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Vermont Sensory Access Project Susan Edelman, Ed. D.,PT Emma Nelson, MS Ed.

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Presentation on theme: "Vermont Sensory Access Project Susan Edelman, Ed. D.,PT Emma Nelson, MS Ed."— Presentation transcript:

1 Vermont Sensory Access Project Susan Edelman, Ed. D.,PT Emma Nelson, MS Ed

2 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 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 Also known as dual sensory impairment Very few children identified as deafblind are totally deaf and totally blind 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 There is a wide range of of cognitive and developmental ability among children who have dual sensory impairments

6 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 Four critical factors which affect the severity of deafblindness on the child and his development are: Age of onsetAge of onset Degree and type of vision and hearing lossDegree and type of vision and hearing loss Stability of each sensory lossStability of each sensory loss Educational intervention providedEducational intervention provided

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

11  Syndromes Down Usher Trisomy 13  Multiple congenital anomalies CHARGE Hydrocephaly Fetal alcohol Microcephaly Maternal drug abuse

12  Prematurity  Congenital prenatal dysfunction AIDS Herpes Rubella Syphilis Toxoplasmosis  Post – natal causes Asphyxia Head injury/trauma Stroke Encephalitis Meningitis

13  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 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  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  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 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 Best Practices in Deaf-Blindness: Developing rapport Active Learning Appropriate hand use & respectful touch Identifying appropriate communication modalities Shared experiences Interveners

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

21 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 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  Barbara Miles Video Barbara Miles Video Conversations Chapter 3

24 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: 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

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27 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.

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29  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.

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32  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  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 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

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38 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 of N drinking water with Mamma

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41 Vermont Sensory Access Project

42 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 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 Medical eye exam cannot explain level of visual impairment History of brain injury or malformation Presence of unique visual characteristics

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

46 CVI Characteristics

47 1. Color preference 2. Need for movement 3. Visual latency 4. Visual field preferences 5. Difficulties with complexity 6. Light-gazing and nonpurposeful gaze 7. Difficulty with distance viewing 8. Atypical visual reflexes 9. Difficulty with visual novelty 10. Absence of visually guided reach

48 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 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 Latency is the length of time between when a visual stimulus is presented and when a child looks at or orients towards the stimulus

51 Children often have field losses or field preferences with a strong preference for looking at objects when presented in specific positions of peripheral and/or central viewing fields

52  Complexity of array  Complexity of sensory environment  Complexity of target/object

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56 60 % of children with CVI often compulsively gaze at lights Most have periods of non-purposeful gaze when they are not looking at anything in particular

57 Children with CVI can often only look at things close to them Distance is a function of complexity

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59 Reflexes often absent, latent, or inconsistent Blink to touch between eye brows Blink to threat

60 Children with CVI often look at familiar things better than novel items Novel environments can be challenging Familiarity is easier because CVI is about learning. The child has learned to look at what is familiar.

61 Children with CVI often have trouble using eyes and hands together Often look, look away and reach Some children cannot look at what they are holding Some children need to touch something to look at it

62 Parent Interview Observation Direct Evaluation/Interaction with Child

63 Number ranges (0-10 scale used in assessment) describe specific levels of functioning Phases (I, II & III) describe broad functioning levels and guide intervention strategy to support best visual functioning

64 CVI Phases

65 Severity of CVI is described in three phases Phase 1 (Severe) Phase 2 (Moderate) Phase 3 (Mild) CVI phase is determined by assessment using the CVI Range Intervention guided by phase and characteristic

66 Limited use of vision and cannot do anything else when they are “looking” Most CVI characteristics interfere with visual functioning The major goal of Phase I is to build stable visual functioning We want to give the student practice “looking”

67 Major goal is to begin to integrate vision and function We want to give the child practice using vision in the context of daily routines and activities

68 Major goal of Phase III is to use vision for learning Children demonstrate visual curiosity Children can look at pictures and other 2- dimensional material Children can use their vision to learn about their environment

69 Vermont Sensory Access Project

70 Early Resolution Light gazing, blink reflex Mid Resolution color, latency, novelty, visual threat, movement Later Resolution Field, visual motor, complexity, distance viewing

71 Intervention must be intentional Intervention must be precise Expect change Always be aware of the environment

72 Intervention needs to occur in the context of every day life of the child Children often perform better at home Provide input at the child’s level, NOT above CVI intervention is an approach not a therapy

73 “Environmental engineering” Careful selection of targets Background Sequencing of increasing complexity Diagnostic teaching Exposure Recognition Discrimination Teaching child to use vision Fade supports as visual function shows “resolution” of CVI characteristics

74 Intervention by CVI Phase

75 Build Stable Vision High level of environmental control Plan times of the day when the child can practice vision without other demands For each position that child spends time, place something (from “vision” toys) to look at

76 Use “down” time for vision activities, e.g. tube feeding Use single colored objects/favorite toys Move object slightly/use reflective materials Use light to initiate looking at an object/target

77 Use characteristics of familiar objects to introduce new objects Bring items closer and place them on plain black background Allow child to focus visually without auditory distraction Present objects in the child’s preferred visual field

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80 Integrate vision into all routines Intervention is overlay in all activities Plan the vision component of the beginning, middle, and end of all routines Use objects from Phase 1 with expectation that child will act on materials

81 Limit number of objects presented simultaneously Use lightbox to direct visual attention Move highly motivating objects further away Touch may initiate looking Use familiar objects in daily routines Use new objects that share characteristics of familiar objects

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83 Demonstrate visual curiosity, visual learning Spontaneous use of vision May look at self in mirror May look at pictures

84 Still may have problems in new environments Remember prior preferences in color, movement, light, etc when introducing novel materials Literacy: Highlight words with color, limit complexity, teach shapes of words

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86 Preview environments, teach landmarks Tell the student what to look for in a visual display or environment If child does not look at something, review complexity Use movement for distance viewing Point out/teach salient features in pictures

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88 You will be placed in groups around your table You will be given a profile of a child with CVI Work together as a team to develop interventions that could be implemented in the home across daily routines and activities Consider: how would you involve the family, what items would you use, how will these items change as the child moves through the phases

89 Questions?

90 Vermont Sensory Access Project Susan Edelman, Ed.D., PT Project Director, Vermont Sensory Access Project (VSAP) Emma Nelson, M.Ed. Project Coordinator, Vermont Sensory Access Project (VSAP) Thank you for participating. For more information please contact us at the number or below. University of Vermont Mann Hall 208 Colchester Ave, 3 rd Floor Burlington, VT


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