"Building Independence and Resilience in Usher Kids"

1. "Building Independence and Resilience in Usher Kids" Geoff Bowen Psychologist the EVAC and Statewide Vision Resource Centre Statewide Vision Resource Centre

2. Acronyms • Vision Impairment = VI • Retinitis Pigmentosa = RP Statewide Vision Resource Centre

3. Why I have seen very few students with RP & Usher • VI is rare in children. • Most students with RP are not in the VI range during school years. • Their “table top” vision and their ability to read print may be unaffected. Statewide Vision Resource Centre

4. Why I have seen very few students with RP & Usher • If they are in range they often hide their difficulties and “appear” to be normal. • Often those who are discovered reject assistance. Statewide Vision Resource Centre

5. Important “Rule” • Those who can pass as non-disabled/non-VI will try to pass as long as possible. NB: This desire is very normal and quite “seductive” but gets in the way of developing the skills you need to be as functional/independent as possible. Statewide Vision Resource Centre

6. Family A • Mum and her son, both looking really stressed/distressed. • Dad did not come as finds it too distressing to talk about or think about! • Everyone is suffering “why me/my child, why me/my family? There is no hope! Statewide Vision Resource Centre

7. Family B • Mum, dad, the VI student and a sibling were present. All happy and relaxed • The family were there to get more information to help their son cope. • “I know I am going to lose my vision but when I do I want to have all the skills to have a good life.” Statewide Vision Resource Centre

8. In Family B the impending VI of their son was and is distressing, however: • The family looked upon the situation as a set problems to discuss openly, get as much information about it as possible and to reach good solutions. • “I can’t change the RP but I can deal with it the best that I can.” Statewide Vision Resource Centre

9. Viktor Frankl • 1942 married first wife, Tilly. Nine months later Frankl, wife and family sent to Theresienstadt concentration camp • Wife, parents and other immediate family members killed in a concentration camp. He survived Auschwitz. • 1946 published “ Man’s Search for Meaning” Statewide Vision Resource Centre

10. Two Types of Prisoners! • Those who had lost meaning and hope in the future. • Those who did not. They looked at life as a challenge to overcome. The prisoners who had a why to live were more likely to survive. Statewide Vision Resource Centre

11. 1. Meaning in Suffering • In life, you can make a victory of your experiences or you can ignore the challenge and fade away or at least live a sad, depressed and unfulfilled life. • You can ask yourself do I have a strong why in my life. A why strong enough to get through the challenge. Statewide Vision Resource Centre

12. 1. Meaning in Suffering • If you can define it and clearly see it, you can overcome any challenge. • Frankl looked at his situation and saw it as an opportunity to learn how to cope in such a dire and awful situation. Suffering ceases to be suffering when it finds meaning. Statewide Vision Resource Centre

13. 1. Meaning in Suffering • You can find meaning and hidden opportunities in any challenge, in any suffering and in any misfortune. • “He who has a why to live for can bear almost any how.” Friedrich Nietzsche Statewide Vision Resource Centre

14. 2. The Freedom of Choice • “When we are no longer able to change the situation we are challenged to change ourselves” • “Everything can be taken from a man or a woman but one thing: the last of human freedoms to choose one’s attitude in any given set of circumstances, to choose one’s own way.” Statewide Vision Resource Centre

15. 2. The Freedom of Choice • The ability to choose the way respond as a way to cope with life’s vicissitudes has been around for a long time: Confucius, Buddha, Shakespeare and the Greek philosopher Epictetus: “It's not what happens to you, but how you react to it that matters.” Statewide Vision Resource Centre

16. Cognitive Behavioral Therapy • Thoughts cause Feelings & Behaviors. • If you change your thinking you change your feelings and behavior. • Emphasis placed on current behavior. • Based on "rational thought." - Fact not assumptions. Statewide Vision Resource Centre

