Wednesday, April 13, 2016
Inclusion's Chris Traeger Problem
Lately in my family's inclusion journey, I feel like we've been meeting a lot of Chris Traegers.
Like the lady at the soup kitchen where I wanted my son to volunteer, who smiled at us and nicely invited me into her office and shared how she herself had a child with special needs and talked to me for a good ten minutes before I realized that she was saying no, he couldn't volunteer there, they couldn't possibly accommodate him, and here are a bunch of other places you should try instead.
Or the supervisor who, rather than provide direction to a young person with a disability in the workplace — because that would be mean! — chose to silently judge and eventually withdraw the job and call up her mother to suggest that maybe supported employment somewhere with more supervision would be a better choice.
In both scenarios, guess who got to be Ben Wyatt, spreading the bad news that “no, you can't volunteer here” and “no, you don't have a job to go to”? To kids who couldn't imagine why that could be, because everyone was so nice to them? Thanks, Chris. Thanks a whole heck of a lot.
We may be getting to a point with inclusion where people know it's not cool to say no to it. Sadly, however, we have not yet gotten to a point where people will therefore say yes. They just keep saying no in a way that sounds like yes until you get the idea and go away. I suppose this is improvement? A little bit? Maybe? But it still sucks.
One of the things that hurts the most about this is that, like Anne Perkins still acting like a girlfriend when Chris had sweetly stopped being her boyfriend, I collaborate for just a little bit with this act of cheerful rejection. I apologize for bothering them. I tell them I understand their concerns. I feel some camaraderie. And then, all too late and too terribly, I realize I've been providing aid and comfort to the enemy.
I certainly don't want people to be openly mean to my kids, let's be clear. But at least, you know where those folks stand. Directly in your way, for sure. But maybe that's a little more merciful than the person who puts out the invisible wire to trip you and then calls 911 to help you out?
Monday, February 29, 2016
Our Parenting Roundabout Oscars 2016 Live-Tweet
Friday, February 19, 2016
Why Kids With Food Allergies Are Ground Zero for Inclusion
I'm a fan of school inclusion, truly I am, but it's hard to deny that accommodating kids with special needs in a way that is actively inclusive and not passively warehousing requires a lot of hard work, training, money (at least in the short term), and changing of the status quo. Here are some of the things a school might have to do to fully include a child with, say, intellectual or developmental disabilities:
- Train staff in co-teaching and ensure that regular and special-ed teachers are working effectively together.
- Make all areas of a school building fully accessible.
- Hire paraprofessionals who are trained to facilitate an inclusion program.
- Develop differentiated instruction plans that work for each child's level, from those working behind grade level to those working beyond it
- Reconfigure classrooms so they have a mix of students at all learning levels.
- Hire teachers trained in adaptive physical education to include students in gym class.
- Perform functional behavioral assessments of students who require behavioral support and implement behavior intervention plans that will be constantly adjusted as needed.
- Work with therapists to incorporate their sessions into regular classroom time so students do not need to be pulled out.
- Refrain from deliberately making the child sick or dead.
And yet, there is unbelievable resistance to even the small amount of effort it takes to include kids who are in all other ways indistinguishable from the general student body. You won't have to look very far on the Internet to find people who think that kids who might die if they come in contact with a PB&J should be homeschooled. But even among those who are not that exclusionary, you will find many moms and dads and teachers who, in this age of BULLYING IS BAD!, still think it's an acceptable idea to send kids out of the lunchroom or out of the party room or away at snack time, or to give everybody else a treat but not them, or to have them bring their own treat while others enjoy the pretty pretty cupcakes. Because, children, it's not okay to make someone feel different or unwanted, unless that someone might keep you from eating a peanut-butter cup at snack time, and then all bets are off.
Now, I know there are some parents of kids with special needs who have a legitimate beef with banning certain foods from school, because their children have issues of their own that limit what they are willing to eat. That is a rights vs. rights issue that is meaningful and difficult and requires addressing on a case-by-case basis. Please understand that I am not ranting at y'all here.
What I am ranting at is the idea that "the rights of the many vs. the rights of the few" applies even in situations where the rights on either side of the equation are of nowhere near the same magnitude. The question of, say, whose needs get met in the allocation of school funding is one where the many vs. the few has some significance. But honestly: The right to eat whatever you want for lunch and the right to a public education are not equal things. The right to have a particular treat at a class party and the right of a child to feel safe and welcome in her own classroom are not equal things. (And don't get me started on the right to eat one out of a million possible snacks while airborne and the right to travel freely. Stop pretending those are within a million air miles of each other.)
If we can't make these distinctions in an area in which they fairly straightforward, how will we ever make them in areas where they're hugely, heartbreakingly complicated? If parents dig in about putting something different in the lunchbox, how will they ever agree to change the entire structure of their children's education to accommodate a new vision of schooling? If administrators can't develop a policy to keep classroom parties of all things from becoming either lethal or exclusionary, how will they ever manage the personnel and parent protests over true and complicated and expensive and disruptive inclusion?
There seems to be a school of thought that food allergies are made up, and to change everything just to suit a particular kid's finickiness is recklessly indulgent. But what would you call saying to your child, "Your classmate probably won't really die. It's more important that you get to eat exactly what you want"? There's such an amazing opportunity here to practice what we preach about bullying, to mean it when we say it's not okay to make people feel different or unwanted, to introduce the idea of sacrificing a little of your own comfort for the good of another. Aren't those things we still want kids to learn? They're sure as heck things that will need to be in place for inclusion to work. As inclusion proponents, we'd like to believe that having all different types of learner in a classroom is good for everyone, that there are intangibles that typical kids gain from being with their differently abled peers. The apparent inability to find value in the fairly easy accommodation of food allergies does not fill me with confidence that anybody's going to be feelin' it with kids whose needs are more complex.
At this point, I am mercifully out of the school inclusion business. My kids made it through their years of FAPE mostly failed by inclusion. I had the opportunity to observe firsthand the many, many ways inclusion can be done in name only, by people who don't believe in it, to mollify the whining parents on all sides of the issue. Now, when I hear true believers talking like all we have to do is join hands and wish with all our might and shinyhappyinclusion will be the law of all the land, I can't help but be grinchy.
If people won't even change their ways to keep kids alive at school, why do we think they'll inconvenience themselves to give everybody a shot at something so abstract as an education?
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:
- Are you #$%@ing kidding me?
- Am I in the wrong meeting?
- What happened to the team members I met with last time?
- Why isn't the regular-ed teacher here?
- Why is the substitute teacher who doesn't actually know what an IEP is here?
- Why do you schedule a 90-minute meeting for a time when you only have 15 minutes to spare?
- If you know my child better than I do, how come you don't have the right name and gender in the IEP?
- How many trees did you kill to put all this stuff together?
- Do you ever think about how what you're saying sounds to someone who loves this child?
- How quickly would you smack someone who said that about your kid?
- Can I copy-edit this IEP?
- In which filing cabinet do you stash all the hopes and dreams you steal from parents?
- Is this seriously the best office the school could find for you?
- Can I give a report as the behavior consultant, since you're always asking me to solve school behavior problems?
- Would you say that if my child was sitting right here?
- Why would you say that when my child is sitting right here?
- Why do I know more about special-education law than you do?
- Why do I know more about teaching than you do?
- Why did you ever, ever go into this line of work?
- 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
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
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.
Next time that meme makes its way through your social media accounts, how about sharing this one instead?:
Wednesday, September 02, 2015
Munchausen Syndrome by Accident
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
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
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.
Award one point for each yes answer to these questions:
- Cleavage: Can she sneeze or slouch without risking a wardrobe malfunction?
- Slit: Can she cross her legs without flashing a worldwide audience?
- Hemline: Can she cross her legs at all?
- Tightness: Can she sit for three hours without passing out or sustaining serious bruising to the midsection?
- Frills: Will she have direct back-and-ass seat contact without having to sit on a peplum, huge bow, or scratchy petticoat?
- Simplicity: Is it conceivable that she could use the restroom without having assistants along to undress and dress her?
- 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?
- Shoes: Can she walk to the stage to accept an award without risking a heel caught in a skirt or a twisted ankle?
- 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)?
- Accessories: Do the earrings and hairstyle look like they could be worn for hours without giving her a headache?
- Does this look like a particularly nice mother-of-the-bride dress?
- If that color looked that way on you, would your mother have told you not to wear it?
- Does it look like something she just had hanging out in her closet? Or you might have in yours?
- Is there a regrettable accessory? (See especially: belt)
- Is it just, somehow, not appropriate to the occasion? (Can range from a too-short skirt to, say, a swan costume.)
Tuesday, February 10, 2015
Loving 'Parks and Rec'
- "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
- "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
- "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
- "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
- "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
- "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
- "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
- "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
- "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
- "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
Tuesday, January 27, 2015
How 'Cougar Town' Restored My Faith in Comedy
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.]
Monday, January 06, 2014
Brain Damage Does Not Make for Fun Link Bait. No. It Does Not.
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.
Friday, November 15, 2013
Games for My Friend, the King of New Jersey
- 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)






