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.

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.

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.

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.)

Loving 'Parks and Rec'

This post is a bit off the parenting topic, except to say that any show that can hold my attention amongst all my personal chaos of family and freelancing has something pretty special going for it, and Parks and Recreation has been that sort of recreation for me, one of the few Mom Things that everybody knows to stay out of the way of. I've been thinking of putting together a list of my ten favorite episodes for the upcoming ending of the show (sob!), but since there are too many I thought I'd narrow it down by making it a Valentine's Day-inspired list of romance-related episodes. For me, that mostly means Leslie and Ben, because they're adorable and their relationship makes me happy. A few other couples, platonic and otherwise, do make it in, though. My unofficial list:

1. "Flu Season" (Season 3, Episode 3). Because this was my first episode of Parks and Rec, and the one that made me fall in love with it, and the one where Ben fell for Leslie. Amazon | Hulu
2. "Indianapolis" (Season 3, Episode 6). Because the idea that it is possible for a nice and positive person to break up with you in a way that is so nice and positive that you don't realize you're broken up with is both funny and sweet, and Leslie's litany of the times she's been broken up with is just funny. ("Skywriting isn't always positive.") Amazon | Hulu
3. "Fancy Party" (Season 3, Episode 9). Because what other sitcom would allow such a completely impromptu, un-thought-out, unnecessary wedding between two main characters, where no one was pregnant or drunk or the victim of a wacky misunderstanding, and actually go through with it? The fact that Andy and April remained crazy about each other and crazy in general for the rest of the series is awesomesauce. Amazon | Hulu
4. "I’m Leslie Knope" (Season 4, Episode 1). Because even when they're breaking up, Leslie and Ben are adorable. Love that the box Ben uses when he reveals he knows that they have to break up (to keep from torpedo-ing her City Council bid, since he's technically her boss and their dating is against the rules) ends up having a recurring role in their romance. Amazon | Hulu
5. "End of the World" (Season 4, Episode 6). Because of Leslie's scene with Ron, where she confesses that if the world was really ending, she'd want to be with Ben, and Ron points out that unfortunately, it's really not; and because of the very sweet friendship moments underlying all the bluster and buffoonery of Tom and Jean-Ralphio's End of the World (and the money) party. Amazon | Hulu
6. "The Treaty" (Season 4, Episode 7). Because Leslie and Ben's attempt to just be friends runs so hilariously amok into global war, and oh, c'mon, you crazy kids, just get back together. And because it's the middle of a perfect trio of episodes making just that happen. Amazon | Hulu
7. "Smallest Park" (Season 4, Episode 8). Because after it's clear that not only can't they be exes and friends, they can't even be co-workers, Leslie finally respectfully asks if Ben would be willing to say "screw it," resume their romance, and accept the consequences. (Spoiler: He would.) Amazon | Hulu
8. "The Trial of Leslie Knope" (Season 4, Episode 9). Because of the ending, with the nerdiest but most perfect declarations of love that completely fit these two. Amazon | Hulu
9. "Halloween Surprise" (Season 5, Episode 5). Because when you get a surprise marriage proposal, it's not at all unreasonable to request a few moments because you "need to remember every little thing about how perfect my life is right now." Amazon | Hulu
10. "Leslie and Ben" (Season 5, Episode 14). Because although this was a much more traditional wedding episode than "Fancy Party," with all sorts of obstacles and hijinks, the ceremony was beautiful and sweet and perfect. Parks and Rec, I love you and I like you. Amazon | Hulu

You can hear me discuss these episodes and more Valentine's themed entertainment on this week's Parenting Roundabout: Round 2 podcast. [UPDATE 2/14/16: And for more Parks and Rec goodness, join Catherine and I for our current Round 2 Parks and Recreation marathon.]

