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PARENTAL LITERACY VISIONS FOR CHILDREN WITH DOWN SYNDROME

Visions for literacy: parents aspirations for reading in children with Down syndrome
Leila Ricci and Anna Osipova
perceptions and visions for the reading development of their children with DS. Why are parents expectations of and visions for childrens reading important? Studies have shown that the home literacy environment provided by parents facilitates the development of early reading skills in typically developing children (Baker & Scher, 2002; Bus, van IJzendoorn & Pellegrini, 1995; DeTemple, 2001; Senechal & LeFevre, 2002; Storch & Whitehurst, 2001). The home literacy environment is often dened as the frequency and nature of literacy-related activities in the home, particularly shared parentchild book reading (Payne, Whitehurst & Angell, 1994). A print-rich home environment in which parents read with their children results in childrens growth in language skills, conceptual knowledge, phonological awareness, letter knowledge, knowledge of print conventions, reading strategies, and interest in reading (Baker & Scher, 2002; Bus et al., 1995; DeTemple, 2001; Gunn, Simmons & Kameenui, 1998; Payne et al., 1994; Senechal & LeFevre, 2002; Storch & Whitehurst, 2001). Furthermore, a teaching focus in the home, dened as the frequency of teaching children to read and print words, relates to childrens acquisition of phonemic awareness, letter knowledge and vocabulary (Foy & Mann, 2003). Although little research exists specically on the early literacy experiences of children with DS, parents do seem to provide these children with rich home literacy environments, with the most frequent literacy activity being shared story reading (Fitzgerald, Roberts, Pierce & Schuele, 1995). Families of children with DS report having 50 or more childrens books in their homes and reading to their children for 10 to 30 minutes per day (Al Otaiba, Lewis & Whalon, 2009). In light of these documented home practices of families of children with DS, it is critical to carry out further investigation of parents views on the reading development of these children. Certain characteristics typically seen in children with DS have led researchers to investigate reading in this population. For instance, children with DS often exhibit a weakness in expressive language and a relative strength in visual memory (Fowler, 1990; Kumin, 1994; Leddy, 1999; Hodapp, Evans & Gray, 1999; Hodapp & Ricci, 2002). Although there is a range of reading achievement among these individuals, as many as half of children and adolescents with DS were able to read at least 50 words (Buckley, Bird & Byrne, 1996; Buckley & Sacks, 1987). Some 60% to 70% of individuals with DS in Australia and the UK achieve functional levels of literacy (Buckley, 2001). Some children

Although children with Down syndrome (DS) can learn to read, few studies have explored parental perspectives on the reading development of this group of children. This article, written by Leila Ricci and Anna Osipova, from California State University, explores visions and expectations regarding reading held by parents of children with Down syndrome in the US. Parents of 50 children with DS (aged three to 13 years) completed a survey about their childrens interest in reading and responded to open-ended questions inquiring about their views on their childrens reading development. A majority of parents in this study described their childrens positive attitude toward reading, stated their reading-related goals for their children, dened their childrens relative strengths in reading, and shared strategies used in the home to promote literacy in this population. Parents pay close attention to and have high expectations for their childrens reading achievement, and thereby would benet from partnerships with informed educators willing and capable of teaching reading to children with DS. Key words: reading, literacy, parental perspectives, Down syndrome.

Reading is a foundational skill, serving as a gateway to the rest of a childs formal education (American Federation of Teachers, 2008). It is no wonder then that our nation places a high priority on reading through such legislation as No Child Left Behind (2001), requiring that every American child learn to read by the end of third grade. Children with Down syndrome (DS), along with other children with disabilities, are included in these national efforts. Earlier studies have shown that parents of children with DS seem attuned to their childrens cognitive and linguistic characteristics, often advocating for appropriate speech and reading interventions for these students (Fidler, Hodapp & Dykens, 2002; Fidler, Lawson & Hodapp, 2003). This effort appears worthwhile since individuals with DS can attain functional levels of literacy and achieve better than expected performance in reading (Byrne, Buckley, MacDonald & Bird, 1995; Byrne, MacDonald & Buckley, 2002; Laws, Buckley, Bird, MacDonald & Broadley, 1995). Since few studies have focused on parental perspectives related to literacy in this population, the present study explores parents

