ds. Like you have, I just kind of thought it would come up in day-to-day life and we'd include it as we go along.
    I think you've done it in a positive way, which is definitely what we'd like to do in future with Malakai!

  2. I agree w/ your casual introduction and "no big deal" approach. After all, we're advocates, why should our kids be kept out of the loop? We wouldn't hide the fact that our kid had diabetes or some other condition. It's a part of her, just not all of her...

  3. We'll let macy know too! It's not something to be ashamed of, so why keep is HUSH HUSH?

  4. Huh, I never thought about this before. We talk about it in conversation like you do so that our other kids will get used to the idea and understand it. I hadn't thought that there would come a day when Kimani would be told, or would suddenly "get it". I just figured she would always know it because we know it and talk about it... like the same way she will know she has blue eyes and is a girl

  5. Ma,
    I had some hesitancy at first when I read this but then I realized that it is good for Lila to know, not that there is anything wrong with her, but that other people will perceive her to be different.

    Telling Lila that she's different is less for Lila and more for others. Lila needs to be told that she's special (I do not by any means that in a patronizing or condescending manner as in "special ed." but that she is a beautifully unique child crafted in the image of God) so that when she does come up against others who ostracize themselves from her by making such distinctions, she is able to know why. It's not her, it's them. It's not her loss, it's their loss. She's not missing something, they are.

    Often typical persons take it upon themselves to have compassion on those "poor little people" with special needs but really I think that it's typical people who need compassion as it isn't the perceived suffering of the special needs community that needs to be addressed but the suffering of the typical community..but I digress.

    I'm glad you're introducing Lila to her difference in a loving way, Lord knows that she would do the same for us. I do, however, hope that as she gets older she is told that part of her difference is that she will have the unique opportunity to take compassion and be tolerant of others whom don't extend the same to her. (A lesson I'm sure all advocates will continually struggle to re-learn.)

  6. this is a subject that I have not thought much about...I love your insight...I think it is important for me to get positive about this and make sure my Maddie knows that she has Down Syndrome but it does not have to define her...or limit this is a great thought for me...I need to process more...thank you for this post...this may sound not "PC" but I need to find Maddie some friends that were born enhanced! smiles

  7. Just an excellent post and comments. You know, I've skirted around this topic in my own mind.

    But when you say: "Having Down Syndrome is a part of her life. We want her to hear those words from her family first. Words said with love. I am pretty sure that at some point in Lila's life she will hear those words from someone and she won't be feeling any love from them."

    I couldn't agree more. I want the same for Gabe, too. And I want him to learn from his Dad and me. Great post!

  8. I am just starting my journey with Down Syndrome and enjoy reading your blog...I love that you tell her she has DS because if we wait for the world to tell our children, who knows what they will hear...better to hear it from those that love them.

    Kelli @

  9. I think you're going about it the right way! We have the book called Meet Annie - Annie has Ds and she tells all the way she's just like you...and one part she says "I really am just like you, except I have Ds" (or something really similar to that) but I skip the 'except' part and read it to Kayla like "I have Ds...just like you!" and tell her, you have Ds too, like Annie. and Kayla says, "Me?!" incredulously - too funny :) she's starting to say Down syndrome when we read it so I hope eventually we'll get to the understanding of what it all means and doesn't mean :)