Arlene is on the SCENE

Arlene, the Rebel Queen was recently included in the Bank Street College of Education’s annual list of the best children’s books. The Children’s Book Committee’s 2014 list included Arlene in the ages 9-12 category and marked it as a great read-aloud choice for teachers and parents.

Bank Street logoBank Street College of Education strives to guide librarians, educators, parents, grandparents, and other interested adults to the best books for children published each year. In choosing books for the annual list, reviewers consider literary quality and excellence of presentation as well as the potential emotional impact of the books on young readers. Other criteria include credibility of characterization and plot, authenticity of time and place, age suitability, positive treatment of ethnic and religious differences, and the absence of stereotypes.

Bank Street College is a leader in the field of education. Its programs include a graduate school of education, a premiere independent school for children, a head start program, and a family service center. Bank Street is unique in that it melds the clinically grounded knowledge of professionals with the theoretical abstract world of the researcher, and then tests that theory in practice and that practice in theory.

We are proud to be endorsed by such a prestigious institution!


Capture1Arlene On the Scene was recently named “Staff Pick” by Teaching Tolerance, an amazing organization dedicated to reducing prejudice, improving intergroup relations and supporting equitable school experiences for our nation’s children.

The Teaching Tolerance staff regularly reviews culturally aware literature and resources and selects the best picks for professional development and teachers. Arlene was reviewed in the Spring 2014 issue of the Teaching Tolerance magazine: “Filled with humor and heart, Arlene On the Scene is a great addition to any upper-elementary classroom.”

Teaching Tolerance is part of the Southern Poverty Law Center, a nonprofit civil rights organization that was founded in 1971 and has a long history of fighting racism, discrimination and exploitation. Through far-reaching legal action and fierce advocacy, the SPLC has dismantled institutional racism in the South, reformed juvenile justice practices and shattered barriers to equality for women, children and people who live with disabilities.

The SPLC has reached out to the next generation through Teaching Tolerance, its award winning program that provides educators with free classroom materials to teach students the value of tolerance and diversity. These materials have earned two Oscars, an Emmy, and more than 20 honors from the Association of Educational Publishers.

The Hereditary Neuropathy Foundation is honored to be a part of this long tradition of breaking barriers to provide access to justice and equality for all. We hope that Arlene On the Scene increases awareness of the experience of children who live with disabilities and teaches all to embrace the beautiful differences among us.

Youth activism is alive and well and brazenly powerful. Check out Malala Yousafzai. Even Jon Stewart didn’t know what to say, other than, hey can I adopt you?

We’re drawn to courage. When we see it in children, it’s even more engaging. It is accessible, and contagious. We begin to believe that we, too, can be that brave. Soon, as Martin Luther King said, “righteousness like a mighty stream” splashes each one of us in the face, wakes us up to the possibilities, and now we’ve got change on our hands.

I think what stops us all in our tracks is the combination of Malala’s courage plus the so-called Golden Rule, do unto others… Malala not only pushes for change against the most fierce resistance imaginable. She also demonstrates the wisdom and once again, courage, of self-examination, ensuring that she also stays true to her principles and values.


mermaid coverI had the honor to interview author Tony Seymour, whose wonderful book The Mermaid in the Gherkin Jar tells the story of Christopher, an eight year old boy living with cerebral palsy, and his relationship with a feisty mermaid, Azalea.  Like the Arlene series, Mermaid explores what it’s like to grow up with a so-called “disability,” but it does so through an engaging story filled with identifiable characters, a great plot, and plenty of humor. At the same time, Mermaid raises issues in a refreshingly honest way. No tip-toeing around here. Tony does a great job of exploring a range of reactions to living with a disability, from the main characters to the friends, family and teachers who surround them–or as he puts it, “the psychology of disability.” Read more below!

I really enjoyed this book and encourage others to check it out! It is available in Kindle format from Amazon.

What do you hope readers gain from reading your book?

First and foremost, I just want people to really enjoy the book. It would be great to think that kids really get into it and are entertained by it. If they pick up on the lessons or morals within the story, then that’s a wonderful bonus, but before any story can do that it must be convincing and grab the reader’s attention!

Why a mermaid? Why not a genie, troll, ghost?

