When I became a parent to a child with special needs, I learned, among other things, that I had been saying the absolute wrongest things to people my entire life.
As a self-admitted awkward person, I’m terrible when it comes to extending condolences and comforting people in their times of need. Terrible. And I’ve discovered that I’m definitely not alone. Until you’ve specifically experienced something — the death of a loved one, the loss of a job, the end of an important friendship, the discovery that one’s child has special needs — you have no idea how to respond to others who have. You try your best, but when it comes down to it, you’re an outsider with zero knowledge of what it feels like to be them.
Since becoming a parent to a child with hemiparesis and hemiplegic cerebral palsy due to a stroke in utero, I now know all too well what it feels like and how certain words and phrases impact both me and other parents of children with special needs — words and phrases like, “I don’t know how you do it” and “You are so strong” and “I couldn’t handle it if I were you” and “You’re such an inspiration.”
When they first pour in, you barely notice them, these words and phrases, let alone have time to let them register. But as they continue and increase in frequency, they start to get to you. You begin to respond in your mind with things like, “How I do it is I get up and then I, you know, physically do it” and “I’m not strong, just existing” and “If put in my situation, your options would be to hide under the dirty clothes pile in your closet or do it, so chances are, you could and would do it if you had to” and “No more inspirational than the dog that licks its puppies’ butts so they can take an unobstructed dump.”
It didn’t take long for me to set these feelings that people pitied me and my child aside in favor of recognizing that what they were really saying was, “I have absolutely no idea what to say to you so I’m going to say this trite, cliche thing here but what I really mean is I support you and care for you and am interested in you and your family.” And after a while, these people could simply reply with “Hamburger!” and I’d be grateful that they took time out of their schedules to listen to what was going on with my son and family and extend me a virtual pat on the back. When it comes down to it, without these coded “I support you and care for you and am interested in you” gestures, I’d be rocking in a corner somewhere gnawing on my toenails.
Despite all this, there is one response people tend to give parents of children with special needs that I can neither tolerate nor condone, and that’s any response involving mention of God and a child with special needs at the same time. Most of these responses go something like this: “God only gives special kids to special people,” “God only gives you what you can handle,” “God has a greater plan for you and your child,” “Never question God’s purpose, for He is good,” and blah blah BLAH.
Involving God in your attempts to comfort a parent of a child with special needs is wrong on so many levels:
God and faith are such personal topics.
How do you know I believe in God at all, or at least in your God? And what makes you think I’m comfortable listening to a sermon right now? Chances are, if I believe in God, He and I are either taking a break right now or have come to an understanding, and we’re perfectly capable of working things out on our own, thank you very much.
God platitudes negate our feelings.
Saying the equivalent of, “Welp, it’s in God’s hands, not yours, and if you’d just have some faith, everything would be fine” sounds like a complete dismissal of my feelings. It’s not in God’s hands because God isn’t down here in my living room battling with my child to use his right hand or to stop toe walking or to eat this food and swallow without choking on it. I’m down here dealing with that shit, and it’s hard, OK? Really emotionally hard sometimes, and getting it off my chest is part of what helps.
Bringing God into the equation makes you sound like a used car salesman.
Saying these things sounds more like you’re trying to push your religion on me than trying to comfort me. If convincing yourself that bad shit in life is predestined and part of some greater plan works for you, great. But to assume that I also subscribe to that philosophy — or to insist I do as well — is both tacky and insulting.
Regurgitating needlepoint phrases is impersonal.
If what you’re about to say can be found stitched onto your grandmother’s throw pillows or onto the communion linens at church, I’d rather not hear anything at all. I have a bible I can consult if I’m looking for a theological explanation for my child’s situation. What I really need is someone to listen and agree that yep, that fucking sucks or to offer to get me drunk for a night or to tell me a funny joke. I need to hear something from your heart, not something from a God meme.
God isn’t that cruel.
This is the mother of all reasons not to chalk everything up to “God’s got it.” No God I can imagine would hand pick a parent or her/his child to suffer the physical, emotional, and financial pain of disability or special needs, and if He would, I want nothing to do with Him.
Not every parent of a child with special needs agrees with me, of course — for some, this works — but most I know do. And please, listen. We don’t want you to ignore us altogether for fear of saying the wrong thing. Saying the wrong thing is understandable. Chances are, we’ve said the wrong thing to you at some point. Better the wrong thing than nothing at all, right?
Except for this particular wrong thing. This is the one and only wrong thing you should never say, because this particular wrong thing cuts and scars places not capable of further damage.
When in doubt, think of this: Say what’s in your heart, not what’s on a motivational poster or in a self-help book, even if what’s in your heart is, “I don’t know what to say right now but I see you and hear you and am here for you.” We need you right now, not God.