17. Cognitive Behavioral Therapy • The benefit of remaining calm or at least neutral when faced with difficult situations. (If upset by your problems, you now have 2 problems: 1) the problem, and 2) your upset-ness. Statewide Vision Resource Centre

18. VI due to RP- Journal Article How patients experience progressive loss of visual function: a model of adjustment using qualitative methods. R Z Hayeems, G Geller, D Finkelstein, R Faden British Journal of Ophthalmol 2005;89:615–620. doi: 10.1136/bjo.2003.036046 Statewide Vision Resource Centre

19. “Adjusting to RP inevitably entails a certain degree of suffering. Suffering can be defined as a state of distress that occurs when a person’s integrity or life plan is threatened, disrupted, or burdened; it lasts until integrity is restored, either by eliminating the threat or adjusting to it. It is not the physical impairments themselves, but the impact of the physical state on the person as a whole that causes suffering. This has been referred to as ‘‘existential suffering.’’ Statewide Vision Resource Centre

20. “Our data suggest that the process of adjusting to RP is a dynamic one composed of a series of inter-related steps........The search for meaning involves understanding why a disability has occurred. Mastery centres around gaining control over the implications in order to manage them. Self esteem reflects the effort to regain a positive view of oneself in a new life situation.” Statewide Vision Resource Centre

21. Group A Self identified as sighted They conceal their RP Avoid using assistive devices Dependence Statewide Vision Resource Centre

22. Group B Self identified as visually impaired They reveal their RP Use assistive devices Independence Statewide Vision Resource Centre

23. Indications of Adjustment • General ability to enjoy and get on with life. • A willingness to engage with their “tribe” (i.e. others with VI). • A need to assertively promote the rights & needs of VI or disabled citizens in general. Statewide Vision Resource Centre

24. Self Determination “….is a combination of skills, knowledge, and beliefs that enable a person to engage in goal-directed, self-regulated, autonomous behavior. An understanding of one's strengths and limitations together with a belief in oneself as capable and effective are essential to self-determination. When acting on the basis of these skills and attitudes, individuals have greater ability to take control of their lives and assume the role of successful adults.” Field et al (1998a). A practical guide to teaching self-determination. Reston, VA: Council for Exceptional Children (Page 115). Statewide Vision Resource Centre

25. Essential Characteristics ofSelf-Determined Behavior • Make choices and decisions as needed. • Exhibit some personal or internal control over actions. • Feel capable and act that way. • Understand the effects of own actions. Statewide Vision Resource Centre

26. Component Elements of Self-Determined Behavior Choice-Making Skills Decision-Making Skills Problem-Solving Skills Goal-Setting and Attainment Skills Independence, Risk-Taking and Safety Skills Self-Observation and Self-Evaluation Skills Self-Reinforcement Skills Self-Instruction Skills Self-Advocacy and Leadership Skills Self-Awareness Self-Knowledge Statewide Vision Resource Centre

27. Self Determination & Stepping Back To assist VI/any disabled student in developing self determination and independence we need to learn how to step back and encourage them to do as much as possible for themselves. i.e. If I as a aide, teacher, psychologist or parent do it right they won’t need us any more! Statewide Vision Resource Centre

28. In a Nutshell! If we and they have got it right: “A VI student is able to ask for help, politely and assertively when they really need it and say no, politely and assertively, to help that they don’t need” Statewide Vision Resource Centre

29. Nineteen Ways to Step Back It often feels right to give help to students with visual impairments, but this may not be in their best interest. See Hudson, L. J., (1997). Classroom collaboration. Watertown, MA: Perkins School for the Blind. Available at: http://www.afb.org/Section.asp?SectionID=6&TopicID=19&DocumentID=1573 Statewide Vision Resource Centre

30. Dr Karen Wolffe “Infuse career education throughout their lives…always consider the next environment and how to prepare for it.” Statewide Vision Resource Centre

31. Dr Karen Wolffe • Convey high expectations • Encourage socialization • Develop disability-specific skills • Provide realistic feedback • Promote opportunities to work Statewide Vision Resource Centre