Why not a troll indeed?! Don’t ask Azalea that! I was fascinated by the idea of mermaids as a child. I really did used to think (or wanted to believe) that mermaids lived in gherkin jars! There is an enchantingly mysterious side to the mermaid myth that I wanted to develop with Azalea. There is her mischievous, playful side, which draws Christopher to her at first. But there is her darker side that runs just below the surface that unnerves him. She is a siren of the sea, after all. You never quite know where you are with Azalea. And that’s what I like about her. She’s unpredictable.

What drew you to writing, and to writing children’s books rather than adult novels?

I’ve always loved writing. It’s one of the few things that really came naturally. The power to entertain or move someone through a good story is a wonderful thing! I prefer writing children’s books as I like all my stories to contain an element of fantasy. With children’s stories, you can really let your imagination off the leash. It’s a place where nothing is impossible and anything can happen. I have a few ideas for some adult novels, but even those will contain a good helping of fantasy. I think we all get a good dose of real life as it is!

What connections are there between your “real life” and your writing? Have you met a mermaid?

Have I met a mermaid? Well, of course I have! Honestly!

In the ‘Mermaid in The Gherkin Jar’, I think it’s fair to say that there is a strong link between the story and real life. Christopher represents where I was when I was a young lad growing up. I was aware that my cerebral palsy made me different and I did get a bit of name-calling at school, but on the whole I have happy memories of my childhood.

Azalea on the other hand is more a reflection of where I was as a teenager. I think you become horribly self aware at that period in your life. And if you have something that marks you out as different it can be exaggerated ten fold. In my mind Azalea behaves like a moody seventeen year old. She pretends to mock everyone else. She says she is proud to be different, but in many ways she just wants to fit in. I remember feeling like that at times as a teenager. Azalea is an outsider and quite a tough cookie. She’s been through a lot. But I think, sometimes, what she needs is just a big hug.


Lord Byron

Azalea also characterizes what I find so fascinating about the psychology of disability, especially the amazing levels of determination displayed by some disabled people. When I was a teenager, I read a biography on Lord Byron by Fiona McCarthy. As you probably know, Byron had a deformed foot, a disability which marked him out (in his eyes at least) as a freak. As well as his poems, he also wrote a number of plays. One of these was called “The Deformed Transformed.” In it, the hero, Arnold, is a cruelly deformed creature who is made an outcast by his own mother. There is one passage in the play which really stuck in my mind. It goes like this:

 “…Deformity is daring.

deformed transformedIt is its essence to o’ertake mankind

By heart and soul, and make itself the equal-

Aye, the superior of the rest. There is

A spur in its halt movements, to become

All that the others cannot, in such things

As still are free to both, to compensate

For stepdame Nature’s avarice at first…”

I thought this was fascinating and wanted to use it in the book. Azalea’s words echo those of Arnold, when she says:

“Differences like yours and mine are nothing to be ashamed of, Christopher…They are not weaknesses, but strengths, spurring us on, driving us further than the rest…”

There are many differences between Arnold and Azalea. Arnold does, for a start exchange his disabled form with the ‘dark stranger’ in Byron’s play for a supposedly perfect physique – something which Azalea would never do! But the words spoken by Arnold are very powerful and I felt they encapsulated Azalea’s character very well.

Is this your first book? Will you be writing others?

My first one that I’ve finished properly, yes. I want to write others – my intention was to make The Mermaid in The Gherkin Jar into a trilogy, provided the feedback on the first one is good. I also want to put a book of short stories together.

What helps you in the writing process? Coffee? Classical music? Sitting by a lake looking for mermaids?

Lots of coffee, yes… and cups of tea. I write straight onto my laptop and tend to work in silence. Though I may well have the odd break where I play some inspirational music: American Anthems I and II as well as some real power ballads from the ’80s to drive me on.

Anything else you want readers to know?

I’d really love to adapt the book and make it into a musical play. My Mum trained as a classical concert pianist and has written ten pieces of music already to accompany the story and the characters. I have another friend who’s a professional dancer who said she wanted help also. But it’s a long road! For the the moment, I just hope people will read it and enjoy it!


Both Arlene On the Scene and Arlene, the Rebel Queen have been officially leveled!

