Deaf-Blind

1. Deaf-Blind ASL I Spring 2009 Final Ms. Maclin MBHS Links: www.deafblindinfo.org/FAQ.asp http://www.msab.state.mn.us/DBC/notable_deafblind_people.htm http://www.actionfund.org/ohsay/saysee18.htm http://www.theinterpretersfriend.com/db/tchg-db-chldrn.html http://www.senses.asn.au/services/communication/ http://www.tr.wou.edu/tr/dbp/sep2004.htm

2. What does DeafBlind mean? • Does DeafBlind mean completely blind and completely deaf? • NO. It is common for people who are DeafBlind to have some residual hearing and/or vision. • DeafBlindness is a combination of vision loss and hearing loss that prevents access to communication, the environment, and people. A person who is DeafBlind may or may not have other physical or cognitive(mental) disabilities.(each is different).

3. The definition detailed… • Legally, children in the US are called “deafblind” if they have “such severe communication and other developmental and learning needs that the persons cannot be appropriately education in special education programs solely for children and youth with hearing, visual or severe disability impalements, without extra assistance to help them learn/function in life and attend school. • There are over 400,000 DeafBlind people in America!

4. 70… • There are over 70 things/diseases that can cause DeafBlindness. • Some of the most well-known are: Usher’s Syndrome, Herpes, Prader-Willi, Strokes, Severe Head/Brain Injury, Meningitis, Maternal Drug Use, Infectious Diseases, Down Syndrome, Fetal Alcohol Syndrome, Hunter Syndrome, Cytomegalovirus(CMV), Direct trauma to the ear/eye, Chromosome deficiencies, premature birth, complications during birth and after.

5. The Main Types and Causes(this will be on the test) • 1. Congenitally DeafBlind CHARGE Syndrome Congenital Rubella Syndrome Prematurity CMV (Cytomegalovirus) • 2. Born Deaf/Hard of Hearing; Acquired Vision Loss Usher Syndrome Diabetes • 3. Born Blind/Vision Impaired; Acquired Hearing Loss Norrie’s Disease • Illness Trauma Meningitis • 4. Acquired hearing and vision loss Aging -process Trauma Illness

6. Babies and steps of formation • A woman should have a baby at/around 40 weeks. That is when everything has developed. If a baby comes before 24 weeks then their ears will not have been developed and there will be a hearing impairment. The eyes develop last and they are completed by week 24 at the earliest & 26 at the latest.

7. Usher Syndrome... • Approximately 3 to 6 percent of all children who are deaf and another 3 to 6 percent of children who are hard-of-hearing have Usher syndrome. In developed countries such as the United States, about four babies in every 100,000 births have Usher syndrome. • http://www.nidcd.nih.gov/health/hearing/usher.asp

8. Inherited Genes.... • Usher syndrome is inherited, which means that it is passed from parents to their children through genes. Genes are located in almost every cell of the body. Genes contain instructions that tell cells what to do. Every person inherits two copies of each gene, one from each parent. Sometimes genes are altered, or mutated. Mutated genes may cause cells to act differently than expected.

10. Genetic disorders can be caused by a change(s) in a gene. Every individual has two copies of the same gene. Genetic disorders are inherited in different ways. Usher syndrome is a recessive disorder. • Recessive means: • a person must inherit a change in the same gene from each parent in order to have the disorder • a person with one changed gene does not have the disorder, but can pass either the changed or the unchanged gene on to his or her child • An individual with Usher syndrome usually: • has inherited a change in the same gene from each parent • An individual who has one changed Usher syndrome gene is called a carrier. When two carriers of the same Usher syndrome gene have a child together, with each birth there is a: • 1-in-4 chance of having a child with Usher syndrome • 2-in-4 chance of having a child who is a carrier • 1-in-4 chance of having a child who neither has Usher syndrome nor is a carrier

11. Type 1 Type 2 Type 3 Hearing Vision Vestibular function (balance)

12. What to do when you encounter a DeafBlind person: • Because DeafBlind people have lessened hearing and sight, they depend more on their other senses, which includes smell. One should try to avoid either too much natural body odor or too much artificial odors. This means one should bathe well, take care of oral and axillary (arm pit) odor, and avoid strongly perfumed products. One should also wash one's hands frequently to avoid passing one's own germs on to DeafBlind people, or from one DeafBlind person to another.

