Saturday, February 06, 2016

Questions You'll REALLY Want to Ask at the IEP Meeting

My Parenting Roundabout colleague Amanda Morin recently published a very helpful article on Understood.org called "Questions to Ask Before and During an IEP Team Meeting," which will guide parents who are perhaps new to the IEP process or don't feel they've participated in it as fully as they should to be the best advocates they can be. Seriously, we all need more of that stuff, and Amanda and the Understood.org folks produce a lot of great tools.

However, when you've got a bunch of IEPs under your belt, you realize that the proper questions, while useful, so very very often don't get straight answers—or get you that "this is what happens when parents learn to use the Internet" eye-roll. Schools may say they want informed, educated, proactive parents (just kidding, they don't say that), but what they really want is parents who believe what they say and shut up and sign the papers.

I always had lots of questions before and during an IEP team meeting. But I'm afraid they weren't of the productive sort. Just off the top of my head, here's 20 questions you'll really want to ask:

  1. Are you #$%@ing kidding me?
  2. Am I in the wrong meeting?
  3. What happened to the team members I met with last time?
  4. Why isn't the regular-ed teacher here?
  5. Why is the substitute teacher who doesn't actually know what an IEP is here?
  6. Why do you schedule a 90-minute meeting for a time when you only have 15 minutes to spare?
  7. If you know my child better than I do, how come you don't have the right name and gender in the IEP?
  8. How many trees did you kill to put all this stuff together?
  9. Do you ever think about how what you're saying sounds to someone who loves this child?
  10. How quickly would you smack someone who said that about your kid?
  11. Can I copy-edit this IEP?
  12. In which filing cabinet do you stash all the hopes and dreams you steal from parents?
  13. Is this seriously the best office the school could find for you?
  14. Can I give a report as the behavior consultant, since you're always asking me to solve school behavior problems?
  15. Would you say that if my child was sitting right here? 
  16. Why would you say that when my child is sitting right here?
  17. Why do I know more about special-education law than you do?
  18. Why do I know more about teaching than you do?
  19. Why did you ever, ever go into this line of work?
  20. Why are you offering me a pen? I can sign using the blood from all these stab wounds.

Got more? Add them in the comments, or tweet them to me @mamatude.

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 About.com 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:
KIDS WITH SPECIAL NEEDS ARE NOT WEIRD OR ODD. THEY ONLY WANT WHAT EVERYONE ELSE WANTS...TO BE ACCEPTED. CAN I MAKE A REQUEST? IS ANYONE WILLING TO POST THIS IN HONOR OF ALL CHILDREN WHO WERE MADE IN A UNIQUE WAY? LET'S SEE WHO HAS A STRONG 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.

For those who want some ideas, or are looking for something more action-provoking to post on Facebook, consider my list of Eight Things You Can Do for Children With Special Needs. Or maybe just spread this around:




Wednesday, September 02, 2015

Munchausen Syndrome by Accident

Do we need a name for that thing where you take your child to the doctor but your child can't or won't talk and so you give the doctor all your observations and interpretations, and diagnoses and treatments get made based on that? Well, maybe not just on that, exactly; I'd like to believe that doctors make their own observations and can see things for themselves that we as laypeople might not necessarily know about. But it feels like we are describing our children and others are making decisions based solely on those descriptions.

It's empowering, sure, to be believed and accepted as an expert on your child. But it's also scary as hell.

Because unlike someone who is creating medical drama for a child out of some psychological need for attention, the parents I'm talking about -- well, me, specifically -- don't want to create drama. We'd like our kids to be healthy. We just want to take care of them, like any other parent. But when you have a kid who, say, doesn't feel pain like most kids, or doesn't have the kind of abstract understanding that comes in handy when articulating physical and mental and emotional health, or has language skills below what medical professionals expect and demand (leading those docs to turn their confused gazes onto you for clarification) ... what do you do?

You give your best guess, is what you do. You've been thinking about this stuff tons before that appointment. Maybe you try to coach your kid to say that thing you talked about in the car, and then maybe you just say it yourself. You hope you're right. You pray you're right. You wish you had a magic wand that, just for five minutes, would allow you to have a serious and detail-filled debriefing with your child so you'd know you're right.

And sometimes you decide to let it go, it's all in your head, you're being overprotective ... and you're wrong, wrong, wrong. Like the time I interpreted my son's vague complaints of a tummy-ache when he got home from school each day as more related to academic stress and girl trouble than any physical ailment, and it turned out to be an ulcer that would ultimately rupture and require emergency surgery. I beat myself up pretty good about missing those signs -- yet if I had brought him into the doctor earlier and claimed he was having stomach problems, and he'd been his usual inexpressive self, not answering questions or maybe denying that pain he'd already forgotten about, would the doctor have ordered tests or medication or surgery? Should a doctor act in that situation? Would even I be sure that I wasn't making all this up?