32. Dr Karen Wolffe • A recording of the presentation made by Dr Karen Wolffe at “Skills for Success: Parenting Children with Vision Impairment” http://www.ncbi.ie/news/press-releases/2012-01-30_listen-to-dr-karen-wolffes-presentation Statewide Vision Resource Centre

33. Dr Karen Wolffe • Skills for Success: A Career Education Handbook for Children and Adolescents With Visual Impairments (1998) Edited by Karen Wolffe, AFB Press • Teaching Social Skills to Students with Visual Impairments. Sharon Sacks and Karen Wolffe Ed. AFB Press, 2006 Statewide Vision Resource Centre

34. Resilience I Am, I Have, I Can: What Families Worldwide Taught Us about Resilience. By Edith GrotbergReaching Today's Youth: The Community Circle of Caring Journal, v2 n3 p36-39 Spring 1998 Statewide Vision Resource Centre

35. I Have • People around me I trust and who love me, no matter what. • People who set limits for me so I know when to stop before there is danger or trouble. • People who show me how to do things right by the way they do things. Statewide Vision Resource Centre

36. I Have • People who want me to learn to do things my on own. • People who help me when I am sinking, in danger, or need to learn. Statewide Vision Resource Centre

37. I Am •  A person who can like or love. • Glad to do nice things for others and show my concern. • Respectful of others and myself. • Willing to be responsible for what I do. Statewide Vision Resource Centre

38. I Can • Talk to others about things that frighten or bother me. • Find ways to solve the problems I face. • Control myself when I feel like doing something not right or dangerous. Statewide Vision Resource Centre

39. I Can • Figure out when it is a good time to talk to someone or take action. • Find someone to help me when I need it. Statewide Vision Resource Centre

40. Social and Advocacy Skills • Ask for help politely and assertively when you really need it and say no politely, and assertively when you don’t need help. • Say thankyou when you are helped or when you are left to get on with things when you don’t need help. Statewide Vision Resource Centre

41. Social and Advocacy Skills • Know as much as possible about your VI/condition and be able to answer questions quickly and simply about it. • Learn to be relaxed and calm with questions about your VI/condition. If the “teasers” learn you are not relaxed and calm about it they will tease you about it. Statewide Vision Resource Centre

42. Social and Advocacy Skills • You are the expert regarding your VI/condition. Teach your teachers and aides how to assist you. Talk to them regularly! • The more “cool”, relaxed and open you are about your vision impairment the more relaxed other people will be. Statewide Vision Resource Centre

43. Social and Advocacy Skills • Give things a go, even sport, and if you don’t do well at something, for example a ball hits you head and you didn’t see it, laugh and say: “I am as blind as a bat” or something similar. • Don’t be precious and see yourself as special or different. Statewide Vision Resource Centre

44. Social and Advocacy Skills • Don’t let others define what you can and can’t do with your life. • Learn about what is fashionable and cool to kids your own age even if you are not interested in it. It can help you “blend” in. Statewide Vision Resource Centre

45. Social and Advocacy Skills • If you don’t want to go this way, that’s fine too. Find others that share your interests. The “VI community” is rich and dynamic and populated by individuals who are your peers. It could be your tribe! • Show interest in what other people say and have good chatting skills. Statewide Vision Resource Centre

46. Social and Advocacy Skills • Courtesy, politeness or having good manners are all about respecting others and yourself. So learn the manners that are appropriate for the group you are in. • Don’t play the “I am blind card” to get you out of trouble (or at least not often!) Statewide Vision Resource Centre

47. Social and Advocacy Skills • Stand up for yourself politely and assertively. • When faced with the prejudice and craziness of the world a good sense of humour and the ability to laugh at yourself and the world can be your best defence and survival tool. Statewide Vision Resource Centre

48. Tough talks: Talking to children about sight loss https://www.rnib.org.uk/sites/default/files/APDF-ENG170108_Tough%20talks.pdf