13. When you first meet, touch the person's shoulder to let them know you are there, if they are standing. If they are seated, touch the back of the hand, and when they raise it, slide your hand underneath theirs. • Don't tap back or arm, since they won't know which way to turn. • Be flexible with your communication method, your client may be new or have special needs. We will discuss communication options later. • So, state your business first, then chat.

14. Etiquette. • Be aware, that since you are talking to them, you may need to help them to the bathroom or guide them to a place. If you need to leave, explain why and when you will be back. • Identify yourself each time you meet. • Think of everything you say as a promise. • Respect their privacy. Don’t ask personal Qs. • Don’t joke around until they know you and you know them. They can’t see/feel facial expressions.

15. Communication Options

16. How they communicate: • They use: • POP(print in palm) • Tactile • CV (close vision) • Distant signing • Tracking • Limited space/tunnel vision • Tactile fingerspelling • Sim-com if they have some hearing • Braille • Sign language in the hands or close to their eyes.

17. Specifics of the surroundings to be aware of: • The lighting you are in should be bright without glare. Don't face the DeafBlind person into the sun or major light source. If you are Hearing, hard-of-hearing DeafBlind people may need you at their better ear and to sit away from noise. • If the person uses both hands to receive ASL, it's best to sit facing with knees interlaced. If one-handed, 45-90 degrees is best. • Sign with energy and clarity, despite feeling restricted, but don't be wild. • Don't duck head to make signs like MOTHER, since it will obscure the difference between signs that differ only in location, such as MOTHER, FATHER, and FINE. Hunching also makes your signing space smaller.

18. Remember • Remember the DeafBlind person can't see head nods, head shakes, q and who questions and other grammatical markers. This information must be added by additional signs, such as FOR~SURE, DOUBTFUL, QUESTION-MARK, and so on. • For tactile signing, don't switch dominance (switching from left-handed signing to right-handed signing or vice versa) although it is natural in ASL. • If you are continuously spelling, pause slightly between words. If you are signing, pause slightly before fingerspelling a word and slightly afterwards to check for comprehension.

19. If the DeafBlind person uses sight to read signs, watch their eyes to see if you are going outside their receptive sign space. • When the DeafBlind person puts out their hand, they are requesting (back-channel) feedback, respond with YES, OH-I-SEE, WHAT-CAN-I-SAY, and so on. • Touch is especially important for DeafBlind people. It is their link with the world. It can show you are nervous, withdrawn, friendly, tired, or bored. You may be uncomfortable "holding hands" during pauses, but it is best to wait for the DeafBlind person to break contact. It keeps that link and makes it easier for the DeafBlind person to get your attention.

20. Be Aware… • Don't tease by poking, tickling, or jostling, even though your intentions are friendly. We can see things like that coming and are startled when we don't. • If the person's hands are heavy, it may mean they are tired or having difficulty understanding. Be aware of a need for a break in the conversation or interpretation. • Be careful that clothing is dark unless you have a dark complexion. Many DeafBlind people are even more sensitive to bright colors than a sighted Deaf person. Take off rings or bracelets, and keep fingernails trim. Don't wear strong perfumes or colognes.

21. Guiding them… • Let the DeafBlind person take your arm just above the elbow. Don't push them ahead of you or take their elbow. Some people prefer to put their hand on top of the guide's hand or on their shoulder. Start with the most common method but follow the DeafBlind person's preference if it is different. Natural body movement will tell the DeafBlind person if you are turning, etc. • If you will use an escalator or elevator, tell them shortly before you will be getting on. • Pause before going up or down stairs • For doors, the guide should enter first, holding the door for the DeafBlind person.