I recently had the uncomfortable experience of talking to professionals about a young person's deteriorating mental and emotional health, and the feeling that I was gaslighting the poor kid was overwhelming, even as I knew that things weren't right and crisis mode was appropriate and the afflicted one was incapable of coherent self-expression. I know so well from parenting kids with developmental differences how enormously open to interpretation behavior is, and how many different things it can mean, and how dangerous it is to assume that your interpretation is the right one. Yet my interpretation was being used to determine things like medication and hospitalization. How can that be? How can it be any other way?

It's a dilemma, and one that will continue until they invent one of those Star Trek thingies where you run a device over a person and it automatically tells you everything that's wrong. Meanwhile, the pressure will continue to be on us parents to make our guesses as educated as possible and make sure that it's not all, or in any small way, about us. Good luck with that.

Saturday, June 27, 2015

For When You Need a Good Cry

Had fun putting this Songs That Make Us Cry (and Songs to Cry To) playlist on YouTube in conjunction with our Parenting Roundabout podcast episode on things that make us cry. I find that country story songs are the ones that really jerk my tears — "Christmas Shoes," of course, which is the musical equivalent of a crowbar to the tear ducts, but "Don't Take the Girl" and "He Didn't Have to Be" both legitimately made me teary. I was kind of amused to see how a couple of sad songs from the old days, "Sylvia's Mother" and "Operator," are pretty obsolete because no one goes to an operator for information anymore or gets nagged by one to put in forty cents more for the next three minutes. Ah, memories.

Anyway, enjoy a listen and a weep — there are both happy and sad cry songs — and let me know in the comments what songs should be added on.

Monday, February 23, 2015

The Parenting Roundabout Oscars Live-Tweet

Or, how we managed to stay awake through five hours of gowns and golden statues. Listen to the Parenting Roundabout Podcast at parentingroundabout.com.

Saturday, February 14, 2015

The Mauro 10-Point Comfort Scale for Oscar Dresses

Over my years as a parent—and maybe particularly as the parent of kids with special needs, one of whom I regularly had to get down on the floor with as he was growing up, even at parties, even at church—I've come to value comfort and practicality in outfits over fanciness and sleekness and cleavage and slits and highness of heel. And while I appreciate that your average starlet can't exactly wear sweats to the Oscars (I'd be among those dinging her if she did), I still look at some of those super-fancy dresses and wince at how uncomfortable and potentially disastrous they will be over the hours that these women will be sitting there waiting to win, lose, or present.

In the interest, then, of rewarding those who do manage to be both comfortable and stunning, and to penalize those who have sacrificed their own comfort for a bit of red-carpet flash, I am submitting my official version of the Mauro 10-Point Comfort Scale, on which I will be rating dresses at the Oscar shebang. Join me, won't you? And add your own suggestions and specifications in the comments.

The Mauro 10-Point Comfort Scale
by Terri Mauro

Award one point for each yes answer to these questions:
  1. Cleavage: Can she sneeze or slouch without risking a wardrobe malfunction?
  2. Slit: Can she cross her legs without flashing a worldwide audience?
  3. Hemline: Can she cross her legs at all?
  4. Tightness: Can she sit for three hours without passing out or sustaining serious bruising to the midsection?
  5. Frills: Will she have direct back-and-ass seat contact without having to sit on a peplum, huge bow, or scratchy petticoat?
  6. Simplicity: Is it conceivable that she could use the restroom without having assistants along to undress and dress her?
  7. Bareness: Is her back covered enough to avoid pattern rash from a fabric-covered auditorium seat, or sweat from a leather- or plastic-covered one?
  8. Shoes: Can she walk to the stage to accept an award without risking a heel caught in a skirt or a twisted ankle?
  9. Train: Can she move freely without worrying about somebody constantly straightening out the back of her skirt (or what’s getting caught up in it)?
  10. Accessories: Do the earrings and hairstyle look like they could be worn for hours without giving her a headache?
Then subtract one point for each yes answer to these questions:
  1. Does this look like a particularly nice mother-of-the-bride dress?
  2. If that color looked that way on you, would your mother have told you not to wear it?
  3. Does it look like something she just had hanging out in her closet? Or you might have in yours?
  4. Is there a regrettable accessory? (See especially: belt)
  5. Is it just, somehow, not appropriate to the occasion? (Can range from a too-short skirt to, say, a swan costume.)