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?
There Are at Least 150 Other Ways to Say 'Stupid': I'm percolating an article in my head about bad excuses for using the R-word, which will include a listing of synonyms for those who fear that they can't say anything anymore without it. While I'm working on that, here are two posts I've seen this week that save me the trouble of making some arguments, 'cause I can just link to them: "Words Matter" from The Thinking Person's Guide to Autism and "Just Don't Use That Word" from Radical Neurodivergence Speaking. Both make a good case for the fact that no, you can't separate those words from individuals with intellectual disabilities, even if you want to, even if you don't aim them at one. Really. It's true. Don't be a nitwit.
Because Everybody on NCIS Has to Have Family Issues: My husband and I seem to be consistently a week or two behind on TV viewing, knocking shows off the DVR just in time for a new one to be added to the pile. So I just now watched the NCIS episode from October 11, and what do you know, an adoption plotline for Abby. That is, she's just discovered as an adult that she was adopted, not that she's adopting. (Sorry for the spoiler if you're even farther behind in your viewing than we are. Which makes me feel all superior.) It seemed kind of thrown in there, since the show isn't huge on personal stories and tends to revisit them sporadically. Maybe it's just that this is a topic that's sensitive to me in a way that Gibbs's ex-wives, Tony and Ziva's daddy issues, and McGee's grandma being Debbie Fiderer don't. It will be interesting to see when/if they do anything much with the story, but kudos for the degree to which the actor playing the long-lost brother looks believably like Pauley Perette.

Monday, October 24, 2011

Is Big Pharma Behind This Somehow?: So all of a sudden, Vitamin D is a thing for our family. The kids had blood tests with their recent check-ups, and one of them was for Vitamin D levels. It was no surprise that my son was deficient, because he hates milk and will not drink it. But my daughter is very happy to drink milk, and does so often, and so I'm surprised that she's deficient and apparently needs massive doses to catch up. A friend mentioned that she's D-deficient as well. Have I just not been paying attention, or is D-deficiency some sort of Public Health Issue du jour? I await the endless alarmist commercials.
Proving That There Are Bridge Games in Heaven: One of the many things my mom and I had in common was a tendency to fall down. Genetic poor center of gravity or weak ankles, maybe? We both did a mean splat/leap up/declare "I'm okay!" combination, and most of the time, we were okay, though there were scrapes and sprains and deep embarrassments on various occasions. Since my mom passed away, it's seemed to me that I've fallen less, and I've imagined that she's my guardian angel, catching me at that moment when gravity fails. But yesterday, I was taking a walk with my son and I went down hard, on a downhill slope, right on to a knee that's not been in such great shape anyway. No leaping up this time for me, though I did manage to hobble home. Today, I'm feeling sore and worried, and also a little ticked at Mom. If she's going to find other things to do up there, I'm in big trouble.

Saturday, October 22, 2011

That Cause-and-Effect-Thinking Thing Is Tricky, I Know: A challenging thing about raising kids with fetal alcohol exposure is getting them to understand that unanticipated consequences are still their responsibility. If they throw a ball and it happens to break a window, but they didn't intend to break a window, they can't connect what they did to what happened. And they're often puzzled and befuddled by the anger of others over events they see as completely independent and abstract. That seems to be the same sort of thinking applied by people who use offensive language about people with disabilities, whether it's the R-Word or, as has been in the news the last few days, Ricky Gervais's "mong." If they didn't mean offense, there is no offense. If they think of the word as meaning a certain thing, why would anybody think of it as something else? If in their understanding a word is linguistically and historically without emotion and weight, complaints are irrelevant and inexplicable. But you know what, guys? The window's still broke, and that's your baseball on the floor.

Friday, October 21, 2011

Never Trust a Headline: I read enough science articles on the Web to know that headlines are more often than not misleading. And I know why that is, because in our increasingly noisy travels through the world of media, our attention can only be grabbed by big surprising statements. So "Scientists think that maybe" is never going to get as many readers as "Studies show!!!" Reading the article would often clear up the hyperbole, but gads, who reads articles anymore? You take in the headline and the first sentence or two on your RSS reader and then hit the share button. (I am entirely guilty of this. Hey, I've got Tweets and blogs to feed.) So we never get to the "well, really, it's just a couple of nerds talking over lunch, but it could be true!" part, and if a PR person is doing the writing, that part might not even get written. This week's case in point, as dissected by Emily Willingham on The Biology Files: Autism and type 2 diabetes linked because "both are increasing"? (I very much want a study done, or at least a series of alarmist articles, on the correlation between autism and basketball-shorts length proposed by a commenter on that post.)
The Keys are Preparation and Flexibility. Good Luck With That: Had a nice chat with Nicole Eredics and Dr. Sandy Gluckman on The Inclusive Class radio show today about stress as it relates to inclusive classrooms -- stressed teachers making a change in the way they do things, stressed students having to deal with classmates who are different, stressed children with special needs having to deal with a less-structured, less-accepting environment, stressed parents sitting home worrying themselves sick. According to Dr. Gluckman, the key for everybody in that equation is preparation and the kind of flexibility that allows everyone to get what they need in the classroom. Ironically, the very things that seem in shortest supply in schools these days. It makes me stressed just thinking about it.

You can listen to the show using the doohickey below, or follow the link above to go to the show page, where you can make comments and see pictures going by as you listen. Want to catch up on older episodes? There's an archive right here on this blog. You can find it in the future by clicking on the Special Needs Talk Radio graphic in the upper right corner.

