Wednesday, December 19, 2012

Doing My Bit to Conserve Paper: Christmas is rapidly approaching, and once again it looks like we're going to be slackers on the Christmas card thing. If it was just a matter of sending out cards, we could probably hack it -- but I have enough far-away, out-of-touch friends and family members that I feel a need to write a Christmas letter, and because I'm a writer I feel a need to write a creative and memorable Christmas letter, and so it gets put off and put off and put off until it's March. We actually have some big news to share this year -- my son graduated high school and started college, and those are both fantastic and celebration-worthy accomplishments. We had a great party for his graduation, and a nice family vacation at the Trapp Family Lodge in Vermont, a place I've been wanting to get into with a timeshare trade for years. There was also some not-so-fun news, like my son's hospitalization in March for a ruptured ulcer. There's the stuff of a pretty rockin' end-of-year letter, to be sure, but first I have four or five manuscripts to edit, articles to write, winter clothes to take out of storage, shopping to finish up, college grades to obsessively refresh a website until they turn up ... Maybe I can just send cards with a link to this post?

Friday, October 26, 2012

Do Not Like: It used to be that I was eager for the election season to end so that the campaign commercials would stop. Now that I do most of my TV watching on DVR, those ads don't plague me. Instead, I can't wait for the election season to end so I can watch my Facebook, Twitter, and Google+ feeds without being under constant assault. I've always believed that it's impolite to discuss politics unless you're sure that everyone in the conversation is of the same mind, and I'm rarely pulled into conversations or lectured to by friends and acquaintances in the face-to-face world, but online, oh my, anything goes, with people posting outspoken messages and graphics in favor of their candidate and hurling sarcasm and invective against the opponent. Do folks think that their Facebook friends all share the same beliefs, so it's okay to be nasty and sarcastic and in-your-face about it? To post rude things and then blast people with different opinions for doing the same? Geez, people, I don't want to see any of it. It makes my stomach hurt, and no "hide post" button or scroll through works fast enough. I'll be so relieved when everybody gets back to just posting cute pictures of cats.

Thursday, October 25, 2012

Just Chillin': My aging laptop has started taking periodic mini-vacations throughout the day. It doesn't freeze solid; I've learned that if I wait a bit, three to five minutes, it pulls itself together and gets back to business. It's annoying as heck, a real roadblock to my productivity ... and also, on some level, probably good for me, a forced pause in my screen-staring, a reminder to blink, take a breath, walk around, read a book. It occurs to me that this is the kind of thing some clever life-coach type might package and sell, something that pauses your machine at set intervals to make you meditate or some such. It's not something I'd go for -- I'm so stuck on multitasking I'm writing this blog post on my phone while I wait the beach ball out -- but I can see a certain appeal.

Monday, October 22, 2012

The Correct Answer Is WTF: I've been trying not to help my son so much with his college math homework, and today he did almost all the problems in his computerized lesson independently. But there was one that, hoo boy, has just about been the death of us all. It was a three-part story problem -- and right there, I want to just weep -- but my guy went through all the trouble of converting mixed numbers to fractions and multiplying and reducing and converting and LCMing and subtracting, every step right, except the computer says the answer's wrong. He does it again, I do it again, we do it again, my husband comes home from work and does it a couple times, and there's a different wrong answer each time. At this point, the kid's hysterical and the grown-ups can't let it go -- it's personal now, you know? One wrong answer's not gonna scuttle his grade, but this is a remedial class for kids who scored lowest on the entrance exam and need extra support. Is it helpful to have them do a problem that brings a whole family to its knees? Have mercy!

Thursday, October 18, 2012

Leaving Some Learners Out: Some kids aren't creative. Is it okay to say that? When we're thinking about all kinds of minds and all kinds of learning and varieties of educational approaches, is it possible to acknowledge that for some kids, rote learning works? I've got kids for whom plain old flash-card drills worked like a charm, for whom computer programs that do simple reinforcement are successful and computer programs that are fancy as all get-out with cool stuff atop cool stuff do not. If my kids need to read a manual to figure out how to use the educational software or app or process, if they need to listen to a lengthy demonstration, if it's not obvious immediately, they ain't gettin' it. This is how their brains work; aren't we supposed to be celebrating the way each individual's brain works? I feel the pendulum swinging away from traditional techniques and so far into creative ones that we're still not serving a chunk of kids.