2012 The Authors. British Journal of Special Education 2012 NASEN. Published by Blackwell Publishing Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA. DOI: 10.1111/j.1467-8578.2012.00547.x

with DS can read at levels that are not only comparable to the reading abilities of typically developing children, but are also more advanced than their own cognitive abilities (Byrne et al., 1995; Byrne et al., 2002). Some researchers have found that the very act of reading helps improve the speech and language skills of children with DS (Buckley, 2001). Children with DS have been found to improve in their phonological awareness and reading skills as a result of weekly interventions targeted at phonics instruction (Cologon, Cupples & Wyver, 2011). Lemons and Fuchs (2010) emphasise the need for further research on the reading skills of children with DS, especially the role of phonics-based instruction. Despite this growing body of research on reading and DS, very few studies have explored parental perspectives on the reading skills and potential of these children. In a study of the educationally related knowledge of parents of children with intellectual disabilities, 23.8% of parents reported that their children with DS received instruction in reading in their schools (Fidler et al., 2002). Furthermore, 60% of the parents in the study desired more reading instruction for their children with DS. In a similar study, Fidler et al. (2003) found that parents of children with DS had a range of responses regarding reading, with some indicating an emphasis on overall reading instruction and others emphasising specic skills and programmes. The present study extends this earlier research by exploring parental perspectives about the reading development of children with DS. Method Participants The participants in this study consisted of 50 parents of children with DS, all of whom were diagnosed with trisomy 21. The children consisted of 25 boys and 25 girls between the ages of three and 13 years. As shown in Table 1, the mean mental age (MA) of these children was 3.74 years, using average age-equivalent scores on the Communication domain of the Vineland Adaptive Behavior Scale (Sparrow, Balla & Cicchetti, 1984). Sixty-two percent of the children were Caucasian, and 24% were of Hispanic descent. Ninety-four percent of the families were English-speaking, with a few families whose primary language was Spanish or Russian. The parents who responded to the survey were primarily mothers in their late 30s with some college education. Procedure The rst author conducted a brief phone interview and survey focused on understanding parents perspectives about reading and their children with DS. Approval to conduct this research was obtained from the Institutional Review Board at the University of California, Los Angeles. Families of children with DS were recruited through parent support groups in the greater Los Angeles area. Some families were present at meetings in which the rst author sought volunteers for participation, while other families later responded to yers announcing the research study. Once parents consent to participate in the study had been obtained, the rst author contacted the parents via telephone to conduct a
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Table 1: Characteristics of families of children with DS

Variable Chronological age of child (mean SD) Vineland communication age-equivalent score (mean SD) Primary language spoken in the home English Spanish Russian Ethnicity of child Caucasian Hispanic Asian American Other (mixed ethnicity) Mothers age (mean SD) Years of mothers education (mean SD) No. of siblings (mean SD) Presence of hearing impairment (yes:no) Hours mothers work outside the home (mean SD) Parents marital status (married:divorced or separated) Active member of DS support group (yes:no) Has anyone talked about reading to your child with DS? (yes:no) No. of sources of DS reading advice (mean SD) No. of hours of reading instruction received in school No. of hours of reading instruction received at home Participants 7.91 (3.40) 3.74 (2.11)

47 2 1 31 12 1 6 39.82 (6.57) 14.82 (2.22) 1.78 (1.37) 3:47 16.19 (17.64) 46:4 33:17 39:11 2.26 (1.54) 3.04 (0.88) 2.11 (0.96)

brief interview about their childs functioning and mailed questionnaires to the families inquiring about their family characteristics and home literacy practices. The parents completed and returned the questionnaire to the university by mail or in person. Instruments A demographics questionnaire measuring the characteristics of children with DS and their families was developed for this study. The questions about the child included date of birth, gender, ethnicity, enrolment in educational programmes, and presence of hearing loss. Family characteristics consisted of parents ages, highest level of education completed, occupations, ethnicity, range of family income, number and ages of siblings, number of other adults living in the home, number of hours parents work outside the home, and languages spoken in the home. The questionnaire also asked whether parents belong to DS support groups (yes or no), the degree of their involvement (not active to very active), whether anyone had spoken to them about teaching reading to their child with DS (yes or no), and the number of sources of reading advice (for example, the childs teacher, relatives, parents of other children with DS, speakers at events related to DS).

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All parents were interviewed by phone using the Communication domain of the Vineland Adaptive Behavior Scale (Sparrow et al., 1984), which measures competence in receptive, expressive and written language in individuals from birth to 18 years of age. Normed on 3,000 individuals, the Vineland has good reliability and validity (with median reliability coefcients ranging from 0.80s to 0.90s). The Communication domain of the Vineland has been used as a measure of mental age in previous studies of children with DS (Hodapp, Ricci, Ly & Fidler, 2003; Ricci & Hodapp, 2003). All parents in this study responded to an open-ended question that probed their perspectives about their childrens reading development. The question also invited parents to share any relevant anecdotes. Parents responded to this prompt by writing their thoughts in paragraphs, which were then coded by the authors using qualitative analyses. The Child Interest in Reading Questionnaire, measuring childrens enjoyment of reading, was based on previous studies that have examined childrens interest in reading (DeBaryshe, 1995; Storch & Whitehurst, 2001). The questionnaire contained the following items: 1. 2. 3. 4. 5. In a typical week, how often does your child amuse himself/herself with books? In a typical week, how often does your child ask you to read to him/her? Typically, how much does your child like reading books with you? How many books does your child like to read each time you read with him/her? How many favorite books does your child have?