How 'Cougar Town' Restored My Faith in Comedy

As the parent of a young adult with Fetal Alcohol Syndrome, I'll admit, I can be pretty humorless about the topic of alcohol use during pregnancy. I have no patience for anyone who wants to split hairs. This is a 100 percent preventable birth defect. We know exactly how to avoid it. News reports about how maybe this much is okay, maybe that much is okay, just make steam come out of my ears. You might be able to smash your baby's head against the wall a few times before causing permanent brain damage too, but why in the world would you?

Still, our society and our entertainment is pretty heavily invested in the idea that abstaining from drink is a fate worse than death. That's certainly the worldview of Cougar Town, a show that revolves around a group of friends in a Florida cul-de-sac whose most common communal pastime is polishing off bottles of wine. Jokes have revolved around the size of the container Courteney Cox's character uses as a wineglass. Funny jokes. I love the show, despite the fact that I gave up alcohol not too long after adopting my son when it became tough to relax and enjoy a substance that broke my kid's brain. (It's not like I was ever much of a drinker anyway. The line between feeling good and feeling sick was always pretty thin. No way could I keep up with the cul-de-sac crew.)

Cougar Town is one of those rare good-natured comedies — like Parks and Recreation — that just leaves me feeling happy, like I've spent some good time with fun friends. But I'll admit, I was worried when at the end of last season, one of the wine-swilling characters turned out to be pregnant. I wasn't looking for the show to turn into a crusade against drinking during pregnancy or anything; it's not that kind of show, and shouldn't be. But these are characters one might reasonably expect to be among the hair-splitters on the topic of fetal alcohol exposure. If the season resumed with Laurie explaining how she had determined how many glasses of wine she could safely swig, or grandma-to-be Jules laughing about how she drank when she was pregnant and her son turned out OK, I'd never be able to watch the show again, or with the same pleasure. And I would miss it.

So huge thanks and kudos to the Cougar Town writers for, in the usual amiable way of the show, just ambling right around the issue. The season picked up with Laurie late in pregnancy and lamenting her inability to drink. Her friends tried abstaining with her and were unable to, but there was no suggestion that she should join in (or preaching that she shouldn't). In the second episode, she had the baby, keeping this from being a season-long concern. Maybe I should worry about whether she's going to drink while breast-feeding, but you know what? I'm going to let that slide.

I'm just going to be happy that, at a time when those with serious concerns about special needs are regularly admonished not to hold comedy to any standards at all, Cougar Town has shown that you can avoid issue-baiting and still be funny. Turns out it's not that hard to avoid pissing people off.

[I also talked about this on the Parenting Roundabout Podcast: Round 2 this week, along with Snowpocalypse, the Super Bowl, Oscar scheduling, and books I may or may not have read. Listen in, and subscribe on iTunes for weekly episodes on parenting and entertainment.]

Brain Damage Does Not Make for Fun Link Bait. No. It Does Not.

Well, I made myself a New Year's Resolution this year that I wouldn't let myself get all furious and grumbly and foot-stomping about stuff I read on the Internet, and I was doing pretty well until this afternoon, when I came upon this on my Google+ feed:

And that's when the top of my head blew off. Steam out of the ears. It's hard to imagine a post so thoroughly designed to turn my outrage knob to 11. I shared it and added this comment:

OMG, are they kidding me? Is it April Fool's Day already? Drink alcohol during pregnancy to guarantee yourself a well-behaved kid? I think those of us raising kiddos with fetal alcohol spectrum disorder would beg to differ. This is an incredibly irresponsible way to report on a "study" that basically involved asking moms if their kids are well-behaved. Based on that, you feel comfortable saying "Attention Pregnant Women. Want well behaved kids? Maybe you should pick up that bottle of wine," CBS Atlanta? Shame on you!

and took a bunch of deep breaths, but ... GAH! Bad enough the study was done, bad enough it's reported on misleadingly, bad enough the headline completely misrepresents, but whoever is responsible for the message that accompanied it on Google+ needs some serious education on FASD and what it means and why it's really really really not OK to turn this into a flip little "Hey moms!" link-bait come-on.

