Dear Mouse: We Had The Talk
Posted: July 24, 2013 Filed under: Dear Mouse, kids, parenting | Tags: acceptance, Down syndrome, Parenting, siblings, Trisomy 21 32 CommentsDear Mouse,
We had the talk. No, not the race talk. Not the sex talk. We had the your-brother-has-Down-syndrome talk.
You see, we never sat you and your sister down to talk about LP’s Down syndrome. For one, Chipmunk is too young for any of that discussion. At a little over two years old, she’s mainly concerned about that extra deep booger and when her next snack fix is coming. No one knows this more than you, sweetie. I know you guys trade boogers. Please stop, it is ultra-gross.
More importantly, we figured that sitting you down to “deliver the news” would likely make a big deal out of something that isn’t. Remember this: Sitting someone down to tell them that nothing is wrong is a sure-fire way to say there is something terribly wrong. We just couldn’t see that conversation going well at all. If you’d been older, we would have had the sit down talk. You’re only four. Seemed a little much.
We haven’t been hiding anything from you, though. Strangely, while your father and I were having discussions about chromosomes, disability, inclusion, and medical updates over dinner, you didn’t seem to give a flying hoot. This is very contrary to your usual nature. Meaning, you’re usually pretty damn inquisitive.
So we’ve been going along for the last few months, figuring you’d ask when you needed to know. Yesterday we were discussing our coming calendar of events. One of our errands was going to our local Down syndrome group. I wasn’t surprised when you finally asked, “What’s Down syndrome?”
Well, you know how Daddy has blue eyes, and Mommy has brown eyes? Daddy is tall and Mommy isn’t? Well, your brother has Down syndrome. It’s just one thing about him. I did not tell you that he is different, because he isn’t. He is just as much a sibling in this family as you. He is not different. He is your brother.
I did tell you that he’d do a few things later than other kiddos. He might crawl, walk, or talk later. He might learn a lot more sign language than you ever did. There’s more, but that would have entailed an impromptu genetics lesson, discussion about social justice, disability rights, and the like. Later. Don’t worry.
So your response?
“My friend Ayzumi has Down syndrome.”
(Ayzumi has been Mouse’s imaginary friend for going on two years now. Ayzumi has been orphaned, had babies, miraculously changed ages, lost pets to death, gone to college, and comes over to our house regularly for birthday parties. Like, once a week; the girl is in an alternate space-time continuum. Ayzumi has lived a very rich, varied life.)
So that’s it, huh? Figured as much. You see, Mouse, I’m pretty sure that you are wiser than I am. Given how talkative and nosy curious you are, the fact that you had no further questions speaks volumes. There was just nothing else to know. Rock on, little mama. You’ve got your head in the right place.
Love,
Your Mother
Kimchi Latkes 
As I understand it, Ayzumi currently lives in China (having moved there from Berkeley and Korea), and is the world’s reigning Prima Ballerina. Love you Mouse.
I did not know that she was in China, thanks for the update, husband. Although, that begs the question, how will she get to our house tomorrow morning in time for her weekly birthday party?
Mouse is fabulous. Kids are so much better at this than we adults are. Love!
They are better at it. They really are.
Profound wisdom resides in the little Mouse.
I hope she hangs onto it as she grows up. <3
Loved this. Simple and to the point. I myself have tried to figure out a way to tell my four year old what Down Syndrome is without confusing her.
Thank you! It is hard, right? So much yet so little understanding.
Oh my god, The folks at this lovely donut shop are kind enough to whisper but not point as I just burst into tears over my screen.
I read weird, and so my mind pretty much took in the sentences :
“My friend Ayzumi has Down syndrome.” & (Ayzumi has been Mouse’s imaginary friend…
in one take.
and now I have tears in my coffee and my keyboard for reasons I can not possible articulate, or would ever want to. It just wouldn’t do justice to your beautiful family.
Thank you again for sharing with us.
Oh, no! I’m glad you liked it. Hugs!
This is great. We’ve done the same things with our kids. Our DS daughter is our oldest child though so it’s a bit different. Her siblings know that they have to help her with certain things but they just take it in stride. The coolest thing is that she recently joined a special needs competition cheer and dance team. After watching her compete numerous times, my younger two want to do dance competitions too so they can compete. I love to watch how she inspires and motivates them.
So cool to hear about the cheer and dance team! What a fun opportunity for community and sports. I really love how siblings learn from each other, no matter who they are, what their ages or personalities. They kind of all have an amazing sibling symbiosis, and Ds doesn’t make it any different, does it?
I love this. And I love her imaginary friend!
For a long time after our younger kids learned that Finn has Down syndrome (and the way we told them happened very much like what you describe), they saw Down syndrome everywhere. They would point to kids in the store and say, “Mom, that boy has Down syndrome like Finn,” or they would come home from school and tell me about kids who they insisted had Down syndrome, but who I knew didn’t. What this really told me was that my kids didn’t see anything different about Finn. If he had this thing called Down syndrome, then maybe everyone had it.
“If he had this thing called Down syndrome, then maybe everyone had it.”
I’m totally waiting for this phase to happen. And really, I kind of get it, it seems pretty reasonable to go down that logical path at least for a while. :)
All I can say is that for being new at this you are doing an amazing job! Truly an inspiration and I’m a 4 year pro! Haha!
Haha! Well, I guess one day we will both be really old pros, huh? I imagine that even then, we’ll just be chugging along, trying to do our best. :)
What a smart little mouse! That is just perfect, siblings are the best!
Aren’t they? I love how I see their relationships unfolding, it is an amazing part of parenting.
I want to know Ayzumi!
I’m sure Ayzumi would grace you with her presence. She is quite the jet setter!
I can’t stop cracking up about how amazing this imaginary friend is! Love it!
Gasp, Diane, she is real! I once suggested that she might be imaginary and I got the DEATH GLARE. Ayzumi is real. Ayzumi is real. Ayzumi is real.
I waited about six months after Russell was born before I told my kids he had Ds. I wanted to make sure when I told them that I wasn’t emotional about it. I also wanted for them to just love him and not feel like they needed to worry about him. And when I did tell them I explained it much the way you did, that he would just take a little longer to do things, that’s all.
You handled the conversation with Mouse beautifully. And who knew she already had a friend with Down syndrome ;) lol
I know, small world, right?
What a wise little one! Amazing girl.
I quite like her. She’ll do. ;)
Beautiful story. We made the mistake of telling our 4 year old about his brother’s Down syndrome when the baby was still in the NICU–it took him a long time to separate Ds from the sickness that kept his brother in the hospital.
This is something I’d not considered with a NICU stay. Definitely something to consider, because even adults have a hard time separating medical issues from Ds as simply a genetic difference. Thank you for the comment!
Your experience is very much how it has gone in our house, as well. We’ve talked about it with Corin, but in the course of our daily events and in the context of how people are all different in different ways. As far as we can tell, he accepts it as a matter of course, just like he knows that Lina has blonde hair and blue eyes.
Yes, as a matter of course. Exactly. :)
We told our younger son that his older brother had Down syndrome when he was 6. He had a beautiful reaction similar to what you described. When we asked if he had noticed that at the Buddy Walk (which we attend every year) there were a lot of people who looked like James, he said, “No. I just thought they all liked to walk.” Knowing that he is able to see James and everyone else for the fullness of who he is warmed our hearts. Thank you for sharing this story.
Thank you for the comment! I love to hear others’ stories about the way their children react. Always so matter of fact and accepting, wish more were like that. :)