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 About.com 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 Change.org 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 About.com 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 About.com 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

Kazam

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 About.com, 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.