Monday, October 15, 2012

Permanent Alcohol-Induced Brain Damage? Hi-larious!: I should know better than to read round-ups of lines from celebrity roasts. But I made the mistake of following a link from the blog A List of Things Thrown Five Minutes Ago to an article on Grub Street NY that claims to list "The 22 Best Lines From Last Night’s Roast of Anthony Bourdain." The lines were pretty rough and nasty, as is apparently expected for roasts, but then I came up on this one from alleged comedian Bonnie McFarlane:
"I didn’t wanna be mean tonight, but this is like a roundup of people with fetal alcohol syndrome." 
This was a preface to a riff on how ugly the men in attendance were, which also included a har-de-har-har about people deformed by "Japan's nuclear explosion."

And this is funny ... how?

It wasn't that long ago that Wayne Brady used Down syndrome as a way to insult the appearance of a roastee. He's since apologized, but ... sheesh, is this really the best that people who supposedly get paid to be funny can do? Use individuals with disabilities as a reference point for insults? They don't even have the cover of those who claim they use the R-word in a way that has nothing to do with people with intellectual disabilities. These cracks are clearly and purposefully insulting someone by comparing them to an individual with fetal alcohol syndrome or Down syndrome. There's no gray area here. And that's no laughing matter.

Look, if you want to roast someone and insult them in the grossest, most profane, most obscene way you can think of, fine, apparently there's an audience for that, go get 'em. The people who attend these things know they're going to get it, and can afford to be good sports. But leave my kid out of it. There's nothing at all funny about fetal alcohol syndrome. It's not a joke.

And for what it's worth, my kid is friggin' adorable. The guys in that room should be so lucky as to look like him.

Monday, September 10, 2012

Do You Really Want to See Everything That Goes On in Your Kid's Classroom?: A post on Disability Scoop this morning announces that "Special Education Parents Want Cameras In Classrooms," and certainly some special-education parents would like that, and some other special-education parents would like that some of the time, and some might want that for reasons different than other parents might want it (like to prove that their kid is too smart/well-behaved/mature/spectacular to be stuck in a class with those kind of special-education kids, if you know what I mean, and if you look at this video you certainly will). Cameras in the classroom might protect kids from abuse, and they might protect teachers from accusations of abuse, and they might create just miles and miles of boring videotape that we will feel obligated to watch, and they might give us a window into things our kids do that really, we need to know about so we can correct the behaviors, but it's been kinda comforting not to have to deal with. Ignorance can be dangerous, but it can also be bliss, or at least a welcome bit of respite.

My son started college last week, and one of his accommodations is that he can tape record classes. That's something plenty of parents of kids in elementary school and middle school and high school would love to be able to do, to listen in to what really goes on ... but he doesn't want to request it, and I don't have the nerve to force him. If the tape recorder could be programmed to just record the part where the teacher says important things he needs to know, I'd push him to ask, but that's not going to happen. It's going to record awkward contacts with his peers, it's going to record him giving an answer that reflects lack of understanding of age-appropriate norms, it's going to record things that are going to break my heart. Or at least, I imagine it will. That's what I imagine happening with cameras in classrooms, too -- they're not going to just record abusive situations, they're going to put your child's every embarrassing action up to the scrutiny of everybody else's mom. Worthwhile to prevent abuse, I guess, but there's collateral damage to be considered.

For now, I'm going to let my son skip the recording, and call it promoting his independence.

Wednesday, August 15, 2012

The Kindness of Strangers: Parents of kids with special needs often talk about that look, the one that strangers give that makes it clear they know there's something different about your kid. Sometimes that look raises our hackles, when we're feeling all inclusive and hey my kid is just a kid like any kid what are YOU looking at. And sometimes, oh my goodness, we count on that look to buy us a little leeway; maybe we even prod our child to act just a little weirder so we can say, can't you tell this is a kid with a disability? Have a heart, whydon'tcha. The indignation in the first case is righteous, and maybe that makes us hypocrites for playing on differences in the second, I don't know.

