IN Training (Part 1)

IN Training (Part 1)

Indiana Deaf-Blind Services: Indiana State University Supporting Infants & Toddlers with Multiple Disabilities, Including Combined Vision & Hearing Loss (Part 1) Lisa Poff, Program Coordinator Barbara Purvis, M.Ed., Presenter May 17, 2016 1 Outcomes Increased knowledge of 1. Risk factors associated with combined vision

and hearing loss 2. Impact of combined vision and hearing loss on early development 3. Key evidence-based practices to improve developmental outcomes 4. Accommodations & adaptations that promote access to & participation in learning experiences 5. Strategies to promote movement, exploration, communication, concept development & social interaction 2 DEC Recommended Practices Assessment A2. Practitioners work as a team with the family and other

professionals to gather assessment information Environment E3. Practitioners work with the family and other adults to modify and adapt the physical, social and temporal environments to promote each childs access to and participation in learning experiences. Family F5. Practitioners support family functioning, promote family confidence and competence, and strengthen family-child relationships by acting in ways that recognize and build on family strengths and capacities. Teaming and Collaboration

TC1. Practitioners representing multiple disciplines and families work together as a team to plan and implement supports and services to meet the unique needs of each child and family. 3 Overview of DeafBlindness Describes a variety of combinations of vision and hearing loss Approximately 10,000 children in the U.S. (birth to 21 years old) Most have some residual vision & hearing Approximately 90% have

additional disabilities Greatly impacts relationships, movement, communication and 4 Talking about DeafBlindness Always put the child first! Child with combined vision and hearing loss Child with deaf-blindness Child who is deaf-blind Child with dual sensory loss/losses

Child with dual sensory impairments Child with functional vision & hearing challenges 5 Identifying Young Children with Combined Vision and Hearing Loss Who are these little ones? How do we find them? Know the risk factors Review of medical records Information from parents and

caregivers Observation & Screening Follow-up evaluations Whose role is it? 6 Risk Factors for Combined Vision and hearing Loss 7 Observations

8 Developmental Checklist 9 Vision and Hearing Professionals Vision Professionals Ophthalmologist- a medical doctor (M.D.) who specializes in comprehensive eye care and provides examinations, diagnoses, and treatment for a variety of eye disorders. Ophthalmologists are skilled in all facets of eye care, from prescribing eyeglasses or contact lenses to performing intricate eye surgery. Some ophthalmologists receive special training in pediatric ophthalmology.

Optometrist- a doctor of optometry (O.D.), but not a medical doctor. Optometrists are licensed to examine, diagnose and manage various visual problems and eye diseases, and are specially trained to test vision in order to prescribe eyeglasses or contact lenses. They do not perform eye surgeries. Some optometrists receive special training in pediatric optometry. Optician- a technician who fills the prescriptions for eyeglasses and contact lenses. Optician fits and adjusts eyeglasses. Teacher of children who are blind/visually impaired (TVI)- a teacher who is specially trained and credentialed to address the learning needs of students who are blind or visually impaired. TVIs may provide direct instruction to learners or consultation to the learners instructional team members. 10 Identifying Young Children with

Combined Vision and Hearing Loss Continued Who can help? Indiana Deaf-Blind Services Project Lisa Poff, Project Coordinator s 812.237.2830 [email protected] 11 Risk Factors

Hereditary Syndrome or Disorder Certain prenatal, perinatal and postnatal conditions Premature (preterm) birth Severe head injury Trauma to the eye and ear Multiple disabilities Family History of vision and/or hearing loss 12 Risk List for Infants and Toddlers

Risk List for Combined Vision and Hearing Loss in Infants and Toddlers Associated Etiologies with Corresponding ICD-9 Codes (ICD-10 Codes replaced ICD-9 in October 2015) This list has been developed for use by Part C Service Coordinators in identifying children who are eligible for referral to their states deaf-blind project. When one or more of the conditions in the tables below are present in infants and toddlers who have been determined eligible for Part C services, or who are being evaluated for eligibility, it is important that Service Coordinators work closely with families, early intervention providers and medical professionals to obtain accurate vision and hearing evaluations. These evaluations should include functional vision and hearing assessments in addition to medical assessments. Referring a child birth through two years of age to the state deaf-blind project begins the process of determining whether the child is considered deaf-blind. It is important to remember

that deaf-blindness encompasses a wide diversity of children and conditions. The term describes any combination of vision and hearing loss that negatively impacts a childs ability to access environmental information, communicate and interact with others. Only a small percentage of children considered deaf-blind are totally deaf and blind. Most have varying degrees of residual vision and hearing and over 90% have additional disabilities. Referral to a state deaf-blind project allows for children who qualify as deaf-blind to be counted in an annual National Child Count that is shared with Project Directors from the Office of Special Education (OSEP) Technical Assistance & Dissemination Network. Referral also qualifies early intervention providers and families to receive a variety of technical assistance services, including print and web resources, family support and consultation with experts on effective early intervention practices for children birth through two who have conditions that affect both hearing and vision. 13

