Infants and Children with Developmental Disabilities Emergent Literacy and Reach Out and Read

1. Infants and Children with Developmental Disabilities Emergent Literacy andReach Out and Read Monica H. Ultmann, M.D. Director, Center for Children with Special Needs and Division of Developmental Behavioral Pediatrics Floating Hospital for Children at Tufts Medical Center Clinical Professor of Pediatrics Tufts University School of Medicine Boston, Massachusetts .

2. Objectives • Discuss the concept of emergent literacy and the implications for infants and children with developmental disabilities. • Present literacy challenges in infants and children with specific developmental disabilities. • Discuss delivering anticipatory guidance surrounding literacy issues with families of infants and children with developmental disabilities.

3. Emergent Literacy: Definition • In addition to being a cognitive process, literacy acquisition involves a complicated balance of social, psychological, and linguistic factors. • Process of learning about the environment leading to the development of meaning and concepts, including reading and writing. • Early language and literacy experiences form the foundation for later reading, writing, and language competencies. • Children’s literacy skills develop before training in reading and writing. • Reading and writing develop concurrently. • “Characterized by the early development of understanding that abstract symbols have meaning and that people use these symbols for the communication of ideas” (Koenig, 1992)

4. Emergent Literacy: The Concept • Complex process that is a continuum beginning at birth continuing throughout an individual’s lifetime. • Emergent literacy as an example of “scaffolding” child development. • Focuses primarily on the child as an active learner and the adult as a facilitator and extending child-initiated learning.

5. Emergent Literacy: The Concept (con’t) Involves all domains of child development: • Early verbal and nonverbal interactions Environmental interactions Motor exploration • Broadens as child acquires intentional language and concepts Wider explorations • Child gains understanding of language and symbols Has experience with books Gains fine motor skills for scribbling and drawing • Child gains concepts of reading and writing

6. Emergent Literacy: The Concept (con’t) • Constructive: Through communication and exploration the child builds internal concepts about all aspects of his/her environment. • Functional: Over time child develops necessary skills to function in his daily environment (reading a calendar and directions). • Interactive: Involves feedback from adults and other children in regard to language and play.

7. Emergent Literacy: Components • Reading Aloud: The most important factor in laying the groundwork for a child’s later love of reading. • Concept of a Symbol: Acquiring the understanding that a symbol represents something that has functional meaning. • Emergent Writing: Reading and writing concepts develop concurrently and children learn from demonstration and experience. • Literacy Environments: Opportunities in a child’s environment play a crucial role in encouraging literacy development: Adult interactions and role modeling in literacy activities. Availability of books and writing material for hands-on experiences. Adults who value literacy interactions and the child’s reading efforts.

8. Emergent Literacy: Implications for Infants and Children with Developmental Disabilities • Quantitative and qualitative divergence in experiences which often limit the progress of emergent literacy acquisition: Limited interactive, sensory, or cognitive skills Altered communicative intent Physical barriers to exploration • Environmental implications: Significant time devoted to physical care and therapies Attachment issues and parent/child interactions Caregiver insights, attitudes, and involvement Misunderstanding or underestimating child’s abilities, thus limiting their access and experience with books, toys, games, and writing material

9. Literacy Challenges in Infants and Childrenwith Developmental Disabilities:General Considerations • Maintaining individual and joint attention during story book reading. • Pointing to pictures or to words. • Holding a book or turning pages. • Understanding words because of limited experiences • (visual, hearing, tactile). • Understanding story content due to delayed language development. • Participating in story retelling, predicting, commenting. • Participating in the chanting of songs, rhymes and stories. • Holding and controlling pencils, crayons, markers, paint brushes. • Manipulating magnetic letters, puzzle pieces, card games. • Adapted from Augmentative Communication Community Partnerships Canada • (ACCPC, 2004)

10. Literacy Challenges in Infants and Childrenwith Developmental Disabilities:General Considerations • Challenges complicated by the frequent co-existence • of multiple developmental disabilities: • Sensory impairments (vision, hearing, tactile) • Attentional challenges • Motor planning difficulties and mobility issues • Developmental language issues • Learning disabilities • Mental Retardation