But I do know how grateful I was when, at the community college my son will be attending, a passing custodian took in my boy's jumping and flapping and grunting and shirt-chewing and over-involved mother, sized up the situation, and reached out in the kindest way, introducing himself and his partner, getting my son's name, assuring him he would do great at school, and encouraging him to stop and say hi or ask questions whenever they saw each other. Maybe this thoughtful gentleman would have done the same for any random neurotypical, but I doubt it. It seemed clear to me that this was a specific outreach he does to the obviously odd. And I thanked him profusely for it. There are plenty of times we must revile the coldness of strangers. But it's such a relief when they're cool.

Wednesday, August 01, 2012

We Are the UMCCDSP. Appease Us!: Just read an article that mentioned "uncommitted middle-class cul-de-sac people" as sort of a midpoint between the Tea Party and the Occupy-ers. I don't know about that, but since I am all of those things, I'm going to adopt "uncommitted middle-class cul-de-sac people" as my personal political affiliation, and look forward to being pandered to by candidates big and small. Come and get us! Just off the top of my head, I think the major issues for UMCCDSP would include:
  • Big trucks that try to turn around in cul de sacs, and somehow make it, but cause us to be very nervous about our cars parked on the street
  • Cars that turn around in cul de sacs, and either drive too fast or drive so slowly they make it hard for us to get out of our own street
  • People who park in front of our driveway when they're picking their kids up at the high school. Really, people? Really?
  • Ditto people who park at the stop sign. Who does that?
  • Drivers on the main road who won't let us turn out of our little cul de sacs. They don't even slow down. Hey, UMCCDSP have places to go too, y'know? And no other way out!
I look forward to hearing these pressing issues debated in campaign ads and speeches. UMCCDSP, unite!

Wednesday, June 13, 2012

Ghosts of Infections Past: Back in 1997, when my son was about four years old, he had a positive tuberculosis test. There followed a chest X-ray, which was clear, and we figured he had maybe been exposed to TB at his Russian orphanage but never contracted it. He took medication for six months, and that was that ... except he's never to have the TB skin test again. That last caution is the only thing that's kept this weird little medical episode in my mind; I always mention it to school nurses, and anytime we have to fill out a medical form his pediatrician has to document that treatment as a reason for no recent testing. It's one of those relics of the past, like a scar or the mark on my daughter's ankle from an IV in infancy. There, but who cares.

And yet, this week, it roared back to mess us up. He was slated to have a summer job working in the food-service department at a hospital. I'd heard that he might need Hepatitis B shots, which he's had, but no one mentioned a TB test until recently, and ... well. According to the paperwork from the hospital, to work in a healthcare setting, he needs to not only document his TB treatment but also present a recent clear chest X-ray. He doesn't have one of those, and our insurance won't pay for one unless there's a health need, which there isn't. Paying for an X-ray so he can have a part-time minimum-wage job doesn't make much sense. So now there's a scramble to find him another job placement, and somebody else for his, somebody with an easier health history.

Really, it's probably just as well. Hygiene isn't my guy's strong suit, and I was a little worried about what he might pick up at a hospital. It's just a weird feeling, as someone who is constantly dealing with current challenges and maladies, to get sideswiped by an old forgotten issue. Things fade, but they never go away.

Saturday, May 26, 2012

SPD, DSM, IDK: Saw a post on the blog Special Happens on The Last Chance for Inclusion of Sensory Processing Disorder in the DSM-5. Now, I'm a big believer in sensory processing disorder or dysfunction of sensory integration or sensory integration disorder or whatever we're calling it this week -- I even wrote a book on the subject, and I'm convinced that a diagnosis of sensory integration problems, awareness of them, and therapy for them helped my son out a lot. I'm all for having it officially recognized, and officially respected, and officially paid for by insurance. But am I the only one who feels uncomfortable with having it classified as a psychiatric disorder? That suggests a whole different type of therapist than an occupational therapist. Is there such desperation for legitimacy that proponents will take it any way they can get it? Apparently, the best shot may be to have sensory processing disorder classified as part of autism, and ... hoo boy, that's sure an umbrella not every kid with sensory issues fits under, and if all the rest of us are about to become second-class citizens in this as we are with every freakin' other thing our kids have in common with autistic kids, I shall be quite put out. And while getting a medical seal of approval may have some advantages, doing it this way is not, I think, going to make parents more eager to see these problems in their kids and embrace them. I guess if this is the only way to rise above quackery in the eyes of professionals, I'd prefer sensory integration remain some out-there theory that might actually help your kid. But maybe that's just me.

