"Building Independence and Resilience in Usher Kids" Geoff

"Building Independence and Resilience in Usher Kids" Geoff Bowen Psychologist the EVAC and Statewide Vision Resource Centre 06/02/20 Statewide Vision Resource Centre 1 Acronyms Vision Impairment = VI Retinitis Pigmentosa = RP

06/02/20 Statewide Vision Resource Centre 2 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.

06/02/20 Statewide Vision Resource Centre 3 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. 06/02/20

Statewide Vision Resource Centre 4 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. 06/02/20

Statewide Vision Resource Centre 5 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! 06/02/20

Statewide Vision Resource Centre 6 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. 06/02/20

Statewide Vision Resource Centre 7 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 cant change the RP but I can deal with it the best that I can. 06/02/20

Statewide Vision Resource Centre 8 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 Mans Search for Meaning 06/02/20

Statewide Vision Resource Centre 9 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. 06/02/20

Statewide Vision Resource Centre 10 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. 06/02/20

Statewide Vision Resource Centre 11 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. 06/02/20

Statewide Vision Resource Centre 12 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 06/02/20

Statewide Vision Resource Centre 13 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 ones attitude in any given set of circumstances, to choose ones own way.

06/02/20 Statewide Vision Resource Centre 14 2. The Freedom of Choice The ability to choose the way respond as a way to cope with lifes 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.

06/02/20 Statewide Vision Resource Centre 15 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. 06/02/20

Statewide Vision Resource Centre 16 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. 06/02/20

Statewide Vision Resource Centre 17 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;89:615620. doi: 10.1136/bjo.2003.036046 06/02/20

Statewide Vision Resource Centre 18 Adjusting to RP inevitably entails a certain degree of suffering. Suffering can be defined as a state of distress that occurs when a persons 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. 06/02/20 Statewide Vision Resource Centre 19 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. 06/02/20 Statewide Vision Resource Centre 20 Group A Self identified as sighted They conceal their RP

Avoid using assistive devices Dependence 06/02/20 Statewide Vision Resource Centre 21 Group B Self identified as visually impaired They reveal their RP Use assistive devices Independence 06/02/20

Statewide Vision Resource Centre 22 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. 06/02/20

Statewide Vision Resource Centre 23 Self Determination .is a combination of skills, knowledge, and beliefs that enable a person to engage in goaldirected, 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 selfdetermination. Reston, VA: Council for Exceptional Children (Page 115). 06/02/20 Statewide Vision Resource Centre 24 Essential Characteristics of Self-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. 06/02/20 Statewide Vision Resource Centre 25 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 06/02/20 Statewide Vision Resource Centre 26 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 wont need us any more! 06/02/20 Statewide Vision Resource Centre 27

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 dont need 06/02/20 Statewide Vision Resource Centre 28

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 06/02/20 Statewide Vision Resource Centre 29

Dr Karen Wolffe Infuse career education throughout their livesalways consider the next environment and how to prepare for it. 06/02/20 Statewide Vision Resource Centre 30 Dr Karen Wolffe

Convey high expectations Encourage socialization Develop disability-specific skills Provide realistic feedback Promote opportunities to work 06/02/20 Statewide Vision Resource Centre 31 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-wolffespresentation 06/02/20 Statewide Vision Resource Centre 32 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 06/02/20 Statewide Vision Resource Centre 33 Resilience

I Am, I Have, I Can: What Families Worldwide Taught Us about Resilience. By Edith Grotberg Reaching Today's Youth: The Community Circle of Caring Journal, v2 n3 p36-39 Spring 1998 06/02/20 Statewide Vision Resource Centre 34 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. 06/02/20 Statewide Vision Resource Centre 35 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. 06/02/20 Statewide Vision Resource Centre 36 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. 06/02/20 Statewide Vision Resource Centre 37 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.

06/02/20 Statewide Vision Resource Centre 38 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. 06/02/20

Statewide Vision Resource Centre 39 Social and Advocacy Skills Ask for help politely and assertively when you really need it and say no politely, and assertively when you dont need help. Say thankyou when you are helped or when you are left to get on with things when you dont need help. 06/02/20

Statewide Vision Resource Centre 40 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. 06/02/20

Statewide Vision Resource Centre 41 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. 06/02/20

Statewide Vision Resource Centre 42 Social and Advocacy Skills Give things a go, even sport, and if you dont do well at something, for example a ball hits you head and you didnt see it, laugh and say: I am as blind as a bat or something similar. Dont be precious and see yourself as special or different. 06/02/20

Statewide Vision Resource Centre 43 Social and Advocacy Skills Dont let others define what you can and cant 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. 06/02/20

Statewide Vision Resource Centre 44 Social and Advocacy Skills If you dont want to go this way, thats 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. 06/02/20

Statewide Vision Resource Centre 45 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. Dont play the I am blind card to get you out of trouble (or at least not often!) 06/02/20

Statewide Vision Resource Centre 46 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. 06/02/20

Statewide Vision Resource Centre 47 Tough talks: Talking to children about sight loss https://www.rnib.org.uk/sites/default/files/APD F-ENG170108_Tough%20talks.pdf

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