Thursday, February 09, 2012

Averse to Aversives: Reading a story recently about a special-education teacher who thought a good way to keep her students from mouthing crayons would be to dip them in hot sauce (the crayons, not the kids, though I wouldn't put anything past people these days) got me thinking about my son's own school experience with aversives. He was in a first-grade self-contained class on a track that was right for him academically and disastrous for him socially, and in that way educators have of focusing in on one trait they think they can change, without much thought for priorities or consequences, it was decided that he Must Stop Sucking His Fingers. A discovery was made that cleaning his hands with wet-wipes would keep him from putting the fingers in the mouth, and so I was ordered to send in jumbo boxes of diaper wipes to maintain this unappetizing state of his digits. Now, if you've had a kid who engages in comfort activities, you know where the story goes from here -- he stopped sucking his fingers, and started a whole bunch of newer, louder, more invasive, and even less socially acceptable behaviors. But by golly, they solved that finger problem!

The following school year, we switched him to another school and another self-contained track, one that was wrong for him academically and wildly successful for him socially. Since he had the same one-on-one paraprofessional, I waited with trepidation for the call to come, and eventually it did. Mrs. Mauro, send in the diaper wipes! I met with the teacher and made my case for the quiet comfort of mildly disgusting finger-sucking over all the jumping and flapping and hooting and hollering he'd do without it, and either she agreed with me or quietly purchased her own dang diaper wipes, because the issue was not raised again. Over the years, he's added paper curling and cuticle destruction to his repertoire of contained comfort activities; I don't think he still sucks his fingers in the high-school building, just comes home with bleeding nail beds. Maybe I should be sending in alcohol wipes instead.

Saturday, February 04, 2012

Tech Talk: Yesterday's Inclusive Class radio show focused on assistive technology, which certainly seems to be growing in awareness and options lately. When my kids were younger, Alphasmarts where a big deal, and now they look like dinosaurs. One thing Kathleen McClaskey mentioned on the show which I think bears repeating in any discussion about these cool new tools is the need to not only provide the gadget but to train the student and the teacher and the parent in the use of the thing. Teachers in particular can, I think, sabotage the use of assistive technology in classrooms just because nobody's ever told them how it's supposed to work and they don't have time to bother with it. That needs to change, particularly as classrooms get more inclusive.



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Wednesday, February 01, 2012

About.com 2012 Readers' Choice AwardsMore Nomination Nagging: In case there's anybody here who hasn't already been nagged by me on my About.com site or Twitter or Facebook to nominate stuff for the Readers' Choice Awards already, consider yourself pestered. Since I pick the finalists based for the most part on how many nominations particular resources have received, I really need folks to nominate and nominate again and encourage others to do so. Please take a look at all eight categories and see if you can come up with some worthy candidates  -- I put a lot of work into this as a way to celebrate writers and organizations that are making a difference for families of kids with special needs, and it helps a lot to have ideas from readers other than myself, and enough of a groundswell on some of them that I'm not just picking finalists at random. The competition part of it is kind of a necessary evil, but can be fun I think if we all run with it a little. If you can only manage one category, take a look at Favorite Special-Needs Regional Resource. Is there a local organization in your area that could use some attention or a rallying point? It could be a parent support group, Special Olympics branch, special-education advocacy group, anything you'd like to give a shout-out to. Thanks, and nominate early and often. (By the way, if you'd like to nominate your own blog or book, you are entirely welcome to so. If you're moved to nominate any of my blogs or sites ... aw, that's sweet! But since it's my contest, I'll have to put myself out of the running.)

Tuesday, January 31, 2012

Gee, EEG: So we're going to a fair amount of trouble to do an ambulatory EEG with my son, mostly because I think he may be having absence seizures and also wonder if some of his odd movements might be seizure-related. Plenty of other possible causes, but I'm curious, and professionals are taking my word for it. So now, what do I hope for from this test? On one hand, I hope that seizures will show up, because then I will feel justified in having put him through this, we'll be able to let people know that he's not just ignoring them when he does that, I'll get a gold star next to my name for being right, etc. But ... geez, I don't really want to hope he has seizures. But none showing up on the test doesn't necessarily prove he doesn't have them, just that he didn't just then. So I don't feel like I can really hope the test comes up blank, either. Boy, did I enjoy that long stretch of time when we hopped off the merry-go-round and decided not to look for problems for a while. Not loving the return.

Monday, January 30, 2012

"Where's the Functionality?": Last week on her blog Authentic Inclusion, Lisa Jo Rudy lamented that so many resources on "teaching" kids with autism are interested only in teaching kids with autism to look less like kids with autism, not to give them any particular academic enrichment. I've felt the same annoyance, although with my son and his friends, it's been more a matter of "life skills" than social skills. At some point, the special-education track for multiple disabilities veers off the normal academic highway and into job training, checkbook balancing, food preparation, housekeeping, and all manner of practical skills. Which aren't bad, necessarily -- arguably, typical teens could use that sort of instruction, too. But it's not why we send kids to high school.

