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“Dear Harry Stiles” – one mom’s approach to literacy. By Erin Sheldon.

December 31, 2013

Erin Sheldon is a mom, researcher, speaker and leader from Ontario, and one of my favourite people to connect with.  We are so grateful for Norm Kunc and Emma Van der Klift for the introduction and to Erin who took time out to write this article for us.  Thanks! 

"Dear Harry Stiles..."

“Dear Harry Stiles…”

I work with families to develop literacy skills in our sons and daughters who are diagnosed with significant disabilities. The best part of this work is that I get to show families that their child has more skills, more knowledge of literacy, than the family ever knew before. It’s rare that anyone has shown us how our kids are potentially literate, rare that someone has described our child’s behaviours as actively becoming literate. Showing a family that their child has literate potential is emancipatory, both for us as the parents and for our child.

The flip side of this work is that so many families are already doing as much as they possibly can to improve the life of their son or daughter. Suddenly developing  literacy skills becomes one more chore, one more task, on top of the long list of what “experts” have already told us we need to do. Now, if our son or daughter fails to become literate, that is just one more thing we are responsible for, one more failure that rests at our door.

It doesn’t have to be this way. Literacy work with our kids who have never before been imagined as potentially literate can be fun, natural, and powerful. I have three tips to work on literacy with our kids without drowning in the work.

First, literacy experiences with our kids are an invitation, not a chore. We are inviting our sons and daughters to join what researcher Chris Kliewer calls “the literacy flow.” The literacy flow is all the ways we use literate acts to relate to each other, to share our stories, to make sense of the world and share the meanings we make of the world and our experiences in it.

The literacy flow is all the ways we use literacy to get things done. We write grocery lists so that we get the foods we want to eat. We type words into YouTube search engines so we find the videos we want to watch. We read and write status updates on Facebook so we can share our most individual self (or some fictional version of our self!) with the world.

The literacy flow is about being powerful. We write wills and care plans and instructions so that we can ensure things happen the way we need them to. We sign our name to identify our property and to claim our creations, to enter into contracts with others and to signify our agreement.

Most of our sons and daughters with significant disabilities have been excluded from the literacy flow. They have never been imagined as potentially literate. They may have mobility challenges that make it hard to move to the places where we read and write for important purposes. They may have motor challenges that prevent them from holding a pen or pencil and making any recognizable mark. They may have sensory challenges, such as low vision, that make it hard to see all the ways the people around them are reading and writing. When we focus on literacy for our sons and daughters, we focus on making these activities accessible to our children.

We can infuse literacy into our daily lives with our children in the simplest of ways. When we make the grocery list or write out a menu, we can use a letter board or white board to list the first letters of key foods we want to eat. We can encourage our son or daughter to select a letter and then brainstorm the item that they might be thinking of. “You selected the letter C. I wonder if you are thinking about cookies or cake! Maybe you are thinking of something healthy, like carrots or cauliflower!” We can watch for signs of agreement so that when our child responds to an option we’ve described, we quickly write it down.  Our son or daughter sees that the alphabet is a way to make things happen.

Literacy is real and meaningful when it gets us what we want. We can use the alphabet to help our son or daughter brainstorm who to invite over: “J for Jordan or M for Macy?” A simple white board and dry erase marker can introduce letters of the alphabet into all the key decisions we make during the day. Do we want ‘S’ for spaghetti or ‘P’ for pizza? We always know we have the whole alphabet available so there are many more options if neither spaghetti nor pizza is the preferred choice!

Inviting our kids into the literacy flow means rejecting the limits of the traditional special education concept of “functional literacy.” Literacy is inherently functional because it’s about power, relationship, citizenship, and sharing our individuality.  If our son or daughter has not experienced literacy this way, then our literacy work at home is an invitation to be part of personally meaningful literacy experiences. A fun and simple activity is making alphabet books about our child’s life: A-Z books of the people in their lives, the activities they most enjoy, and the interests that make them so individual. Favourite foods can be added to an A-Z book so that P is not just some random squiggle, but P comes to mean pizza, Peter, and purple.

My second tip: Think of reading like chocolate. Reading is powerful and meaningful when it’s so delectable, so irresistible, that we can’t help ourselves from engaging in it. If our children haven’t shown interest in reading so far, then we need to read something else. Forget the simple readers about the cat who sat on the mat with the hat. Ask what reading material is like chocolate to our sons and daughters. It might be digital books about Harry Stiles, cookbooks packed with pictures of tasty foods, birthday and holiday cards from loved ones, books packed with photos of animals or babies, food nutrition labels, car repair manuals, train enthusiast magazines, or stories written about their own personal interests and the people they love the most.