11. Sensory Deficits:Hearing Impairment How a child’s hearing loss impacts the attainment of new developmental milestones depends on several important factors: • The age at which the child’s hearing loss occurs is important. Infants born with hearing loss face different challenges than toddlers, preschool, and school-age children who may have had some hearing for crucial periods in their development. • The severity and type of the hearing loss have an important impact on their overall development. • How correctable the child’s hearing is with amplification, such as hearing aids, plays a significant role in their development. • Presence of additional disabilities, such as a cleft lip or palate, that also affect motor, language, self-care, personal-social, and cognitive skills.

12. Hearing Impairment (con’t) • During a primary care visit: • Assess visual and auditory attention and focus. • Assess fine motor skills, pointing, and imitation. • Assess language development: imitation and degree of speech • production. • Assess posture/position of child in relation to adult reading with • child.

13. Sensory Deficits:Visual Impairment: Low Vision, Blind How a child’s vision loss impacts the attainment of new developmental milestones depends on several important factors: • The age at which a child’s visual loss occurs is important. Infants born with vision loss face different challenges than toddlers, preschool, and school-age children who may have had some sight for crucial periods in their development. • The severity and type of the vision loss experienced by a child has an important impact on their overall development. • How correctable the child’s vision is with optical aides, such as glasses, plays a significant role in their development. • A child may have additional disabilities that also affect their motor, language, self-care, personal-social, and cognitive skills

14. Visual Impairment: Low Vision, Blind (con’t) Expect children with visual impairment to: • Show curiosity and ask questions. • Listen. • Get close to objects. • Need opportunities to explore his or her environment. • Need to be shown how to do things. • Be unaware of dangers and need to be taught.

15. Visual Impairment: Low Vision, Blind (con’t) • Assess attentiveness/orientation to the reader. • Assess independent mobility and exploration, crucial tools • for environmental awareness, interaction, and concept • development. • Assess tactile awareness and fine motor skills crucial for • turning pages, orienting books, exploring objects, and learning • Braille. • Assess language development, including repetition and memory.

16. Visual Impairment: Low Vision, Blind (con’t) Maeghann 4 years, 10 months Hallerman-Streiff Syndrome Short stature Hydrocephalus with shunt placement Small eyes, cataracts, congenital glaucoma, strabismus, nystagmus Some functional vision in the right eye, wears glasses: reaching for objects, and recognizes some large objects, and colors. Visual acuity approximately 20/1000 in the right eye Mild developmental delays before shunt placement. Received EI services with a low vision specialist and mobility expert Now in a half day early childhood special education setting for her therapies (OT, S/L, and vision/mobility) and a half day regular pre-K setting.

18. Speech and Language Impairment • The most common developmental problems of childhood affecting almost 1 in 10 children. • Covers a spectrum of problems from sound substitutions to global communication disorders and oral motor concerns, impacting speech and feeding. • Speech disorders encompass difficulties producing speech sounds or abnormalities in voice quality • Language disorders reflect deficits in verbal and nonverbal expressive and receptive language skills, comprehension, language processing, and pragmatic skills, the social context of language. • Early intervention demonstrated to be most beneficial for later school functioning.

19. Encouraging Literacy Repeat your child's strings of sounds (e.g., "dadadada, bababa") and add to them. Talk to your child during daily routine activities such as bath or mealtime and respond to his or her questions. Talk to your child and name objects, people, and events in the everyday environment. Draw your child's attention to print in everyday settings such as traffic signs, store logos, and food containers. Introduce new vocabulary words during holidays and special activities such as outings to the zoo, the park, and so on. Read picture and story books that focus on sounds, rhymes, and alliteration (words that start with the same sound, as found in Dr. Seuss books). Reread your child's favorite book(s). Focus your child's attention on books by pointing to words and pictures as you read. Provide a variety of materials to encourage drawing and scribbling (e.g., crayons, paper, markers, finger paints). Encourage your child to describe or tell a story about his/her drawing and write down the words. From asha.org

