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Friday, 12 July 2013

'Teaching reading to people with Down syndrome: Busting the myths' - a series of 6 blog posts

Dr Kathy Cologon is a researcher at Macquarie University, in Sydney. Following publication of her recent academic paper (reference and link below), addressing some common myths about reading development in children with Down syndrome, Kathy has written a series of blog posts explaining the research for a wider audience. The images accompanying the posts have been generously contributed by Down Syndrome NSW members. Kathy's posts will be published here each Friday, for the next six weeks. We thank her for taking the time to provide this important information to our readers.

Charlie and his grandfather, Willem, love to read
Myth buster #1: More than meets the ear!
Kathy Cologon, Macquarie University

In recent research the mother of a 5-year-old girl who has Down syndrome shared with me this vision of her daughter as a reader:
“I want her to be a reader. Not just for bus timetables [or] stop signs, but a real reader, like to really love reading books for fun and to learn.”
Like so many other family members I have met, this mother is enthusiastic to support her daughter’s literacy learning. In the not so distant past, this would not have been considered possible. However, there is no question now that for this little girl, reading for pleasure and learning is a realistic and achievable goal. Unfortunately though, there are some remaining myths and misunderstandings that make working towards this goal harder for this little girl and her family than it should be.

I am writing this series of blog posts to parents and teachers in the hopes of supporting ongoing and appropriate literacy learning opportunities. However, I am aware that many people who have Down syndrome may also be reading this – if you are I hope you find this interesting. You, like me, have the right to learn to read and I hope that reading is a source of as much pleasure to you as it is to me!

I have worked with many people, who happen to have Down syndrome, and their families and peers. I have also collaborated with many teachers and other preschool and school staff who are committed to supporting all of their students in learning to read. Many of these people have expressed concern about the lack of information and the frequently incorrect and sometimes conflicting information available, and the difficulties that this poses for effective teaching. In this series of blog posts I will address six common misconceptions in order to provide information to assist families and teachers in making informed choices about educational opportunities for assisting people with Down syndrome in learning to read. It is my hope that by drawing together research on reading development in people with Down syndrome more people will be given the opportunity to become readers.

Before starting on the first of these six myths, I also wanted to recognise that individual differences between people who have Down syndrome are as widespread as within the population of people who do not have Down syndrome. As I mentioned, I am fortunate to know many people who happen to have Down syndrome and each is a unique individual with diverse interests, strengths and personalities – just like everyone I know who does not have Down syndrome! While people with Down syndrome are discussed as a group in these blog posts, this is not intended to reduce the importance of recognising the individuality of every unique person.

Reading can be a source not only of participation, choice and opportunity, but also of personal and shared enjoyment and engagement through reading for pleasure. However, if a person is not given the opportunity to learn to read then this wonderful world of reading is not available. The only way to find out how much someone can learn is to teach and keep on teaching!

There are a number of myths that may result in inappropriately low expectations and unnecessarily limited learning opportunities. In this series of blog posts I will address six of these myths concerning (1) receptive and expressive language (what we say and what we understand), (2) phonological awareness and phonic decoding (awareness of sounds and applying these to reading), (3) functional reading or reading for pleasure and learning, (4) ‘reading readiness’ or (non)linear development, (5) optimal learning age and, (6) reading comprehension. These blog posts draw on a recent paper published in the Australian Journal of Teacher Education. I have included a link to the full paper at the end of the blog post for those who are interested in reading more on these topics. I would like to express my thanks to the editor of the journal for permission to use the paper in this series of blog posts. Many thanks also to all of the people with Down syndrome, families and teachers who have allowed me to share in their journeys and from whom I have learnt so much.

Receptive and Expressive Language
Myth #1: What a person with Down syndrome can understand can be measured by what that person can say (or, in other words, the myth that limited speech equals limited ability).

Reality: It is well established that people with Down syndrome (amongst others) often understand far more than what they can say.

We live in a world where speech is commonly privileged over any other form of communication and it is common for people to assume that what someone can say indicates their intelligence and understanding. Of course this is not true! For many people this incorrect assumption leads to low expectations and a lack of learning opportunities.

In contrast to this myth, a considerable body of research demonstrates that people with Down syndrome (amongst others) generally have much greater receptive than expressive language skills. This means that a person with Down syndrome is likely to understand far more than what she or he can say.

This has implications for learning and participation, particularly in regards to processes such as reading, which are typically taught in a manner dependent on spoken language. It is important for teachers and families to provide alternative modes of participation (such as key word sign/Makaton and other visual approaches to support speech) and not to assume that what someone can say is indicative of what they understand. To figure out what someone actually understands requires spending time developing a relationship with that person and trying things out – given the commonly inappropriate and low expectations, the rule of thumb is usually expect a person to understand more than you initially assume!

Another point that is important when considering receptive and expressive language is that for some people who have Down syndrome, learning to read can be a pathway to speech. While further research is needed, research and anecdotal evidence suggests that some people begin to read words first and then these words begin to appear in their expressive vocabulary – in a sense making reading a ‘first language’. Additionally, articulation of words (clear speech) can be improved through reading, including through engaging with phonics activities. The common assumption is that a person will speak before she or he can learn to read. The discrepancy between this assumption and the reality for many people with Down syndrome needs to be considered in providing appropriate opportunities to learn to read and engage with the wonderful world of books from an early age onwards.

In sum, not only is it important to be aware that a person with Down syndrome is likely to understand more than she or he can say, but it is also essential not to hold back learning opportunities on account of expressive language difficulties. Learning to read involves far more than spoken language and for some it may even form a pathway to talking or improve the clarity of a person’s speech.

For full details of the research I am drawing from see: 
Cologon, K. (2013). Debunking myths: Reading development in children with Down syndrome. Australian Journal of Teacher Education, 38(3), 130-151.

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