‘To start talking phonics is crazy’: how parents understand ‘literacy’ in the lives of children with learning disabilities

References

• Brandt, D., and K. Clinton. 2002. “Limits of the Local: Expanding Perspectives on Literacy as a Social Practice.” Journal of Literacy Research 34 (3): 337–356. doi:10.1207/s15548430jlr3403_4.
   Web of Science ®Google Scholar
• Braun, V., and V. Clarke. 2020. “One Size Fits All? What Counts as Quality Practice in (Reflexive) Thematic Analysis?.” Qualitative Research in Psychology 18 (3): 1–25.
   Web of Science ®Google Scholar
• Brewster, S. 2004. “Insights from a Social Model of Literacy and Disability.” Literacy 38 (1): 46–51. doi:10.1111/j.0034-0472.2004.03801008.x.
   Google Scholar
• British Educational Research Association (BERA). 2018. Ethical Guidelines for Educational Research. 4th Ed. London: BERA. https://www.bera.ac.uk/publication/ethical-guidelines-for-educational-research-2018 [Accessed 24 Nov. 2021].
   Google Scholar
• Bromley, T., G. Oakley, and L. Vidovich. 2019. “The Enactment of Literacy Curriculum Policy by Early Childhood Teachers in Two Australian Schools.” Literacy 53 (3): 160–169. doi:10.1111/lit.12166.
   Web of Science ®Google Scholar
• Browder, D., S. Gibbs, L. Ahlgrim-Delzell, G. R. Courtade, M. Mraz, and C. Flowers. 2009. “Literacy for Students with Severe Developmental Disabilities: What Should We Teach and What Should We Hope to Achieve?” Remedial and Special Education 30 (5): 269–282. doi:10.1177/0741932508315054.
   Web of Science ®Google Scholar
• Bryan, J. 2018. Eye Can Write: A Memoir of A Child’s Silent Soul Emerging. London: Lagom.
   Google Scholar
• Burgoyne, K., and K. Cain. 2020. “The Effect of Prompts on the Shared Reading Interactions of Parents and Children with down Syndrome.” International Journal of Disability, Development and Education 1–15. doi:10.1080/1034912X.2020.1755423.
   Web of Science ®Google Scholar
• Department for Education [DfE]. 2013. “The National Curriculum in England: Key Stages 1 and 2 Framework Document.” https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/425601/PRIMARY_national_curriculum.pdf [Accessed 24 Nov. 2021].
   Google Scholar
• Department for Education [DfE]. 2014. “National Curriculum in England: English Programmes of Study.” https://www.gov.uk/government/publications/national-curriculum-in-england-english-programmes-of-study/national-curriculum-in-england-english-programmes-of-study [Accessed 24 Nov. 2021].
   Google Scholar
• Doak, L. 2021. “Rethinking Family (Dis) Engagement with Augmentative and Alternative Communication.” Journal of Research in Special Educational Needs 21 (3): 198–210. doi:10.1111/1471-3802.12510.
   Web of Science ®Google Scholar
• Doukas, T., A. Fergusson, M. Fullerton, and J. Grace. 2017. Supporting People with Profound and Multiple Learning Disabilities. Core and Essential Service Standards. 1st Ed. PMLD Link: Northampton. https://www.pmldlink.org.uk/wp-content/uploads/2017/11/Standards-PMLD-h-web.pdf [Accessed 24 Nov. 2021].
   Google Scholar
• Fairclough, N. 1995. Critical Discourse Analysis. Longman: London and New York.
   Google Scholar
• Fletcher-Campbell, F. 2000. Literacy and Special Educational Needs: A Review of the Literature. Great Britain: DfEE. https://dera.ioe.ac.uk/4473 [Accessed 24 Nov. 2021].
   Google Scholar
• Flewitt, R., M. Nind, and J. Payler. 2009. “If She’s Left with Books She’ll Just Eat Them’: Considering Inclusive Multimodal Literacy Practices.” Journal of Early Childhood Literacy 9 (2): 211–233. doi:10.1177/1468798409105587.
   Google Scholar
• Fornefeld, B. 2013. “Storytelling with All Our Senses: Mehr-Sinn Geschichten.” In Using Storytelling to Support Children and Adults with Special Needs (pp.87-94), edited by N. Grove. Abingdon: Routledge.
   Google Scholar
• French, C., and M. Marshall. 2018. “Why Communication from a ‘Locked-in Child’ Is a Miracle We Must Question” The Guardian, February 5. UK Edition. https://www.theguardian.com/science/blog/2018/feb/05/why-communication-from-a-locked-in-child-is-a-miracle-we-must-question [Accessed 24 Nov. 2021].
   Google Scholar
• George, I. A. 2020. “How Can Public Libraries Make ‘Reading for Pleasure’ Accessible for Children Who May Not Achieve Conventional Literacy?” Humanities Commons. https://hcommons.org/deposits/objects/hc:32542/datastreams/CONTENT/content [Accessed 24 Nov. 2021].
   Google Scholar
• Grace, J. 2014. Sensory Stories for Children and Teens with Special Educational Needs: A Practical Guide. London: Jessica Kingsley Publishers.