I remember when my son got placed in a resource-room algebra class, kind of on a fluke, and his speech therapist shook her head and said, "Where's the functionality?" I was invited to agree that for a kid like my kid, something like algebra could have no possible usefulness. But, for goodness sake, where's the functionality of algebra for anybody? Unless you go on to major in math, probably you could function just fine without quadratic equations. Still, we seem agreed as a culture that things like algebra have some value for training the brain and bestowing on a student a general understanding of the world of learning, and why not open that world to everybody? It does give good practice in approaching things in a procedural way, breaking them down into steps, maintaining focus, and checking work. Those are life skills, too.

It's going to represent a sea change for special education, I think, to roll from the life-skills/social-skills approach to a more academic one. It's a change that will be forced by inclusion, as the sort of alternate universe represented by self-contained classes fades away. I know some parents will miss that, have liked the school taking responsibility for teaching the skills their kid is really going to need to survive. Personally, I'd rather my guy learn things in school I can't teach -- algebra being, oh my goodness, one of those things. I'll take care of the bed-making and the bus-riding on this end, thanks.

Saturday, January 28, 2012

Better Late Than Never: I've been neglecting my intention to post about the Inclusive Class radio shows, although the chats about paraprofessionals and making schools inclusive have been interesting and worth sharing. To double up here, then, here's the widget you can use to listen to the interview from two Fridays ago with Susan Fitzell about working with paraprofessionasl and what they need to be effective:


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And here's the widget you can use to listen to this past Friday's interview with Mary Falvey, author of the book Believe in My Child With Special Needs:


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I am being a little more prompt posting links to the radio shows on the index page.

Wednesday, January 25, 2012

The Arc of Advocacy: Disability Scoop had an item yesterday titled Most Parents Pleased With Role In Child's IEP, which right there made my eyebrows raise. Really? Then I guess it's the vocal minority that writes all the books and the angry blog posts. One thing that particularly amused me was this line: "What’s more, parents of younger students were also more likely to be satisfied, the researchers said, suggesting that burnout plays a role as students age." I'd say, rather, there is an arc of advocacy, from abject gratitude to all these learned people who want to help this child you are so fearful for, to growing awareness that these learned people know less about your child than you do, to increasingly heated insistence on having your voice heard and your views considered, to insistence on being the loudest voice, to increasing compromise and acceptance and yeah, at the end, where I am now, a fair degree of burnout. I remember how incredibly pleased I was with my role in my child's IEP when they were in preschool, and how pissed-off I was about it a few years later because I was being disregarded, and how uncomfortable I was a few years after that because I was being listened to perhaps too much, and weren't these other people being paid to provide their expert opinions? Hard to please, yes, I am. It's my kid's life, you know?

Thursday, January 19, 2012

One More Turn on the Merry-Go-Round: Had the odd experience the other day of taking my son to his pediatric neurologist after about seven years away. She released us in 2005 with instructions to just get in touch if we needed something, and until now we have not. But the possibility that his brief spells of tenacious inattentiveness might be absence seizures has remained in the back of my own brain, and while he would not have been able to tolerate an ambulatory EEG in 2005, he is now, and wants to know, and needs to know if he's going to drive a car or get a job or explain to people that no he's really not just ignoring them. So back to the neuro we went, and on the one hand, let me recommend seven-year gaps between appointments, because even if he's behaving his worst, your kid is going to have made some progress. On the other hand, the doctor may not appreciate the full scope of progress and, remembering the younger version, still give you that "this kid?" look when you talk about things like going to college. He's much easier to manage during appointments now than in younger years, and fills out some of his own paperwork, so that's good. We have the EEG scheduled for his school break in February, and I expect it will prove nothing much either way, but every now and then I feel obligated to act like things might.

Wednesday, January 18, 2012

What I'll Be Spending All My Time Working on for the Next Couple of Months: If you're like me, you spend way too much time reading blogs, have way too high a pile of new parenting books awaiting your reading time, and pick apart every TV show for the possibility of a special-needs plotline. Well, here's a way to put all that "research" to good use. I've got eight categories of Readers' Choice Awards awaiting your nominations over on my About.com site, and it's a great way to show some love to your favorite special-needs resources. Check out all the categories, and read the FAQ if you have other questions. Then nominate away, early and often. Nominations end February 15, to be followed by voting and the awarding of ... well, just bragging rights, not even a nice trophy, but there will surely be an nice-looking graphic involved.

Saturday, January 14, 2012

Memo to Doctors and Hospitals: You want to know how to ignite a firestorm for yourself like Children's Hospital of Philadelphia is experiencing? Three tips:
  1. Tell the parents of a child with special needs their child has no quality of life
  2. Tell the parents of a child with special needs that their child is not worthy of the same treatment others might receive
  3. When the parents advocate for the child, say "I have been warned about you," and suggest that fighting for this particular child is an offense to the system
There was a time when those parents would have no recourse but to go home and cry. They'd either go along or go someplace else, and either way, you'd be done with their dissent. But the Internet has changed all that. Blogs have changed all that. Facebook and Twitter and Google+ have most especially changed all that. Parents of children with special needs have reach. They have a way to tell their story where people will listen. They have networks through which to spread that story like crazy. And everybody who hears that story has a way to complain in public, with maximum visibility and extreme prejudice.

