Introduction to Deafblindness

1. Introduction to Deafblindness Susan Edelman, Ed. D.,PT Emma Nelson, MS Ed

2. Deaf-blindness & CVISession Outcomes • Understand how a combined vision and hearing loss impacts attachment and family bonding as well as all domains of development • Understand Cortical Visual Impairment (CVI) and the use of effective strategies designed for infants and toddlers with CVI • Increase knowledge of effective intervention or instructional strategies for children with deafblindness and/or CVI

3. Conversation (under simulation) • Prepare: • Read and think about how you will convey your message • NO SPEECH, SIGN, OR WRITING • Put on goggles and put in ear plugs • You will be moved and placed with a partner • Introduce yourself and then give your message (from the paper handed to you) • A tap on the shoulder will signal to remove your blindfold • Reflection and discussion

4. What is Deaf-Blindness? Deaf-Blindness represents the combination of varying degrees of hearing and vision loss.

5. What is Deafblindness? • A combined vision and hearing loss • Also known as dual sensory impairment • Very few children identified as deafblind are totally deaf and totally blind • There is a wide range of of cognitive and developmental ability among children who have dual sensory impairments

6. Did you know… • Vision and Hearing are both distance senses • 95% of all learning is through distance senses • 80% of learning is through vision • 90% of learning is incidental

7. Critical Factors • Four critical factors which affect the severity of deafblindness on the child and his development are: • Age of onset • Degree and type of vision and hearing loss • Stability of each sensory loss • Educational intervention provided

8. Tremendous Variability • National Deafblind Child Count Summary • 10,471 (2012) • Losses range from mild to completely blind or deaf • Combination of losses is the significant factor • Additional disabilities • 55% have physical impairments • 62% have cognitive impairments • 47% have complex health care needs • 68% have speech language impairments • 26% have Cortical Visual Impairment

9. How Many Are Deafblind? • Nationally • Children (ages birth – 21 years) 10,471 (National Child Count Data 2012) • Collected via state deafblind projects • Birth-2 (2012): 555 • Vermont • 2012: 3 • Now: 0

10. Combinations of Hearing & Vision Loss Normal 20/20 Visual Acuity 20/70 – 20/200 Visual Acuity 20/200 – 20/400 Peripheral Field <20 degrees Visual Acuity 20/400 – 20/1000 Light Perception Totally Blind 0 – 25 dB Normal 26 – 40 dB Mild Low Vision & Functional Hearing Minimal Vision & Functional Hearing Blind & Func Hearing 41 – 55 dB Moderate 50 – 70 dB Moderately Severe Low Vision & Hard-of-Hearing Minimal Vision & Hard-of-Hearing Blind & Hard-of-Hearing 71 – 90 dB Severe Low Vision & Very Limited Hearing Minimal Vision & Very Limited Hearing Blind & Very Limited Hearing 91 + dB Profound Low Vision & Deaf Minimal Vision & Deaf Blind & Deaf -Common experience of children with combined hearing & vision loss -Some degree of functional vision & hearing Created by Susanne Morgan Morrow, MA, CI, CT - NYDBC

11. Etiologies of Deafblindness • Syndromes • Down • Usher • Trisomy 13 • Multiple congenital anomalies • CHARGE • Hydrocephaly • Fetal alcohol • Microcephaly • Maternal drug abuse

12. Etiologies of Deafblindness • Prematurity • Congenital prenatal dysfunction • AIDS • Herpes • Rubella • Syphilis • Toxoplasmosis • Post – natal causes • Asphyxia • Head injury/trauma • Stroke • Encephalitis • Meningitis

13. Assessment Issues • Clinical data important but insufficient • Functional assessment of vision & hearing in natural settings essential • Beyond function of eye and ear, into functional use of sensory input

14. Assessment Issues continued Traditional clinical evaluation and many other assessments tend to be communication dependent Symptoms of loss (especially hearing loss) similar to other diagnoses (lack of language development, speech, attention, behavioral challenges, atypical reactions to sensory input or difficulty regulating input) Interaction skills of the communication partner during observation or assessment make all the difference in how successfully the child can demonstrate skills

15. Effects of Hearing LossonDevelopment of Communication • Loss of adequate language models • Inhibited social interactions on the part of others • Concept development may be limited • Partners may be limited • May sharpen other senses

16. Effects of Vision Loss onDevelopment of Communication • Relationship with others- especially infant bonding • Relationship with material world • Concept development • Mobility, curiosity, exploration • May sharpen other senses • Compensate for missing stimulation (“blindisms”) • People distance themselves

17. Effects of Hearing and Vision Losson Development of Communication More difficult to compensate for missing input Environment is narrowed- without physical contact or close physical presence- ALONE Difficult to communicate with more than one person at a time May be accompanied by other disabilities Lack of shared modes of communication Lack of partner skill to communicate Intelligence may be underestimated or overestimated