Tuesday, May 22, 2012

Bike Contest Announcement: I've been writing here about Friendship Circle of Michigan's bicycle giveaway, and the winners of new adaptive bikes have now been chosen. Visit the contest's Facebook page to find out who won, and read their stories. Congratulations to the winners, and to all who participated and shared their bicycle wishes.

Monday, May 21, 2012

Prove It: Got a request for additional documentation from the specialized services department at the community college my son will be going to. It came on Saturday, of course, when I couldn't do anything about it, so I've had all weekend to stew. It's asking for proof of his need for academic accommodation that I'm not sure I can get, and while it's possible that when I talk to them later today there will be some more accessible ways to get him this help, the idea of him losing it has got me thinking about whether he really needs it. He's received lots of special-education help over the years, including a one-on-one paraprofessional, but in high school it's become apparent that his need for academic support isn't that great, it's behavioral support that he benefits from. Academic support is what the college gives, and I'm not really sure at this point that he needs note-taking and tape-recording and a calculator and a tutor and extra time on tests as much as he just needs a general awareness among his professors and maybe the security people on campus that he may behave in unexpected ways. Chances are, everybody will assume he has autism the way they have in high school, and perhaps will extend him some grace based on that. The college does have a lot of support systems for mainstream students, too -- is it possible he could shed his special status and still survive? It's a scary thought, but kind of exciting, too.

Tuesday, May 15, 2012

Senior-Mom-itis: My son's paraprofessional wrote me a note yesterday, in the wake of a couple of failed quizzes, suggesting a problem with my son's attitude. I mentioned that maybe it was senioritis, and maybe it is. One thing I know for sure, though, is that I have senioritis. Man oh man oh man, am I ready for him to graduate. Am I ready to not get notes implying he should have studied better for tests when the tests weren't structured in a way he can pass and neither were the study materials. Am I ready to not have to read an entire book on a weekend to help him with homework. Am I ready to not have people believe him when he says things that are obviously catchphrases he spouts when he doesn't want to talk about it. Like a kid who basically likes school but can taste graduation, I really do like my son's para and his teachers, and I think everyone has done an amazing job with him, and I'm forever grateful, but I am outa here. It's just weeks away, the end of years of IEP meetings and classroom struggles and homework as we've known it. My brain is there already. And while I know that college will have challenge of its own for him, we're both ready for different ones. Listen. Pomp and Circumstance. Can you hear it? So close. It's a nice day to kick back and dream.

Monday, May 14, 2012

Bike Giveaway Voting Begins: I've been blogging here about entering your child into Friendship Circle of Michigan's contest to win a free adaptive bike, and with the nomination phase over, it's now time to read the stories of more than 150 young bikers-to-be and vote for the ones you'd like to see win. According to the rules, you can only vote once for any particular candidate, but you can vote for as many candidates as you like. You can also comment on and share your favorites. The fourteen top vote-getters will get their bikes, and four more will be chosen as Director's Choice winers. Voting ends at 4 p.m. this Friday, May 18, and you have to "like" Friendship Circle of Michigan's Facebook page in order to vote.

Thursday, May 10, 2012

Bike Giveaway Deadline: Wow, time flies! It's May 10, and that means this is the last day for you to get in on the Great Bike Giveaway from Friendship Circle of Michigan I blogged about a while back. Next week, we'll all get to vote on the contestants, but if you want your kid in the running (biking?), get your picture and caption in today, people. For more information, check my earlier post or go directly to the contest page.

