Mom writes book to help kids talk about differences

By Louise Kinross

“This is me,” Sheriauna said proudly when she saw the book her mom Sherylee Honeyghan had published.

The cover is of a young black girl wearing a tiara, smiling at herself in the mirror. She has one hand.

Growing up, Sheriauna, now 10, didn’t see herself in the books and toys around her. Dolls “aren’t black, don’t have hair like me and have two hands,” she’d tell her mom. The only time Sheriauna saw herself was when she drew her own pictures. “She always drew herself without her left hand,” Sherylee says, noting that she was born with an amputation below her left elbow.

I am Sheriauna is a new children’s book Sherylee wrote six years ago, when Sheriauna was four.

“When she was younger she didn’t have the vocabulary and emotional regulation to explain ‘this is why I am the way I am,’” Sherylee says. “If children stared or asked what happened to your hand, she’d get frustrated and would cry. I wanted to open a conversation between children and the adults in their life where they could start to understand what an amputee is, and that people with differences are people, too.”

The book covers Sheriauna’s birth and her first prosthesis, fitted at Holland Bloorview. It talks about the things she can do with her prosthesis, and the things she does better without it. “It includes her encounters with other people and how that made her feel,” Sherylee says. “I explain why people might stare or be curious, because she doesn’t look exactly like them. The message is that we’re all different, and the world would be a boring place if we were all the same.”

When Sheriauna was small, Sherylee taught her to say “I was born this way and I’m special” when others asked about her arm. “When we were raising her, we always told her ‘God made you this way and everyone is different in their own way.’”

Sherylee says she wrote the book with simple language, from the perspective of a four-year-old, so that it’s easy to understand.

Today, Sheriauna is a social butterfly who adores hip-hop and loves to help others, her mom says. “She’s at the age where she can be her own advocate and participate in conversations. She’ll be involved in promoting the book and the message behind it.”

Sherylee hopes to launch a website for the book in the next couple of weeks.

She encourages parents to talk openly with children with physical differences. “My advice, first and foremost, is don’t shy away from the conversation with your child. From the get-go I would always roll up Sheriauna’s sleeve, for her mobility and accessibility. The social worker told me ‘You want to let her know that it’s okay to show your stump, to roll up your sleeve, and for people to see that there’s nothing wrong with what’s there.’”

Sherylee says that while it’s natural to want to protect your child, “the reality is that we can’t be there every minute. We have to equip them with the vocabulary, understanding and messaging to take with them, to get them through awkward moments and to feel more empowered.”

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What's in a word? Stigma

The other night I found Ben in bed, his face behind a book that was jiggling about because he was laughing so hard.

The book was The Tale of Benjamin Bunny by Beatrix Potter.

It's a tiny hardcover book my dad read to me as a child. My dad was a wonderful storyteller and hearing him read was like listening to music. On the floor beside the bed was The Tale of Peter Rabbit.

Ben has always loved the antics that Beatrix Potter's animals get up to. He wouldn't let me see what page he was on, but I figured it was something about Benjamin and Peter getting into trouble in Mr. McGregor's vegetable garden.

After he went to sleep I flipped through the book and came to this illustration of old Mr. Bunny (Benjamin's father) lunging at the cat who's been sitting, for five hours, on a basket under which Peter and Benjamin quiver.

Old Mr. Bunny had no opinion whatever of cats. He took a tremendous jump off the top of the wall on to the top of the cat, then cuffed it off the basket, and kicked it into the green-house, scratching off a handful of fur. The cat was too much surprised to scratch back. 

That was probably the page I thought.

Ben has always loved the absurd, the over-the-top, the darkly humorous.

When I saw him that night, I couldn't imagine anyone more happy or caught up enjoying a moment.

And who am I to question that his way of life is any less valuable because of his IQ, I thought, because he's not thinking what average 18-year-olds do.

Today is the fifth year of Spread the Word to End the Word, the campaign by Special Olympics to get people to stop using the word "retard" because it's a demeaning slur against people with intellectual disabilities.

I'm tired and not a little disheartened with the arguments put forward, often by the brain elite, that when words like retard, imbecile and moron are used, the speaker doesn't have a person with intellectual disability in mind.

Come on.

Everyone knows that these words have a particular zing because they were once descriptors for people with intellectual disabilities. As the most stigmatized, hated and feared group on earth, calling someone a retard, imbecile or moron is the ultimate put-down.

I remember being asked to fill out a survey at a large children's hospital about prenatal testing. The survey was being conducted by students who were training to be genetics counsellors.

One of the questions asked whether, as a parent, I would terminate a pregnancy because the child had mental retardation and would have no quality of life.

The question was problematic because of its simplistic construction, equating low IQ with a wasteland worse than death.

High IQ is not correlated with a good and satisfying life, and neither can low IQ be assumed to suck the richness out of life.