22. Continued… • In narrow spaces or crowded areas, bring your elbow or guiding hand behind you to show them that they need to be behind you rather than side by side. You can also put their hand onto your shoulder. • When seating a DeafBlind person, place their hand on back of the seat or arm of chair. Guiding them so that their leg touches the seat. For booths, place their hand on the table edge and slide it in the direction you wish them to go.

23. Rules: • Never abandon a DeafBlind person in unfamiliar surroundings. • Always tell the person where you're going and when you will be back. If the person is not sitting, it is best to lead them to something secured to the floor or a wall so they can hold on to it or touch it from time to time to keep their bearings. • Tell/explain the surroundings…who is around…what the place looks like…furniture..etc.

24. How do they learn? • Parents and teachers can learn to use the manual alphabet and sign language. The manual alphabet (or finger-spelling as it is sometimes called) is a bridge between American Sign Language and English. It is a series of hand motions which depict letters. In some instances the fingers are positioned to resemble print letters. Other letters are formed by arbitrary hand positions which bear no resemblance at all to print letters. The manual alphabet and sign language can be used to teach deaf-blind children. For example, when a deaf-blind baby is handed a doll, the mother finger-spells "d-o-l-l" into the baby's hand. Of course, the baby has no idea what the mother is doing. Hearing children don't know what the word "doll" means either. They learn its meaning by hearing it said over and over again and by associating it with the cuddly toy. Deaf-blind children make the same association between a doll and the finger-spelled word for it.

25. Cont… • When people become blind later in life, they already have language skills. Therefore, the Braille dot patterns are explained to deaf-blind persons through finger-spelling or sign language. After Braille skills are learned, communication possibilities expand, at least in communicating with another Braille user. • Most deaf-blind children begin some form of education before they can walk. Usually a teacher comes to the home and helps the parents learn how to work with the child. Federal law requires an education for deaf-blind children from early childhood through age twenty-one.

26. Also… • It is also possible to communicate with deaf-blind people by tracing the shapes of block letters on the palm of their hand with an index finger. Capital letters should be printed and cursive writing should be avoided. This method can also be used by people with no specialized training.

27. Do blind people see in their dreams? Do they see in color? • People who are blind do dream. The dreams of people who have been blind from a very early age (called “congenital blindness”) tend to be different from those who are blind now but had sight before. Those who are congenitally blind often have dreams that include more instances of sounds. • Both groups experience dreams as imaginatively rich as those of sighted people. • Whether or not congenitally blind people dream in images has been studied, but the findings have been mixed – some studies conclude that congenitally blind people do not dream visual images, while other reports conclude that they do.

28. There are two categories of blind people • (1). Who are blind by birth : These people do not see colors in their • dream. Their dreams includes only noises & emotions. • (2). Who became blind due to any happening in life: These people see • colors in their dreams but the intensity of the colors is associated with • the time when they last seen the colors in their original life before being • blind. • http://www.afb.org/message_board_replies.asp?TopicID=638&FolderID=3

29. Sharon Grassick Experience teaching DeafBlind: • “In my experience, sharing the interests of the child by offering your hands UNDER his can be a very effective way of developing 'communication', instead of shaping his hands into formal signs that may have no meaning for him yet. When he offers to share his toys with you, follow what his hands are doing and share his exploring. Make your hands available to him, next to his, and allow him to use your hands, rather than you directing his hands. Follow his lead. First, we must acknowledge and 'interpret' the communication efforts of the child before we can expect the child to understand our formal signs. If a child has very few signs, accept HIS signs by imitating them UNDER his hands, then modeling the sign for what you think he is trying to tell you (again with your hands under his). If he has enough functional vision, modeling the signs within his field of vision may be sufficient.

