How do you respond when someone asks you how your child with special needs is doing? For most parents, there’s no simple answer. Here’s what goes through my head.
Friends and family often ask me how my son Ben is doing. Whenever that happens, no matter who it is, I hesitate. You know that feeling when you try to swallow a pill and it gets stuck halfway down? That’s how I feel when someone asks about Ben.
Ben has Down syndrome, hearing impairment, autism, Hirschsprung Disease, Cyclical Vomiting Syndrome, a handful of lesser health concerns, and is a leukemia survivor. In short, Ben is a complex kid with a host of special needs.
So when anyone asks, unless it’s my husband, I don’t know what to say. Do you want to know the long story, or the Reader’s Digest Condensed version? How much have we discussed in the past and how much have you followed on his Facebook page? Do you know most of his story, or do I need to catch you up to speed? Can I trust you to bare my heart and really talk about him, or will talking to you end up leaving me feeling naked and awkward? Or are you just asking to be polite?
After my mind reviews all of the above and then some, there’s an excellent chance that in a kind of squeaky voice I’ll just say, “fine”.
That happens when I don’t know where to start. It happens when I don’t have the energy to open up and tell you what is really going on in our lives. It happens when I’m not sure you won’t say something that makes me feel small.
Unless you make it clear that you really care, that you’re on our team, and that I can trust you to listen and really care what I say, my answer will be my squeaky “fine.” Unless you hear that squeaky “fine,” and happen to notice the uncomfortable pause or the scrunched up look and my face and say, “No really, I want to know,” I might never get past “fine.
But I want to. I want to trust you. I want to talk to you. I want to get past that clumsy pause and really have a conversation. Just know that my conversation will entail therapy, special needs doctor appointments, behavior issues, and usually some type of bodily fluid cleanup. If you think you could get past all that, and really want to hear, I would love to talk to you. So if you hear me say my squeaky “fine” after that gawky pause, make sure you want to go there, and I will call you a friend.
Alethea Mshar is a Special Needs Mom and Blogger.
Read her blog, Ben’s Writing, Running Mom.
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