During the second step of analysis, the codes were analysed for emerging themes. Twenty-eight initial open codes were collapsed into nine central themes. Some themes retained the central code in the cluster. For example, we kept the theme name of goals when we collapsed several codes, such as parents key goal, parents expectations and parents hopes. Other themes received an independent label from the initial codes. For example, such codes as reported child as a good reader, reported being happy with childs progress and reported that reading is hard for the child were collapsed into a broader theme of present levels of performance. To enhance the validity of this study, the two authors engaged in the following procedures, recommended for sound analysis of qualitative data (Brantlinger et al., 2005). First, the two authors met regularly during the process of data coding to debrief in order to increase the credibility of our qualitative coding. The system of codes described above was formed and nalised based on these discussions. The meetings were held throughout the open coding stage and during the stage when the nine central themes were identied. The authors independently coded 30% of all the responses. They reached 90% inter-rater reliability in this process. Results Childrens interest in reading Descriptive analyses on the Child Interest in Reading Questionnaire revealed that children with DS have a strong interest in reading. On this questionnaire, 82% of parents reported that their children with DS like reading books a lot or really love it, and 64% of parents reported that their children with DS amused themselves with books as often as ve times per week or more. Parents also reported that their children request at least two or more books during joint reading sessions (64%) and have two or more books that they consider favourites (60%). Furthermore, parents reported that their children with DS ask them to read books together ve times per week or more (52%). Parental perspectives on reading Nine themes emerged from the qualitative analysis of parents written responses. In their open-ended comments, the parents of children with DS frequently mentioned their childs attitude toward reading, their goals for their child, their childs present level of reading as being an area of strength (and for some parents, an area of concern), their strategies for reading with their child, their childs interaction with print, their familys interactions with print, the homeschool interaction related to print, and their needs and fears related to their childs reading. Table 2 shows the percentage of participants who discussed each theme, as well as what percentage of the total responses reected each theme. Childs attitude toward reading A majority of parents discussed their childrens positive attitude toward reading (82%).
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The ve items were scored along a ve-point Likert scale. Data analysis procedures The quantitative data from the Child Interest in Reading Questionnaire were analysed using SPSS. Descriptive statistics using frequency counts and percentages of responses were examined to determine the trends in the data. Qualitative data were coded using the grounded theory approach (Glaser & Strauss, 1967). Initially, parents responses to the open-ended question were coded using initial open codes. Every sentence or thematically organised cluster of sentences that contained a complete thought was given a code. Many of the codes were based on the key words that represented the main idea of the parent response. For example, a response of I have a goal of my child being able to read was given the code goals. Within the same code category were responses that did not contain the key word, but were similar to it in their message, such as I want him to relate to books with things that happened in his life . . . or can happen in future . . . recognise situations when they are presented to him: doctor, dentist, optometrist. The two authors independently came up with 28 codes, as they coded 30% of the data. They reached 90% agreement in their initial codes.

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Table 2: Percentage of themes in responses

No. and % of participants who discussed it 41/50 = 82% 36/50 = 72% 31/50 = 62% 17/50 = 34% 16/50 = 32% 15/50 = 30% 9/50 = 18% 8/50 = 16% 5/50 = 10% % of total responses 41/178 = 23% 36/178 = 20% 31/178 = 17% 17/178 = 9.6% 16/178 = 9% 15/178 = 8.4% 9/178 = 5.1% 8/178 = 4.5% 5/178 = 2.8%

Theme Childs attitude toward reading Parents goals for child Reading as area of strength Strategies for reading Reading as area of concern Childs interaction with print Family interaction around print Homeschool interaction around reading Parents fears or needs

