Friday, December 23, 2011

Three Cheers: Really inspiring show today on The Inclusive Class radio show with guest Sarah Cronk, founder of The Sparkle Effect, which includes girls with special needs in cheerleading squads. If you're wondering how you'd get such a thing started at your child's school, Sarah's website The Sparkle Effect has lots of information, and there are grants and mentors available to help out. What can't be provided by a website, of course, is administrators and school-board members who have the courage and the creativity to take a chance on something different, and young people who are eager and determined to make this opportunity happen for their peers with disabilities. I don't know where you come by that part of the equation -- maybe it will be siblings of kids with special needs, like Sarah, who will lead the charge, or maybe it takes starting inclusion so young that it seems odd to ever leave kids out. Listen to the interview below to boost your faith in the future.

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Wednesday, December 21, 2011

Calling All Kids Who Would Rather Play With the Infield Dirt Than Catch the Ball: A post yesterday on Support for Special Needs on "Scouting Inclusion Policies & Special Needs" reminded me of so many attempts at inclusive activities, and how they don't automatically suit our kids. I know the pendulum is swinging away from special-needs-only activities, but there's going to have to be a range of opportunities with varying expectations in the mainstream to make up for that, and I don't see it yet -- even though it would certainly benefit typical kids of different abilities as well. I chose Challenger League baseball for my son instead of regular Little League because those mainstream teams have become so serious that I knew my guy would not have the focus and would not have fun. If a regular Little League team could be about having fun outside with your friends, cheering for everyone, and not stressing the score, and if it could then provide an inclusive experience with non-disabled kids who also don't want to stress over whether they can catch the ball or get the hit, that would be just fine. Not sure it exists outside the special-needs world, though. Maybe we need to invite mainstream kids to our special groups instead of the other way around.
Do You Hear What I Hear?: I'm trying to imagine what goes through the minds of adults who think it's funny to make cracks about a child's medication in front of that child and his parent. Recently it was Santa Claus in the news for taunting a kid, but I've seen a substitute teacher do it to a kid in her class, and I've had a drugstore cashier do it to my son and me. "Did he take his medication today?" they crack. Har de har har. Santa in this recent story went on to suggest that the child in question should request a jail cell for Christmas, and there's a lump of coal coming his way for that, you can bet. But I imagine we've all had our instances of jaw-dropping comments by people who should know better and should have the feelings of kids and families particularly at heart. Bah humbug all around.

Monday, December 19, 2011

Well, They Didn't Say December 5 of Which Year: Feeling extremely ticked off today at the Warner Brothers Online Store, from which you should not order if you have any particular date by which you wish to get your goods. And if you think, "Hey, I don't need it for a month, even if they're slow, it'll come in time," you are sadly mistaken. As was I, assuming that ordering DVDs on November 25, DVDs marked as in stock, DVDs sold with a stated ship date of December 5, would be a safe bet for Christmas delivery. December 19, and not a sign of them, nor an unsolicited communication from the store updating the information. I've had a few contacts with customer service, and always gotten the kind of reply I expect is in a notebook under, "Say this to irate customers." Oh, it's back-ordered, but it's almost here. Oh, it's going to ship any day. Oh, it just went on the truck. Oh, bull. I'll believe it when I see it. Most likely as a birthday present for my kid instead of a Christmas one. Bah, humbug.

Sunday, December 18, 2011

You've Got a Friend, At Least While the Teacher's Looking: Friday's Inclusive Class radio show was about promoting friendships in inclusive classrooms. And boy, is that sure something that everybody could use some help with. I think programs like the one our guest Heather McCracken was talking about can increase acceptance, and friendliness, and those are very good things. What I think often eludes kids with special needs in the mainstream is true friendship -- the slumber parties and the secrets, the roommates on school trips, the person who is genuinely glad to see you for reasons other than acceptance and understanding and because that's what nice kids do. I'm not sure how you make that happen, or if you can. Starting with the inclusion and the instruction early would certainly help, when kids with disabilities have the greatest chance of being just another kid. Inclusion proponents often tout that the mainstream is where the "real friendships" are, but I sure haven't seen that with my kids. Of the two of them, the one who spent the longest time in self-contained is the one with the longtime close friendships.

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Friday, December 16, 2011

Weeping Alert: Here's the video I mentioned on the radio show this morning, about two 13-year-old friends, one of whom has cerebral palsy, who competed in a triathlon together. More about it, including photos, on the Ams Vans blog.


Wednesday, December 14, 2011

Making Your Own Mistakes (as Your Mom Tears Her Hair in the Background): I've been reading a lot lately about self-advocacy as an essential college skill for kids with special needs—most recently, in a post on Different Dream for Your Child—and, sure, of course, it's true. Colleges don't want to talk to the Warrior Mom. If young people can't speak for themselves, they don't get heard. The thing I'm struggling to accept about self-advocacy now, as my daughter makes her way through college, is that it is not a duplicate of mom-advocacy. She doesn't do things the way I'd do, the way I spent years and years doing when fighting for her was my responsibility. That's somewhat crazy-making. I've had to take a deep breath and remind myself that doing things for yourself often means making mistakes, and learning from them, and finding your own solutions that work for you. We don't expect typical kids to make all the right decisions during their college years—in fact, we rather expect spectacular screw-ups as they find their adult legs. Why should kids with disabilities be any different?