And they will, because you know what? Those three comments up there are like red capes to a bull. Every parent of a child with disabilities has heard those comments -- from a doctor, from a social worker, from an insurance drone, from a teacher, from a special-education administrator, from a stranger at the supermarket, from a close family member. We do not have to personally witness a particular incident to believe it is true -- we have a slideshow of that exact experience running in our brains, and we will bring all that emotion, all that righteous indignation, all that scathing anger down on your head. Maybe we weren't able to express it when it happened to us, but it will flow over you like lava.

For me, the slideshow starts with my daughter's birthparents who left her in a hospital in Russia and walked away. I've never understood how they could do that, but the information we received suggested heavily that they were persuaded she would have no "quality of life."

The slideshow clicks, and we're at my daughter's first neurology appointment in the US. The doctor looks at her orphanage records, listens to my answers to his questions, and then says, with contempt, "This child has cerebral palsy. Why did you adopt her?" Clearly, he didn't think much of her quality of life, nor of ours now that she was a part of it.

Click again, and we're at an IEP meeting in which I am struggling to get my daughter switched from self-contained to inclusion. Her speech therapist looks me in the eye and tells me I have to understand that this child will never have an independent life; if I want to be optimistic, I can dream of her one day sweeping the floor at McDonald's, but a sheltered workshop is a more likely reality. Hoping for more would only hurt her. (She's in college now, by the way, so you can see how well I listened.)

Click, click, click. Insult, rejection, slam. Cluelessness, callousness, cruelty. Any parent of a child with special needs has a lifetime of those moments branded onto their brain. We do not forget. And so, when a cause arises that we can add our voices to, oh my goodness will we do so. And you will say that it wasn't like that, and the parent isn't telling the whole story, and there were other reasons, and we weren't there. We will not care. We will remember all the times that we were there. And we will remember exactly what it was like.

And we will make sure that your quality of life takes a quick and precipitous drop.

For more on this story, see my About.com blog post and the running list of posts on the topic I'm collecting there.


Friday, January 13, 2012

If You Could See a Lighter on a Radio Show, I'd Have Been Holding One Up: I got to talk to one of my personal parenting gurus, Howard Glasser, on the Inclusive Class radio show today, and I felt like a squee-ing fangirl at the feet of a rock star, yelling out familiar tunes to play. "Tell the analogy about the video game!" "Talk about Kodak moments!" "Tell us where to put our energy!" I knew all the words, you know? I've been singing these songs since my son was in the fourth grade, and someone referred me to Glasser's Transforming the Difficult Child: The Nurtured Heart Approach, and it actually did transform my personal difficult child, and my style of parenting, and my suggestions to teachers. Awesome stuff. Listen to the episode below to hear me doing the equivalent of a 30-minute "Woooo-hooooo!" as I lean against the stage.



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Monday, January 09, 2012

Excuse Our Dust: Mothers With Attitude is moving from a host where I have to pay and wrangle HTML to a Blogger blog that will be slightly less spiffy but much much much easier for me to keep up (and pay for, since it's free). The motherswithattitude.com url will move with it, but links to pages off the homepage will be messed up, and the site may be offline for a while in the changeover. Please be patient, bear with me, and take the time to look for your favorite pages and pick up the new url. One thing that's already done is the movement of all my old blog posts to this blog here. Some were still languishing on the old site, and it was fun to see them again as I pasted them in here and recall old times with my kids. If you want to take a trip in a time machine, check out the 2000, 2001, and 2002 posts now in the blog archive at lower right.

Friday, January 06, 2012

Just Managing: Today's topic on The Inclusive Class radio show was classroom management, and boy, talk about something that's vital to the success of students with special needs and yet tough for their parents to control. Often by the time I found out that a classroom-management problem was responsible for my son's behavior problems, most of the year was over. And even if you do develop a network of school contacts who will clue you in on problems, how does a parent address that, exactly? It's become such a cliche that bad parents blame everything on the teacher and nothing on their kid, but sometimes ... sometimes, you know what, sometimes the teacher is the environment that needs to be changed. If you're lucky, you have a teacher who can whisper in your ear all the things to demand in an IEP so that your child will not get that teacher the following year. At any rate, listen to the interview below with Michael Linsin for some thoughts on what works to create thriving and successful classrooms, and marvel with me how much it sounds exactly the same as what makes good parenting of children with special needs.


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Thursday, January 05, 2012

R-E-S-P-E-C-T, Find Out What It Means to Me: Or what it doesn't mean, in this case, which is nieces and nephews calling aunts and uncles Aunt and Uncle. This has been a Thing with my kids and extended family members, and yeah, I've had the talks about calling people what they want to be called, and showing respect to elders, and yada yada yada. I get that it's important to many folks, my kids' aunts and uncle in particular, and that even kids with special needs should be taught to honor social conventions. But I've been a Whatever Works, Change the Environment, Pick Your Battles mom for so long that it's hard for me to care about honorifics when other more important things are being done right. So, for example, when my kids are behaving well in a big gathering, and eating what they're served, and saying thank you for presents, and showing an interest in conversing with older relatives, I really hate to hear them constantly being corrected for leaving the Aunt or Uncle off a name. Maybe parenting kids with special needs makes you value content over form that way. I'd point out that other young family members have all of the latter with none of the former, but I'll respect their parents' priorities if they'll respect mine.