20. Autism Spectrum Disorders A neurodevelopmental disorder most often evident by three years of age involving delays in the following areas: • Verbal and nonverbal communication • Development of age appropriate social and play skills • Repetitive activities and movements • Difficulties with changes in routine and transitions • Altered response to sensory input and experiences Prevalence- Most recent CDC estimates (2009)- 1/100-150, 8 year olds

21. Autism Spectrum Disorders Coltin 23 months old Language regression and “withdrew into his own little world” at 18-20 months. Now babbles strings of consonant sounds; 4 words. Improved eye contact with family; fleeting with strangers Significant delays in imitation skills, no pointing Improving attention for activities of interest, otherwise short, in constant motion Lines up and looks at toys at angles, spins. CAT/CLAMS: Visual Motor DQ 90 Language DQ 58 Childhood Autism Rating Scale: 41 (severe) Head circumference >97th percentile

22. Autism Spectrum Disorders • Assess eye contact: normal, brief, sustained . • Assess attention for task as well as joint attention and focus. • Assess language development: Expressive: verbal (words, phrases, rhyming, spontaneous conversation) nonverbal (gestures, pointing) Receptive: Understanding directions, the storyline in books. Pragmatics: the social context of language Atypical Language: echolalia (immediate and delayed) contextual conversation • Observe fine motor skills: holding book, turning pages, pointing tactile abilities and preferences mouthing, tearing pages • Observe the presence of turn-taking in the adult-child reading dyad

24. Autism Spectrum Disorders:Encouraging Literacy • The potential for developing literacy capabilities in children with autism spectrum disorder historically has been significantly underestimated. • Shared reading time, literacy-rich environments, modeling literacy activities, and access to print materials are critical for the development of emergent literacy skills in young children with autism. • Literacy development in young children with autism is enhanced by factors similar to those identified in young, typically functioning children. Of special note: Incorporating shared reading time as an anticipated part of the daily routine (“sensory diet”, bedtime) Rhyming, alliteration, and singing Books with a tactile component Sharing emotions Capturing the child’s attention Social stories

25. Anticipatory Guidance:Encouraging Literacy Activities for Children with Developmental Disabilities • Balance the demands of educational goals, therapies, and medical needs of the child with time for activities of mutual pleasure- shared reading, story-telling, playing interactive games- at the developmental level of the child promoting emergent language and literacy and joint and individual attention. • Encourage communication and literacy modeling and rich home learning environments. • Acknowledge what parents and caretakers are already doing with the child to encourage emergent literacy- reading in standers, rhymes with stretching activities, positioning with reading to encourage joint attention. • Direct parents to early intervention programs and disability-specific resources where they can learn how to engage their child in language, literacy, and play activities at home. • Encourage adaptive approaches and tools to meet a child’s specific needs (story boxes or tactile experience books for children with visual impairments).

26. References Council on Children with Disabilities, Section on Developmental Behavioral Pediatrics, Bright Futures Steering Committee, Medical Home Initiatives for Children with Special Needs Project Advisory Committee: “Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening.”Pediatrics: 118: 405-420, 2006. DA Koppenhaver, PP Coleman, SL Kalman, DE Yoder: “The Implications of Emergent Literacy Research for Children with Developmental Disabilities.”American Journal of Speech-Language Pathology: 1: 38-44, 1991. SE Gurry and AS Larkin: “Literacy Learning Abilities of Children with Developmental Disabilities: What Do We Know?”Currents in Literacy: Volume 2 Number 1 (http://www.lesley.edu/academic_centers/hood/currents/v2n1/gurry_larkin.html) JM Stratton: “Emergent Literacy: A New Perspective” (http://www.braille.org/papers/jvib0696/vb960305.html) A Kurtz: “Literacy and Developmental Disabilities” (http://www.ccids.umaine.edu/resources/fcmaine/litdd.html) FP Roth, DR Paul, A-M Pierotti: “Emergent Literacy: Early Reading and Writing Development:(http://www.asha.org/public/speech/emergent-literacy.htm)