Arlene is on the SCENE

Posts Tagged ‘Arlene On the Scene

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.

A report was just released with dismal statistics: of 647 characters appearing in scripted programs on network television (ABC, NBC, CBS, CW, Fox), five have a disability.  Five.  And yet, people with disabilities in this country number over 50 million, one-fifth of all Americans.

And we wonder why living with a disability is sometimes challenging for kids, why it’s so hard to integrate a disability into a positive self-image while growing up. Because we’re not out there!  Kids with disabilities don’t see themselves reflected in our culture.  Disability can’t become part of “the norm” when it’s not a common part of our everyday lives.

We wrote Arlene On the Scene in part for this purpose–to throw out into the mix a girl who happens to wear leg braces, kind of like the (ONE!) guy on Glee who uses a wheelchair that everyone knows about (although the actor doesn’t use a wheelchair).  We hope that more follow along.  Copy-cats welcome!

And that’s also why we’ve taken our show on the road, visiting schools to talk to kids about disability being just one part of a person’s mosaic.  We’re scheduling free “author presentations” now for the 2011-2012 school year, so be sure to contact us if you’re interested.  Our Teacher’s Guide is available for free download here as well, providing over 50 pages of classroom activities to utilize Arlene On the Scene in grades 3-5, or as a guided reading for younger students.

Who knows?  Maybe Arlene will be the next Disney sitcom star?  What do you think?

We see differences...

A new study in the journal Pediatrics delivers what may be surprising observations and conclusions.  The first thing that made me pause was that in the sample, 33% of the students surveyed had some form of special health care need.  For the past year, I’ve been presenting to students at elementary schools about disability and our attitudes toward it, using our book Arlene On the Scene as a launching point.  And I always jump right to it in the opening of my presentation: we do have attitudes toward disability.  Don’t try to deny it.  In fact, we have reactions and attitudes toward most differences, including disability.

The idea that in a group of students nearly one third could have a special health care need, which then generates these attitudes and reactions in those around them–well it’s no wonder that all this affects school performance.

And this is what researchers found out.  Having a special health care need, such as Charcot-Marie-Tooth disease or any other health issue, negatively impacts school performance.  That means lower grades, more absences, and less motivation to do well.  How much of that is the health care limitation itself, and how much is the lack of support from financially strapped school systems?  Or how much of that is because of our own attitudes toward disability?

The study also found that students with special health care needs were more often victims of bullying.  This surprised me, what with the War on Bullying launched recently, you’d think the teasing of kids with special needs would have been addressed.  But then again, maybe it isn’t so surprising.  An understanding of what it means to live in this world with a disability, an opening of the mind to the differences among us, the adjustment of attitudes and assumptions about disability–these are tough topics that just aren’t undertaken by our schools, given the hyperfocus on tests and stats.

But increasing awareness of disability, and of diseases like Charcot-Marie-Tooth, must be undertaken, if not by our schools then by us.  This new study is further proof of this.  We have a responsibility to our children to foster an understanding of diseases like Charcot-Marie-Tooth and the special health care needs that result.  Their future success depends on it.

…because it’s such an awesome place!

We had the best time bopping from school to school in my home state, talking with kids about the ideas behind Arlene On the Scene and about our mission to support people living with CMT.

We had some of the most amazing conversations!  At Monsignor Clarke School, where Grace attends, students were very interested in the science of it all.  “If they’ve given CMT to mice, then they already have the recipe.  They should just follow the steps in reverse, and they’ll get rid of it!” one young woman stated in exasperation.  Good point, we thought.  But then another student pointed out that when mixing chemicals, one has to be careful of unpredictable reactions, so he advised that the researchers use caution when developing new treatments for CMT.  We agreed.  Finally, one assertive young woman took the microphone from Carol and made her point quite clearly, “Grace is my friend.  I just don’t even see the leg braces anymore because she is just my friend, and that’s it.”  We couldn’t have said it better ourselves.