Games for My Friend, the King of New Jersey

These links to games on the Internet are listed here for V.M., but anyone else who wants to follow them to somewhere fun is welcome to.

• Dance Mat Typing
• JacksonPollock.org (move mouse to splash paint, click to change color, refresh page for new)
• Ken's Virtual DrumKit (move mouse around the drums to make them play)
• PBSKids
• Math Cats
• SeussVille
• Thisissand (click or double-click to drop sand, click lines in top left corner for instructions)
• Tonematrix (click squares to make a melody, refresh page to try again)

The Truth, and Nothing But the ... Wait, What?: I'm having my head spun around this week by a couple of kids with fetal alcohol syndrome and the sort of fluid relationship they have with the truth. One I've caught in a relatively harmless lie, but it puts into question whether any of the stories she's told are real. (Many I would be happy to find out are not.) The other changes stories so quickly when challenged that it's impossible to know how to follow up -- I've sent him with instructions before to make something right only to find out there was never anything wrong. A fun thing about the "crazy lying" kids with FASD do is that, while their peers might lie to get themselves out of trouble for which they're responsible, these kids lie in a way that gets them into trouble they had nothing to do with, so it's impossible to know the right reaction. If I could be sure there was one cold hard truth I could get to with questioning, that would be great, but that particular ice cube has melted, and the kid holding it in his hand doesn't even remember what shape it used to have.

Blue-Light Special: I've definitely been reading too much give and take this month about Autism Awareness vs. Autism Acceptance, blue lights as awareness-raising vs. blue lights as a small ridiculous gesture, because when I saw the Disability Scoop headline Neighbors Clash Over Blue Light Supporting Autism this morning, I automatically thought it was an ideological clash between two families of children with autism who approached advocacy differently. But no, it was just a nitpicky neighbor thinking a blue light on the garage looked tacky. Maybe I need to lay off with the special-needs-news reading for a while.

Parenting Fail: Having one of those depressed days where I'm unsure whether I'm making the right choices for one of my kids, and wishing that the line between pushing too hard and not pushing hard enough was painted in neon and had flashing lights and arrows so you could find the dang thing. Especially for kids with FASD, it's just so hard to know whether apparent potential is real, and a worthwhile goal, or just a mirage to pursue at everyone's peril. Sigh. Tomorrow is another day, and fall is another semester.

You Almost Have to Admire the Creativity: Earlier this week I wrote about spam on the Readers Respond forms on my About.com site, which appeared to be responses stolen from other spots on the Web and spam-botted around to new destinations. I'm getting a lot of spam blog comments, too, but those are different -- where the Readers Respond spam tries to sneak in looking like a legitimate entry, comment spam goes with flat-out flattery. Sad that the some of the nicest feedback I get on my work in a given week are these "Wow you are so brilliant why isn't everybody coming here and reading this" comments that just sort of sneak in the link for weight loss or Gucci bags or Viagra as if it was a small price to pay for such extravagant praise. Does this really work? Do bloggers not notice that that ten comments in a row on what a nice layout they have are bogus? Do they take at face value the requests to chat about how to combat spam by comments that are spam? Are they just so happy to get comments that aren't mean and nasty and fight-picking that they go ahead and let the false flattery stand? It's tempting.

The Benefit of the Doubt: Walking around my kids' college campus, it occurs to me that one seldom-praised advantage of modern technology for young people with developmental differences is the ability to talk on the phone through a low-profile earpiece. Not because kids like my son are doing that, but because now, if you walk around public places talking to yourself or your invisible friends in an animated fashion, there's at least a chance that you're having a legitimate chat with someone through a device not easily visible. That's a comfort to a parent, you know?