Monday, May 07, 2012

Not So Super: I've written a lot on my site about slurs against people with disabilities in films, but it's been a while -- maybe since Orphan? -- since the adoption community has gotten up in arms over a hurtful movie line, plot, or portrayal. There's a film in theaters now, though, that's earning some outrage, and unfortunately, it's the one that also earned the biggest first-weekend opening ever. That would be The Avengers, and the fact that Thor offhandedly explains the behavior of the film's villain, his brother, with the throwaway line "He's adopted" has many adoptees and adoptive parents feeling like the Hulk, particularly when it gets a laugh from the audience. Like so many slurs, it's a line that would not at all be missed if it had been snipped from the script, and it's something that surely someone, somewhere along the way, someplace in the cast or the crew, could have pointed out as needlessly offensive. There are plenty of movies that intend to offend, but it's almost more discouraging when ones that clearly do not have that agenda let lines like this in because nobody thought it through. If you'd like to let the filmmakers know that's unacceptable, there's a petition at seeking an apology.

Monday, April 30, 2012

Teachers Need to Know About More Than Just Autism: Saw a post on Disability Scoop today about legislation to "establish a five-year federal grant program to allow school districts to team with universities and nonprofits to train general education teachers and other school staff to best support students with autism." And that's a great idea, as far as it goes. Absolutely, general-education teachers and school staff at large would benefit from a greater understanding of autism. And of ADHD. And of learning disabilities. And of food allergies, goodness knows. And of fetal alcohol effects, to mention one that's particularly important to me. And of hearing impairment, judging by how many stories I've heard of teachers refusing to wear mikes. And of any and all disabilities of children in their classrooms and lunchrooms, on their playgrounds and buses. Congrats to the autism lobby for focusing so much attention on that diagnosis, but the problem of teacher and staff ignorance is way, way bigger than autism. Never let schools feel that once they've got that, they can stop. (And parents, if you're the one who has to do the educating, without the aide of teams from universities and nonprofits, I have some suggestions on my site, and places where you can share yours.)

Thursday, April 26, 2012

Spy Kids: All the talk of parents wiring their kids to capture evidence of verbal bullying by teachers has me remembering a post I wrote on last year about wishing I could rig up a stealth lunchbox cam to capture cafeteria interactions, and the comment it received from someone who claimed to work with youth with disabilities, saying I scared him and calling me overprotective and neurotic. Guess he really should be scared, as those stealth devices move into classrooms and target the professionals. I just wanted to know how my kid was doing with his peers.

And I still do. My son's got some social stuff going on now that's causing him anxiety -- maybe to the point of contributing to the busted ulcer that landed him in the hospital last month -- and it's really hard to get a handle on what's happening. It's like a high-school version of Rashomon, with everybody giving me their own subjective report, many of them further limited by the developmental level of the reporter. Part of me would love to get a surveillance tape on all those teenage social interactions, find out if my son is really saying the things he claims to be, find out what others are saying to him, provide some useful advice. And part of me is pretty sure I'd hear things that would break my heart and make it impossible for me to send my boy to school.

For now, my strategy is to hold my breath, cross my fingers, and pray for the swift arrival of June and graduation and freedom from these particular fears. In college, tape-recording his classes will be one of his accommodations, and there'll be no secrets.

Tuesday, April 17, 2012

The Great Bike Giveaway Gets Rolling: There was a time when I was actively on the lookout for an adaptive bike for my son. I never did get one, and eventually other priorities grabbed my limited parenting-project attention span. He never did get to be a biker, and now, given his age and size, any future bike ambitions will have to  be undertaken on his own initiative. If you're just now at the point where you'd like a bike that's right for your special child to suddenly appear in your driveway, take a look at the Great Bike Giveaway being presented by Friendship Circle of Michigan starting this week. Even if you don't win, it seems like a good way to raise awareness among families and communities of just how much our kids want what every kid wants. Here are the details you'll need:

The Great Bike Giveaway
Many children with special needs require an adaptive bike to enjoy the freedom and fun of bike riding. Unfortunately many parents are unable to afford an adaptive bike.

Here is your chance to win a free adaptive bike!

Friendship Circle of Michigan has partnered with adaptive bicycle companies to give 18 children with special needs a free adaptive bicycle in a contest called "The Great Bike Giveaway."

What is Friendship Circle?

