Arlene is on the SCENE

Wow what a fun time we had recently at Fallsmead and Arcola Elementary Schools here in Montgomery County, MD. I spoke to over 300 students at each school and had a blast. At Fallsmead, many of the kids had read much of the book, so they were really into the story and character. I received amazing letters from them, with so many great questions for me! I’d love to answer them all, but I’ll answer the most important one: yes, I’ll come back as soon as the sequel is out. I have to drop off a copy for your library! Then I can answer any other questions you have. Don’t forget, you can always contact me here by email.

I have to send a special thank you to the student at Fallsmead who taped coins to her letter to be donated to find a cure for Charcot-Marie-Tooth disease. I gave that right to the Hereditary Neuropathy Foundation. Thank you so much!

At Arcola, the kids and I had a great time! Of course, I wished I had known it was pajama day! But it was great to meet all of you, with your great questions and enthusiasm for writing. You had great ideas for the sequel–and prequel! I can’t wait to come back and drop off a copy of the sequel in March. Let’s see if it meets your expectations!

Aha! They found it! They found out where empathy comes from.

Drumroll…the anterior insular cortex.

Aren’t you glad you know?

Scientists have identified an area of the brain that seems to be responsible for empathy. Now, the study sample was pretty small, and they seemed to focus on the understanding of others’ pain specifically, but this is interesting research. The researchers found that three patients who had lesions to the anterior insular cortex had more difficulty “evaluating the emotional state of pain” in other people, when shown pictures of people who were in pain. This is compared to other patients who had lesions in other areas of the brain, as well as people who had no brain damage.

What do we do with this knowledge? Well, good question. They say that this may help to develop cognitive and behavioral therapies for social challenges such as a lack of empathy. As a therapist, I’m not sure how knowing what area of the brain is affected would inform my therapeutic approach. It’s not like I choose cognitive behavioral therapy over traditional play therapy based on what area of the brain is affected in my client. They also say that this knowledge could help to better understand the organic basis for social emotional challenges and thus inform pharmacological treatments. Now that I can see, although I have some hesitation about that approach, especially with children.

All very interesting, although having just talked about empathy with my good friends at Fallsmead Elementary School in Maryland yesterday, I think we can accomplish quite a lot by simply modeling and practicing empathy. One student asked me, “Why do we need to practice it?” I had to think about that one. I responded that if we’re really being honest with ourselves, often we operate as if it’s “all about me.” Admit it, we do! So we’ve got to strive to reach that higher goal of being empathetic to our peers. If each one of us strives for that, the world is a safer place for all of us to be ourselves and emerge with a positive self-image.

Check out our free school presentations about empathy, embracing differences and the value of diversity. And start practicing!

We had a great time this weekend at Barrington Books‘ Children’s Festival! They do an amazing job of hosting events like these. When you walk into their store, you see why independent bookstores are where it’s at. From the variety of book offerings, to the amazing stock of gifts and things, to the knowledgeable and incredibly helpful staff, it’s clear that big box stores will never replace an oasis like this!

The other thing that indie stores like this offer is a strong connection to the community. It feels like home walking into the place. Staff give a warm hello, ask how your mother is doing, or whether your son won the big baseball game last weekend. That’s the kind of place it is.

Finally, our fellow panelists were amazing: Mary Jane Begin, Peter Mandel, Patty Bowman, Eileen Rosenthal, and Grace Lin. It was great to meet you! Read all about the panel–including a fascinating “Inside the Writer’s Studio” commentary–at Barrington Books’ blog (say that three times fast). Also a big thank you to Anika Denise who moderated the panel. Check out her books and blog too!

I watched the debate along with the throngs. First thought, what a way to spend an anniversary. 🙂

But when I sat down to watch, I called the kids in. At ages 13 and almost 12, I figured it’s about time. Time for them to participate and engage. They need to pay attention to what’s happening around them, learn to keep learning, and become part of the discourse.

OK, well, it was a challenge. The older one checked her email, glancing up once in a while, and the younger one arranged his mini-M&M’s into shapes on the coffee table. But then they did begin to listen, especially to my shouts at the television. And then the 13 year old went off: how are you going to lower taxes for everyone and still have enough money to pay for everyone?! The younger one looked up at me to ask, “Wouldn’t Obama have done that already?”

Ah, there it is. The healthy questioning that is the foundation of this country. (It’s true. See Stan Mack’s great new book.) The refusal to simply accept what the government or the leaders or the establishment says just because they’re appear to be at the top. The masses have something to say too. We have brains. And our leaders have no secret formula. It’s all up for debate.

I’m hoping that our next book in the Arlene series, Arlene, Rebel Queen, can help to empower our children to ask questions, speak up, think for themselves. Arlene and her friends learn the right–and wrong–way to create change. The goal is to convince the young that they have a voice in all this too.

One of my favorite songs, my favorite groups, speaks to this beautifully:

On Children by Sweet Honey in the Rock


There is a movement afoot to make disability rights and disability history part of the standard curriculum. I just came across an e-petition that is making its way around the United Kingdom. California recently passed the Fair Education Act which requires the history curriculum to include contributions made by people with disabilities. As with other minority groups who are sometimes misunderstood and mistreated by the majority, teaching everyone about the history of all groups will only enhance understanding and respect.

