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.)

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.

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:

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 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.

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

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.

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?

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?

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?

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?

Readers' Choice, Readers Nagged: So the About.com 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.

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.

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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.

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.)

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.

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

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.

"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.

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

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

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.

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?

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.