Present level of performance: reading as a strength Many parents in this study described their childs present level of performance in reading as an area of strength (62%). These parents were well aware of their childs exact level of achievement in reading, with several reporting that their child had a repertoire of more than 100 sight words and knowledge of letter names and sounds. Several parents also reported the specic grade level of their childs reading achievement, which ranged from rst grade to fth grade. One mother described her sons attainment of reading: He began to recognize pictures and relate them to sound when he was about 2 years old. For example, bus, cat, dog. Later he recognized the combination of sounds in relation to the character in the picture. For example, o as a round conguration of the lips. He really took off at about 8 yrs old in 2nd grade. Now at 13 yrs he reads uently with few words mispronounced. Parents also stated that their childs strength in reading improved their speech and language skills, as in this example of a girl whose mother said: she knows all of her upper and lower case letters (including the sounds associated with the letters), sight recognizes approximately 300 words and can read simple books with simple sentences. Her speech is more intelligible and her grammar is better when she is reading (rather than spelling.) Parents of children exposed to more than one language also revealed that their children were developing literacy in both languages. Strategies for reading Some parents (34%) also shared strategies for supporting their childrens development of reading skills. Parents emphasised that they read books aloud to their children daily at an early age, using such terms as since he was in the womb, at birth and from day one. Parents stated that they used sign language, ashcards for teaching sight words, and educational computer programmes. Several parents discussed their use of Love and Learning, a structured sightword reading programme specically for children with DS. Other strategies used by parents during shared reading included paraphrasing text for younger children with DS, making up their own story to accompany pictures in a book, omitting words and waiting for the child to ll in, and selecting books related to the childs interests and necessary life skills. Present level of performance: reading as a difculty Although the majority of parents in this study described reading as an area of strength for their child, 32% of the parents described reading as an area of difculty due to their childs limitations in cognitive and speech skills. Some of these parents mentioned their childs difculty in phonetically sounding out letters in words; others stated that even after their child learns to decode simple words, comprehen-

These parents stated that their children love to read or that reading is a favourite activity for their children with DS. Parents used phrases such as really likes to read, always loves to be read to, high interest in reading, and reading gives child much satisfaction, pride, and sense of accomplishment. One mother stated that a trip to the library is like a trip to Disneyland for her child. Other parents described their children as toting several books around with them, even sneaking extra books into backpacks and preferring to read over other activities. Parents described their childrens joy in the predictability of stories and of imitating facial features of characters in books. Many parents shared the feeling of pride their child experienced in book-related tasks, such as holding a book correctly or recognising a new word. Parents goal for child to be a reader Many parents in this study also stated that one of their key goals is for their child with DS to become a reader (72%). These parents envisioned their children as becoming procient readers who enjoy reading for pleasure. To these parents of children with DS, there seemed little doubt that their children with DS would acquire reading skills. Several parents mentioned the current grade level or future level at which they would like their child with DS to read. For example, one mother stated: Reading is the single most important goal I have for my son . . . I hope he can eventually read at a functional 4th grade, at least, level. A mother of a preschool-age child with DS shared her thoughts in this way: I know that she will read. I do not know when but I know she will. I can see her reading books on her own, her bible on her own, combining sentences and paragraphs on her own. The time will come. It is our goal that she learns to read and write. Even if we have to hire a private tutor, we will teach her and help her achieve this goal.
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sion of more elaborate text remains an area of challenge. According to several parents, their childrens difculty or lack of speech contributes to difculties in reading because others cannot understand what the child with DS is reading. One mother stated: because she is so speech delayed, its hard work getting her to start reading words. She mumbles and talks all the time, but you cant always understand what she is saying. Childs interaction with print Additionally, some parents in this study (30%) discussed their childs interaction with print. Parents shared that their children with DS engaged with print by pretending to read as well as pointing at words and pictures and asking what does that say? One mother described her daughters interaction with print in this manner: A recent occurrence was when we were reading a new book called No Biting that has ip pages with a few words on the page. After reading the book a second time, my daughter remembered the responses and when she was asked the words on the page as I pointed she seemed to read the words as well. My husband was impressed when she actually pointed to the words and read the words off the page by herself. Several parents mentioned their younger children imitating older siblings demeanour during reading and reading aloud to make-believe friends. Family interaction around reading Of the parents participating in this study, 18% discussed their familys interaction with reading. These parents described shared reading as a family activity, with mothers, fathers, older siblings and grandparents reading aloud to the child with DS. They described reading together every night as an important family ritual. One mother stated that through modelling by an older sibling, her child has cultivated a similar taste for books. They love bedtime stories and enjoy looking through books together before the lights are turned off. Home/school interaction Eight out of 50 (16%) of the parents in this study discussed the interaction between home and school, sharing both positive and negative experiences with teachers. Several mentioned time spent in reading instruction at their childs school and the skills that teachers are working on with their children, such as reading sight words and sounding out new words. A few parents mentioned that teachers were unaware of how to teach reading to children with DS, with one mother stating, the educators dont or wont have any faith that they can read. As a result, these parents said they try to compensate by bringing resources to teachers or using more strategies to teach their children to read at home. Parents fears/needs Finally, 10% of parents in this study shared their fears or needs related to reading achievement in their children with

