As a special needs parent I’ve come to realize a great many things about people (that includes friends, family, neighbors, and those I don’t know well) and to be honest, not all of these realizations have been pleasant.
Luckily the unpleasant realizations have been few and far between. For example, we have found out that there were people in our lives that we thought were friends but ultimately couldn’t handle the idea of being friends with a family that had a special needs kid. For the life of me, I can’t understand why, but at the end of the day, in my mind, no real loss there.
But the biggest realization comes from people just not knowing how to react/respond when they find out we have a special needs child. When our families found out that Gavin was officially diagnosed with CP there was some shock. There were (and still are) A LOT of questions – in all honesty more than we were ready or able to answer at the time. We were overwhelmed and unsure of the road ahead of us and doctors couldn’t give us anything more than “we have to wait and see what he does.” But there was an outpouring of love and support so we continued on our way.
When friends and co-workers found out – the vast majority found out through a blog post I’d sent around on Facebook, there really weren’t many questions as I recall. I retold our story of what we’d been through (here it is if you’d like to read it) – unfortunately, much more than just labor and delivery. Part of it was to share what we’d gone through so people would understand why Gavin wasn’t reaching his milestones like Spencer was, but part of it was to possibly help someone else who might be going through something similar. There was tremendous support – I remember being very humbled by the show of support. People were (and are) just “there” if we wanted/needed to talk.
And then there are those folks that don’t fall into either category above – because we just met and so don’t have the “history” with us to know our story. When they find out that our twins are actually identical and why Gavin is in a different looking stroller, they seem to want to be supportive but just don’t know how. It can be hard NOT knowing what to say but I’m going to share a little secret: it’s ok to say that! (FYI you’ll find this approach works in other difficult situations.)
For me personally, saying “I’m sorry” doesn’t work. I understand the reasons why someone might want to say it – either they don’t know what to say or truly are sorry, but the reality is there’s nothing to be sorry about. It’s no one’s fault that Gavin has CP (although I debate that internally all the time – and no it’s not what you’d expect.) And to be honest, I love the happy little man that he is and know that he has so much yet to offer.
Saying “I don’t know what to say” really IS ok. It lets me know that you’d like to say something to acknowledge what I’ve just told you and that you are likely still processing it, you don’t want to offend me by not saying something, but truly don’t know what to say. All of which is totally fine. It’s a lot to take in – and let’s be honest I’ve got a jumpstart on you with processing it all.
So if we should ever meet and we get to talking about Gavin – it’s ok to say “I don’t know what to say.” Know that you can ask me questions – most times I don’t mind a direct approach but temper your questions based on what you’re about to ask. Since we’ve likely just met, or started chatting, maybe start with “how’s things?” and then move onto what’s on your mind (note – it’s pretty hard to offend me but know that if I don’t want to talk about something, I will tell you in no uncertain terms – so it’s usually a good idea to switch topics at that point.)
If I have Gavin with me, it also doesn’t hurt to speak directly to HIM. He does understand and although he may not be able to respond the way you’d like he WILL respond, likely with one of his “light up the room, show stopping” smiles.