Prenatal Conditions (1 ofInfections 2) Maternal Rubella Cytomegalovirus (CMV) Toxoplasmosis Herpes Syphilis Prenatal infant exposure to drugs or alcohol 14

Perinatal Conditions (2 of 2) Low Apgar scores 1-4 at 1 minute or 0-6 at 5 minutes Hyperbilirubin (jaundice) requiring transfusion Mechanical ventilation for longer than 5 days Preterm Birth Infection or illness shortly after birth

15 Prematurity Birthweight < than 1500 grams (3.3lbs) Retinopathy of prematurity Preterm birth, exposed to oxygen On ventilator longer than 5 days Elevated bilirubin requiring transfusion 16 Postnatal Conditions (1 of 2)

Syndrome associated with hearing loss and/or visual impairment Meningitis or encephalitis Hydrocephalus/hydrocephaly Cranio-facial abnormalities Cerebral palsy or other neurological disorders 17 Postnatal Conditions (2 of 2) Brain disorders, brain

tumors or malformations of the brain Loss of oxygen to the brain Severe head trauma Prolonged fever 18 Red Flag Terms

Anoxia, asphyxia, hypoxia Atresia Cerebral hemorrhage Cerebral palsy Ischemia Meningitis Periventricular damage Fetal alcohol symdrome 19 Red Flag Comments (1

of 2) Sometimes he seems to see things, other times, he doesnt. She has a syndrome called CHARGE, but the eye doctor said her vision is fine. This little guy spent two months in the NICU and his records say that 20 Red Flag Comments (2

of 2) This child has cortical visual impairment as a result of head trauma when he was a baby, but theres nothing in his records about a hearing problem. This little girl has a syndrome Ive never heard of. 21 Signs & Symptoms Appearance Abnormalities of shape or structure

of eyes or ears Atypical formation of face, head or neck Behaviors Atypical listening or vocalizing Unusual eye movements, gaze or head position Difficulty tracking, reaching, 22 Remember your AB-Cs A) Appearance

B) Behaviors C) Conditions 23 Implications of prematurity Survival rate of younger, lower birth weight and medically fragile infants has increased steadily Preterm infants are at risk for sensory loss Vision & hearing = most complex sensory systems Last to fully mature Neurological complications can affect visual and auditory processing

Lets think about Intensive Care Nursery vs. Womb 24 Born too Soon Article 25 Prenatal sensory development Typical sensory development follows a sequential maturation process Tactile Vestibular Gustatory Olfactory Auditory Visual Each system interacts with every other

system Each system impacts every other system Compromise to one system affects all systems Vulnerable sensory systems require supportive interventions Individualized Developmental Care can improve outcomes (NIDCAP) 26 Implications of prematurity: For Babies Unnatural environment impacts development Medical concerns often take priority over developmental and educational concerns

Developmental implications can include Challenges with state regulation and attention Feeding difficulties Tactile or sensory defensiveness Difficulty processing sensory input 27 Implications of Prematurity fact Sheet

Combined Vision and Hearing Loss: Implications of Prematurity: Being born early could mean more than you think. A full-term baby is expected to be delivered at 40 weeks gestation. Babies born at 36 weeks gestational age or sooner are considered to be born preterm (or premature). Over the last decade the rate of preterm births in the United States has increased by 15 percent. By late 2008, the rate of premature births had reached 12.7% or approximately one in every eight births (March of Dimes, 2008). Due to advances in medical technologies, there has been corresponding rise in the survival rate of these infants, as well as an increased survival rate of low birthweight babies (typically caused by being born preterm or as a multiple birth). Today, it is not uncommon for infants born younger than 28 weeks gestational age (about 3 months early) to survive. More than 90% of preterm babies weighing 800 grams or more (a little less than two

pounds)development and the development of a childs sensory system is at particular risk. Developmental Effects of Prematurity: In typical prenatal sensory development, each sensory system begins to develop at a particular time and in a particular sequence. In addition, each sensory system completes its own unique developmental sequence, assuring that the system will be mature and operational at birth. An infants developing sensory systems are completely vulnerable and any compromise can have long-lasting implications. 28 Implications of prematurity: For Families Emotional roller coater Difficulty bonding

Strains on relationships Information overload Juggling time commitments At-risk parents particularly vulnerable Emotional effects can be long-lasting 29 Implications of prematurity: For Service Providers 1. Prioritize sensory issues from start 2. Build customized, collaborative team 3. Find out about hospital experiences of children you work with 4. Give families space and time they need and deserve it!