31. continued • If there is no useful vision, model the sign UNDER his hands. (If the child will not initially keep his hands on yours long enough to follow the signs, then making the sign on his arm or back of his hand may be useful). We can then build on HIS communication, towards a more formal system, when the child is ready. This approach will also foster a trusting relationship with the child, as it gives more control to the child, and allows him to learn the power of HIS communication.”

32. Let’s Look at the DeafBlindalphabet(please see attached)

33. Famous Deaf…. • Robert Smithdas (1925- ) • born near Pittsburg, PA • normal development until age 4 years when contracted cerebrospinal meningitis, resulted in total blindness and near deafness; totally deaf by mid-teens; received receptive communication through block letter printed on palm and Tadoma method (right thumb on speaker’s lips and fingers on vocal cords), and retained clear speech • at Perkins learned braille, and by teens avid reader, reading 3 – 4 books in one weekend • at 12 years started writing poetry; became member of Poetry Society of America; honored as Poet of the Year (1960) • scored 98 out of 100 on Harvard’s pre-entrance exam > graduated cum laude from St. John’s University (1950; classmates transcribed textbooks into Braille > first known DeafBlind to receive Master’s degree in U.s., in Vocational Guidance and Rehabilitation of the Handicapped at New York University (1953)

34. Robert cont… • -Director of DeafBlind services at Industrial Home for the Blind in New York > now Director of Community Education at Helen Keller National Center for DeafBlind Youth and Adults in Sands Point, NY; lectures about deafblinds’ capability if given opportunity, arranges tours at Center, edits national newsletter) • -published “Life at my Fingertips” (autobiography) and “City of the Heart” (poems) • -earned honorary degrees from Gallaudet University, Western Michigan University, John Hopkins University (1980) • -felt modern day DeafBlind not receive recognition for success in education and employment because “blocked by shadow of Helen Keller” • -deep sea fishing, gardening, art collecting, gourmet cooking

35. Jeff Bohrman Usher Type 1, now totally DeafBlind (cochlear implant help with sounds, not speech) • Clarke School for the Deaf.> Bachelor’s degrees in Biology and Pharmacology from Dickinson College and University of Pittsburgh > Master’s degree in Pharmacology-Pharmacognosy from University of Illinois > Ph.D. degree in Pharmacology-Physiology from University of Pacific Stockton • past positions as teaching assistant, post-doctoral investigator, research toxicologist and research pharmacologist • Project Director for Ohio DeafBlind Outreach Program, part of Comprehensive Program for Deaf at Columbus Speech and Hearing Center: take census of DeafBlind people in Ohio, assess needs, link to appropriate services • past president of American Association of DeafBlind; Director of Ohio DeafBlind Association; advisory Board of Helen Keller National Center; Advisory board of DeafBlind Link (National Clearinghouse on Children who are DeafBlind); standing committee of National Coalition on DeafBlindness; National Interpreter Training Advisory Board (develop manual on DeafBlind interpreting in Connecticut); Consumer Advisory Council for Ohio Relay Service; Ohio Interest Group for Individuals with DeafBlindness • Medick winner (1996: outstanding visually-impaired person) • role model with sense of humor

36. Kim Powers -Usher Type 1 -noticed as amature actress on  San Antonio theater production by top Kaleidoscope executive, who introduced her to station’s president > star of her own Award winning television talk show series, Kim’s World, air Saturday mornings on San Antonio-based Kaleidoscope cable network, reaching out to nearly 20 million people in more than 35 states (founded 1990); through interpreters, captioning for deaf and voice narration for blind show physically challenged children that anything is possible: draw on own life experiences (e.g., how to identify clothes by texture, how to travel independently, how to interact with animals at zoo, dancing, horseback riding, etc.); dress up as storybook character to interpret and discuss literature with children -as volunteer gives inspirational talks to disabled children in schools, lectures to teacher for disable children; co-host syndicated TV special, Helen Keller: The Magic Within, along with a team; host Paralympics Games for physically disabled athletes in Atlanta on paid TV   -snow skiing, bungee jumping, scuba diving