Friday, January 29, 2016

8 Ways to Make Parents of Children With Special Needs STOP Listening to You

Hey, educators! Doctors! Folks with an opinion on the Internet! You have so much you want to say to parents of kids with special needs -- about their parenting, about their expectations, about their insistence on putting their children in a position to annoy you -- and yet you're having a hard time getting through. What's the problem? Maybe you've taken one of the approaches here that puts our attention on hold.

1. Act like you know more about my child than I do.

Maybe you’ve got a fancy medical degree. Maybe you have decades of teaching experience. Maybe you have a diagnosis similar to my child’s. That’s groovy, and I sure want to get the benefit of your experience. But I have a PhD in my specific, unique, natured and nurtured child, in the context of our home and our family and our community and our world, and the moment you state that you know everything about my experience because of your experience — and more so, that your general experience is more important and meaningful than my specific experience — is the moment I stick cotton balls in my ears.

2. Treat third-hand information like it’s more meaningful than first-person experience.

Speaking of experience … you know that thing that your sister’s co-worker’s beautician told her about my child’s disability? That thing you’re pretty sure will solve all my problems, or show me how wrong I’ve been in what I’ve done thus far? Yeah, I don’t want to hear it. And I won’t hear it, because I will be turning up the volume on my imaginary iPod and listening to my favorite songs. La la la, I can’t hear you!

3. Use the words, “You’ve got to understand.”

You’ve got to understand, I understand more than you could possibly understand, and whether you’re using that introductory phrase to explain something to me that I already understand all too well, or you’re using it to ease into something you think I’ve somehow failed to understand despite it’s obviousness to you, please understand that I will be understanding nothing because I am setting my internal speakers to mute.

4. Give me boilerplate gobbledygook.

I might have appreciated that as superior wisdom when I was new to this parenting gig and everything was unfamiliar and scary. I might not have recognized that kind of "placate the mom" talk. You hear it often enough, though, and it begins to stick out, and seem insincere, and sometimes wrong, and certainly not engaged and personal. Whadya got for me that I couldn't get off reputable websites and out of reputable books? Whadya got that is related to the child you see right in front of you at this moment, who is anything but textbook?

5. Feel sorry for me.

Okay, if I'm asking for pity, as I may now and then, feel free to pat my back and make sympathetic noises. But if I'm not, DON'T. Insisting that I must feel pathetic and pitiable even when I'm quite clear that that's not my feeling and that's not my life means you are not listening to me, and you therefore are unlikely to be saying anything I want or need to hear. See #8.

6. Assume that if you’ve met one parent of a child with special needs, you’ve met them all.

Because one mother believes one thing does not mean I believe the same. Because one mother makes certain mistakes does not mean I make the same ones. Because one mother does something you don't approve of doesn't mean I've done that or will do that or want to do that, or necessarily haven't or won't or don't. I'm always interested in information that can help in my specific situation, with my specific child, in my specific school or community or church or one very much like it. But talk to me like I'm someone else, and I'm tuning out.

7. Know less than me about something you’re supposed to be an expert in.

Educators, if you act like you've never heard of, say, differentiated instruction, that's a problem. Doctor, if you're giving me information I know from reputable sources is outdated thinking, why am I paying you? Just because I want us to work as a collaborative team on behalf of my child and value my opinion and experience doesn't mean I don't want you to pull your expert weight. If I know more than you, why do I need to listen to you again?

8. Stop listening to me.

Talk at me, talk down to me, talk over my head, talk behind my back, talk when I'm talking, and generally display a lack of belief that I could have a single thing to say that you want to hear, and you'll prove to me that you don't have a single thing to say that I want to hear. Because what you're telling me has to apply to what I'm living and seeing and knowing and feeling, the circumstances of my specific self and family and child and home, and how're you going to know that? Telepathy?

Tuesday, January 12, 2016

When Honoring Children With Special Needs, Actions Speak Louder Than Facebook Posts

[I originally wrote this in February 2014 for my site, but since it's no longer available there and I still feel this way every time I see this message creep onto my Facebook feed, I thought I'd share it here in case you do too.]

Lately I've been seeing a graphic on Facebook, one of those "Let's see if you're a good enough person to share this" jobs, that's about children with special needs. Maybe you've seen it too. I refuse to re-post this sort of thing on Facebook because of a deep-seated resistance to chain letters and their ilk, but I'll share the text here to defend the quality of my heart:
Now, the friends whose walls I've seen this on are kind people, are strong-hearted, are parents of kids with special needs themselves in some cases, and mean nothing but good by posting this. I get that. Certainly any show of goodwill is to be appreciated in an online world where commenters are more likely to wish our kids dead than wish them well.

And yet ... boy, you know, it's not enough, is it? I can't help but feel that it lets people off the hook in a way that I can't accept.

You want to honor all children with special needs? You want to show acceptance? Don't post those words on Facebook. Post them on your heart. Post them on your soul. Post them on your conscience. Post them on your reaction to a kid behaving inappropriately in a public place, or to a request to keep peanuts out of a public place for the safety of a child, or to an attempt at inclusion that maybe changes the way you're comfortable doing things.

Post those words on your language when you're tempted to use the R-word. Post them from your car when you bypass a handicapped space. Post them on your children when you refuse to be a bully on their behalf. Post them every time you're called upon to do something much more challenging and inconvenient and ambiguous to honor a child with special needs than just hitting a share button.

That's what makes your heart strong.

Next time that meme makes its way through your social media accounts, how about sharing this one instead?: