Making Your Own Mistakes (as Your Mom Tears Her Hair in the Background): I've been reading a lot lately about self-advocacy as an essential college skill for kids with special needs—most recently, in a post on Different Dream for Your Child—and, sure, of course, it's true. Colleges don't want to talk to the Warrior Mom. If young people can't speak for themselves, they don't get heard. The thing I'm struggling to accept about self-advocacy now, as my daughter makes her way through college, is that it is not a duplicate of mom-advocacy. She doesn't do things the way I'd do, the way I spent years and years doing when fighting for her was my responsibility. That's somewhat crazy-making. I've had to take a deep breath and remind myself that doing things for yourself often means making mistakes, and learning from them, and finding your own solutions that work for you. We don't expect typical kids to make all the right decisions during their college years—in fact, we rather expect spectacular screw-ups as they find their adult legs. Why should kids with disabilities be any different?

Stage Fright: My once-a-month contribution to Hopeful Parents just went up. I wrote about my son's choir concert last week, and what a relief it was in comparison to his third-grade choir concert, at which both he and I behaved not so well. I kept him away from the performing arts after that because -- well, that's what we do, right? We change the environment. We assess risk vs. reward. We look for situations in which the child can be successful. We are wary of planning for failure. It sure is delightful, though, to find that a situation once feared and avoided is now, at the very least, survivable. By both of us.

Let the Boy See the World If He Wants To: That's the theme song for Zach Anner's new travel show on Oprah's network, which finally debuts tonight at 8 p.m. I'm proud to have remembered to set my DVR for it, and I'm looking forward to seeing what this funny guy with "the sexiest of the palsies" can do. Get a preview of the show in the video below, and watch it or record it yourself. You might also want to read interviews with Zach today from Disability Scoop and Love That Max. Some good food for thought there about how parents should challenge their kids with special needs, and, well, let them see the world.

Maybe "Children With Special Terminology": Today's guest on the Inclusive Class radio show was Kathie Snow, who advocates for inclusion and person-first language on her Disability Is Natural site, and one of the topics that came up in passing is the term "special needs" and how, well, un-special it is. It sets kids apart in a not really useful way, but I really don't know that there's an option that's any more desirable -- "disabilities" seems negative and limited, and "differently abled" sounds like the kid has superpowers. I'm stuck with "special needs" in the name of my About.com site, and I've defined it there as broadly as possible. I do think we need some sort of umbrella term for when we're discussing concerns specific to this subset of kiddos. What do you think would be more suitable than "special needs"?

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This Was More Fun When Santa Did All the Work: So, let's take a moment to talk about shopping, shall we? Because if you're like me these days, you're pretending to do work while really you're frantically doing Web searches looking for That Thing You Want for Christmas. Or maybe that someone else wants, if you're generous, but this week, it's all about me. My elusive prey at the moment is some sort of bag that's big enough to stow a 13" MacBook but not so big that I can't use it as a purse when I'm going somewhere without the computer. Trying to eliminate the many-different-bags-and-which-one-did-I-leave-my-keys-in dilemma, if you know what I mean. Right now I have a perfectly decent large laptop tote, and a small just-the-basics bag, and a medium-sized backpack, and all of them work just fine, so I don't really have a reason to get a new bag unless it is Just the Right One that replaces all of the above. But it's either hiding from me or costing more than $100, which might as well be the same thing. Where would you look?

You Know What Word I’m Not Comfortable With? Nuance. It’s Not a Real Word. Like Gesture. Gesture’s a Real Word. With Gesture You Know Where You Stand. But Nuance? I Don’t Know.: A post on Support for Special Needs yesterday by Robert Rummel-Hudson touched on something that I think most parents who've been on the special-needs beat for a long time start to feel -- that despite the explosion in support opportunities the Internet and e-mail have brought, it's still not that easy to find a community that fits. You feel a responsibility to be a professional sharer of your experience for the newbies, but after a while you realize that there's much more nuance to your story than you can ever responsibly explain to someone just starting out. And your fellow veterans seem to have hardened into those nuances to a degree where it's almost impossible to honestly share your experience without being accused of invalidating somebody else's.

I received huge assistance after adopting my kids from an e-mail list for parents who'd adopted from Eastern Europe, but when I was in a position to give advice back, I found a minefield of people who felt any discussion of special needs was bad for adoption and therefore evil, and people who felt anything other than a scorched-earth approach to problems like RAD and FASD made you a raiser of sociopaths, and people who seemed to scan posts for any phrase they could use as an accelerant for their own particular flame wars. Like many parents with a point of view, I fled to my own little website world where I could set the rules of discourse, blogging and writing and eventually becoming About.com's special-needs-parenting guide, and I hope I've been useful to others in that effort. Yet I do feel at times like I've become a "brand" in a way that makes me a worse parent in my real life, where being able to turn any experience into 500 words is not that useful a skill.

And How Great at Organization and Regulation Are You, Exactly: Today's Inclusive Class radio show was on executive function, which is not a party for VIPs but the ability of an individual to self-organize, self-direct, and self-regulate. All those good things so many of our kiddos are so bad at. Our guest, Dr. Christopher Kaufman, had some hopeful things to say about how teachers are starting to understand that bad behavior does not = bad kid, and that there are some really easy ways to accommodate immature executive-function skills. I don't know why we -- parents and teachers both -- can understand that kids may need help with speech or with gross motor or fine motor skills, and that they have to learn to read and walk and potty, but expect organization and regulation to just happen as a natural function of being alive. Those skills have to be learned like everything else, sometimes at a developmentally slower pace depending on the kid -- and as the enormous adult-organization industry would attest, some folks never quite get it yet go on to lead useful lives.

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What They Did for Love: This is the YouTube video that's making us teary around my house this week -- of my daughter's high-school marching band and alumni playing this year at the traditional Thanksgiving game and paying tribute to their director's 40th anniversary. It was my girl's first year participating as a graduate, and inspiring as always to see everyone gathered together. If you've been in a band or had a child in band, give it a look. Have tissues handy.

 

'Cause Who Couldn't Use a Bunch of New Books to Add to the Pile?: Well, this is cool. My book 50 Ways to Support Your Child's Special Education is included on The Coffee Klatch Parent’s Holiday Book Wish List, in the excellent company of books like Thinking in Pictures, The Out-of-Sync Child, Sensational Kids, and The Kitchen Classroom. I'd never actually thought of my little book as Christmas-present material; it's kind of bossy, the sort of book you buy yourself when you know you need a kick in the pants. I'm sure we all know parents of classmates of our children who could similarly use a clue, though, and maybe schools should be sending copies home gift-wrapped to get that parent involvement they're always whining about. Anyway, big thanks to Marianne Russo for including me on the Coffee Klatch's list, and if you're looking for more books to consider for special-needs giving, check out the ridiculous number of book reviews on my About.com site. It will make you feel guilty for not reading more, and that's a gift that keeps on giving.

Squeamish? Skip This Post: Just got back from the dermatologist, where my son had an item removed that we have taken to calling the Disgusting Bloody Ear Growth. It started out months and months ago as a fairly colorless lump behind his ear, and got bigger with time, and once it was big enough to feel weird to the touch, he couldn't stop touching it, and that made things worse. In August, his doctor said it didn't have to be removed if he could just stop picking at it, but ... yeah, that wasn't going to happen, was it? It just got bigger and bloodier and crustier and yuckier. He made at least one trip to the school nurse due to bleeding, his pillow was covered with splotches of blood, the bandaids we put over it came away with pads-full of disconcerting colors, and all in all, it started looking like the kind of thing that, if this was a horror movie, would be possessed by the devil. So there was nothing for it but to slice the dang thing off, and I was amazed at how quickly and fusslessly that was done. Our challenges, though, have not been excised: How the heck am I going to keep a skin-picking guy from doing damage to the eraser-size scab that's left behind? I see incessant nagging in my immediate future.

Meaning Well Doesn't Make You Any Less Rude: The blog This Ain't Livin' has a post today about Cure Evangelism, which drives people to grill strangers on their medical care and choices under the guise of being helpful, concerned, and well-meaning. Certainly parents of children with disabilities are well acquainted with cure evangelists, not all of them strangers -- surely I'm not the only one who's had relatives inform me that they know all about my kids' disabilities because they read something in a magazine or their neighbor's friend's hair-dresser did thus and so. And there can be differences of opinion among parents of kids with similar issues that causes evangelism for a particular cure to burst into flames. But random bystanders are also, certainly, full of ideas if your child has a detectable disability, and are happy to expound on them right in front of the kid in question. And truthfully, sometimes, we're all too eager to contribute to the conversation. I know, as often as I wish somebody else would shut up, I wish I could shut my own mouth more.

Unfair Play: The Ams Vans blog had a post today about a President’s Council on Physical Fitness and Sports study showing that "only 29 percent of students with disabilities take physical education classes at least five days a week, compared to 34 percent of students without disabilities." Now, when I was a kid, that statistic would have made me envy students with disabilities, because I hated physical education big time. But my adult self recognizes the injustice of schools limiting physical activity for kids with disabilities because it's too hard to figure out what to do or too inconvenient to train teachers to do adaptive gym (which my son has been fortunate to have thanks to one teacher who covers three schools) or too expensive to make play areas safe for every student. The 5 percent deserve better.

Happy Thanksgiving!: We just drove over the river and through the woods and down the Interstate to our relatives' house the next state over, and all the way, I was whistling and humming and tapping my toes to this song. Play the video, and it will be your earworm, too. That's my gift to you this Muppet-movie-opening weekend.

We Are the 5 Percent!: Education Week had an interesting post up today about statistics from the U.S. Census indicating that about 1 in 20 school children has a disability, or about 5 percent of all students. Not an overwhelming number, maybe, but certainly a presence. Enough to maybe not get treated like someone you're doing a favor to include. Man, in these days when parent participation is so nonexistent in so many schools, if all 5 percent of the special-needs parents in any given school could resolve to show up at PTA meetings and school events, we could take over the joint. Occupy public schools!

Last Week, He Wanted to Be a Mechanic: In about an hour, I have a meeting with our high school's transition coordinator and a representative from the county Department of Vocational and Rehabilitation Services to discuss my son's future. I wonder how much they'll laugh when I mention that the field he's excited about this week is forensic science. Yesterday in health class, he saw a video in which a dead person's organs were removed; I suspect it was really about the damage to organs caused by smoking or alcohol, but what he got out of it was how cool it would be to have a job in which you weigh brains. The community college he's planning to go to does indeed have a certificate program for forensics. Wonder how open that field is to individuals with differences? Though I suppose wanting to handle dead bodies for a living is a difference right there.

Bullying Unawareness: There's a thought-provoking post by Robert Rummel-Hudson on the blog Support for Special Needs today, entitled The Things Unseen, about parent perception of bullying vs. socially clueless vulnerable child perception of bullying and how big a stick we should carry when we let those kids know that we know what's going on, mister, and you better cut it out. It's funny -- conventional wisdom on bullies has been that if you ignore them, they will get bored and move on to somebody else. But when we have kids whose first impulse is to ignore bullying, because they don't even notice that bullying's going on, we kind of want to shake them and make them notice. We assume that, far from getting bored, the bully will enjoy our kids' obliviousness, and that will make things worse. Speaking of which, I'm pretty sure that the few times I have inserted myself into a bullying situation, worse is exactly what I've made it. I often wonder how often, as parents, we're just reliving our own personal minidramas instead of actually engaging with our kids' experience. My interpretation of who's a bully and who's not is often very different from my kids', and what if I'm the one seeing it wrong?

Plus, I Rant About the Miserableness of Microsoft Word: Today's topic on The Inclusive Class radio show is one that's often on my mind -- support for struggling readers. Howard Margolis, who does another radio show for Special Needs Talk Radio called "Maximizing Your Child's Potential," talked about the teaching techniques that work best for kids who have trouble with reading, how parents can steer their kids into the right classrooms, and what can be done at home to help your child read better. I love the idea of schools giving parents training on working with their kids -- seems like a much better strategy than just whining that parents don't enforce homework appropriately or get sufficiently involved in school. Speaking of school involvement, though, I think this idea of figuring out what teacher would be best for your child and then sort of structuring the IEP so there's no choice but that classroom shows the value of volunteering in your school so you can spy, get all the good gossip, and know grades ahead of time in whose classroom you want your child to be. (Or not.)

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As God Is My Witness, I Thought Turkeys Could Fly: Somebody pasted clips from this episode on Google+ this morning, and then I had to go find it somewhere online and watch the whole thing. Love the theme song, love the characters, love the fact that, no matter how bad your Thanksgiving goes, it's never going to be as bad as turkeys falling out of the sky like sacks of wet cement.

The Pity Behind the Praise: Sunday Stilwell's post on Adventures in Extreme Parenthood today about the condescending way Ann Curry spoke to a teenager with special needs and her dad on the Today show really resonated with me, as I'm still processing a similar sort of comment made to me in church this past Sunday. It was from an older woman who usually sits in the pew behind us, someone I've often thought must wonder why I don't make my son behave better. So when she made it a point to speak to me after Mass and told me I was a very good mother, I was initially relieved and gladdened, because, well goodness, there are so many not as nice things she could have said. But it's sort of impossible for me to hear praise like that without assuming that the subtext is sympathy and regret for my burden. When I think back to how hard church was with my son in his early years, his current behavior seems unremarkable to me, and so it's a jolt when someone -- with all good intentions, in all Christian charity, entirely undeserving of my ingratitude -- acts like I'm in need of mercy. It's worse when someone does it on national television, of course, but respect and acceptance of the kid would make most parents feel better than being praised for their parenting fortitude.

How You Know It's Time for a Career Change: What, I wonder, goes through the head of a teacher who would duct-tape a six-year-old with special needs to a chair (or, come on, any student at all) and think that was a righteous application of behavioral techniques? I understand teachers being undertrained and undersupported and overtaxed, but duct-taping a kid to a chair in front of a classroom of students? Not restraint or seclusion in the heat of a meltdown -- bad as those are -- but a self-satisfied way of punishing a kid who got up from his seat too often. Who does that? Who goes into teaching with the idea that this would be an okay problem-solving measure? Who doesn't realize that, if duct-taping a six-year-old to a chair is looking like a good idea, maybe a career in teaching isn't really where it's at? Really, lady, there are other jobs. Find one.