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.