We have always envisioned both books to be a valuable addition to the language arts curriculum. Thus we knew it was important to have them assessed using the  F&P Text Level Gradient  Leveling System developed by Irene Fountas and Gay Su Pinnell. This comprehensive leveling system is used by major publishers of materials for schools, including Scholastic, Houghton Mifflin and McGraw Hill. The levels in the F&P Text Level Gradient™ are based on ten text factors including Genre/Form, Text Structure, Content, Themes and Ideas, Language and Literary, Features, Sentence Complexity, Vocabulary, Words, Illustrations, and Book and Print Features. With this leveling assessment, educators can be confident that the books are appropriate for their students for guided reading lessons, such as the detailed lessons provided in our Revised Teacher’s Guide. It is an essential part of the Common Core State Standards for educators to provide texts of increasing complexity and to utilize guided reading to improve comprehension and critical reading skills.

Arlene On the Scene was assessed at a Level P, and Arlene, the Rebel Queen was assessed at a Level Q. A guide as to how these levels correspond to grade levels can be found in the F&P Text Level Ladder of Progress.

We also recognize that both parents and teachers may need a sense of where these books fall as an independent reading choice. Thus we had our books assessed by Metametrics®. Their Lexile® Framework for Reading evaluates reading ability and text complexity on the same developmental scale and is the industry standard for matching readers to texts.  Arlene On the Scene was measured at 730L and Arlene, the Rebel Queen was measured at 750L.

We hope that these assessments assist parents and educators in choosing our books for home and classroom libraries. As always, don’t hesitate to contact us if you would like more information about our books and free school presentations.

tiche.1Forty-six schools, eight states, 6600 students. The third year of the Hereditary Neuropathy Foundation’s School Outreach Program was our best yet! From our home state of Rhode Island, to our current homes in New York and Washington, DC, and on out to Chicago and Dallas, we met our goal of reaching more students, teachers and parents than ever.

Our school presentations deepen understanding of disability as difference, something that can be embraced rather than merely tolerated or accepted. With our sequel, Arlene, the Rebel Queen, we added the powerful message that every young person has the potential to change the world. In fact, perhaps the young are best suited to lead us to change! With the addition of our Team CMT Kids program, we provide the opportunity for students to join with us in our mission to one day cure Charcot-Marie-Tooth (CMT). Be sure to check out our new video of highlights from this year’s presentation.

Having presented at almost 100 schools since first writing Arlene on the Scene, educators are beginning to spread the word on the classroom potential for the Arlene series. We’ve received positive reviews from the School Library Journal, our Teacher’s Guide for Arlene On the Scene has been revised, and many schools have taken advantage of discounted class sets. Both books will also be assessed this summer for their reading levels.

We believe that awareness is an integral part of HNF’s mission to support those living with CMT. We have found that our children’s books and accompanying school presentations have resulted in increased understanding and support for our friends and family members living with CMT, as well as all of those we know who live with all kinds of disabilities and differences. That would include just about all of us!

We look forward to next year, increasing our reach even further. Don’t forget to contact us if you’re interested in a free school presentation in your area.

Thank you letters–

thanl-you-letter-(1)  thank-you-letter-(2)

It’s here, our REVISED Teacher’s Guide! Many teachers have found our Teacher’s Guide helpful to incorporate Arlene On the Scene into their language arts curriculum, from grades three to five. Some have asked us whether more printable worksheets were available–now they are!

In addition, many have pointed out that the activities and worksheets in the Guide naturally align with a wide range of Common Core State Standards for English Language Arts. We thought it made sense to include these standards within the Guide as well.

Check it out, let us know what you think!

Revised teachers guide cover

The biggest Team CMT Kids event of the year featured a group of youth triathletes going the distance to support those who live with Charcot-Marie-Tooth disease.

IMG_1053The Playtri Youth and Junior Teams of Dallas, TX are incredible athletes! At the Hidden Cove Youth Triathlon meet last week, these kids, ranging in age from eight to fifteen, jumped into frigid lake water in the early morn for a challenging swim, then hopped on their bikes for a few laps around the park, rounding it all out with a run to the finish line–no, make that sprint to the finish line. Yes, they had enough energy left to burst through that inflated arch, shaving precious seconds off their total time.


What made it all so moving was knowing that these kids had chosen to support those living with Charcot-Marie-Tooth disease at this event. The team read the book Arlene On the Scene earlier in the year and had learned about the challenges of those living with CMT. They then set out to raise money in the weeks leading up to their first big team competition of the season. Through their efforts and dedication, the Playtri team raised $1275 for the cause! This money will be donated to the Hereditary Neuropathy Foundation to support their efforts to find treatments and a cure for CMT.

