Session 20 - Symposium: Teaching Children with Down Syndrome to Read: Family Perspectives
Organiser: Sue Buckley, Down Syndrome Education International, University of Portsmouth, sue.buckley@dseinternational.org
Presenters:
- Rebecca Hulbert, Parent and actor, UK
- Mary Cooney, Parent and Home educator, USA
- Debbie Austin, Parent and Workforce Development Manager, UK
- Sarah Holton, Parent and Teacher, Daniel Holton, Learner, UK
Discussant: to be confirmed
Abstract
My starting point in organising this symposium was my awareness of how much I have learned, and still learn, from parents as they observe their own children. I only started to investigate reading when this father wrote to me to tell me children with Down syndrome can learn to read sight words from 3 years of age and added these observations “Sarah’s reading ability has considerably helped the development of her speech. A week later after reading the sentence ’We went to Exeter’ Sarah reproduced it in speech, voluntarily and in context i.e. just after we had been to Exeter again. At that stage in Sarah’s development, she was quite incapable of reproducing a sentence such as ‘It is my turn’ even after many spoken repetitions by me and even though she could repeat each word correctly and even though she clearly understood, from her actions, what ‘It is my turn’ meant. Sarah was still at the ‘one word’ speech stage when she was reading and understanding sentences several years ahead of that stage in the usual sequence of language development. Duffen 1976. I will leave you to consider the three hypotheses embedded in this paragraph.
My own early experience (Buckley, 1985, Buckley, Bird, 1993) and other published case studies of exceptional readers (Groen et al 2006, Burgoyne et al 2016) indicate that the reading progress of children with Down syndrome has often been the result of their parents teaching them, from early years and through school years. Even though literacy teaching is now more widely available in schools, progress will still be influenced by parents teaching their children at home. Advice to parents to start teaching children to read early has been advocated for many years and an expert review points out that ‘better readers ...have been recipients of intensive training in reading and writing’. (Kay-Raining Bird, Chapman 2012).
In this symposium, parents share the progress of four children, two in early school years, still developing reading skills and two teenagers, with different challenges, describing their literacy achievements and ways they enhance their daily lives. The presentations give parents the opportunity to share their children’s progress, describe how they have taught them and their observations of the challenges for both their child and themselves. Daniel will tell his own story. Two parents also share their experience of teaching other children with Down syndrome or supporting teachers to teach reading in school.
In the discussion, we will consider implications of the presenters’ and learner experiences for working with parents and learners as partners in both research and practice.
- Duffen, L,. (1976). Teaching reading to children with little or no language. Remedial Education, 11, 139.
- Buckley, S. J. (1985). Attaining basic educational skills: Reading, writing and number. In D. Lane & B. Stratford (Eds.), Current approaches to Down’s syndrome (pp. 315–343). Cassell.
- Buckley, S.J., Bird, G. (1993). Teaching children with Down syndrome to read. Down Syndrome Research and Practice, 1(1), 33–41.
- Groen, M. A., Laws, G., Nation, K., & Bishop, D. V. M. (2006). A case of exceptional reading accuracy in a child with Down syndrome: Underlying skills and the relation to reading comprehension. Cognitive Neuropsychology, 23(8), 1190–1214.
- Burgoyne, K., Duff, F. J., Nielsen, D., Ulicheva, A., & Snowling, M. J. (2016). Bilingualism and Biliteracy in Down Syndrome: Insights from a Case Study. Language Learning, 66(4), 945–971.
- Kay-Raining Bird, E., & Chapman, R. S. (2012). Literacy Development in Childhood, Adolescence, and Young Adulthood in Persons with Down Syndrome. In J. A. Burack, R. M. Hodapp, G. Iarocci, & E. Zigler (Eds.), The Oxford Handbook of Intellectual Disability and Development (1st ed., pp. 184–199). Oxford University Press
Presentation 1: Teaching Arthur to Read
Rebecca Hulbert, Arthur’s Mum and Actor, beccahulbert@hotmail.com
Arthur is 5 years old and has Down syndrome. He started in a mainstream primary school in the UK in September 2024. In January 2025 his class teacher informed me that Arthur is in the most advanced group in his class for both reading and phonics abilities. How did Arthur make this progress, accessing learning at the same level as his typically developing peers in literacy?
In this presentation, I will describe Arthur’s progress from the first year of his life and the interventions we have used to help him progress his speech, language and reading development.
We began working on Arthur’s speech perception and production from his first year of life using visually supported activities from See and Learn Speech Sounds. To develop his language comprehension, we used See and Learn Language and Reading Resources.
With additional support from Arthur’s speech and language therapist, who is experienced in the Down syndrome learning profile, we began teaching Arthur sight words at the age of 3 and were surprised at how easily he learned them. We found that the See and Learn Language and Reading resources supported his vocabulary awareness, while the speech strand helped build strong foundations for his phonics learning, in turn this phonics awareness continues to support his whole-word sight reading.
I will share videos of Arthur reading and working on phonics to show his progress, along with examples of how we have approached reading as a family from the early days to now.