Thank You for Sharing: I've been getting an extraordinary amount of spam these days on the Readers Respond pages on my About.com site. These always appear to be entries legitimately made somewhere else and then picked up by a spam bot and tossed into other spaces just to see what sticks. It's kind of a weird sort of plagiarism -- apparently, any comment you leave anywhere might turn up anywhere else that no one's monitoring for spam. Sometimes they sort of fit the topic, more often they don't, always they have some telltale collection of alphabet letters in the "name" box so it's clearly not submitted by an actual human this time around, and generally I can plug the responses into Google and find those exact words in multiple spots on the Web. I kind of like spam better when it's a list of handbags of something that makes its intentions plain. Either way, though, it gets cut.

Too Close to the Tree: It's always interesting to see the nature and nurture of things with adopted kids, which aspects of their personalities you would swear were by genetic connection to yourself if you didn't know better. My daughter has "inherited" the same anxiety and obsessive worry that I got by blood from my own mother, and my son has clearly picked up the procrastination strain from my DNA even though he has none of the stuff. I'm in a position of telling her "don't worry" and telling him "just do it!" when my own personal ears are deaf to those words. Hypocritical much? Do as I say, youngsters.

(Speaking of distance from the tree: I requested a review copy of the interesting-sounding Far from the Tree, which looks at families of children with special needs and how they deal with their differences, to write about for my About.com site, and ... OMG, it's 976 pages and three pounds of book. If your book is going to be that big, you better be Stanley Greenspan telling me how to work with my child in very concrete and life-saving ways. Otherwise, for goodness sake, edit! I have this tome looming me over my workspace now, and I can't even imagine the kind of opening up of time that would need to occur for me to be able to sit down and give it a serious read. Maybe when my kids are out of college.)

Mama Bear Is Happy: Update on my question from yesterday -- Mama Bear did indeed blow her top around midafternoon, precipitating an e-mail to the professor, who replied this morning with the most excellent news that my son passed his test and class. I'll be leading Mama Bear back into her cave now and encouraging her to hibernate again. She's pretty excitable, though.

College Self-Advocacy Etiquette Question: My son was given the opportunity to retake a final exam, in the college testing center, to try to pass it and with it the class. He did so last Thursday, a week ago today. His professor, to whom we are grateful for this chance, said he'd grade it and let him know by Tuesday how he did. Two days ago. No word. How soon is it okay to write a polite e-mail reminding/nagging the professor that this student is waiting to know his fate? Too soon, and I'd worry about ticking the prof off before he's graded the thing. Too late, and I'd worry he forgot all about it and the chance to pass the class would drift by. On the one hand, things will certainly resolve, and there's probably no real harm in waiting, and no basis to my worries. On the other hand, the suspense is freakin' killing us. What would you advise? I'm holding the Mama Bear aggressive advocacy impulses down for now, but pretty soon she's gonna blow.

Did Mama Bear roar? Read the follow-up post.

Might Be Handy for IEP Meetings, Though: Last night, a link on the top of my gmail -- one of those advertising links that I usually ignore, but this time, could it really be what I think it is? -- led me to a website selling, God help us, bulletproof backpacks for kids. The idea, as explained in the sell copy, was that when your child starts hearing gunfire at school, he can grab the backpack and use it as a shield as he flees the building. Now, how that's supposed to work when most schools make kids keep their packs in their cubbies or lockers is not explained. I guess if you're going to send your child to school with an armor-plated bookbag, you'd get a dispensation from the administration to keep it near his desk at all times, so he can provide cover for his classmates as well. The backpack sells for $300, and it made me wonder how much it would cost to get, say, a child-sized bulletproof vest. You'd get a weighted vest for your child's proprioceptive needs and the illusion of protection, all in one.

Does It Come With a Free Professor to Explain It All?: It's time at our house for the semi-annual Buying of College Textbooks and Whining About the Cost. On the one hand, I kind of love the idea of getting our own copies of books without having to fight a school district for them, but at the same time, why on earth do they have to cost so much? One of my daughter's books, as I tweeted in amazement last night, was $223 for a new paperback. A hefty paperback, to be sure, with many valuable doorstop-like qualities, but a paperback nonetheless. In my day, boys and girls, overpriced college textbooks were hardcover! They'd break your back there in your bookbag, but you knew you were getting your money's worth! And even then, I don't think they were $223. Of course, I was in college so long ago that humans were still using shiny rocks for money, so who knows.