5. Realize that family behaviors viewed as barriers may have deep-rooted origins 6. Be careful how you use your words 30 Implications of Ongoing Medical Issues Frequent and/or prolonged hospital stays Increased demands on time Developmental & educational concerns may take lower priority Similar family stressors likely Gaps in learning opportunities add challenges

Effects of medication 31 Implications of Multiple Disabilities Loss of child imagined Cultural considerations Family stressors become ongoing Numerous home visitors May see increased emphasis on protecting the child May also see lower expectations Reactions of family & friends Delayed development

32 Welcome to My Home Welcome to my Home Hi Welcome to my home. I think. I mean, maybe youre welcome. Im not sure yet. When I get to know you, Ill know for sure. My child has a disability and I need help to do all the things he needs done. SO I need you. He needs you too, because he gets worn out and bored with me and sometimes dislikes me about as much as I sometimes dislike him (Please dont start making judgements about me, we just got started. Its just that Im honest, and as much as hes the sole reason for my existence, there are times when both of us wear thin). Your agency sent you here. I called for help, but I dont get a choice of who comes into my home and into

my life. You come at your convenience, usually between 9 am and 3 pm Monday through Friday. Im on my own evenings and weekends, when my other children tug at me and want me and feel slighted and offended and I feel stretched to my limit. 33 Impacts of Hearing Loss Communication challenges Hearing may be inconsistent Missing or distorted information Fatigue, ability to focus Difference in how everyday

activities are experienced 34 Impacts of Vision Loss & Blindness Bonding challenges Apprehension Missing, inconsistent or distorted information Fatigue, inability to focus Body and space awareness Difference in how everyday activities are experienced

35 Impacts of DeafBlindness Deaf-blindness is often described as a disability of ACCESS Combined vision and hearing loss affects Communication Exploration > Mobility > Engagement > Participation Relationships > Social interaction > Friendships

36 Visual & Mental Memory > Concept How do infants and toddlers learn? Early Childhood Development Basics Sensory exploration Movement Watching & listening Trying new things Repeating favored activities Asking questions Security of safe, familiar environment

37 Incidental Learning . . . is what happens as young children watch, listen and put meaning to whats going on around them 38 Distance Senses Vision and Hearing are the primary senses for learning

They are also known as the distance senses 39 Sensory challenges turn Sensory challenges our world UPSIDE DOWN! 40 Typical Learning Typical Learning Direct: Hands-on

experiences Secondary: Listening to a person teach or present information Incidental: Occurs without much effort: how must learning happens 41 Deaf-Blind Learning Pyramid Deaf-Blind Learning Incidental: Usually does not occur; not effective Secondary: Very difficult

Direct: Essential and most effective method of learning 42 So how do infants and toddlers with complex challenges learn? By touching, tasting, smelling, reaching, moving By trying things out By repeating thing they like and avoiding things they dont By asking questions By being surrounded by people who provide a safe place to learn

43 A circle diagram with six boxes. Team Approach, Access to People, Objects & Activities, Meaningful Learning Activities, Trusted Relationships, Individualized Communication System, Appropriate Assessment. Building a Foundation for Learning 44

Team Approach Parents provide critical input Collaboration is key Finding what works requires willingness to move out of our typical roles and comfort zones 45 Assessment The root of

the word assessment is assidere, which means to sit beside and get to know. 46 Authentic Assessment Familiar people. In familiar settings With familiar objects/toys Doing familiar things. Adapted from: Sophie Hubbell, M.A.T

Kent State University 47 Assessment for children with combined vision & hearing loss Multi-faceted approach Functional Vision Assessment (FVA) Functional Hearing Assessment (FHA) Identifying sensory preferences Putting the pieces together 48

Access Vision and hearing = Distance senses Multiple disabilities affect ability to seek information Information and responses are absent, limited or distorted Impacts incidental learning 49 Providing Access (1 of 4) Maximize residual vision and hearing