So next time you're looking for a word to heap ridicule on someone—stop... and think—and leave people like my son alone.

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Great resources for sex education

Woodbine House has produced two excellent guides to puberty and sexuality: The Boys' Guide to Growing Up and The Girls' Guide to Growing Up. The books are written at a Grade 3 level with illustrations and the information is clear and positive.

They're targeted to youth with intellectual disabilities but I think are great "Coles Notes" versions for any pre-teen or teen -- cutting through jargon and delivering the facts kids need to know.

The boys' guide includes everything from what to do about zits and body odour to crushes, masturbation, keeping yourself safe and what's private and what's public.

The books are written by a sex educator who has a daughter with Down syndrome.

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Mr. Ben?

Last week when Ben walked into the Kumon waiting room with a volunteer she was all smiles.

“Flawless!” she exlaimed, holding up a book of sums adding 4 that Ben had just finished.

Ben and I grinned and I could imagine his chest filling with pride.

Every child needs to feel successful and I’m grateful that Ben is having this opportunity – even if it’s totally out of whack with the typical learning trajectory of kids.

At the same time, I remind myself that less than a year ago Ben couldn’t even write – much less sit focused and add numbers.

I’m doing a presentation for some medical and research students and I keep coming back to how my conceptions of disability (intellectual and physical) before having my son were wrong. WRONG. WRONG. WRONG. So far off the mark.

And how conventional ways of measuring success can never come close to capturing the complexity, richness and essence of a human being.

Right now Ben is enamored with the Mr. Men series of 49 children’s books. You know – Mr. Greedy, Mr. Brave, Mr. Daydream, Mr. Dizzy, Mr. Bump.

I remember these books as a child. Apparently they were created by British author/illustrator Roger Hargreaves after his son Adam asked: “What does a tickle look like?”

Ben doesn’t want me to read these books with him. He wants to enjoy them himself. There's something about the characters and how their names match their appearance and personalities that Ben finds humorous. Being so petite himself, perhaps he's also drawn to the little square format of the books and the little characters. Who knows, maybe he sees himself as Mr. Ben.

Back to my presentation. We don’t need to make disabled kids ‘normal.’ We need to open people’s minds to see youth with disabilities as full human beings with their own rich worlds.

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Book series brings Madi to life

I LOVED Sarah Leal's first children's book -- So Don't! And See What Happens. She just released a third -- The Cottage Tooth Fairy -- and is working on a fourth. One of the main characters in this series is Madi -- a girl with cerebral palsy who uses a voice device. Madi is based on Sarah's daughter Madi, now 15, who lives with Sarah and her husband Luis in Guelph, Ontario. I asked Sarah why she started this series and why it would be of interest to families of children with disabilities. Here's what she had to say:

I started writing this series when my daughter Madi was little. She had SO MANY appointments and we had to wait in many a waiting room so we would bring a ton of books and read and read and read. After reading the same stories over and over I started to change up the character names to match Madi's friends and family. Then I started to change the stories too. As Madi got older I looked to buy books with a main character with a disability who was hopefully non-verbal -- but had no luck. The only books that I found seemed rather "educational" and that was not what I wanted. I decided that there was a spot for me in the writing world, and that was how I got started writing my books.

All of my stories come from a part of our real life. Then I shape them and sprinkle in some fun. The Cottage Tooth Fairy comes from a real toboggan ride that my husband Luis and Madi took. It resulted in the loss of Madi's first molar and Luis being scolded for not holding on tight enough. LOL! This story has Madi and her fictitious brother Colin finding out what happens when you lose a tooth at the cottage. Childhood hijinks to trick the Tooth Fairy result in a whopper of a problem, and some rather angry cottage wildlife.

My books give an opportunity for a child with a disability to relate to the story without being centred out. Peers can enjoy a story that supports acceptance -- again without being told explicitly.

My books can be shared with peers and educators who are involved in your child's life. Other students may look at their classmate differently when they realize that people with disabilities live lives just like theirs.

One day when Madi was about four a little girl in the park asked me about why Madi uses a wheelchair. I gave my usual response: "Some people are born and need to wear glasses to see. Madi was born and needs to use a wheelchair to get around." The girl said "like a fancy accessory." I just about fell over with laughter. To this little girl the chair was a fancy accessory. Love it! Disability in my stories is an "accessory."

I have sold my books in Canada, the U.S., England, Hong Kong, Australia, Argentina, Dubai, South Africa and New Zealand. I have the best job in the world. My next venture is to get into the school boards and be a guest author. Eventually, perhaps my daughter Madi would like to take this over. It would be amazing for her to go into a class and read to children.

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Two pet rats -- and one syndrome

A delightful children's book landed on my desk today. It's called Melanie & Tommy have two pet rats and one syndrome.