Tuesday, January 03, 2012

Promises, Promises: Hey, here we are in 2012. The year my son will graduate from high school. The year I'll attend my last IEP meeting. The year I'll have to pay for two kids in college. A banner year in many ways. I made some unrealistic resolutions yesterday on my About.com site, so it seems appropriate to make some promises here as well. I'd really like to make a resolution for the Mothers With Attitude site this blog sprung off of, and that is to find a less labor-intensive way to keep it up so that I can make it a living resource again and not something that gives me a headache at the thought of messing with. The site is currently a mishmash of iWeb pages and old-design HTML pages and a file structure that mixes the two, and every time I try to update it I regret it. Right now, I'm leaning toward bringing all that content over to Blogger, which would have the added advantage of being free. But then I'd have to resolve to set aside a large chunk of time for making the switch, and ... yeah, that'll happen. I resolve to try to figure it out before December 31, anyway.

Friday, December 23, 2011

Three Cheers: Really inspiring show today on The Inclusive Class radio show with guest Sarah Cronk, founder of The Sparkle Effect, which includes girls with special needs in cheerleading squads. If you're wondering how you'd get such a thing started at your child's school, Sarah's website The Sparkle Effect has lots of information, and there are grants and mentors available to help out. What can't be provided by a website, of course, is administrators and school-board members who have the courage and the creativity to take a chance on something different, and young people who are eager and determined to make this opportunity happen for their peers with disabilities. I don't know where you come by that part of the equation -- maybe it will be siblings of kids with special needs, like Sarah, who will lead the charge, or maybe it takes starting inclusion so young that it seems odd to ever leave kids out. Listen to the interview below to boost your faith in the future.


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Wednesday, December 21, 2011

Calling All Kids Who Would Rather Play With the Infield Dirt Than Catch the Ball: A post yesterday on Support for Special Needs on "Scouting Inclusion Policies & Special Needs" reminded me of so many attempts at inclusive activities, and how they don't automatically suit our kids. I know the pendulum is swinging away from special-needs-only activities, but there's going to have to be a range of opportunities with varying expectations in the mainstream to make up for that, and I don't see it yet -- even though it would certainly benefit typical kids of different abilities as well. I chose Challenger League baseball for my son instead of regular Little League because those mainstream teams have become so serious that I knew my guy would not have the focus and would not have fun. If a regular Little League team could be about having fun outside with your friends, cheering for everyone, and not stressing the score, and if it could then provide an inclusive experience with non-disabled kids who also don't want to stress over whether they can catch the ball or get the hit, that would be just fine. Not sure it exists outside the special-needs world, though. Maybe we need to invite mainstream kids to our special groups instead of the other way around.
Do You Hear What I Hear?: I'm trying to imagine what goes through the minds of adults who think it's funny to make cracks about a child's medication in front of that child and his parent. Recently it was Santa Claus in the news for taunting a kid, but I've seen a substitute teacher do it to a kid in her class, and I've had a drugstore cashier do it to my son and me. "Did he take his medication today?" they crack. Har de har har. Santa in this recent story went on to suggest that the child in question should request a jail cell for Christmas, and there's a lump of coal coming his way for that, you can bet. But I imagine we've all had our instances of jaw-dropping comments by people who should know better and should have the feelings of kids and families particularly at heart. Bah humbug all around.

Monday, December 19, 2011

Well, They Didn't Say December 5 of Which Year: Feeling extremely ticked off today at the Warner Brothers Online Store, from which you should not order if you have any particular date by which you wish to get your goods. And if you think, "Hey, I don't need it for a month, even if they're slow, it'll come in time," you are sadly mistaken. As was I, assuming that ordering DVDs on November 25, DVDs marked as in stock, DVDs sold with a stated ship date of December 5, would be a safe bet for Christmas delivery. December 19, and not a sign of them, nor an unsolicited communication from the store updating the information. I've had a few contacts with customer service, and always gotten the kind of reply I expect is in a notebook under, "Say this to irate customers." Oh, it's back-ordered, but it's almost here. Oh, it's going to ship any day. Oh, it just went on the truck. Oh, bull. I'll believe it when I see it. Most likely as a birthday present for my kid instead of a Christmas one. Bah, humbug.

