Arlene is on the SCENE

Posts Tagged ‘disability

I’m ready to edit!

I get this question at pretty much every school I visit: Will there be a sequel?

I LOVE this question, because it allows me to shout: Yes! Yes there will be!

I’m working on it now, as I said in the last post. Very hard work, this editing. But for me it’s fun. I get to let my imagination go wild!

The students at Charles E. Smith Jewish Day School in Maryland have offered up their help with the storyline for the sequel. Throughout the year, I heard great ideas from students, especially my buds at Washington Oak in Rhode Island (yes, I still have those scraps of paper you wrote your ideas on). But my friends at JDS actually wrote the first few chapters as a writing assignment!

Oh, they’re great, really great! So many ideas–talk about imaginations going wild! And I love all the cool stuff you put into your writing. I saw metaphors, imagery, hyperbole, just like we talked about. Many of your wrote about camp or the beach, with great details, proving that when you write what you know, it comes out very vivid! Some of you included other characters from the book too. Carlos made several surprising appearances. Some of you had Arlene falling in love (hmm, little early for that maybe? :)), and many showed Arlene in a real way dealing with her leg braces. You all certainly seem to understand the message of the book–gotta live it, but not let it take over everything!

I will gather all your papers and sit down at my computer to finish the sequel this summer, I promise! Stay tuned right here for some sneak peaks early next fall.

To my friends at JDS–thanks for all your ideas and hard work! Keep my email and write me! Let me know how your summers go and what’s happening next year. I’d love to come back and see you!

Feels like school’s basically out already for the summer, doesn’t it? In our house it does! It’s sunny and 90 degrees here in Washington, DC! So I thought it was a good time to wrap up the second year of our School Outreach Program, see how we did.

Well, we certainly hit our goals! The first year we visited 23 schools, and this year it was 30. And we ventured off the east coast! We went to Los Angeles and had a great time there. We spoke to 4000 students in all, talking about important issues, such as disability, self-image, the value of diversity, and the power of writing. With each presentation, students and teachers learn about Charcot-Marie-Tooth and the mission of the Hereditary Neuropathy Foundation to support those living with CMT. And with each presentation, we highlight the importance of empathy, true understanding of each other’s strengths and needs, so that our classrooms can be bully-free and comfortable places for kids to let their true selves shine.

We ended this fantastic year with a visit to a great school nearby, Olney Elementary. There we encountered something that made us think of foreshadowing. All you third, fourth and fifth graders reading this, if you don’t know what that is, go look it up before you read on. [Insert my lame attempt to whistle…] You done? Ok, yes, foreshadowing. At Olney, we met this great group of kids who call themselves the Recycle Rangers…

Carol got to meet Olney Elementary School’s Recycle Rangers!

…and this made us think about foreshadowing (when an author gives you hints about what’s coming later in the plot). Turns out one of the main parts of the sequel to Arlene On the Scene is that Arlene and her friends start a recycling group at her school, just like Olney Elementary’s Recycle Rangers. So we asked them lots of questions. Authors have to do their research, even when writing fiction!

The sequel is our summer project. We’ve finished a draft, but as anyone who has seen our presentation knows, now the real work begins–the editing! Yes, this will take a while, but hopefully we’ll be able to get the sequel out sometime next year. Working title [insert drumroll]: Arlene, the Rebel Queen. Please, comment away! Olney kids gave it a thumbs up, but tell us honestly–does it grab you?

And don’t forget to contact us and get on the schedule for next year! Presentations are completely free of charge, thanks to the support of the Hereditary Neuropathy Foundation, and we also donate copies of the book to the library of each school we visit. We’re only limited by the challenges of time and geography, so just let us know and we’ll try to work out a trip to your local school!

It was good to go home again. It really was. Growing up in Rhode Island was special. I didn’t appreciate it, like most things, until after it was over. (Why does it always work like that?)

But this is why we set the book in Rhode Island, to kind of re-live it. And this is why we keep coming back.

