Arlene is on the SCENE

Posts Tagged ‘Arlene On the Scene

…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!

 

Vodpod videos no longer available.

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?

I wanted to write about our recent article in the Quadangles magazine, especially as we begin writing the sequel to Arlene On the Scene and get into this whole “helping/caretaking” issue.  In the article, I am described as offering help, or “ministrations,” to Marybeth while we were roommates in college.  Okay, that’s true.  But I’m afraid my point that this was as helpful to me as it was to  Marybeth might be written off as just another line in the caretaker’s script, just a standard demure response to the waterfall of gratitude.

The helping relationship is incredibly complicated.   I should know; I have lived it both personally with Marybeth and professionally as a social worker.  From the outside, it really does look like selflessness, pure human kindness, in essence a one-way street.  But I just don’t see it that way from in here.

There is incredible personal reward for those who help others.  It’s  just there, whether it stems from your religion, your value system, your personal moral code.  We’re a connected society, and when one reaches out to help another, that helper gets rewarded, usually directly and in the moment, as well as indirectly from others.  In a lot of these situations, the helper enjoys an increased sense of efficacy, self-worth, perhaps even…power?

When it comes to people living with disabilities, sometimes their life is stuffed to the brim with situations in which they need to ask for help.  Inherent within the “Can you help me?” can be “…because I can’t do it myself.”  And then of course, there’s the thanking of the person who has helped them.  Does this get old?  I really wonder what would be left of my own sense of efficacy, self-worth, and power if I were in that position.

As we advance our thinking about people living with disabilities, as we begin to embrace disabilities as differences that enhance the mosaic of our society, I think we also need to rethink the helping relationship.  Caretakers and those who offer help deserve every bit of gratitude, no doubt.  But when I think back to my college days, and I read the article in Quadangles, I’m sticking with my version of events: I benefited as much or more from those years as a caretaker, and I’d redo it again in a heartbeat.  Because I got something out of it too.

Who is helping who?  It’s a two-way street.

Just a quick post–I was lucky enough to be able to talk about my favorite book on teachmama.com, a great blog about having fun with your kids while slipping in some enrichment at the same time.  This blog is truly inspiring–wish I had it when my kids were younger!

Anyway, I was able to reminisce about Tacky the Penguin, which in so many ways really got me in the right groove to write Arlene On the Scene.  Check out the post, and if you comment on the blog, you can win a free, signed copy of Arlene.

But don’t you have one already?  🙂

 

Arlene has been popping up on blogs these days, and we wanted to share the links!

Arlene On the Scene was rated as one of the top children’s books that teaches compassion by Pragmatic Mom, a great blog about children’s literature, education and parenting.

Top 10: Books That Teach Kids Compassion (ages 2-14) UPDATED2

CMT Charcot-Marie-Tooth books to teach children compassion http://PragmaticMom.com, pragmatic mom arlene on the scene special needs children in the classroom

 

Marybeth Sidoti Caldarone,  co-author of Arlene and parent of Grace on whom the book is based, was interviewed by Louise Kinross for Bloom magazine which focuses on parenting kids with disabilities.

For us, we are so thankful that in 2010 Arlene stepped onto the scene and brought much-needed awareness to Charcot-Marie-Tooth disease and the experiences of those living with it.  We will continue to spread Arlene’s message throughout 2011 by visiting schools and hosting book events.  We are inspired by the growing community of folks working together to change things for people living with CMT and other disabilities as well.  It all starts with our own perceptions and understanding, and from there, things blossom!

 

P.S.  We’re beginning work on the sequel…here’s to 2011!

We had a fantastic time at Revolution Books in New York City!  NTOR’s music poured out onto 26th Street and drew in a crowd as we enjoyed refreshments and good conversation with friends of the Hereditary Neuropathy Foundation (HNF) and our new partners in the mission to support people living with Charcot-Marie-Tooth disease.  Author Carol Liu read from Arlene On the Scene and led a great discussion about disability, difference, and our vision of a greater understanding, appreciation, and embracing of the differences among us.

We were thrilled that the young woman who inspired it all, Grace Caldarone, joined us!  It was great to have the entire Caldarone family there to share in this special event.  We know how tricky it can be to travel to New York with both Marybeth and Grace facing the challenges of CMT, but with help from friends at HNF, Revolution Books, and Vincent Limo, the Caldarones navigated their way to downtown Manhattan.

With so many friends and visitors, we sold out of the entire inventory at Revolution Books!  But don’t worry, they’ve re-stocked and have plenty of signed copies for those who were unable to make it on Saturday.  If you’re a New Yorker, we encourage you to visit Revolution Books at 146 26th Street.  It’s a welcoming and friendly place, great for holiday shopping and stimulating conversation!

We also owe a special thanks to the talented members of NTOR.  Your music rocked, and your energy is contagious!  We hope to work together on future events!

We can’t thank the folks at Revolution Books enough for their hospitality and support.  We also love that they saw in Arlene a revolutionary spirit.  We agree!  We are planning many more bookstore events and school visits to continue to spread Arlene’s message and build support for people living with CMT.

Authors Marybeth Caldarone and Carol Liu, Allison Moore of HNF, and Grace Caldarone

Author Carol Liu reads from Arlene On the Scene

The band NTOR rocks the crowd

We’re so excited to be holding our next book event in the Big Apple!  It’s a great time to be in New York City, so if you’re in the area, please join the fun!

We’ll be talking about Arlene On the Scene with young readers and their families at Revolution Books on Saturday, December 11th, from 3-5 pm. Revolution Books is located at 146 West 26th Street (between 6th and 7th Ave), 212-691-3345.  We’ll also be joined by the awesome band, NTOR, an amazing group of eighth graders who play a wide range of music from rock to punk to electro-pop.

Everything benefits the Hereditary Neuropathy Foundation, a wonderful organization that funds cutting-edge CMT research and works tirelessly to support people living with CMT and their families.

Hope to see you there!

It was so nice to see old friends and new at the Borders in Rockville, MD!  We had a great discussion about Arlene on the Scene and her message to young readers.  A lot of people picked up a few copies–they do make great holiday gifts!

And I hope that all of our new readers enjoy the book–please post a comment and let us know!  (Sure, even if you hate it…but be gentle).

We’re planning our next event for New York City in December–details to come!


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