18. Tips for Instructional Practice • Best Practices in Deaf-Blindness: • Developing rapport • Active Learning • Appropriate hand use & respectful touch • Identifying appropriate communication modalities • Shared experiences • Interveners

19. Developing Rapport

20. Every introduction with a deaf-blind child requires a ‘greeting ceremony’.” ~Dr. Jan van Dijk

21. Developing Rapport • Approach the child from the side, first point of contact should be at the shoulder or leg so as to not startle • Tap lightly and use your voice to announce yourself, when appropriate • Wait for acknowledgement and allow the individual to reach or look for communication

22. Developing Rapport • Make your hands available; do not manipulate the child’s hands- remember, children who cannot see use their hands as their eyes • Move slowly, and listen to the child with your whole body. Provide wait time so that the child can process information and move at his/her own pace • Observe the child closely for communication attempts in the form of movements, muscle tension, change in posture, eye gaze, vocalizations, and gestures and then respond through turn taking

23. Video Example: Rapport • Barbara Miles Video • Conversations Chapter 3

24. Developing Rapport The child builds relationships and feels secure With this sense of security, the child begins to explore and reach out to learn about the environment

25. Active Learning www.lilliworks.org/ • Active Learning: • Emphasizes toys with sound and touch • The Learner is the active one • Everyone can learn • Equipment to support active learning: The Little Room/Resonance Board

26. Appropriate Hand Use

27. Appropriate Hand Use What is it? Tactile learning depends on the use of touch to access information for learning. • Tactile learning is part of the somatosensory system along with proprioceptive and kinesthetic components of perception. • People who are deaf-blind depend on their sense of touch for learning, communication and social relationships.

28. Video Example: Joel

29. Appropriate and Respectful Touch • Hand UNDER Hand: Placing your hands under the child’s hands allows the child to engage in the activity at his or her own pace. This does not force the child into activities but provides a safe and respectful platform for interacting with the environment.

30. Hand Under Hand

31. Shared Modes of Communication

32. Communication Modalities • Pre-symbolic (concrete) modes • Touch cues, name cues and name signs • Object cues, some tangible cues • Photographs, line drawings (some) • Symbolic (abstract) modes • Tangible symbols • Line drawings (some) • Sign Language • Spoken (Voice Output) Language

33. Deaf-blind individuals, regardless of etiology or additional challenges, are, by nature, multi-modal communicators.

34. Modes of Communication • Individuals who are deaf-blind will utilize multiple modes of communication, either simultaneously or at different times for different purposes • The child may: • Shift modes throughout the course of a day based on lighting needs, fatigue, or ease of access, • Use multiple modes within the same setting, or • Use different modes with different communication partners

35. Shared Modes of Communication The mode of communication you use must be accessible to the child Model communication using shared modes Provide for incidental learning through access: allow the child to observe conversations in his/her shared mode

36. Conversations

37. Shared Experiences

38. Shared Experiences • Proximity- having access to people and things for exploration within close proximity • Wait time: give child time to process information • Doing WITH, not FOR – sharing an experience not giving an experience

39. Video Example Video of N drinking water with Mamma

40. BREAK

41. Introduction to Cortical Visual Impairment

42. Cortical Visual Impairment • Information Based on: • Cortical visual impairment: An approach to assessment and intervention, 2007, AFB Press by Christine Roman-Lantzy • Selected slide content provided by Sandra Newcomb, PhD Connections Beyond Sight and Sound University of Maryland

43. What is Cortical Visual Impairment? Vision loss due to damage or malformation in the brain that interferes with the child’s ability to understand visual information coming from the eyes CVI is the leading cause of visual impairment in young children living in the Western Hemisphere

44. CVI is suspected when: Medical eye exam cannot explain level of visual impairment History of brain injury or malformation Presence of unique visual characteristics

45. Medical history significant for CVI Asphyxia/Hypoxic-ischemic encephalopathy (HIE) CVA/stroke Intraventricular hemorrhage (IVH) Periventricular leukomalacia (PVL) Infection Structural anomalies Trauma Prematurity Metabolic disorders

46. CVI Characteristics CVI Characteristics

47. Unique visual characteristics Color preference Need for movement Visual latency Visual field preferences Difficulties with complexity Light-gazing and nonpurposeful gaze Difficulty with distance viewing Atypical visual reflexes Difficulty with visual novelty Absence of visually guided reach

48. Color preference Color vision is usually preserved in children with CVI Children often have a favorite color or will only look at certain colors Children with typical vision or ocular problems will look at any color

49. Need for movement Movement attracts visual attention Children with CVI may only look at something that moves or has movement quality (shiny) Way to “jump start” the visual system Often helps children with CVI with mobility

50. Visual latency Latency is the length of time between when a visual stimulus is presented and when a child looks at or orients towards the stimulus