Monday, April 11, 2011

What do I say?

As Bean gets older, his delays are more and more evident. Now, when we are around friends that have kids the same age - or even (sometimes much) younger than Bean - it is easy to see that he lags behind developmentally. It bothered me at first but I have come to terms with his disability and have accepted that he will meet milestones when he is ready.  Our friends have been very open and interested in Bean's progress and I have enjoyed having the opportunity to talk with them about Williams Syndrome (WS) and the ways that Bean is affected by this condition.

I don't consider WS, Bean's delays or his health concerns to be taboo topics and I am not at all bothered by talking about it with anyone that is interested. I believe that awareness and education are incredibly important but I have found myself in some situations where I don't really know what to say. I'm talking specifically about conversations with well-meaning strangers - typically grandmotherly-like baby-crazy women - in the grocery store, Target, Costco, etc...

Bean is an incredibly social little boy and engages in "conversations" with anyone that makes eye contact with him. He's not exactly verbal yet, so his conversations typically consist of huge smiles, giggles, clicks, tongue-rolls and raspberries. It's unbearably cute, really and not at all out of the ordinary for a baby or very young toddler. And since he's teeny-tiny for his age, he can pass for a baby or young toddler. Still, the question of his age always comes up. I am not really all that in to lying so when I answer, "19 months," I am met with a blank stare. The stranger usually responds, "but he's so small" and then starts directing actual questions at Bean expecting answers.

"Do you like cheese?"

"What is your favorite food?"

"What's your favorite toy?"

"Do you like to kick a ball?"

And so on. And so on.

I struggle with how much information to share. Is she really interested? Do I tell her about all of his food intolerances and aversions? Do I tell her that he has an array of digestive problems and a heart condition? Do I tell her that he doesn't have any words yet? And say "nope, not even 'mama' or 'dada.'" Do I tell her that he has global development delays and then explain what that means? Do I tell her that he's not running or jumping yet? Or even walking independently?  Do I tell her that he has WS, a relatively rare genetic condition? Answer her question about future children with a "possibly"? And no, another child is not at all likely to also have WS? And reiterate, "no really, that's not a concern at all"? No. No. No. No. No. No. No.

Don't get me wrong. I don't mind talking about any of these things. In most cases, though, it's just way too much information for polite conversation. Really, what I have figured out, is that these grandmothers/aunts/great aunts just want to talk about the little ones in their lives. If I pause for just a second, the well-meaning stranger will usually fill the silence with all of the wonderful things their sweet grandchild/niece/nephew is accomplishing. And I'm truly happy for them. They are not really all that interested in the answers to their questions they just want to look at the cute baby and make goo goo ga ga faces and talk about their families. And that's ok. That's human nature.

For the strangers that really do seem interested, I start with the first question. I let them know that Bean is not verbal yet and is unable to answer their questions and I then go from there. The subject of delays and disabilities can be uncomfortable for someone that has not had prior exposure though and it's a fine balance. I'm learning to better judge each encounter but more often than not, I struggle to figure out, "what do I say?"


  1. I have started to touch on that glacier sized problem when people ask "oh how many kids do you have?" or "how old are they" then it always come next "What does your 1 year old think of the baby?" or something similar. I have come to where, like you, you have to judge the situation to determine: do I tell them my baby is in the hospital and his brother doesn't get to see him often? Do I tell them he just had surgery, and no, he is not at home? It is hard. Sometimes I will take the time to explain, other times I just lie and say "he's fine! His brother loves him!" :)

  2. I've thought about this before, about friends who have children with different challenges. I can totally see how it would be hard to come up with what to say. I think, probably, that in the grand scheme of things, it probably doesn't matter what a stranger who isn't going to know you in the future understands or doesn't about your son and your life. If they walk away not understanding, it won't really impact you, since they basically disappear. You're doing a great job, though, mommy! I admire you!

  3. Much love to you Heather! I think your approach is perfect and what ever feels the most comfortable for you at any given time. I am very similar in my approach, it is so true how each encounter does get easier each time and at the same time it is still a struggle.

  4. Thanks, ladies, for your support. I know you get it. :)

  5. Oh I am right there with you. I think I have come to a point where its like whatever when they say "oh shes so small" because i dont know how many people tell me that. Its like why ask her age to comment on her size? Do I do the same to you?? And once I tell you she has WS do you than feel bad, because I dont want that.
    Ive began sharing information more, but like you its still the people on target usually the older grandmothers that want to touch and talk to her. and shes 3..... so I basically have to start a long story