   Google Scholar
• Heath, S. B. 1982. “What No Bedtime Story Means: Narrative Skills at Home and School.” Language in Society 11 (1): 49–76. doi:10.1017/S0047404500009039.
   Web of Science ®Google Scholar
• Hulme, C., K. Goetz, S. Brigstocke, H. M. Nash, A. Lervåg, and M. J. Snowling. 2012. “The Growth of Reading Skills in Children with down Syndrome.” Developmental Science 15 (3): 320–329. doi:10.1111/j.1467-7687.2011.01129.x.
   PubMed Web of Science ®Google Scholar
• Hunt, R. 2011. Oxford Reading Tree. Oxford: Oxford University Press.
   Google Scholar
• Johnson, E., J. Bornman, and E. Alant. 2010. “Parents’ Perceptions of Home Reading Activities: Comparing Children with and without Learning Disability.” Perspectives in Education 28 (1): 34–43.
   Web of Science ®Google Scholar
• Karaahmetoglu, B., and F. Turan. 2020. “Investigation of Parental Early Literacy Beliefs and Early Literacy Home Environment of the Children with Developmental Disability and Typical Development.” Hacettepe University Journal of Education 35 (2): 243–254.
   Google Scholar
• King, S. A., C. J. Lemons, K. A. Davidson, D. Fulmer, and A. A. Mrachko. 2020. “Reading Instruction for Children with down Syndrome: Extending Research on Behavioral Phenotype Aligned Interventions.” Exceptionality 1–17. doi:10.1080/09362835.2020.1749631.
   Web of Science ®Google Scholar
• Kliewer, C., D. Biklen, and C. Kasa-Hendrickson. 2006. “Who May Be Literate? Disability and Resistance to the Cultural Denial of Competence.” American Educational Research Journal 43 (2): 163–192. doi:10.3102/00028312043002163.
   Web of Science ®Google Scholar
• Kliewer, C. 2008. Seeing All Kids as Readers: A New Vision for Literacy in the Inclusive Early Childhood Classroom. Baltimore: Paul H. Brookes Pub.
   Google Scholar
• Lacey, L. L., H. Lawson, H. Lawson, H. Lawson, and H. Lawson. 2007. “What Is Literacy for Students with Severe Learning Difficulties? Exploring Conventional and Inclusive Literacy.” Journal of Research in Special Educational Needs 7 (3): 149–160. doi:10.1111/j.1471-3802.2007.00092.x.
   Google Scholar
• Lawson, H., L. Layton, J. Goldbart, P. Lacey, and C. Miller. 2012. “Conceptualisations of Literacy and Literacy Practices for Children with Severe Learning Difficulties.” Literacy 46 (2): 101–108. doi:10.1111/j.1741-4369.2011.00603.x.
   Web of Science ®Google Scholar
• Lemons, C. J., and D. Fuchs. 2010. “Phonological Awareness of Children with down Syndrome: Its Role in Learning to Read and the Effectiveness of Related Interventions.” Research in Developmental Disabilities 31 (2): 316–330. doi:10.1016/j.ridd.2009.11.002.
   PubMed Web of Science ®Google Scholar
• Locke, T. 2004. Critical Discourse Analysis. London: Bloomsbury Publishing.
   Google Scholar
• Mencap. 2019. “General Election 2019 Easy Read Manifestoes.” https://www.mencap.org.uk/get-involved/campaign-mencap/elections/general-election-2019-easy-read-manifestos [Accessed 24 Nov. 2021].
   Google Scholar
• Mercieca, D., and D. P. Mercieca. 2009. “Literacy with Parents for Children with Profound and Multiple Learning Difficulties.” Educational and Child Psychology 26 (4): 55.
   Google Scholar
• Morsy, L., T. Khavenson, and M. Carnoy. 2018. “How International Tests Fail to Inform Policy: The Unsolved Mystery of Australia’s Steady Decline in PISA Scores.” International Journal of Educational Development 60 (C): 60–79. doi:10.1016/j.ijedudev.2017.10.018.
   Google Scholar
• Mullet, D. R. 2018. “A General Critical Discourse Analysis Framework for Educational Research.” Journal of Advanced Academics 29 (2): 116–142. doi:10.1177/1932202X18758260.
   Web of Science ®Google Scholar
• O’Leary, K. A., B. Flückiger, J. Paynter, and M. F. Westerveld. 2019. “Parent Perceptions of Literacy Learning of Their Young Children on the Autism Spectrum in Their First Year of Schooling.” Australian Journal of Education 63 (2): 140–156. doi:10.1177/0004944119860639.
   Web of Science ®Google Scholar
• Ortlipp, M. 2008. “Keeping and Using Reflective Journals in the Qualitative Research Process.” The Qualitative Report 13 (4): 695–705.
   Google Scholar
• Parker, I. 1994. “Reflexive Research and the Grounding of Analysis: Social Psychology and the Psy‐complex.” Journal of Community & Applied Social Psychology 4 (4): 239–252. doi:10.1002/casp.2450040404.
