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?"