Keeping Declan reading

(Abstract not available)

O'Connor, J. (2003) Keeping Declan reading. Down Syndrome News and Update , 3(1), 2-2. doi:10.3104/practice.204

"A friend of mine, who has a 19 year old son with Down's syndrome, asked me if I knew of any suitable reading books for this age group. When her son left school, he announced that he wasn't going to read any more books - I suppose this reaction could come from any young person! However, my friend is wondering if the reaction is more to do with the fact that books written for ordinary teenagers/young adults are beyond her son's capabilities whilst the books he can manage are too childish in content and, therefore, demeaning for him. She is also concerned that reading is a skill which needs to be practiced, she doesn't want her son to lose that skill. Does anyone know of any suitable reading material for teenagers/young adults that would fit the bill?"

When this question appeared on the UK Down Syndrome email list early in 2003, I was compelled to reveal all about my son's reading and TV/movie habits, and I have added some further thoughts about the importance of reading to this 17 year old who is not fond of 'school work'. It's not a prescription for teenage reading, just our experience, grown out of Declan's natural inclinations and access to good quality information made readily available to families like ours.

Declan (17) is a huge James Bond fan. His favourite book, which he knows extremely well, but enjoys re-reading often, is The Secret Life of Agent 007 , published by Dorling Kindersley. A large, 'coffee-table' format, it is filled with photos and drawings of every James Bond movie (except the most recent one), locations, Bond girls, villains, internal drawings of the various devices that Bond uses to save the world and that the villains use to threaten it. Not too many words, and the pictures are great. Often he reads with and to his Dad, a closet James Bond fan. He never asks me!

Declan and his father reading a book

Declan and his father reading 'The Book'

Declan remembers all these details, reinforced by his assiduous watching of the movies (he has the whole collection on video!), reading of "The Book", playing of the Nintendo 64 games, and his growing collection of fortnightly Bond magazines. Yes he does a lot of other stuff too, but this is a favourite form of relaxation!

You can take a look at The Book here (some editions do not have the red cover):
https://uk.dk.com/Book/BookFrame/0,1007,,00.html?id=075132860X
(or just put "James Bond" into the search box at https://uk.dk.com )

A number of Declan's friends who also have Down syndrome have envied this book so much (as he did when his friend had it before him), that we have given it as a birthday present to a number of them from about 15-17 years old. It is getting difficult to find here in Sydney, so when I came across 6 copies in the New Year sales, I bought them all, to pass on to others. And not all of the recipients have disabilities - there are lot of very strange people out there who are also huge James Bond fans!

A children's book that he still gets a lot of fun out of is Bamboozled by David Legge (Ashton Scholastic, 1994, now out of print according to www.amazon.com , but you might be able to find it in a library). It is a simple story, with wonderfully clear, colorful drawings of very silly scenes, with many, many things to laugh at in each one because they are so obviously ridiculous - a garden bed full of bulbs (light bulbs!), chairs with bumper bars, a mat that is actually a fish pond - it's hard to describe how entertaining it is! In addition to the sheer fun and giggling, there is so much to talk about - what would happen if you stepped on that mat? Would you wash the dishes under an elephant's trunk? Look at him mowing the carpet ... so many funny things. The reading of the words is the least part of the enjoyment, but still good fun, because the girl and her grandfather, whose house is the setting, cannot work out what is 'odd today', and don't think any of the scenes are strange at all.

It is worth checking with specialist bookshops (or teaching supplies stockists) for 'high interest - low ability' readers. I've looked at a number of series, although some them are still too difficult to motivate Declan to really sit and read them, and some of them are just too difficult.

We also like the CD-ROM reading package Spin Out Stories of interactive high-interest/low ability 'books' and other reading activities, aimed at junior high to high school ages. Declan particularly likes the stories about trucks and road building. Declan's school has bought both packages for their senior library, and the older kids really do like them. The publisher, Greygum, is in Australia, but has a distributor in the UK. Further details: www.greygum.com.au

I have written a review that is available at: https://members.iinet.net.au/~dsansw/spin_rev.html

Declan is at best a reluctant reader and writer, and a long way from the most accomplished of other young people with Down syndrome of his age. However, his speech is better than many, and his social skills are outstanding. These, along with good motor skills and good health, are his innate gifts, that have been relatively easy to nurture.