Tuesday, December 13, 2011

Stage Fright: My once-a-month contribution to Hopeful Parents just went up. I wrote about my son's choir concert last week, and what a relief it was in comparison to his third-grade choir concert, at which both he and I behaved not so well. I kept him away from the performing arts after that because -- well, that's what we do, right? We change the environment. We assess risk vs. reward. We look for situations in which the child can be successful. We are wary of planning for failure. It sure is delightful, though, to find that a situation once feared and avoided is now, at the very least, survivable. By both of us.

Monday, December 12, 2011

Let the Boy See the World If He Wants To: That's the theme song for Zach Anner's new travel show on Oprah's network, which finally debuts tonight at 8 p.m. I'm proud to have remembered to set my DVR for it, and I'm looking forward to seeing what this funny guy with "the sexiest of the palsies" can do. Get a preview of the show in the video below, and watch it or record it yourself. You might also want to read interviews with Zach today from Disability Scoop and Love That Max. Some good food for thought there about how parents should challenge their kids with special needs, and, well, let them see the world.

Friday, December 09, 2011

Maybe "Children With Special Terminology": Today's guest on the Inclusive Class radio show was Kathie Snow, who advocates for inclusion and person-first language on her Disability Is Natural site, and one of the topics that came up in passing is the term "special needs" and how, well, un-special it is. It sets kids apart in a not really useful way, but I really don't know that there's an option that's any more desirable -- "disabilities" seems negative and limited, and "differently abled" sounds like the kid has superpowers. I'm stuck with "special needs" in the name of my site, and I've defined it there as broadly as possible. I do think we need some sort of umbrella term for when we're discussing concerns specific to this subset of kiddos. What do you think would be more suitable than "special needs"?

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Thursday, December 08, 2011

This Was More Fun When Santa Did All the Work: So, let's take a moment to talk about shopping, shall we? Because if you're like me these days, you're pretending to do work while really you're frantically doing Web searches looking for That Thing You Want for Christmas. Or maybe that someone else wants, if you're generous, but this week, it's all about me. My elusive prey at the moment is some sort of bag that's big enough to stow a 13" MacBook but not so big that I can't use it as a purse when I'm going somewhere without the computer. Trying to eliminate the many-different-bags-and-which-one-did-I-leave-my-keys-in dilemma, if you know what I mean. Right now I have a perfectly decent large laptop tote, and a small just-the-basics bag, and a medium-sized backpack, and all of them work just fine, so I don't really have a reason to get a new bag unless it is Just the Right One that replaces all of the above. But it's either hiding from me or costing more than $100, which might as well be the same thing. Where would you look?

Tuesday, December 06, 2011

You Know What Word I’m Not Comfortable With? Nuance. It’s Not a Real Word. Like Gesture. Gesture’s a Real Word. With Gesture You Know Where You Stand. But Nuance? I Don’t Know.: A post on Support for Special Needs yesterday by Robert Rummel-Hudson touched on something that I think most parents who've been on the special-needs beat for a long time start to feel -- that despite the explosion in support opportunities the Internet and e-mail have brought, it's still not that easy to find a community that fits. You feel a responsibility to be a professional sharer of your experience for the newbies, but after a while you realize that there's much more nuance to your story than you can ever responsibly explain to someone just starting out. And your fellow veterans seem to have hardened into those nuances to a degree where it's almost impossible to honestly share your experience without being accused of invalidating somebody else's.

I received huge assistance after adopting my kids from an e-mail list for parents who'd adopted from Eastern Europe, but when I was in a position to give advice back, I found a minefield of people who felt any discussion of special needs was bad for adoption and therefore evil, and people who felt anything other than a scorched-earth approach to problems like RAD and FASD made you a raiser of sociopaths, and people who seemed to scan posts for any phrase they could use as an accelerant for their own particular flame wars. Like many parents with a point of view, I fled to my own little website world where I could set the rules of discourse, blogging and writing and eventually becoming's special-needs-parenting guide, and I hope I've been useful to others in that effort. Yet I do feel at times like I've become a "brand" in a way that makes me a worse parent in my real life, where being able to turn any experience into 500 words is not that useful a skill.

Friday, December 02, 2011

And How Great at Organization and Regulation Are You, Exactly: Today's Inclusive Class radio show was on executive function, which is not a party for VIPs but the ability of an individual to self-organize, self-direct, and self-regulate. All those good things so many of our kiddos are so bad at. Our guest, Dr. Christopher Kaufman, had some hopeful things to say about how teachers are starting to understand that bad behavior does not = bad kid, and that there are some really easy ways to accommodate immature executive-function skills. I don't know why we -- parents and teachers both -- can understand that kids may need help with speech or with gross motor or fine motor skills, and that they have to learn to read and walk and potty, but expect organization and regulation to just happen as a natural function of being alive. Those skills have to be learned like everything else, sometimes at a developmentally slower pace depending on the kid -- and as the enormous adult-organization industry would attest, some folks never quite get it yet go on to lead useful lives.

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What They Did for Love: This is the YouTube video that's making us teary around my house this week -- of my daughter's high-school marching band and alumni playing this year at the traditional Thanksgiving game and paying tribute to their director's 40th anniversary. It was my girl's first year participating as a graduate, and inspiring as always to see everyone gathered together. If you've been in a band or had a child in band, give it a look. Have tissues handy.