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.

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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.)