Fortunately, there are many options now for textbooks that in some ways reduce the cost. For the $223 tome, we also had a choice of buying used, renting new, or renting used. We went with the last, cheapest option, and will pay ninety-some dollars for the privilege of giving a dog-eared scribbled-on copy a home for four months. I still wonder, though, at the high prices. Is it just what the market will bear? Is there some extraordinary expense involved in creating textbooks? Do college bookstores mark them up hugely to pay the salary of the person who stands at the front door and makes you leave your purse in a cubbyhole? I know I could order from Amazon or other cheaper online sellers, but most of my kids' books have some sort of specific content for the college, so clearly they're onto that ploy. I just feel like we should get some sort of premium with our purchase -- an iPod, or a tutor.

The Lines We Draw: It's human nature, I think, to draw distinctions that keep us on the safe side of a situation. We look desperately for things that the unfortunate did differently so we can feel assured that their fate won't befall us. We try to keep our families safe by separating them from those we deem unsafe. We judge others to avoid having to judge ourselves.

Parents of kids with special needs sure know the feeling of being on the wrong sides of other people's lines. You can see that imagined boundary every time someone denies your child inclusion, every time judging eyes fall on you in church or the library or a restaurant, even those times when someone tells you what a superlative specimen of parenting you are or how worthy you are of blessings. In all these scenarios, it is clear that there is an us and a them, and you are not the us. And even if you consider the us-es a bunch of stuck-up entitled losers, it hurts to be a them.

You'd think we'd find some solidarity with other special-needs parents, our partners in them-ness. And yet ... human nature, it is hard to overcome. Because even within our fellowship of outcasts, we still draw lines. I see the lines forming every time someone whose child has issues takes pains to point out that this kid is bright (not, you know, like those kid with intellectual disabilities, God bless them).  I saw the line running through my son's first-grade self-contained special-education class when one mother huffed at me that her son didn't belong in a classroom with my son. There was an us there, but my boy and I were not on that side of the line. I saw the line running through the posts of the e-mail support group for parents of kids adopted from Russia that I belonged to in my early days of raising my kids -- between the parents of kids with medical problems and the parents of kids with mental-health problems, or the parents of kids with mild behavioral problems and the parents of kids with severe behavioral problems. The judgment was quick and the claiming of malicious intent was quicker. Even within a special-needs community, we get out our pieces of chalk and draw our lines between those who understand and those who will not get it, or those who have real problems and those who only think they do, or those who know how to parent and those who are creating their children's problems -- every line empowering to some and alienating to others.

I thought about this line-drawing again when reading the responses from members of the autism community regarding allegations that the Sandy Hook shooter had Asperger syndrome. On the one hand, the response was an eloquent refutation of society's tendency to draw lines -- well, he had Asperger syndrome, he's not like us, all those people with autism are dangerous. On the other hand, it struck me how many of those responses took pains to point out that "autism is not a mental illness." Which is ... drawing a line, no? Saying, if unintentionally, "Don't group us with them." Surely it's no more okay to group all people with mental illness into a "might shoot you, they're crazy!" pile, but many of those who wrote about this issue were careful to make it specifically about autism, because that's their side of the line. Can you really blame people for drawing lines when you're busily drawing your own?

Perhaps a resolution to consider for 2013 is to pick a disability issue on the other side of a line from you to champion. Rebut nasty comments about kids with food allergies even if that's not your child's thing. Tell people to stop using the R-word even if your child doesn't have an intellectual disability. Advocate for inclusion for kids with different special needs than yours. If we can't blur those lines between us, we're never going to be able to get the folks who see us as one big them to do it.