Our experience will illustrate the importance of joined up working between home, school and a Speech and Language Therapist who is aware of the Down syndrome learning profile. It will highlight the importance of communication between these 3 areas and consistency in approach and delivery, with repetition and overlearning opportunities being key to success.
Arthur’s peers are now aware of how well he reads, and this supports the class to see that we all have our strengths, as well as all having areas that we need additional support with, building an inclusive environment and further educating wider society on outdated stereotypes.
Presentation 2: Teaching Christopher and His Friends to Read
Mary Cooney, Christopher’s mum and Home educator, USA, marylourdescooney@gmail.com
Christopher, who is almost eight, has Down Syndrome, and is the youngest of six children. He is currently being homeschooled, as were all of his siblings.
When Christopher was 3 1/2, I started teaching him to read using See and Learn Phrases I. His progress surprised and encouraged us: Within a year, he went through all three See and Learn Phrases kits and was reading books such as Dick and Jane and Go, Dog, Go.
Reading became Christopher’s gateway to speech. It was through learning to read sight words that he could practice articulating sentences he never would have said spontaneously (at the time). He also began saying some of the words he had learned to read spontaneously.
At 4 1/2, Christopher began phonics. Having taught his five older siblings to read, I knew Christopher would require a novel approach: one that would take into account challenges with fine motor skills, and, since he had had so much success and enjoyment with See and Learn, one that would resemble or “feel like” that method. I was able to piece together a curriculum. And again, his progress amazed us. By the time he was 5 1/2, he was reading phonetically at a late second grade level.
In 2022, I began hosting a small Down Syndrome Co-op for Christopher and some of his extra special friends. I began tutoring the children in reading and guiding the moms on how to practice at home.
In this presentation, I will share materials and methods I have used for teaching sight words and phonics. I will show videos of Christopher and his friends learning to read. I will also show how I am currently working with Christopher to further advance his reading skills.
Presentation 3: Teaching Lucy to read.
Debbie Austin, Lucy’s mum and Workforce Development Manager, UK, debsdidi1@gmail.com
My 16-year-old daughter Lucy has Down syndrome and is autistic. She has high support needs, very limited conversational vocabulary, a concrete understanding of her world, and a sight vocabulary for reading.
We began using the See and Learn programme when Lucy was about 18 months following a year spent holding jolly phonics cards to my face while making the sound, much to her great amusement and interest.
Lucy started reception with six or seven sight words and her brilliant memory means that adding to that seems to be relatively easy for her. Although she learned the names of her letters, it quickly became clear that sight words were the best approach. Lucy’s autism means that letters changing their sound depending on their position in a word is very confusing. I have lost count of how many words she knows but it will be in the hundreds.
We started making personal books to increase her sight vocabulary in mainstream primary school. Now in year 11 at a special school we have several hundred of them.
I religiously make one every Sunday night called “My weekend book” Lucy takes them into school and uses them for her literacy. I use the Reading and Learning Intervention principles of a high percentage of known words in her books.
Lucy cannot follow the narrative of a typical story book; her personal books make sense to her. They bring out her spoken language as they give her formed sentences that she remembers and uses functionally.
It has not been easy to get education settings to work with us as partners in her education and to teach her to read. I quite honestly believe that if I hadn’t taught her a sight vocabulary and pushed for this in every IEP and EHCP meeting, no one would have thought she would have the ability to read and would not have invested the time into teaching her. This low expectation of our children with high support needs is a great injustice.
Lucy enjoys reading to her TA’s, to her family and to herself. Photographs are the only link she has to her past, adding language to them gives her a narrative for her memories.
How else can people with severe or profound learning disabilities share their personal history with others?
Presentation 4: Teaching children with Down syndrome to read - parent, teacher and learner perspectives.
Daniel Holton, Learner
Sarah Holton, Daniel’s mum and Inclusion Advisory Teacher LETS Go! Portsmouth UK, sholton@letsgouk.org
Daniel is now 18 years old and at Sixth form college. We began teaching Daniel to read in his preschool years alongside Early Development groups provided by Down Syndrome Education International. He had a bank of sight words and could recognise most single letter sounds before starting school, and his reading improved significantly in the first years of school. He completed his full-time education in mainstream primary and secondary schools in the UK. Daniel now reads well, navigating life using his skills – restaurant menus, social media and text messages, understanding scheduling and planning as well as learning lines for plays. We will share an overview of Daniel’s reading progress through his school years, the literacy teaching he has received, how it has been linked to his spoken language and writing /spelling progress and challenges we had to overcome (or have wanted to overcome!).
I am a qualified teacher with many years of primary teaching, especially Key Stage 1. Since 2013, I have worked as an Inclusion Advisory Teacher providing training and support to mainstream primary schools that include pupils with Down syndrome in their regular classes. In addition to sharing Daniel’s story, I will share the common questions that teachers ask about how to teach reading and the challenges they describe. Drawing on my experience as both a parent and a teacher, and Daniel’s views, I will suggest ways in which we can improve early intervention for speech, language and reading development and how we can improve teaching in the classroom.