IMG_1030tiche.1We also presented at elementary schools in Dallas in the days before the triathlon event. Seven schools received free author visits, and about 1200 students learned about empathy, disability, and CMT through a discussion of the Arlene books, along with a reminder of the power of writing! Cesar Chavez Learning Academy, Sam Houston Elementary, Truett Elementary, Mark Twain, M.T. Reilly, and Central Elementary all participated in these lively discussions. Titche Elementary even blogged about it! As most who’ve read these books know, Carol grew up in Rhode Island and is an East Coast gal. But Dallas folks sure are friendly! Students asked amazing questions and had great insight into the social issues discussed at the presentations. Thank you to all the media specialists who opened their doors to our School Outreach Program! We’ll be coming back to “the DFW” next year for sure!

Thank you again to the Playtri team and Coach Morgan Johnson! We couldn’t accomplish our mission without your support!

playtri team


Kizirian Elementary School in Providence, RI has found Arlene On the Scene to be a great teaching tool in many areas. Bonus: it’s a fun read!


After purchasing a copy for all of the third graders, Kizirian Elementary dove right in. Using our free Teacher’s Guide and graphic organizers, students learned about disability and Charcot-Marie-Tooth disease, as well as broader topics such as the power of empathy and the beauty in embracing differences. Kids created their own campaign signs and even made their own Plumpy the Pumpkin!



They also used worksheets from the Teacher’s Guide to explore their own character and that of their peers. They practiced avoiding judgments based on outside appearances and using their empathy skills to support one another.


Finally, for Character Day, students dressed up like their favorite characters from Arlene On the Scene and Arlene, the Rebel Queen!



Mr. Musgrove

Mr. Musgrove



Kechup and Mustard

Kechup and Mustard

Kizirian Elementary students, you are a shining example of the power of empathy! You are awesome!

Kizirian 4.11.13

Arlene has been on the road again!

We visited fourteen schools in our home state of Rhode Island in early April. Wow, was it good to go home again! I even went to my alma mater, Sherman School. And there was that red bench, the one Arlene sits on near the end of Rebel Queen when she has a heart-to-heart with Mr. Musgrove. While the bench has been painted, and the seats in the auditorium are now cushioned (cushions! I had to sit on hard wood, for hours, with no bathroom breaks…), my former school has the same warm feel, the same welcoming vibe.

Kizirian Elementary, Providence

Kizirian Elementary, Providence

We simply had a great time in Rhode Island! From Narragansett to Quidnessett, Coventry to Providence, Warwick to Johnston, we met amazing students at every school. We even ventured into southern Massachusetts, to Braintree and Arlington. Students at every school jumped into a great discussion of empathy, self-image, and the power of activism. Through these conversations, and an amazing video of eight year old Jennifer Keelan climbing the steps of the US Capitol, we learned that one person, one kid, can indeed change the world! We spent some extra time with kids at Kizirian Elementary in Providence–they had great questions! Hope their biographies are coming along. We also want to send a big thank you to Wakefield Books for hosting a book signing with Grace and Marybeth!

Carol, Marybeth and Grace at book signing, Wakefield Books, RI

Carol, Marybeth and Grace at book signing, Wakefield Books, RI


Margo Toth, teacher extraordinaire, and Carol Liu

We also just got back from Illinois–Naperville to be exact, just outside of Chicago. What a great town, great kids! And I had the pleasure of meeting in person a wonderful teacher I’ve heard about for years, my husband’s fourth grade teacher from Madison, NJ. There she is, still in the classroom, still inspiring young minds. Her second graders had just finished reading Arlene On the Scene and had many insightful questions and responses.

At every school, students and teachers learn about Charcot-Marie-Tooth disease and the challenges our friends and families face each day. They begin to understand why the mission of the Hereditary Neuropathy Foundation is so important. More broadly, we highlight the power of empathy and the beauty in not accepting, not tolerating, but embracing differences.

Still left on the schedule this year: New York, Philadelphia, and Dallas. Be sure to let us know if you’re interested in a free author presentation! Details can be found on our program brochure, and you can email us any time for more information!

Carol with Elmwood 3rd GradersIMG_0979IMG_0965DSCN0158

Free Teacher's Guide! REVISED for Common Core!

Teachers: Print script from "Rebel Queen" for classroom.

Download Extension Activity here

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

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