Sunday, December 18, 2011

You've Got a Friend, At Least While the Teacher's Looking: Friday's Inclusive Class radio show was about promoting friendships in inclusive classrooms. And boy, is that sure something that everybody could use some help with. I think programs like the one our guest Heather McCracken was talking about can increase acceptance, and friendliness, and those are very good things. What I think often eludes kids with special needs in the mainstream is true friendship -- the slumber parties and the secrets, the roommates on school trips, the person who is genuinely glad to see you for reasons other than acceptance and understanding and because that's what nice kids do. I'm not sure how you make that happen, or if you can. Starting with the inclusion and the instruction early would certainly help, when kids with disabilities have the greatest chance of being just another kid. Inclusion proponents often tout that the mainstream is where the "real friendships" are, but I sure haven't seen that with my kids. Of the two of them, the one who spent the longest time in self-contained is the one with the longtime close friendships.

 
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Friday, December 16, 2011

Weeping Alert: Here's the video I mentioned on the radio show this morning, about two 13-year-old friends, one of whom has cerebral palsy, who competed in a triathlon together. More about it, including photos, on the Ams Vans blog.

 

Wednesday, December 14, 2011

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?

Tuesday, December 13, 2011

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.

Monday, December 12, 2011

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.

Friday, December 09, 2011

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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Thursday, December 08, 2011

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?

Tuesday, December 06, 2011

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.

Friday, December 02, 2011

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.

 

Wednesday, November 30, 2011

'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.

Tuesday, November 29, 2011

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.

Monday, November 28, 2011

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.

Friday, November 25, 2011

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.

Thursday, November 24, 2011

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.

Wednesday, November 23, 2011

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!

Tuesday, November 22, 2011

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.

Monday, November 21, 2011

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?

Friday, November 18, 2011

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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Wednesday, November 16, 2011

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.

Tuesday, November 15, 2011

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.

Monday, November 14, 2011

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.

Sunday, November 13, 2011

Not Sure If I Should Be Hopeful or Not: Today's my once-a-month day to post on the blog Hopeful Parents, and for once I actually did it early in the day rather than at 11:59 p.m. This month's entry is about the unlikely prospect of my son going to his senior prom, and why I can't run screaming and laughing from that idea as I entirely should, as my husband totally can. Why does prom have such a stupid emotional pull on moms, so that we secretly plot our children's attendance and feel sad if they don't go? Are we just doomed to relive high school ourselves, over and over again?

Friday, November 11, 2011

Is the Principal of Your School Your Pal?: One of the challenges in getting schools to embrace inclusion is finding principals who really believe in it. I'll never forget the way the principal of the school in which my daughter had her first inclusion class did everything she could to sabotage inclusion, thus giving her teachers no particular incentive to try hard to make it work. I think she just genuinely believed it was a bad idea imposed by people without her hands-on experience in schools, but the ones who got punished were not those bureaucrats but vulnerable children who had the least amount of say about their own placement.

I thought about that former principal when talking today on The Inclusive Class radio show with Kathryn Yamamoto, a principal of an elementary school in British Columbia who actively promotes the inclusion of students with special needs in her school, and also the inclusion of parents in the IEP process and the day-to-day implementation of that document. It's great to hear stories like hers, but also sad because that level of involvement just doesn't happen in so many schools. Does your principal get it? Give the show a listen and add this to your wish list.


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Thursday, November 10, 2011

Speaking of the Need for Overprotectiveness: Another post that reinforces the need to check and check and check again that your kid is being watched at school -- not to mention the value of befriending bus drivers -- is up on the blog Adventures in Extreme Parenthood. In related news, my post yesterday about the tragic result of a lack of bus oversight brought me the oddest Twitter mention today; it seems that a man who wrote an article for Time magazine about the importance of roughhousing in an era of parent over-involvement tweets something along the lines of "Nice, Terri. You might also enjoy [link to his article]" any time someone uses the phrase "helicopter parent" in a tweet. Similar wording appears over and over again on his timeline, and I have to assume he doesn't actually read the linked material before he responds with "Nice." I hope so, anyway, because responding to a post about child rape with an appeal for more roughhousing and less supervision? Is creepy.

Wednesday, November 09, 2011

Why We Helicopter Parent: If you've never thought much about what happens when your child's bus gets to school, and who meets it, and how supervised kids are as they make their way into school, a terrible story about a girl with autism and what happened when she got off the bus should prompt you to ask those questions. And feel better about watching your child walk all the way into the school building, if you do the drop-offs yourself. And justify any vigilance you may show in, say, monitoring e-mail or Facebook activity. The world's just scary.
Here's Why I Don't Clean My House: I recently took some time to polish our good-wood dining-room table. Looks great -- except I set the can of polish on the table at some point, and it was apparently wet on the bottom, because when I was done with the elbow grease, there were three new can-shaped rings marring the finish. So I grabbed a bottle of another wood-cleaning solution, and went at the rings with that ... but of course, I put the bottle on the table at some point, and it too was wet, having come from the same spot under the sink as the polish, and so the net effect was the addition of two rectangular marks that also will not come off. So fine a housekeeper am I.