When Declan was 8 weeks old, we enrolled in an excellent community-based early intervention program based on the Macquarie University program, and he progressed to mainstream preschool (with support) and very early school experience, followed by most of primary school enrolled in a supported class in a mainstream school, and high school at a special school.

He learned a number of sight words at early intervention, but we did not embark on an intensive early reading program, although he was exposed to many books and a lot of reading from an early age, and saw us reading constantly.

There has always been an academic component in his school program (sometimes we have had to insist on its inclusion in his IEP), and a language rich environment at home - but he still finds reading and most other academic work difficult and he says, "boring". I think boring means a combination of difficult and not always well-matched to his interests. To keep Declan reading just for the sake of keeping up the skills, or as a performance would simply not work - it has to have a purpose that he can appreciate and that he values or he just won't do it. The last thing we want to do is to make reading a punishment or even a chore. I think he'd agree with the young man about whom the question of suitable reading materials was posed.

His current school suits him very well on the whole, but he does complain when he has to do 'school work' all day - he wants to do 'real work' (a job), which he values much more. He is happier with work experience, TAFE (Technical and Further Education) college and excursions into the community, all of which now occur as part of the school program. He will be leaving school one week after his 18th birthday in December 2003, much to his delight. He insists that we refer to school as his 'work', and says he's off to 'the office' each morning. He doesn't hate school by any means - he's just really upfront (and I think quite articulate) about the need for it to have practical meaning for him. This year, he is the school captain, and having a great experience being an acknowledged leader - "I'm responsible", he tells us proudly and appropriately.

To keep him reading and writing, we have developed (under Declan's guidance, and in response to his level of comfort) a range of activities that make sense to him. Motivation and personal interest are everything:

Declan and Emma collaborating on a weekly menu

Declan and Emma collaborating on a weekly menu

Please don't tell him that any of these activities are 'good for him', or have anything to do with schoolwork, and I hope he never finds out that he could have legally finished school at 15!

In an earlier question on an email list, a parent had worried that her child's speech and language development might 'stall' at some stage (around seven). That might have been suggested to her - we still hear such outdated and simply ill-informed pronouncements from the most surprising sources. We also sometimes hear it said (usually by teachers) that children with Down syndrome who aren't reading by 12 - or whatever age the child conveniently is - will never learn to read, so "we don't do literacy". And then they don't learn - a self-fulfilling prophecy if ever there was one.

I hope that my note about Declan's obviously continuing development of communication skills and the range of literacy and language activities that he encounters and enjoys on a daily basis helped to encourage her and to allay her fears.

We haven't done intensive formal speech therapy (he hasn't seen a speech and language therapist since he was not quite five - I don't count the very infrequent and token visits by the school therapy teams of our experience), but he has had a lot of communication opportunities and a great deal of language input, both at home and school, and he's lucky to have none of the more complex difficulties of speech that some people with Down syndrome have to deal with. His hearing is good, and we have been aware of its importance from a young age, because of our knowledge of Sue Buckley's work on language development, (and research on the utility of reading to promote language development).

When Declan first went off to school at just over five, barely using two word phrases consistently, we hardly dared hope that he would ever be able to speak as well as he can now, let alone read for pleasure (well a bit, anyway!). In a family that tends to be 'bookish', it's nice to see that sometimes it's Declan with his 'head stuck in a book' ignoring the world, even if it is James Bond.

Of course I don't know exactly what impact being an active, if sometimes reluctant, reader has had on Declan's continuing language development, but I'm sure that it has helped, and I am pleased for all of us that his vocabulary, syntax, grammar and abstract thought processes are still developing at a noticeable rate, at the grand old age of 17½.

The O'Connor family

The O'Connor family

The combination of communication and reading skills matters to him because he knows he's developing competence and more adult skills, and it makes his way in the world easier. Literacy and language might be the difference between a job he really wants and one that's all that's offering. If he doesn't need to read and /or write for the job he wants to do, keeping up his reading skills will certainly make other aspects of his life easier - even the ability to make a phone call independently with a printed number can give him a measure of adult privacy and control that many people with intellectual disabilities never enjoy.

So how will we keep him reading?

Why else would he bother?

Jill O' Connor is Information Officer for The Down Syndrome Association of New South Wales, Australia www.dsansw.org.au/