We visited nine schools in three days–what fun! Providence, Coventry, West Warwick, Narragansett, and Wakefield were all on the schedule. The best part: the “real” Arlene came with us! That’s right, Grace Caldarone stole the show at Kizirian, GJ West, Carnevale, and Narragansett elementary schools. We were so happy to have her with us!

Now that I’m home for a few, caught my breath, did my laundry, all that…I have a few things to say to my new friends.

To the kids at Pleasant View ES–let’s keep up the challenge! They dared me to come up with a funny story about a grain of rice. I double-dare you to write a poem about…hmm…this piece of toast that I half finished for breakfast this morning. Go! Write! Email it to me and maybe we put it on the site!

To my friends at Kizirian–can I come back again for the third time next year? You are all fantastic! Please write me at the link above–let’s keep talking!

Students at Narragansett ES–why didn’t anybody tell me it was “wear your sports jersey day?” I would have brought my Capitals shirt. What’s that? Bruins are ahead 2 games to 1? Well, it’s not over yet!!

Okay, you know I would get to you, fifth graders at Washington Oaks ES. (Yes, that means you too, Aidan!) I know you’re on spring break right now, but it’s the perfect time to start writing! I’d love to see your work, and email me more of your ideas for the sequel!

All in all, it was a fantastic trip. I have visited schools from Washington, DC to Los Angeles this year, and as they say, there is just no place like home.

Boy I wish I were announcing that Arlene On the Scene is about to made into a blockbuster motion picture!

Unfortunately…not yet!  I’ve had several students tell me recently that they have “connections”  to the industry and will put in a good word for me.  That’s terrific!  I think these kids really just want to see Plumpy rolling down the hill, flattening Joey and his buddies!  If you don’t know what I’m referring to, you really must read the book!  🙂

But we did make it to sunny CA.  Only to find it 20 degrees colder than on the east coast!  What gives?

I want to give a big shout-out to Dahlia Heights and Rockdale elementary schools for being such great audiences and great listeners.  It was so great to meet you!

Now, it’s on to Rhode Island.  Oh, you know I have to go back home again!  We’ll visit eight schools in RI in mid-April, talking to kids about differences, disability, and the power we have to change the world!

Check out our School Outreach Program: we’ll come to your school for free and donate a few copies of Arlene On the Scene for your library!  We discuss how it’s really our job, using our empathy skills, to create a safe place for all of us to be ourselves, our true selves, including difference, disability, whatever you bring to the group.  It’s all sponsored by the Hereditary Neuropathy Foundation to raise awareness of Charcot-Marie-Tooth, which is the condition that “Arlene” deals with.  Along with the more tricky issues that a fourth grader has to face: friends, teachers, homework, parents, big brothers…

A recent survey tells us that kids with autism are much more likely to be bullied.  The new movie, Bully, coming out this week will bring needed awareness to this important issue.  We hope to continue to contribute as much as we can to this awareness effort, school by school, student by student.

Let us know if we can come to meet you–contact us today!  We just need a few schools in the same general area, and we’ll be on our way!

I just saw this amazing video.  Take a look:

 

 

This ties in so much with our School Outreach Program.  So often we pretend we’re above stereotypes, that words like the R-word don’t matter, they don’t mean anything, that hey, I’m still a good person!  Guess what, it’s not about me or you.  It’s about people like Max.  Would we use that word directly to him?  Read his mom’s blog, get to know him.  I doubt you would.

I’ve heard the R-word myself spew from kids’ mouths at the playground, along with “gay” or “sped,” flung casually over toward a playmate like it was all a normal part of fun banter.  I think we need to make words like these sting the ears of our children, the same way it would sting the ears of the child who happens to be gay, or have an intellectual disability.  If we don’t address it, it only gets worse.  And then we’re part of the problem.