Tuesday, November 08, 2011

I Voted, Really, I Did: I was at my polling place bright and early today, as a matter of fact, but I can't prove it because our town (or at least, the high school where we vote) does not give out stickers or stubs or any bit of swag with which to brag on one's status as an official voter. What gives? I see pictures of people on the Web proudly bearing their proof of good-citizenship, and I feel somehow second-class. I guess when it comes right down to it, I don't really want my sky-high property-tax dollars going to something as trivial as a "I Voted and You Didn't" sticker, but ... maybe a hand stamp of some sort?
Talking the Talk: It's well past Halloween, but here's a scary story for your Tuesday -- a post on the blog Bloom stressing that yes, you really really do need to talk to your child with special needs about sex. If you accept that premise but have no idea how to go about doing it, may I recommend The Rules of Sex: Social and Legal Guidelines for Those Who Have Never Been Told, a very straightforward take on the subject designed for use with children who have developmental disabilities. It's one of those books you'll want to pick and choose from as suits your child's particular needs and your particular comfort level, but it provides a good base from which to start, and some good reasons for doing so.

Monday, November 07, 2011

When Productive Work = Procrastination: Yesterday I had planned to finally finish the book I've been trying to read and review for a month, and so instead I started noodling around on the computer and designed the new Love Notes for Special Parents Calendar 2012. A worthwhile thing to be sure, and something that needed to be done, and yet ... that book is still sitting and staring at me. When did I start procrastinating reading? Reading is what I used to use to procrastinate. Maybe it's the fact that all I ever read anymore is special-needs books to review, and even when I'm really interested in the subject matter, the books tend not to be page-turners. Today's the day. Yep. I'm gonna finish that book today. Sure. It could happen. Hmmm.

Sunday, November 06, 2011

The Underwear, at Least, Is Mine: Managed to switch over my closet to winter wear this weekend (so, people of the Northeast, expect a sudden heat wave). How odd is it, do you suppose, that the majority of the clothing I wear is either a hand-me-up from my daughter or something I retrieved from my mother's closet after she passed away? There's surprisingly little that actually originated with me. Some of it is that I'm short, so I can wear clothes my kid has outgrown; some of it is that I'm cheap. Does anybody else have a multigenerational wardrobe? I've even got a few things from my son's and husband's cast-offs for good measure.

Saturday, November 05, 2011

Looking a Gift Horse in the Mouth: It seems sort of Grinch-like to complain in any way about Toys 'R' Us's annual Toy Guide for Differently-Abled Kids. It's a nice idea, a useful gathering of things, a high-profile enterprise with an appropriate celebrity selected each year to draw warm-hearted attention (this year it's Eva Longoria, who has a sister with Down syndrome). But ... that phrase, "differently abled," just seems so bend-over-backwards to me. Do we really have work that hard to feel good about our kids? There's nothing "different" about my kids' abilities, or their disabilities for that matter -- they have strengths and weaknesses just like anybody else. "Variously abled" might be more apt. "Differently abled," though well-intentioned, is still about different. I agree that "disabled" and "special" and "special needs" and "exceptional" are all problematic in their own ways, but "differently abled" is both not-quite-it and linguistically awkward. What else you got?

Friday, November 04, 2011

Three Letters That Make Our Blood Run Cold: The topic of this morning's The Inclusive Class radio show was IEPs, and automatically when I hear that term I cringe -- from memories of bad meetings, from memories of having to decipher that thing, and from memories of advocates and authors insisting that if you're not obsessing about every word in that document you're letting your child down. But our guest, Jennifer Sommerness, had some interesting things to say about inclusive IEPs that are more action-oriented than your average hunk of legalese, and opening up the IEP process to both parents and regular-education teachers who don't really want to sort through all that terminology either. Unlike most considerations of IEPs, the conversation didn't make me hyperventilate or anything. Give it a listen.


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Thursday, November 03, 2011

At What Age Can They Take Over Fighting With Insurance Companies?: The blog Thriving, from Children's Hospital Boston, has a post today about a subject that's much on my mind lately -- preparing your child to take over responsibility for his or her own health care. We're about at the end of the road with my kids' pediatrician, and that's made me wonder whether they should also, say, be making their own appointments, bringing in their own prescriptions, providing their own medical history. I don't think my son is ready for that yet, but I've been breaking my daughter in little bit by little bit, having her make and attend orthodontist appointments on her own or fill out the forms at specialist and lab visits. There's a lot of talk about self-advocacy in a school setting, not so much in a medical one, but it's an important part of becoming an adult. (One thing about the post that did make me feel good, though, was the depiction of a typical teen texting during a doctor's visit while Mom steps up with the answers. I do this, too, and always blamed it on my son's disability. But maybe, in this instance, he's just a teenager. Okay, so he's talking to his imaginary friends during doctor visits instead of to a cell phone, but still.)