Functional Vision Assessment results Functional Hearing Assessment results Glasses, low vision devices Hearing aids, personal FM system Assistive technology devices 50 Providing Access (2 of Visual accommodations 4)

Color Size Lighting Contrast Include Position Spacing Distance Arrangement Auditory accommodations

include Position (childs, yours) Control of background noise Tone Volume 51 Providing Access (3 of 4) Position and location of child Position and location of materials Adapted materials

Assistive technology Time to prepare, process, respond, rest 52 Providing Access (4 of 4) Physical environment Lighting, clutter, acoustics Designated spaces Organization of materials and equipment Visual or tactile cues as labels Adaptations and accommodations

53 Communicati on Systems All children communicate! Our role Expectation Opportunity Interpret and respond Shape

Model & coach 54 Reading Infant Signals Communication begins at birth May be atypical Recognize subtle signs Learn to read and respond to each childs unique signals 55 Reading Infant Signals Heart rate

Breathing Skin color Facial expressions Muscle tone Position State Hyperextension Flailing Splaying Yawning, Sneezing Hiccups Gagging

Salute 56 Individualized Systems Recognize behavior as communication Know hierarchy of communication Engage in non-traditional conversations Assess receptive & expressive communication methods Identify child preferences & interests 57

Ways of Communicating BODY LANGUAGE AND FACIAL EXPRESSION: physical representation to internal (emotional or mental) reactions, maybe done purposefully towards another or maybe just a reaction VOCALIZATIONS sounds made intentionally which may or may not be directed towards someone else GESTURES use of motions of the limbs or body as a means of expression socially recognized TOUCH CUES: physical contact directly onto the individuals body immediately preceding an action or activity, the purpose is conveying a message (receptive communication) to the individual (not to get their attention) OBJECT CUES: an object from a part of their daily routine, presented to the individual as a message about a specific activity. TWO & THREE-DIMENSIONAL TANGIBLE SYMBOLS: a photo, line drawing or object/ part of object or texture that bears a meaningful and realistic connection to what it is representing. WRITTEN WORD (print/Braille): combination of abstract symbolic shapes to have socially agreed

upon meaning SIGN LANGUAGE: a system of articulated hand gestures following specific grammatical rules or syntax Circle LANGUAGE: showing meaningful Ways a sound Person Can be in the middle. SPOKEN as produced by Understood the action of the vocal organs

following It specific grammatical or syntax is encircled byrules pieces of an outer circle containing: Body Language/Facial Expression; Written Word (Print/Braille); Sign Language/Spoken Language; Pictures; Two or Three-dimensional Tangible Symbols; Gestures Vocalization; Object Cues; Touch Cues. Noted that it is adapted from Hand In Hand: Essentials of communication and Orientation and Mobility for your Students

58 Who are deaf-Blind, Volume I.; K. Huebner, J. Prickett, T. Welch, E. Ways of Communicating: Developing a Full communication System Receptive Ways ____ understands others Identify the ways people communicate with ___ so he/she can understand them Expressive

Ways others understand ____ Identify the ways ____ gets others to understand him/her. 59 Trusted Relationsh ips Facilitate access, communication, social interaction

Bonding Respect Enter childs world Provide consistency 60 Bonding (1 of 3) Challenges to caregiver Intense emotions Fear of death Separation during early weeks Absence of visual gaze Difficulty reading cues Lack of responsiveness & reciprocity

61 Bonding ( 2 of 3) Challenges to infant Separation during early weeks Effort required to feed Lack of typical visual feedback Lack of typical auditory feedback Self-regulation 62 Bonding ( 3 of 3) Strategies that may help

Support for caregiver Use of other sensory channels Touch Minimize distractions Work to establish a routine 63 Building Trusted

Relationships (1 of 2) Consider past experiences (positive and negative) Providing security & earning trust Consistency Gaining attention Predictability Greeting and leaving Personal identifiers 64 Building Trusted Relationships (2 of 2)

Know likes and dislikes Follow childs lead Frequent conversations Conversations : Connecting and Learning with Persons who are Dea fblind (http:// Role of hands & touch Reflections on Deafblindness : Hands and Touch ( ns_on_Deafblindness)

65 The Language of Hands 66 Thinking about Touch ( 1 of 2) Hands convey information through

Temperature Tone Speed of movement Degree of pressure Children learn to read what is being conveyed when you touch them 67 Thinking about Touch (2 of 2) What can you learn about a child from his/her response to your touch?