It's narrated by Tommy, 6, and follows his adventures with sister Melanie, 9, as they push their pedal car around their Ontario farm and rely on two pet rats to get them out of trouble.

Tommy came up with the book idea when friends made fun of his sister, Melanie, who has Cornelia de Lange syndrome, a genetic condition.

Listen to this CBC radio interview or visit the family at http://www.2petrats.com/.

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Acceptance = book's message

Arlene has plans, Big, Big Plans. She's going to be the youngest ever student government officer in Greenwood Elementary history. She'll be the biggest thing to hit little Rhode Island since the invention of coffee milk. Sure, she wears purple leg braces and has a weird-sounding disease called Charcot-Marie-Tooth, but that won't stop her. Onward she marches, bending rules and blasting stereotypes in an effort to win no matter what.

So reads the back cover of Arlene on the Scene, a new chapter book for children aged six to 12 written by Carol Liu, a social worker and attorney, with her friend Marybeth Caldarone, a speech therapist. Marybeth and her 9-year-old daughter Grace have the same nerve disorder as the main character. Proceeds from the book will be donated to support people living with Charcot-Marie-Tooth disease. I interviewed Marybeth about the book and its message.

BLOOM: How did Arlene on the Scene come to be?

Marybeth Caldarone: The author Carol grew up in Rhode Island and I grew up in New York. I came to Rhode Island for college and Carol was one of my roommates. We hit it off and became really close. Carol was a great listener and loved to look at things from different perspectives. We used to talk about how people didn’t understand what it’s like to live with a disability and how we should write a book one day. Over the years we kept in touch and Carol would keep track of things I said. After she had her kids and was at home, Carol began to write and sent the first couple of chapters to me. I couldn’t believe it. This was a book I would pick up in the store and not think twice. We’d go back and forth where I would critique what she’d written: “Do you think this is really how Arlene felt?” or “Would she say that or do that?”

BLOOM: What is the book about?

Marybeth Caldarone: For younger kids, the characters are so likable and funny things happen. It’s just an enjoyable story about school and the different antics the kids get up to. Older kids can really get into the theme of the book, which is about acceptance. Arlene is a person with a disability. She starts out wondering “Are people going to accept me?” Over time she realizes that she herself is not accepting everyone as much as she’d like to be accepted. The main character – Arlene – is loosely based on my daughter Grace and the mom is loosely based on me.

BLOOM: What do you hope to achieve through the book?

Marybeth Caldarone: Initially we wanted to raise as much money as we could for Charcot-Marie-Tooth research. We'd like to raise awareness of CMT so we don't get a blank stare when we mention it. But as it progressed, Carol began to see the book as a tool for helping people see that it’s not all about finding a cure. It’s also about accepting people for who they are, whether they have a disability or not.

BLOOM: Why is it important that children’s books have characters with disabilities?

Marybeth Caldarone: Disability is a natural thing. It’s all around us and it’s something everybody should be exposed to. Some of the kids in the school I work at are reading the book and they’ll come to me to ask whether things that happened in the book have happened to my daughter. It’s opened up a lot of discussion.

BLOOM: What does your daughter Grace think about the book?

Marybeth Caldarone: At first I think she didn’t know what to make of it. Now she sees how positively the book is being received. A lot of the kids in her school have read it and it makes her feel special and important because she knows about the whole purpose of the book. While the book was being written it was a great tool for her to explore how she feels about things. She would read excerpts that Carol had written and say: “No, that would never happen” or “I would never do that.” It gave me a lot of insight into how she feels about what’s going on. Grace reads parts of the book now and laughs because she can relate to it.

Read more about Arlene on the Scene at the authors' website. Carol and Marybeth are already working on a second book in the series called Arlene Goes Green.

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Great reading

Here are links to several stories and blog posts that I found particularly interesting.

The first is an article in the UK Times about the importance of disabled characters in children's books. It's written by a dad with a disability and talks about In the Picture, a British campaign to encourage publishers, writers and illustrators to include children with disabilities. This is one of the resulting illustrations!

So Don't! And See What Happens! is a Canadian example that includes Madi - a girl with cerebral palsy who uses a voice-output device. What I love about this book is that it's not about Madi's disability - Madi, her wheelchair and her talking machine are simply part of the story, part of the everyday life that I want my son to see himself in.

Over at Hopeful Parents is a lovely post about accepting our children's journeys - and our own. None of us are is written by Kyra Anderson, who blogs about her 8-year-old son with Asperger syndrome at This Mom.

I found this poem posted by the mom of a 17-year-old with global delays and mental-health issues at Just Me particularly moving: i never made it to dance class.

And Ellen at To the Max shared this powerful Bill of Rights for Parents of Kids with Special Needs.

Cheers, Louise

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