Wednesday, November 02, 2011

Stopping the Blame Game: It was nice to see a post titled "The Best Reasons Why Parents Should Be Looked At As Allies & Not Targets Of Blame" on the blog Engaging Parents in School this morning. I get why teachers want to blame parents, and why parents want to blame teachers, and sometimes the blame is deserved. It's never particularly useful, though, and tends to distract from more important things. I've enjoyed being allies with most of my kids' teachers. And I've hated the way parent-bashing has become a regular campaign activity at school-board elections in my town. It's time for some serious re-thinking about how schools and teachers interact with parents, moving from a school-based PTA meeting and teacher conference model to freer interaction on the Web and via e-mail. It could happen.
If There Was a Skeleton There, You'd Never Find It: In a very kind plug on her blog today about the state-by-state special-education resources on my About.com site, Jolene Philo wrote, "Someday, I’d like to look at Terri Mauro’s closets to see if they’re as well-organized as her website!" And I about spit-taked my coffee when I saw it, because ... no. No, you don't want to look at my closets. I don't want to look at my closets, which is part of the problem. (I exclude here the coat closet at the top of the stairs, which was part of the great Living Room Purge of Summer 2011, and is so neat that we could even move the vacuum there from its previous spot in the middle of our bedroom floor. It is an aberration.) My bedroom closet is so messy I can't get at my clothes, which is why many of them are piled on my desk chair. Our linen closet is a jumble of towels and blankets and mismatched sheet sets. The closet outside the kids' bathroom contains not only toiletries but items that couldn't fit in the pantry, which is somewhat unsettling, flour next to toilet paper next to rice cakes next to shampoo next to coffee K-cups behind the Band-Aids. Let's just say that I put all my effort into the work I do for y'all here on the Web, and don't have time for petty things like keeping a neat closet. Yeah, that's it.

Tuesday, November 01, 2011

I Hate Fundraisers: Well, that's not saying much, is it? Most parents feel that way about school money-raising activities. What I'm particularly hating on at the moment is a fundraiser that came home with my son a couple of weeks back with absolutely no information on what it was for, when it was due, who to make checks out to, where to bring it, or really anything other than a glossy two pages on overpriced candles. It came home with another fundraiser that had a smidge more info, but they're apparently unrelated. I think they trust that your child was listening when the stuff was distributed, and ... aw, you know, this isn't even a special-needs thing. I can't imagine any teenage boy sufficiently absorbing candle fundraiser details to remember them when he got home. No one at school seems to be quite sure where and how this money is being raised; I'm trying to pin that down, only because a couple of folks were interested and I'll order for them if I can. I'm beginning to think perhaps I can't. It's an anti-fundraiser, apparently.
Jessica Lange Has a Lot of Company: The FX series American Horror Story is proving to be quite comment-worthy on my About.com site, with some folks objecting to the way a character with Down syndrome is depicted and treated, some folks saying it's just a TV show and we're supposed to object to the way the character's mother treats her, and some folks glad just to have someone with Down syndrome on TV at all. The "lighten up" contingent points out that the use of the word "mongoloid" is supposed to clue us in that Jessica Lange's character is decades out of date in her thinking ... but you know, it wasn't that long ago that I argued with a high-school English teacher about whether it was proper to put that word on a vocabulary list (I lost). Abortion rates of children with Down syndrome -- and horror stories like this one about the abuse of individuals with intellectual disabilities -- leads me to believe that we are not in the kind of accepting society that can brush off aberrant depictions as all in good fun. At any rate, FX just renewed the show for a second season, so those who have hoped to get rid of it will have to rail against it for another year (assuming the character of Addy stays around, in some form or another).

Monday, October 31, 2011

Trick or ... Aw, Never Mind: Maybe it's the snow or the warnings about live electrical wires in the street, but costumed kiddies have not been beating a path to our door this Halloween night. We've had one little group so far, and it's looking more and more like that bag of candy bars is ours. Living on a cul de sac with no young children for neighbors seems to be the key to avoiding trick-or-treaters. I really wouldn't mind a little more action. But this year, the parkas and snow boots do kind of ruin the costumes. Anyone stopping by your home tonight?
Our Tuition Dollars at Work: For an example of customer service done brilliantly via Facebook, I direct you to the page for Bergen Community College. Students post questions and concerns, and are promptly answered by a very polite man/woman/artificial intelligence who does not mind answering the same "Is the college closed tomorrow?" question over and over and over. I like the way he/she/it starts each answer with the particular student's first name, and the way, in response to a poster expressing sympathy over all the annoyingly repetitive questions, he/she/it replied, "It's cool. Keep on truckin'." We had a lot of good entertainment last night checking the page out for updates, for patient BCC-man replies, and for hyperbolic statements from students about the aftereffects of Ridiculous October Snowstorm 2011. To the kid who suggests it's like World War III out there, let me say: Honey, if the worst that World War III brings us is downed tree limbs and electrical wires, mankind will be unbelievably, undeservedly lucky.

Saturday, October 29, 2011

Nature's Own Little Halloween Trick: So it's snowing here in the northeast, for no other reason than to mess with us, as far as I can tell. We had weeks and weeks of rain and flood and hurricane, then about five minutes of nice fall weather, and now it's snowing? Really? Whatever. For now, we have electricity and therefore computers and can amuse ourselves nicely. If the power goes out, I'll be playing UNO games with my son by candlelight until I can no longer hold a hand. Is it spring yet?