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Thursday, October 20, 2011

Test to the Teach: A blog post on Education Week today discussed alternative assessments for special-education students and lamented an amendment that would increase the number of kids exempted from standardized testing (the amendment failed shortly after the post went up, it appears). I understand why disability advocates don't want special-education students shunted off to an evaluation system that offers no accountability, but the standardized tests are such a bad bet for a lot of our kids, especially those who have not been in state-of-the-art inclusion programs and are not being taught at grade level. Testing kids on things they've never had a chance to learn offers no sort of accountability either. I would have loved for my son to take the standardized test for the level he's being taught at and then see the progress from year to year, but that apparently can't be done.

Most parents I know of kids in special education hate the standardized tests and would prefer the alternative assessments. Most teachers I've talked to about it hate the testing but hate the assessments more because they are horrifically time-consuming. Would be nice to find something that is really meaningful for these students, because I believe strongly that accountability is important. All of the current choices fail.
Hope People Police Better Than They Park: A new app sounds like an interesting solution for illegal use of handicapped parking spots -- it allows do-gooders to snap a photo of the offender and send it directly to law enforcement -- but it also sounds like a pretty troublemaking tool to be put in the hands of just anybody. I've heard enough stories of people with legitimate but less obvious disabilities being hassled for rightfully using a spot, and I imagine they'll be getting police reports now too. The thing would have to be used with discretion is all, but I highly suspect the ratio of righteous grievances to nuisance posts would not be what we'd like.
Also, I'm Not a Newborn Baby: Confidential to the lowlife who sent me a scam e-mail through my Google+ profile this morning: Although I did post on Google+ yesterday about a documentary having to do with deaf students, I am not myself deaf or hard of hearing, so it seems extremely unlikely that a deaf organization would give me $150,000, even if the only requirements are being active on the Internet. So I will not be clicking on the link you so kindly provided. I will, however, be reporting your ass to Google.

Wednesday, October 19, 2011

Don't Do Us Any Favors: I've wondered, in my blog, why the growing number of kids with special needs doesn't give their families any sort of clout. If you could add up all the kids with autism and the kids with food allergies and the kids with learning disabilities and the kids with chronic illnesses and get their families to act as one big interest group, wouldn't somebody have to try to cater to us instead of acting like we're an anomaly? Lisa Jo Rudy makes a similar point in Inclusion Is Not an Act of Charity on her new Authentic Inclusion blog. Accommodating kids with differences should be as natural and as expected as accommodating any kid -- if not because it's the right thing to do, then because they're customers and constituents like everybody else. What other group is it so acceptable to exclude anymore? Why should we be happy with whatever inclusion anybody deigns to dole out?
How About Putting This on Regular MTV, and Restricting Snooki to College Campuses?: So I was getting all excited about an MTV series about deaf students at Gallaudet University -- because, as reality series go, how great an idea is that -- and then I saw that it will be airing exclusively on mtvU, a channel shown only on college campuses. I'm all for college students seeing it, but I think it could be of wider interest if it got a wider showing. And then, they could go on to do a similar series about students with intellectual disabilities at a place like Shepherds College or a specialized program at a mainstream university. Seems like MTV has enough hours-full of crap that it could clear a few for something awareness-raising.
If Only Everybody Came With an Explanation for Their Inexplicable Behavior: In a post called "I'm Not Bad. I Am Autistic," the Special Needs Homeschool blog offers a handy and easily understandable explanation for behaviors that are common not only to kids with autism but with other special needs as well. Many of these are typical of my son, who is neither autistic nor bad. Of course, for him, we'd have to add, "I know I walk up and take your keys out of your hand in a way that makes you fear I might steal them. I won't. I just like the way they feel in my hand, and I like talking about where they go, and I like it that I know exactly what kind of car you have and can pick it out in the parking lot from now on. No, really, I'm not going to steal it. I'm not bad. I'm neurologically unique."
We Don't Bite, Unless Provoked: A perfectly nice post on the blog Special Happens seems to have gotten under my skin today. In 'Questions “Typical” Parents Are Afraid To Ask,' the mom of "3 very healthy, athletic, socially adept (ish) kids" wants very much to be correct and polite and supportive to families of kids with special needs, and not be one of Those People. And sure, that's what we want, folks who are thoughtful and not judgmental about our kids' disabilities. At the same time, though, we're not a damn landmine. You don't have to tiptoe around us. In most cases, what you need to know about our kids is that they are kids. The dynamic of what's right and wrong to say is probably exactly the same as you'd feel if someone whose kids were healthier, more athletic, and entirely socially adept tried to pussyfoot around you. But maybe I'm just in an ornery mood today.

Friday, October 14, 2011

What I've been doing

Instead of, you know, posting timely blogs on this site.
  • Spent the better part of two days trying to upgrade my iPhone to the latest operating system and migrate my Mobile Me account to the cloud. At least I got a blog post out of it for, about how what we do for our kids with special needs is kind of like upgrading, too.
  • Tried to be patient while waiting for results of a nervous-making test for my daughter. I gave them a week, then called ... to find out her doctor's office is closed today and nobody else will tell us anything, so now we have to wait until Monday. This is what I get for being a good citizen. Back to nagging phone-calling pain-in-the-butt for me.
  • Got up a head of steam about Groupon and its smug snarkiness toward kids with special needs and their families. Sort of wish I was a member so I could stomp my foot and quit. If you are, please do.
  • Rejoiced in my son's super progress report from school, and the fact that all the things I worried about at the beginning of the year have not turned out to be problems. Still haven't found the switch that turns off the worrying, though.
  • Chatted with Gayle Hernandez and Nicole Eredics on The Inclusive Class radio show about the great work Gayle does as an inclusive teacher in British Columbia. Should have made me happy to hear about inclusion done well, but mostly made me ticked off that all I ever hear is that it's impossible. Clearly not!
What have you been up to?