1/13/13

What to Say


I have been trying for a long time to get a picture of the boy's feet next to each other.  The size difference is amazing.  While this picture isn't the best for comparison, you can get an idea.  When I bought them new shoes the other day Buddy got a size 8 wide and Bunny got a 5.  The 5 is about 2 sizes too big for Bunny but I needed them to fit over his orthotics.

When they are sitting next to each other in their stroller they look about the same size from the waist up and then you see Buddy's long legs hanging over and Bunny's short little leggies just sticking out and you can tell their is a MAJOR size difference.   I have mentioned it before, but when I tell people that the boys are twins they usually look at me a little funny.

I had the boys at the girl's school the other day for Boogie's birthday celebration.  While I was waiting for the bell to ring another mom came up to wait for her son and she was watching me and the boys interact.  She asked me how old they were and when I just said "22 months" she look confused for a few minutes and then asked "they're twins?" and then said "Wow.  That one (pointing at Buddy) is twice the other ones size."

And this is the point in the conversation where I never know what I am supposed to say.  I think it is pretty obvious that Bunny has down syndrome.  I am not the least bit ashamed of his down syndrome but I also don't feel the need to define him by that label so unless people ask I usually don't bring it up.  I said something like "Yes he's quite a bit smaller but he probably always will be" or something along those lines.

The next day Bunny had OT and as we were waiting in the waiting room a dad came in with a little guy around Bunny's age.  The boys checked each other out and as it turned out shared a therapy room.  I *think* the little boy had down syndrome and you would think I would be able to tell but in all honesty I usually can't.  I wait to see how the baby moves because that is my best indicator.  He moved in a way that is very familiar to me and was working on things that Bunny was working on for low tone.  Had I just glanced at him on the street I wouldn't have been able to tell.

That got me thinking....I would never go up and ask the baby's dad if he had down syndrome.  I wouldn't ask a parent if their child had any kind of condition.  I feel like it's rude. 

I remember a man at my favorite health food store making a big deal over how cute Bunny was and then later asking me how his heart was.  It was like a secret code.  It was a way to let me know he knew that Bunny had down syndrome without just coming out and asking it.  Turns out he had a 22 year old son with down syndrome.

A person who doesn't know the secret codes would have no idea how to politely ask about Bunny I'm sure.  Unless I volunteer the diagnosis they probably aren't going to point blank ask me.  So now I'm wondering if I SHOULD say something when people inquire about the size difference.  Obviously not to every Joe Blow on the street but to people, like that mom, who I will probably come in contact with many times over the next few years.  I don't want to label Bunny but I do want people to know that it is not a taboo subject and that they can ask me about it.

I'm very curious to hear other moms thoughts on this.  From both sides...the asking and the telling.

6 comments:

  1. My usual policy is to only tell people with whom I will have future conversations. People ask all the time how old he is. For the last month, I've been saying almost 2 and I get lots of puzzled looks. I just smile and move on. Now and then I will tell a stranger (usually women of childbearing age) that he has Ds. 2 days before the ultrasound that revealed Ben might have Ds, a random lady at the mall told me her baby son had Ds. Our conversation made an impression on me because she was happy and her life seemed normal. Little did I know that 2 days later I would be in her shoes!! I guess a part of me hopes that I can give hope to another mom walking a similar path!

    ReplyDelete
  2. When people mention things about my son like what you said above about his size or something...I usually add something like "Kids with Ds tend to be smaller"...I just want for people to know Russell having Ds is no big deal, that I am absolutely ok talking about it and I welcome any questions. I don't think it labels our kids, people know they have Ds anyway...It just makes them feel more comfortable when they know we are open to talking about it.

    ReplyDelete
  3. And Ben's size 5 shoes are too big too:)

    ReplyDelete
  4. Thanks for your input ladies. Laura that is a crazy coincidence! And I think about that side of it too. I think I just need to formulate some standard answers like you said Jenny.

    ReplyDelete
  5. Laura - Ben looks like such a big boy in the pictures but I'm sure him and Luca are similar in size :)

    ReplyDelete
  6. I love this post- I feel so similar, it's tough, as I am a bandaid ripper, just want to say what I know people are thinking, but sometimes, when I am in line at the Gap it seems a little heavy?! :) So, I am not sure, it's what I feel like in the moment, sometimes I straight up lie, and just say he's 3 months instead of 6 months for our youngest who has a rare genetic condition and sometimes for our 2 1/2 year old with DS I say "oh he's 2 1/2 just a bit small because he has down syndrome" I figure it's not different than saying because I am 5'2, I mean it is what it is- right? Love your blog!

    ReplyDelete

I love comments! Thanks for leaving one!