And Marybeth and I were thinking the same thing! As you’ve read in previous posts, we’re currently editing the sequel to Arlene On the Scene. It should be available next spring (we’ll keep you posted!). One of the things we wanted to include in this book is a taste of disability rights history, so that students will be encouraged to research this topic and learn more.

Check out the sneak peek from Arlene, Rebel Queen below! (It’s unedited; please excuse any mistakes!)

Here’s the background: Arlene and her classmates were assigned a project in which they had to research a law that changed our country. Arlene read about the Americans With Disabilities Act. Of course, for her report, she did things a little differently. You know how Arlene loves to rap…

But first, after lunch, it was time for Jessie and me to do our presentation thing.  And my thing is poetry.

I smiled at the class, then went right into it.  By the end, they were all clapping out a beat for me!

“Let me tell you ‘bout a girl named Jennifer Keelan

You know she can’t walk, she got around by wheelin’

She made the prez and politicians feel a funny feelin’

When they watched her climb a hundred steps, all while kneelin’

At the top she gave a paper to some pol-i-ticians

Saying we got rights in spite of a disease or condition

Her picture made the papers, but in the late edition

And she forced the president to make a quick decision

Before the ADA was passed, it was a-okay

To treat disabled folks like they should just be locked away

But now malls, halls, clubs, buses, and cafes

Have to open up the doors that once blocked our way.

The words ‘We the People’ aren’t a mystery

We have rights, freedom and of course, liberty.

By making civil rights include disability

The ADA marked its rightful place in history.”


Service dog, “Chili”

I just saw an article about a student in Texas who was told she would no longer be allowed to bring her service animal to school.  While the Americans With Disabilities Act requires service animals to be allowed into public and governmental facilities, new regulations in March 2011 clarified the definition of “service animal.”

Well, attempted to clarify the definition. I would say the definition is still a bit vague.

The new regulations state that “dogs whose sole function is to provide comfort or emotional support” are not service animals under the ADA; however, the regulations also give an example of a service animal who “calms a person with Post Traumatic Stress Disorder during an anxiety attack.” Hmm. Sounds like “comfort and emotional support” might indeed be part of a service animal’s function.

In the Texas case, Chili helps the student stay calm during anxiety-provoking situations, anxiety that is caused by her disability.  My confusion lies in the Justice Department’s dismissal of providing “comfort” as a legitimate task of service animals. For kids living with disabilities such as autism, anxiety disorder, or mood disorder, comfort and emotional support is precisely the service they need to function in the classroom. Would the school rather employ a para-educator full-time to provide this support?


The power of animals is vast. My own former pup, Jasmine, greatest dog ever (I’m covering the eyes of my own two mutts lounging by my desk) was amazing in the classroom. She helped during therapeutic groups and in individual sessions with children who needed to work on attachment, empathy, and self-regulation.

Maybe the Department of Justice needs to clarify a bit more. If someone has a disability affecting their emotional and/or mental state, and the animal helps to address that need, sounds like a service animal to me.

I often imagine the mixture of feelings we get when we’re off to do something new is like a stuffed backpack.  In there, you’ve got your excitement, your anticipation, and of course, your nervousness, maybe even a bit of fear.  I picture it as a backpack because your only choice is to pick up this big bubbling brew of feelings and hoist it onto your back, then push on forward.  I mean, what are you going to do, stay home?

(Well, sometimes we do stay home, don’t we? Sometimes we just say nah, I’d rather not risk it.)

But school leaves us no choice. We get pushed out the door for this one. And school offers such a mixture–fun, excitement, friends, learning new things, plus a lot of tricky situations that you’ve got to figure out. As Arlene experiences, there’s a whole lot of judgment going on within those school walls. It seems like this can be one of the hardest things about school, the feeling that everyone is watching you, forming opinions, judging.

I came across this great campaign, Everyone Matters. They issued a challenge: go 24 hours without a single judgment of another person. Think about it–not a single “Ew, what is she wearing?” or “He acts like a weirdo!” Nothing, not a single statement or thought that pegs someone with a label that you’ve decided fits them. A great way to practice how to be all the time. Nice idea for the first day of school.

This should make that backpack a little lighter.

I always told myself that my kids “aren’t involved in that cyberbullying stuff.” I spoke openly with them about the subject, listened in to their conversations when I drove carpool (the BEST source of inside scoop!), talked to them about the online rules for our family when they did begin to venture into social cyberspace. I was all set, no problem here, I thought.

But a recent perusal of facebook and twitter was a slap to the side of my ignorant head. The comments and postings that were swirling through my kids’ social circles were eye-opening–and very concerning. Come on, why would I think my kids are above all that? It’s just a fact–most are vulnerable to it. We need to adjust accordingly.

Not to say we have to cut them off from social media–that’s where it all happens, apparently. (Is it like middle school dances? The arcade? What is the 80’s equivalent of facebook?) But we really do have to be aware, and we really do have to monitor. Not in some kind of suffocating way, but just openly and honestly. Like this is the cost of doing business on facebook. Sorry…dude.

I heard about this great post on cyberbullying with an amazing graphic. Check it out:

Cyberbullying Infographic
Source: Accredited Online Colleges

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!

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

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