   Web of Science ®Google Scholar
• Ratz, C. 2013. “Do Students with down Syndrome Have a Specific Learning Profile for Reading?.” Research in Developmental Disabilities 34 (12): 4504–4514. doi:10.1016/j.ridd.2013.09.031.
   PubMed Web of Science ®Google Scholar
• Ricci, L. 2011. “Home Literacy Environments, Interest in Reading and Emergent Literacy Skills of Children with down Syndrome versus Typical Children.” Journal of Intellectual Disability Research 55 (6): 596–609. doi:10.1111/j.1365-2788.2011.01415.x.
   PubMed Web of Science ®Google Scholar
• Roberts-Tyler, E. J., M. Beverley, J. C. Hughes, and R. P. Hastings. 2020. “Teaching Conventional Early Reading Skills to Children with Intellectual Disabilities in Special Schools in the UK: A Survey of Current Practices and Perceived Barriers.” European Journal of Special Needs Education. doi:10.1080/08856257.2020.1764810.
   Web of Science ®Google Scholar
• Robinson, D., N. Moore, and C. Harris. 2019. “The Impact of Books on Social Inclusion and Development and Well‐being among Children and Young People with Severe and Profound Learning Disabilities: Recognising the Unrecognised Cohort.” British Journal of Learning Disabilities 47 (2): 91–104. doi:10.1111/bld.12262.
   Web of Science ®Google Scholar
• Ryan, S., and K. Runswick-Cole. 2009. “From Advocate to Activist? Mapping the Experiences of Mothers of Children on the Autism Spectrum.” Journal of Applied Research in Intellectual Disabilities 22 (1): 43–53. doi:10.1111/j.1468-3148.2008.00438.x.
   Web of Science ®Google Scholar
• Schnorr, R. F. 2011. “Intensive Reading Instruction for Learners with Developmental Disabilities.” The Reading Teacher 65 (1): 35–45.
   Web of Science ®Google Scholar
• Snow, C. E. 2017. “Early Literacy Development and Instruction: An Overview.” In The Routledge International Handbook of Early Literacy Education: A Contemporary Guide to Literacy Teaching and Interventions in A Global Context, edited by N. Kucirkova, C. E. Snow, V. Grøver, and C. McBride, 5–13, Abingdon: Taylor and Francis.
   Google Scholar
• Snowling, M., H. Nash, and L. Henderson. 2008. “The Development of Literacy Skills in Children with down Syndrome: Implications for Intervention.” Down Syndrome Research and Practice.https://assets.cdn.down-syndrome.org/pubs/a/reviews-2066.pdf[Accessed 24 Nov. 2021].
   Google Scholar
• Street, B. V. 1995. Social Literacies: Critical Approaches to Literacy in Development, Ethnography and Education. Harlow: Longman.
   Google Scholar
• Street, B. 2006. “Autonomous and Ideological Models of Literacy: Approaches from New Literacy Studies.” Media Anthropology Network 17: 1–15.
   Google Scholar
• Ten Brug, A., A. A. J. Van der Putten, A. Penne, B. Maes, and C. Vlaskamp. 2016. “Making A Difference? A Comparison between Multi‐sensory and Regular Storytelling for Persons with Profound Intellectual and Multiple Disabilities.” Journal of Intellectual Disability Research 60 (11): 1043–1053. doi:10.1111/jir.12260.
   PubMed Web of Science ®Google Scholar
• United Nations [UN]. 2002. “United Nations Literacy Decade: Education for All.” https://digitallibrary.un.org/record/454946?ln=en#record-files-collapse-header [Accessed 24 Nov. 2021].
   Google Scholar
• United Nations [UN]. 2006. “Convention on the Rights of Persons with Disabilities.” https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html [Accessed 24 Nov. 2021].
   Google Scholar
• van Bysterveldt, A. K., G. Gillon, and S. Foster-Cohen. 2010. “Literacy Environments for Children with down Syndrome: What’s Happening at Home.” Down Syndrome Research and Practice 12 (2): 98–102.
   Google Scholar
• Ware, J. 2004. “Ascertaining the Views of People with Profound and Multiple Learning Disabilities.” British Journal of Learning Disabilities 32 (4): 175–179. doi:10.1111/j.1468-3156.2004.00316.x.
   Google Scholar
• Westerveld, M., and A. K. van Bysterveldt. 2017. “The Home Literacy Environment of Preschool-age Children with Autism or down Syndrome.” Folia Phoniatrica Et Logopaedica 69 (1–2): 43–53. doi:10.1159/000475840.
   PubMed Web of Science ®Google Scholar
• Wilkinson, S., and C. Kitzinger. 2013. “Representing Our Own Experience: Issues in ‘Insider’ Research.” Psychology of Women Quarterly 37 (2): 251–255. doi:10.1177/0361684313483111.
   Web of Science ®Google Scholar
• Willig, C. 2008. “Discourse Analysis.” In Qualitative Psychology: A Practical Guide to Research Methods, edited by J. A. Smith, 143-167. London: Sage.
   Google Scholar