Friendship CircleFriendship Circle of Michigan is a unique organization that creates friendship in the lives of 3,000 children with special needs by providing over 30 weekly and seasonal programs. Over the past few months Friendship Circle realized that many children with special needs miss out on the childhood joy of bike riding because their physical or cognitive limitations make riding a bicycle near impossible. For this reason they have created a contest that will enable 18 children with special needs to win a bike. This contest will also enable people to learn more about Friendship Circle and help raise awareness for all children with special needs.

Contest Details

The Great Bike Giveaway is a free contest that is open to all families who have a child (or children) with special needs.

Submissions Step One: Submit your photo and caption

  • The Great Bike Giveaway is a Facebook Contest. Visit Friendship Circle of Michigan's Facebook page to submit a picture of either your child with special needs or a creative picture that portrays "why" your family would like an adaptive bike.
  • Include a caption of 250 characters or less explaining your child needs an adaptive bike.
  • The submission round opens at midnight on April 16th and closes at 11:59pm on May 10th.

Step Two: Vote & Share

  • During the week of May 13th-18th, Friendship Circle of Michigan will display all submissions for a public vote-a-thon.
  • Vote for your submission and share with your friends and family. You can vote once per submission for the duration of the contest.

Step Three: The Winners

  • The top 14 contestants with the highest number of votes at the end of the contest will win their choice of bike (the highest number chooses first, the runner up chooses second and so on).
  • Friendship Circle of Michigan will also choose four "Director's Choice" winners based solely on the content of their submission, not on the number of votes.
If you are a mother or father of a child with special needs...take a few minutes and join this very exciting, very unique contest. A couple of minutes could win your child a slice of childhood they will cherish forever.

A Special Thank You To Our Sponsors


Monday, April 16, 2012

Easy for You to Say: My daughter did a speech for a college class about Special Olympics last week, and did a great job with it. Listening to her practice and watching the video of her performance, though, one thing that struck me is what a mouthful the term "intellectual disabilities" is. I remember, early in my days as a guide for, blogging about the push to replace the term "mental retardation" and wondering what wording would be best, and "intellectual disabilities" is a fine substitute, I think ... but when you have to say it over and over again in a speech, and pronunciation of big words is not one of your personal strong suits, it starts to be a liability. It made me wish there was an abbreviation that would be readily understood, but "ID" is too strongly identified with identification to work, particularly since some members of her class may unfortunately have been hearing the term "intellectual disabilities" for the first time. I think she was a great ambassador for Special Olympics and for respect, but for that particular terminology? Maybe not.

Friday, April 13, 2012

For Better and Worse: Got one of those good news, bad news reports about my son the other day. Two scores were higher than usual, one good, one bad. The goodness of the good one makes it hard for me to write off the badness of the bad -- if the evaluator in question is smart enough to see the good, I can't say, "But that other thing? Way wrong." I'm pretty sure it is way wrong, but there's enough of a seed of doubt to make me think it could be right-ish. Little bit. So now, even though I've got the good score I've been hoping and hoping for since the evaluation was done, I can't completely enjoy it because it's tempered with worry over the bad one, and worry that the people I need to be impressed by the good score will be distracted by the bad one. Aw, c'mon. Nothing's ever easy, is it?

Saturday, April 07, 2012

Well Aware: Recently, my son was offered the opportunity to apply for two college scholarships for students with autism. Very nice of folks to think of him. Only one problem: autism is not his diagnosis. A little worrisome that school personnel who should be familiar with his records don't know that, but also, a little frustrating that autism scholarships seem to be where it's at. I've looked around for FASD scholarships and come up empty. Nor does his college have a special buddy program for students without autism, as it has for students with. Not that I begrudge kids with autism their college assistance. It's just that autism awareness seems to come at the expense of awareness of anything else. I think of it every time I pay for my son's speech therapy, knowing that if he had autism, the state would insist our insurance cover it. And I think of it every time someone reacts to recent statistics about a rise in autism with something like, "Well, now we really need to step up our demand for services!" Please, leave some for the rest of us, willya?