To other types of tactile input? What do your hands convey when you touch a child? Where and how will you touch a child to be most respectful? 68 Meaningfu l Activities Limitations for children with disabilities 1. Range and variety of experiences 2. The ability to get about 3. Interaction with the environment

Overcoming limitations . . . these are best intervened through the use of repeated, meaningful, hands on experiences through daily activities with family members. 69 Berthold Lowenfeld Similar Terms Meaningful, hands on experiences through daily activities with family members Sound familiar?

Routine Based Early Intervention 70 Routine Based Early Intervention (1 of 3) Builds on activity settings and learning opportunities vs. embedding therapy Promotes child participation in activity settings that have development-enhancing qualities vs. focusing on skill development

Based on adult responsiveness to the child vs. teaching specific 71 Things to Consider Activity settings & Learning Opportunities Not only about how many Its about consistency, relevance, perspective Child participation Not about participation for participations sake Its about relevance and quality of

engagement, from child/family perspective Adult responsiveness Cant always be about what we want 72 Its about careful observation, slowing Sources of Childrens Learning Opportunities Family Community Famil Early Childhood y ProgramsCommuni

ty Early Childhoo d Programs 73 Bruder & Dunst, 1999 Routine Based Early Intervention (2 of 3) Takes place in family context

includes a mix of people and places that support a variety oflearning opportunities such as cooking, eating meals, splashing water during bathtime, looking at books, and learning how to greet people at family get-togethers 74 1999) (Bruder & Dunst, Routine Based Early

Intervention (3 of 3) Takes place in community life includes a mix of people and places including the people and things encountered on a walk in the neighborhood, a visit to the library, or a shopping trip. (Bruder & Dunst, 1999) 75 What is a Routine? Beginning and ending

Outcome oriented Meaningful Predictable Sequential or systematic Repetitious (FGRBI, Florida State University, 2014) 76 Why are Routines Important?

Predictability Provide security Decrease stress Anticipation Sense of control 77 What are the Steps in a Routine? 1. 2. 3. 4.

Initiation Preparation Core Termination 78 How do You Design Meaningful Learning Experiences? Consider the childs perspective Identify likes and dislikes Determine preferred sensory

learning channels and learning styles Identify learning opportunities Create routines within 79 Preferences and Interests 80 Identify Use of Sensory Channels 81

Identify Learning Opportunities 82 Planning a Routine 83 REFERENCES ( 1 of 2) Chen, D. (Ed.). (2014). Essential Elements in Early Intervention: Visual Impairment and Multiple Disabilities. New York, NY: AFB Press. Chen, D. with Klein, M.D., Holloway, E., Myck-Wayne, J., Saledo, P., Snell, R. (2008). Early Intervention in Action: Working Across

Disciplines to Support Infants with Multiple Disabilities and Their Families. Brookes Publishing Company. Baltimore, MD. Dunst, C.J. & Bruder, M.B. (1999). Increasing childrens learning opportunities in the context of family and community life. Childrens Learning Opportunities Report. Vol. 1, No. 1. Dunst, C.J. & Bruder, M.B. (1999) Family and community activity settings, natural learning environments and childrens learning opportunities. Childrens Learning Opportunities Report. Vol. 1, No. 2. Dunst, C.J., Hamby, D., Trivette, C., Raab, M. & Bruder, M.B. (2000), Everyday family and community life and childrens 84 naturally occurring learning opportunities. Journal of Early

REFERENCES (2 of 2) Gleason, D. (2005). Sensory Functioning Assessment and Intervention Strategies: Children with Visual Impairment and Multiple Disabilities; Perkins School for the Blind- Hilton/Perkins Program. McWilliam, R. A. (2010). Routines-Based Early Intervention: Supporting Young Children and Their Families. Baltimore, MD: Paul H. Brooks Publishing Co. Miles, B. & Riggio, M. (Ed.) (1999). Remarkable Conversations: Guide to Developing Meaningful Communication with Children and Young Adults Who are Deafblind. Perkins School for the Blind. Rush, D.D., Shelden, M.L., & Hanft, B.E. (2003). Coaching families and colleagues: A process for collaboration in natural settings. Infants and Young Children, 16(1), 33-47.

Rush, D.D. & Shelden, M.L. (2005). Implementing evidencebased practices in early childhood intervention: Coaching in early childhood. Training materials, Sept. 12-14, 2005, 85 Topeka, KS.

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