Same reason why I think consequences were justified over use of the C-word in reference to Jeremy Lin.  We have to be vigilant about our language.  Some say attacking the use of particular words doesn’t change anything; we have to address attitudes.  I disagree.  Words shape attitudes.  Research shows this, and frankly, I think we all know this.  It’s just hard to admit, because that would mean we’d have to change our ways.

I joined the campaign to end the use of the R-word.  I hope you will too!

I read a comment today written by someone with Charcot-Marie-Tooth, and it stuck with me.  She was trying to talk about the sense of loss she feels with each passing day that brings a little less movement, a little more pain, a little less independence.  The response to her was: it’s not “loss,” it’s change.

She didn’t agree, and went on to vividly articulate what this loss feels like.  Sure sounded like loss to me.  Problem is, she points out, that because of her own inner strength she figures out a way to cope with this loss, and then all of a sudden people admire and applaud.  She’s become an inspiration, and the loss is replaced by change, which I dare say is an effort to normalize it.  As the writer points out, until you have lived with your independence being slowly stolen from you, day in and day out, don’t label it, please.

Which brings me back to something my friend/co-author Marybeth and I have talked about a lot, something that I’ve dealt with often in my work and that I have talked about here.  We all seek to cope with life’s pitfalls, and in doing so we all try to find the silver lining.  Marybeth tells me, though, about the dark underneath that silver lining–the anger, the frustration, the disgust.  And she’s one of the most spiritual people I know.  It’s not about denying there’s a silver lining, or not acknowledging our blessings along with our burdens.  It’s about standing in the dark for a minute, for ourselves or with a friend.  Uncomfortable and frightening as it is, it serves a purpose.

I was talking with a young client of mine today.  He’s been in foster care a while and has had quite a difficult time of it in his eight short years.  “That’s cuz I’m bad,” he said.  “I’ll always be bad, everybody in my family is bad, we just bad people.”  The “You’re not bad!” response almost made it past my lips before I had enough sense to shut my mouth and wait a minute.  I paused as long as I could.  Just tried to sit in the dark a moment.  I asked him why he thought he was bad, and he went on to express his anger–no, make that pure rage–at me, the judge, the social worker, everyone that had anything to do with his situation.  And we sat in the dark some more.  And frankly, he seemed relieved.

Now, he’ll go on and continue to cope, continue to perform to the applause of all of us adult onlookers.  But I’m glad I followed him into the dark, just a few steps anyway.  That underside is indeed dark, scary, and probably lonely.  Those traveling it could probably use a little company, and not always just to be led out.

Okay, I do think George Guiliani has a point.  On a recent news show he spoke out against the “bullying” that occurs during that old Christmas show about Rudolph.  I mean, I remember cringing as a kid watching poor Rudolph get banished from the reindeer games.  I cringed in part because frankly, the scene was familiar.  No, I didn’t get ostracized like that myself, but that crowd mentality–you’re too weird to fit in here–was pretty common, at least where and when I grew up.

So yes, he’s got a point when he highlights that this is mean.  Um, yes, we realize that.

The point of the Rudolph story is that his “difference,” a big ol’ red nose, saves the day.  Huh, appreciating differences–are we still talking to kids about that?  You bet.  Doesn’t seem to have sunken in yet.  Or maybe the net cast around difference has to be further widened.  Because while we all give lip service to accepting difference, it’s a whole other story to really appreciate and embrace them.  In the end, we’re all more comfortable with the familiar.

So I think we can’t re-watch the Rudolph story enough.  You’ve got to acknowledge the wrong before you clear a path to what’s right.  You sanitize your message too much and you’re just not credible.  As a therapist, I do believe we’ve got to get down into that swamp of negativity before we can clean ourselves up.

But I think Guiliani’s other point is more important and less attended to: why does Rudolph have to save Santa, the reindeer, and even Christmas itself before he’s accepted?  As my co-author Marybeth would say, “Where’s the applause when I heave myself outa bed into my wheelchair at 5 am?  Isn’t that inspirational?”


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Arlene On the Scene is proudly sponsored by the Hereditary Neuropathy Foundation.

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