Tuesday, April 03, 2012

Bad Blogger. Bad!: I've been pretty absent here for the last little while, haven't I? March was a lost month. The one-two punch of Readers' Choice Awards madness in my professional life and emergency abdominal surgery for my son in real life has distracted me, and my one-foot-in-front-of-the-other path through it all pretty much bypassed this space entirely. But the contest is over now (please see and congratulate the winners!), and my son's scar is healing to the surgeons' satisfaction and he appears to be back to normal (although with a kid who doesn't feel pain until it's at the level where you scream at people in the ER to make it go away, it's hard to be certain), and I'll try to stop by here more regularly. At any rate, I did finally update the listing of Inclusive Class radio shows. So that's something, right?

Monday, February 27, 2012

Be Yourself: I had an extraordinary experience with my son last week. Literally extra-ordinary, out of the ordinary, something I always hoped for but never thought I'd see. He had an important evaluation for which I wished dearly that he would show the doctor his best self, display all his abilities. This has always been a pipe dream; generally, doctor appointments have caused him to proudly bring out all his very oddest behaviors and talk more to his imaginary friends than to the professional in attendance. Which in turn causes said professionals to look at me funny when I talk about how well he's doing and how capable he is and how included he is in school and how college seems like a good plan. How well I know that proceed with caution, mother is deluded look. This particular evaluation came just a day after he'd had an ambulatory EEG, 48-hours of head-wrapped misery, and I would have very well understood if his supply of stress-tolerance was drained to the last drop. But this day, this glorious day, he went into that office and talked amiably in a normal tone of voice and focused well on all the tests and did not complain and did not talk to invisible dogs and truly did the best he could do. Wow. How do I make that happen again?

Friday, February 24, 2012

Readers' Choice, Readers Nagged: So the Readers' Choice Awards is now in the voting stage on my Parenting Children With Special Needs site, with five finalists in each of eight categories. Please consider picking a favorite in each race and voting for it once a day -- make it part of your morning Web browsing routine. There are some great resources being recognized, and it would be fun for this friendly competition to feature some lively voting. You can find a list of all the categories with links to details about the finalists and to the polls on my Readers' Choice Awards Round-Up page. Thanks for any participation you can throw in that direction.

Friday, February 17, 2012

Good Inclusion Stories: Today's guest on the Inclusive Classroom radio show was Dan Habib, who made the film Including Samuel about his son's experience in school. Replay below for an interesting conversation on what makes a successful inclusion program work, and what needs to be done to make that an attainable goal for every student, even the ones who seem impossible to accommodate.

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

Thursday, February 16, 2012

Who Wouldn't Like an Afternoon Nap?: We often hear about teenagers not getting enough sleep, but I wonder, does when they get the sleep matter? My son comes home from school and internship exhausted and often naps for a few hours. He goes to bed at night at a normal time, but often stays up listening to music or watching videos on his iPad. His pediatrician didn't seem to think there was any problem with that, but his neurologist clearly felt he was unable to go to sleep at night because of his naps, and he needed to nap because of his nighttime sleeplessness, and clearly the naps should stop. My feeling is that he's tired because managing his behavior at school and internship is stressful, he falls asleep while relaxing afterward, there's absolutely nothing wrong with that, and if the sleeplessness at night was bothering him he'd let us know. It will all be a moot point if he gets a job at some point, as has been talked about a few times with the transition coordinator, and can't nap; but for now ... is it so bad to let him sleep during the day if it doesn't get in the way of homework or activities? Heck, if I could schedule a midday snooze, my head would be on that pillow.

Monday, February 13, 2012

Some Typical Milestones Suck: My monthly contribution to Hopeful Parents is up today, about high-school girl trouble and my desperation to just get my son through to graduation already. If you're mourning that your child with special needs will never have a relationship and will miss out on teenage romance and all those ordinary experiences of high school, I'll tell you ... don't be so sure, and don't be so sorry. Developmental delays do not make heartache any less lousy. (Note: If you get a restricted message on the Hopeful Parents site requesting a log-in, just hit cancel and the page will load. Don't know what's up with that.)

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 2012 Readers' Choice AwardsMore Nomination Nagging: In case there's anybody here who hasn't already been nagged by me on my 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:

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

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:

Listen to internet radio with SpecialNeedsTalkRadio on Blog Talk Radio

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 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 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 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 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.