Friday, October 28, 2011

Let's All Move to Vermont: Just finished the latest episode of The Inclusive Class, on which Nicole Eredics and I were very honored to have inclusion guru Dr. Paula Kluth as a guest. It was a very interesting conversation, and I believe our very first show to go over time and be cut off in mid-sentence (at least for live listeners, of whom I can't believe there are very many first thing Friday morning). I just didn't want to interrupt while Paula was talking about all the things parents can do to promote inclusion. Often when I hear inclusive classrooms described, it just seems like a pipe dream, but her suggestions seemed fairly practical and possible, if you can drag the dinosaur that is your school district out of its cave.  For those who wonder, as I often do, where this "inclusion" people speak of is actually being done well, Paula revealed that Vermont is at the top with about 60 percent of students with special needs included, and Utah is at the botton with about 2 percent. But of course, for many states, things vary from district to district and school to school. How's inclusion going where you are?


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Thursday, October 27, 2011

Self-Determination Is a Life Skill Too: I like what this post on Radical Neurodivergence Speaking has to say about self-advocacy, which is that it's always important and not always what we as parents might like. Which is to say that a child saying "No!" is an act of self-advocacy. A child refusing to do something she doesn't want to do is an act of self-advocacy. A child digging in against a therapy exercise or a homework assignment or potty training is an act of self-advocacy. And that's one of the reasons why I think it's really important for parents of children with special needs not to get into power struggles with our kids, and to let them have whatever power they're able to exercise over their bodies and their environments. Short of safety issues, there is very little reason not to give kids a choice when they want one. Before you force something on your child, think about how you would feel if the situation was reversed. If you would not like it, think a little more creatively and see if there's a way to get what you need while still giving your child a win. Convenient as it may be, you don't really want to teach your child to always acquiesce to a more powerful person.
Zero Tolerance Can Be a Bully, Too: A post on the blog Thriving this morning has me thinking about bullying and the proper response to accusations. There's a major bullying crackdown going on at my son's high school, and that sounds like a good thing, but I'm not so sure. Many of the accusations of bullying turn out to be little more than misunderstandings or minor disagreements -- but each has to be investigated, and a number of complaints against a particular student will result in suspension or expulsion. Great in theory, but significantly problematical if you have a teenager with special needs whose behavior can appear to be provocative when it is in fact an innocent and predictable function of his particular disability. Zero tolerance is not nuanced enough to take that sort of thing into account, and it makes me worry for my son every day.

I think, too, of my daughter, who felt bitterly that she was bullied by boys -- fellow special-education students -- in several of her resource-room classes. As her language and social skills have advanced, she has come to realize that she was misinterpreting their behavior, and the boys in question had some problems of their own that kept them from realizing that their joking around wasn't having the intended effect. I don't think coming down hard on her "bullies" and removing them from school would have been good for anybody, but it would have been most disastrous for them. What was called for was a teacher to have a good talk with all the students about words and hurt feelings and reading social cues. As much as we would like it to be, as righteous as it feels, bullying is not always black and white. Maybe it never is.

Wednesday, October 26, 2011

I Nag About as Well as I Floss: My son just went to the dentist, and miracle of miracles, he did not get a lecture about brushing more. Which is a good thing, because nagging him to brush has been a source of some tension lately. I've been feeling like a terrible parent when, at the end of the day, tired and lazy, I take him at his word when he says he's brushed even though I'm reasonably sure he's done no such thing. In the morning, rushing to get to school, I also believe him when he goes into the bathroom for five seconds and assures me he brushed. Calling him out for a liar in these instances generally starts a spiral of nagging and digging in that sets both of us on edge, so I guiltily put it in the "battles I will not fight" basket. It's a huge blessing that he apparently has teeth that really don't care so much either way.
Sadly, Klout Doesn't Make Your Kids Listen to You Any Better: If you write a lot on the Internet, and particularly if you are fortunate enough to have people read what you write, the day will come when you do a Google search and see something you've created in the top spot. And you'll feel proud and honored and, if you get paid by the page view, jubilant, but at least one small part of you will say, "Crap, I'm the #1 authority on this? How can that be?" I had the same feeling when someone mentioned on Twitter that according to Klout, I am the second most influential person in the area of special needs. And, thank you very much! That's terrific! Except ... really? That seems unlikely, and also like a lot of responsibility. Certainly, as they say in Hollywood, it's an honor to be nominated. But Klout seems kind of like the Golden Globes -- there's really no meaningful process for determining them, yet everybody acts like they're important. Still, if you've K'd me recently and inflated my influence, thanks a bunch!

Tuesday, October 25, 2011

Not All Who Wander Are Lost: You know what I'm tired of? I'm tired of reading books about fetal alcohol spectrum disorder that are filled with despair and lost hope. I'm tired of case studies that involve prison and sexual abuse and family disruption. I'm tired of stories about adoptive parents tearing out their hair and lost boys and girls whose only remaining purpose in life is to be a cautionary tale. Not to say those things don't happen, or are even uncommon, but they're not the whole story. They're not my family's story. They're not my son's story. I can't believe that he is the only one who is bucking the trend, that we are the only family that has learned from research and from best practices and found a way to improve the odds. I'm not saying, I would never say, that we should stop telling the sad stories. But could we tell the hopeful ones sometimes, too?