At Kizirian School in Providence, one class wrote a limerick in honor of Arlene.

There once was a girl named Arlene

Who was always on the scene.

The kids thought she was cool.

She became president of the school.

Next she will run for Queen.

Thanks Kizirian!  You were terrific!

I was lucky enough to return to my own alma mater, Sherman School.  Ah, what great memories.  For those of you not from Rhode Island, that white thing on the left is a bubbler.

At nearly every stop we made, we heard from brave kids who told a roomful of their peers about their own differences.  You impressed us so much with your courage and honesty.  Here’s to the girl who showed us her own leg braces, to the kids who told us of their struggles with Attention Deficit Disorder, to the boy who talked about his brother with autism spectrum disorder and the teasing he faces, to the girl with the young cousin who lives with multiple sclerosis.  We are fortunate to have had the opportunity to talk with you and hear your stories.

I keep coming back to the words of that insightful young man at Hopkins Hill Elementary School in Coventry: “It’s like we think people with disabilities can’t do stuff, so we kind of lock them in this little cage.  But they can.  And so we just need to like, unlock the cage.”

I love that metaphor because it reminds me to unlock and open my own mind to differences, whatever they may be, and practice the art of appreciating those differences, not merely accepting or tolerating them.

We were fortunate to have the help of Channel 10 in Rhode Island to spread the word about Arlene On the Scene and her positive message about living with a disability!


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Well, we got off to a great start on our week-long visit to schools in Rhode Island, spreading Arlene’s message as far and wide as possible.  We kicked the week off at the school of the girl who inspired the book, Grace Caldarone.  A big shout-out to all our new friends at Monsignor Clarke School!

Next we visited West Kingston Elementary–we loved seeing you all!  Chariho Middle School–all 500 of you–glad we could talk, even if it was 8:30 in the morning for some of you!  And to our friends at Hope Valley, thanks for all your great comments about the book.  We loved that you loved it!

And thanks to Wakefield Books for hosting a great book-signing.  We talked to a lot of our new friends that we met the past two days and continued to spread the word about the need to raise awareness of CMT.   If you missed us today, we left behind signed copies at the store, and they are the rare ones with BOTH authors’ signatures.  We’re not often in the same place, so grab one of those while they last!

We’re off to Warwick tomorrow, Providence Thursday, and Coventry Friday.  And we’ll be at Symposium Books in East Greenwich on Friday from 3:30 to 5:00 if you’re in the area!

This post is by Marybeth Sidoti Caldarone, who helped write Arlene On the Scene.

“Are you happy?”

I’m never really sure how to answer that question. I guess it’s pretty relative. Happy to be alive? Sure. Happy to be blessed with a caring husband and two amazing children? Yes. Happy to have a good job and work with people I respect? Definitely. Happy to need assistance with 95% of all motor tasks that need to be carried out throughout my day? No. Happy to watch my daughter struggle with the same challenges I had at her age? No way. Happy to not be able to take care of my home and my family in a way that I would like to? Who would be?

Well, I can honestly say that I strive to be happy in life as often as possible, but as many of you may know, it’s not so easy to dodge the overwhelming feeling of never being able to “keep your head above water.” My approach is to be determined to keep pushing through and keep believing, really believing, that there is a purpose for everything. Chances are, that purpose won’t be obvious. You may never figure it out, so to have happiness or contentment, you really have to believe and, as a famous fish once said, “just keep swimming.”

Really, when you think about it, you have to find your happiness, and sometimes things can get in the way. If you pay attention, however, the moments will come. That’s right, I said moments. I’ve realized happiness often comes in the smallest detail. It may simply be found in a few words (“I love you”, “thank you”) or a kind action (a hug from your 15-year-old, the door held open when you least expect it).
So, instead of asking the question, “Are you happy?” maybe we should ask, “Have you had any happy moments today?”

I have.   How about you?

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

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