What *TO* say to special needs parents

WhatToSay

Now, I don’t tend to be very easily offended when people extend their well-wishes or help to my family, even if they do it all wrong. But there are a few word choices that make me feel weary, so I’d like to be quite a bit more specific (and hopefully more practically applicable) than I’ve been in the past on this matter.

But before I start in on it, I want you to know this one thing, and please take it to heart: it’s important to me to do this much differently than what I commonly see. Whenever I see lists written on “what not to say,” I can’t help but picture someone digging through people’s empathy tool belts and chucking all their tools in a pond, calling them stupid and damaging, and then walking away. No. That doesn’t help anyone.

See, I find that when trying to make friends, it’s best not to start out by calling everyone a-holes.

So look. As you proceed, know this is a safe space. It’s okay to have tools in your belt that aren’t quite right. I’m glad you have what you have, but if you’re interested, I’m going to offer you a few new ones to add that might work better and feel lighter in your hand.

So. Let’s have a look at that staple gun.

#1: Inclusion

I see what you’re trying to do, and that intention is exactly right. Because I do. I do feel isolated a lot of the time, and it’s agony. Most people, however, hang on one of two ends of this sentiment. You’ve got:

“Oh, sweetie, don’t worry about that, though. All the kids do that.”

or, on the other end of things,

“There’s no way I’d be able to do what you do. You are so strong.”

One makes our problems not real. The other just half-accepts our isolation, but holds us up in it–like we deserve special rock star classification. And it’s not so bad to be isolated if you’re at least better than everyone else, right?

I mean, hey thanks. But it claims we must have special abilities that make us suited for our hardships, and if you follow that logic, what you arrive at is that these hardships are not as hard for us as they would be for you. Ouch.

So, here’s something to try that hopefully finds a middle ground.

“Can you explain something to me? Habit X that you just explained about your child–that sounds a lot like something my child would do, and actually, a lot like most kids would do. How does autism make that experience different for your family?”

You might think it looks confrontational, but it isn’t. We want you to do this! It asks for clarity, and in doing so, you seek to understand your friend and their child. And when you do that, you enter into that struggle with them. Nothing better than that.

Or try

“I don’t know if I would have thought of that response. Brilliant! How did you come up with it?”

Likely, we’ve learned it through a teacher or a therapist or in a book or through years of trial and error. But we didn’t shoot from the hip one day and, hey, cool, that worked. This type of question places us as equals. Fellow humans. Plus, it offers a realistic compliment rather than the “you must be deity” rhetoric.

Or if all else fails,

“Sweet Steve Jobs, what are you doing to cope with this?!”

It’s important that you word it like this, and not with the very close, “How are you not screaming/crying/freaking out all the time?” By asking specifically *what* they’re doing to keep their head above water, it’s not a rhetorical question, and it expresses actual interest in their mental health. It validates their need for a little extra help along the way (because trust me, we’re over here sometimes feeling guilty over needing what we need).

And it places you in a position to offer practical help within the natural context of conversation.

#2: Assurance

We want to ease our friends’ sufferings and worries. I genuinely think that’s a good thing, a nurturing thing. But if you’re using

“God won’t give you more than you can handle.”

I’m going to offer you something better. Because, contrary to popular belief, this quote isn’t anywhere in the Bible.

Here’s the section we’re thinking of:

No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.

1 Corinthians 10:13

We’re not even talking about trials in life. The topic here is temptation. And how we have no claim on the “It was too strong a temptation and it just ran me over” excuse. In even the most suffocating temptations, we always have an escape route.

But as to hardships, I would contend, actually, that God routinely gives us more hardship than we can handle. And then He proceeds to carry us through the ugly process that makes us the sort of people who can handle it.

So, if you’re going to provide us with Scripture, go with one like this:

 But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us. We are afflicted in every way, but not crushed; perplexed, but not driven to despair; persecuted, but not forsaken; struck down, but not destroyed

2 Corinthians 4:7-9

What I love about this is that it acknowledges what we already feel: we are all very, very delicate, smash-able beings.

And while we are not promised an easy time of it, he draws a marked difference between:

Afflicted and crushed

Perplexed and despairing

Persecuted and forsaken

Struck down and destroyed

He doesn’t say we’re not allowed to be afflicted, perplexed, persecuted, or struck down. He says, in fact, that we *are* those things. Afflicted, perplexed, persecuted, and struck down are all perfectly Christian experiences. 

But the hope we have is that we have a safe haven, protected from the complete destruction of our souls. We can choose to hide in it, or not.

And that is something that’s super comforting.

#3: Empathy

This one’s tricky, because here, context is everything.

Sometimes

“I’m so sorry” is exactly the right thing to say.

But here’s where it’s not the best:

Me: Oh, haha. He heard you, but he probably won’t answer. He has autism.

Friend: Omg, I’m so sorry.

Better used:

Me: He’s been having a hard time with meltdowns lately, and we’re struggling so hard to figure out what’s bothering him.

Friend: Oh, I’m so sorry.

The difference: The first one sees the whole autistic brain as a tragedy worth expressing sympathy over. The other isolates the suffering involved, and expresses sympathy specifically for the part of the experience that is hardship.

And here’s that first scenario, take 2.

Me: Oh, haha. He heard you, but he probably won’t answer. He has autism.

Friend: Ah, ok.

Because it’s cool. I wasn’t worked up about it, and I’m glad you’re not either!

 

I’m going to stop here today. But I’d like to hear from you: what do you think? Is this helpful? Would you like for me to provide more of these? What orange word choices would you like to hear substitutes for?

Also, I’d like to hear your own versions. If you have your own blue word choices, I’d love to hear them and pass them along, too. 🙂

Christ is Risen!

 

 

 

 

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3 Comments Add yours

  1. Michelle says:

    This is great, Maura. I always get the “I don’t know how you do it” response. I, honestly, don’t mind it that much because it IS really hard, but I see that there are definitely better ways to communicate compassion than that. I hope you keep going with posts like this because they are incredibly helpful!

    Liked by 1 person

  2. mauraoprisko says:

    Thanks, Michelle. I’ll keep ’em coming! 😀

    Like

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