Reading is enticing and irresistible when its individualized to the topics that make us the happiest and most engaged. If our sons and daughters are not interested in reading, then chances are, we haven’t found their “chocolate” reading materials. Books about ourselves and our everyday experiences are always age-appropriate and personally meaningful. The Center for Literacy and Disability Studies is packed with resources for finding and making personalized reading materials, from remnant books to PowerPoint book templates to the free easy-to-read books on Tar Heel Reader.

For some kids (and adults!) books that get a big response from others are the most enticing; for the most reluctant readers, try reading the book “That’s Disgusting!” by Francesco Pittau, or, better yet, write your own book about all the most disgusting things you and your son or daughter can think of.  It is guaranteed to get a big reaction! What matters most is that reading is engaging and irresistible and powerful.

One of Maggie's favourite pictures to write about - her, her friends and Harry Stiles!  Thanks to all for permission to share this :)

One of Maggie’s favourite pictures to write about – her, her friends and Harry Stiles! Thanks to all for permission to share this 🙂

My third tip: think of writing as power. Forget tracing letters or copying words: that is just a motor act. Writing is powerful when it’s about translating the thoughts in my head into a symbolic form that someone else can relate to. This is hard work! For anyone with a communication disability, translating thoughts through writing is even more difficult. In fact, the process of learning to use symbols or technology or a communication system to speak for us is the same cognitive process of learning to write. If our son or daughter is learning to use symbols or photos to express their ideas, wants, and needs, then they are engaging in the same cognitive act as writing. What makes writing worth all that effort is that it expresses something powerful.

If our child has motor disabilities, then we need to remove some of the motor demand from the task of writing so that he can focus his energies on creating his message. To do this, we use an “alternative pencil.” An alternative pencil is anything that gives our child access to the entire alphabet: a computer keyboard, a letter board, an iPhone keyboard, whatever makes the most sense.  Jane Farrall, a speech therapist and special educator, describes alternative pencils in her resource-packed blog.

Writing is most powerful when it is on topics of our own choosing. For my own daughter, writing is usually about friends, family, and Harry Stiles. She writes with the full alphabet using a computer keyboard or my iPhone. She writes using any marker or pencil crayon she can find, on any surface she can reach. Photos of her favourite people doing their favourite activities tend to motivate the most writing. We rely on the photos to know what she is writing about because most of what she types with a keyboard is not yet decipherable. That’s OK! This is a form of scribbling and she is learning that letters convey meaning, represent words, and can be combined and recombined to express different meanings. Her most common writing is essentially writing captions to photographs, using real photos and paper or writing digitally on her iPad.

Writing needs to be for an authentic purpose. Why write a note home about her day at school if your teen can write her Facebook status update instead? Why trace her name if your tween can write a note to a friend? Writing can involve just one letter or can involve strings of letters that do not yet resemble words. What matters most is that our sons and daughters have access to the full alphabet to learn through personal experience that letters and words are powerful and can convey any meaning we want to express.

So many individuals diagnosed with significant disabilities have never had access to the full alphabet. Yet the alphabet is the single most powerful symbol system in the world. Ensuring that our sons and daughters have access to exploring the alphabet is the first step towards developing their literate potential.

Literacy work should be chocolate, not spinach. It should be about power, not motor control or obedience. And it should always be an invitation to join us in the literacy flow where we use words and letters, everyday, to make important things happen.

For more information about literacy for students with significant disabilities, visit www.aacgirls.blogspot.ca and the Center for Literacy and Disability Studies at the University of North Caroline, Chapel Hill www.med.unc.edu/ahs/clds

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Note: An essay by Erin, “Maggie’s Contributions,” appears in our anthology, From Institutions to Individuals: On Becoming Person- Centred.   Part of what we hoped for in this book is that it would represent a cross-section of parents, self-advocates, academics and researchers, being interviewed, in dialogue and as academic writing.  It is not only one of our favourites, but is a popular work in the college courses which are using this as a textbook.   

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One Comment leave one →
  1. January 2, 2014 5:55 pm

    Love this article Erin….to be reminded about having fun with literacy with my friends, and with some great tips to boot!!

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