DS. These fears included television as an interference with reading, nding books at the childs reading level, and knowing the proper approach for teaching children with DS to read. Discussion The goal of this study was to investigate parental perspectives on the reading development of their children with DS. First, parents responses indicate that children with DS have a strong interest in reading. On the Child Interest in Reading Questionnaire, 82% of parents reported that their children like reading books a lot or really love it. More than half of children with DS interacted with books frequently, asked their parents to read with them often, and had two or more favourite books. The most frequently occurring theme in parents open-ended responses was their childrens positive attitudes toward reading, with one parent describing a trip to the library as being like a trip to Disneyland for her child. This positive interest in reading in children with DS serves as a call to educators to increase their efforts to teach reading to these children as indicated by federal mandates (No Child Left Behind, 2001). This study also revealed that parents have clear and very ambitious goals with regard to reading development in their children with DS. This studys nding that 72% of the parents described reading as a key goal for children with DS further underscores the importance of providing literacy interventions for this population. The parents in this study were positively predisposed toward their childrens reading progress, with some showing acute awareness of their childs level of reading performance as well as useful interventions. As in earlier studies which showed parents of DS as being well-attuned to their childrens developmental levels (Fidler et al., 2002; Fidler et al., 2003), the parents in this study shared specic details about what their children had achieved in the area of reading. For example, some shared the exact number of words their child could read, while others indicated the grade level at which their child is reading. Furthermore, parents described both their family interactions and home/school interactions related to literacy, indicating that they are proactive in engaging others to support the reading development of their children with DS. Thirdly, data from this study provide further evidence that children with DS can indeed learn to read, conrming ndings of earlier studies (Byrne et al., 1995; Byrne et al., 2002; Laws et al., 1995). The children with DS had a range of reading skills, extending from a sight word vocabulary repertoire of more than 100 words to reading at the sixth grade level. Parents reported that their children had beneted from early interventions aimed at increasing their reading skills. Like families in earlier studies, these parents also reported a desire for additional reading instruction for their children with DS (Fidler et al., 2002; Fidler et al., 2003). Furthermore, parents in this study shared various strategies for teaching reading, indicating that they actively seek ways of improving their childrens literacy skills. These parents shared storybook reading at an early age has been found to
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be an important component of a literacy-rich home environment (Baker & Scher, 2002; Bus et al., 1995; DeTemple, 2001; Payne et al., 1994; Senechal & LeFevre, 2002; Storch & Whitehurst, 2001). Some of the strategies described by these parents including paraphrasing text, making up their own story to accompany the pictures in a book, omitting words and pausing for the child to ll in might be worthy of further investigation to determine if they are indeed effective with this population. It is important to note that although many parents described reading as an area of relative strength for their children with DS, some also described it as a difculty due to the childs cognitive and speech delays. Several parents mentioned that even when their children with DS learn to decode words, comprehension of text remains an area of challenge for them. We need further studies in this eld to have an accurate understanding of the reading potential and achievement of children with DS. Finally, 10% of the parents in this study shared their concerns related to their childrens reading achievement centred on minimising distractions such as television, and nding the right books and the right approach to teaching reading to children with DS. This nding highlights the need to support and empower parents in building their childrens reading skills.

The limitations of this study must also be considered. First, this study is based on parents estimations of their childrens reading abilities instead of independent assessments of childrens reading skills. The small sample size of this study might also limit its generalisability. We do not know if these parents represent the views of others with children with DS. Furthermore, the participants in this study consist mainly of middle-class, Caucasian families, who may or may not report similar experiences and beliefs about reading as parents with diverse cultural, linguistic and economic backgrounds. Further investigation of parental perspectives related to reading in children with DS is therefore needed to conrm these ndings. Nevertheless, as one of few studies investigating parental perceptions of literacy in this population, this study contributes to our base of knowledge about reading development in children with DS. According to many parents in this study, children with DS have a strong interest in reading and can indeed learn to read. These parents also have ambitious goals for their children and go to great lengths to support their growth in reading. In pursuing national efforts to help all children become competent readers, educators should build upon this knowledge and build home/school partnerships with families to support the reading progress of children with DS in their classrooms.

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Address for correspondence: Dr Leila Ricci California State University, Los Angeles Special Education and Counselling 5151 State University Drive Los Angeles California 90032 USA Email: Lricci@calstatela.edu Article submitted: March 2012 Accepted for publication: July 2012

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