I know it's hard to know what to say to someone whose child has a genetic disorder that results in severe cognitive disability. Before I had such a kid, I would have had no idea what to say. It would have been terribly awkward, I'm sure, and I worry that I would have been less inclined to hold the child, play with him, coo over him.
(Before I go any further, the absolute best thing you can do is listen to the mom as she rants about how everything sucks and all the family's lives are over, and in the next breath brags about how completely awesome her disabled child is. The friends who have let me blather are the best, and have saved my sanity. You know who you are.)
So I understand awkward. Really I do. But there are some things that go beyond awkward and into a different, less pleasant place. Please do not say the following:
"Everything happens for a reason." Unless the reason you have in mind is that sometimes random genetic mutations happen, keep that reason to yourself. I do not want to hear anything about how giving a child a disability makes the world somehow better.
"They're all so sweet." Really? You've met all of them? Were you that patronizing when you met them, too?
"Sometimes the doctors are wrong." Yes. This is true. However, when you have this disorder, things do not suddenly just turn out okay - which is what people who say this seem to mean. The doctors are not wrong about that.
"Miracles sometimes happen, if you pray." A cruel God, who would withhold wellness from an innocent child unless his parents implored Him properly.
"If I were you, I would be too freaked out to have another child." Dear Lord.
"With everything that people eat and drink these days, it's no wonder these things are increasing."
"Don't forget to think about your older son." Oh, that's right! I had completely forgotten about him! He must be on the ledge playing with matches again as he cries that mommy never plays with him anymore.
"Every child has special needs." I'm not sure what this one is about. I think sometimes it's that people think that parents who say their kids have special needs are thinking of autism, and thinking that autism is BS. Other times it seems to be a your-child-is-really-no-different-from-any-other. Either way, it comes off as dismissive.
"They can do so much these days." This is fine if it's a genuine discussion about therapy or what have you. But if it's a way of saying something chipper (i.e., that my kid will be just fine) to change the subject, annoying.
Sorry. Bit of a rant I had to get off my chest. Done now.
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15 hours ago
> "If I were you, I would be too freaked
ReplyDelete> out to have another child." Dear Lord.
Wow.
Most of the rest of them, I'll chalk up to random insensitivity or very unintentionally insulting (but somewhat understandable) given the awkward and most people's inability to deal... or, for the God comments, people's assumptions that your method of dealing will match theirs.
That one is the clear winner for "Seriously, I need to punch you. Please go away so that I can avoid this outcome."
Padraig, I agree with you on all counts. The others are annoying, but understandable.
ReplyDeleteLove this: "Seriously, I need to punch you. Please go away so that I can avoid this outcome."
As a pediatrician, I'd just like to endorse a few of these comments:
ReplyDelete1) The one about what people are eating and drinking these days. Few people are willing to "go there" and help parents feel their appropriate helping of shame. While we no longer see the suffering of children as divine punishment by a vengeful God toward their horrible parents (a societal change I, for one, lament), we can at least redirect that impulse toward making parents feel that their children's illnesses are fault-based.
2) All children have special needs. Except if by "special" you mean "aren't shared by the vast majority of children." In that case, by "all" they probably meant "very few."
3) Miracles do, indeed, happen every day. Except miracles where important physical structures (limbs, bits of chromosomes, etc) are missing and then grow in. Studies have shown that, statistically, those miracles happen closer to "never."
My standard rule of thumb (if I am in a situation where my own comment is called for) is: what a beautiful baby, or when they get older: what a cute kid. And after I see them a few times simply say: He looks very happy today, or he looks very serious today depending on the facial expression.
ReplyDeleteBeing a man we are raised pretty much not to hold a child, play with him, coo over him, etc. unless they are blood relatives so, in that sense, we are let off the hook.
On a slightly different note, my 20 month old still doesn't talk outside of babble (no mama or dada or any words) The end of May he is going in for a diagnosis and so, at least for him, I am hopeful there is a lot they can do. My relatives think he is smart outside of this, but he is just very outgoing and gets into everything, which is cute for a 20 month old (and bothersome, he rotated my desktop screen 90 degrees in vista just playing with the mouse which seems clever but was completely random)
I have a cousins daughter who is a little older and is the same way, which might be a coincidence or it might be genetic.
As of now no one says anything, if anyone talks to any 20 month old they will all pretty much freeze except the most outgoing so I have avoided any dumb comments strangers might make.
charo
Charo, let me know how it goes. It's good that you're getting the diagnosis soon - a speech and hearing therapist just told me that they usually like to start at 22 months.
ReplyDeleteI really appreciate this post, Elizabeth. Not because I say those horrible things, but because I sometimes go Deer in the Headlights and want to know the right thing to say. I don't want to sound pitying, I don't want to minimize, I don't want to pretend to have any answers. I mostly want to learn and support without seeming condescending or ignorant or callous or any of the terrible things the authors of the above comments seem.
ReplyDelete