Albinism Fellowship of Australia Conference Presentation – Parents Supporting Your Children

1. Albinism Fellowship of Australia Conference Presentation – Parents Supporting Your Children Geoff Bowen, Psychologist Statewide Vision Resource Centre

2. What’s On • Where I come from and what I do. • Why I became a psychologist and relevance to the presentation. • Being/looking different – the ramifications. • Cognitive Behavioral Therapy (CBT) and good Psychological Health. • Teasing/bullying and tease proofing.

3. What’s On If We Have Time: • Grief and parents and disability. • Myths of parenting and how they mess you up. • Looking after yourself.

4. STATEWIDE VISION RESOURCE CENTRE (SVRC) • 370 Springvale Road, Donvale • www.svrc.vic.edu.au • Educational Vision assessment Clinic (EVAC)

5. Why I became a Psychologist! • A fascination with the capacity of human beings to thrive and prosper despite awful childhoods and terrible circumstances. RESILIENCE • Because my own history of being teased at school a desire to help children with similar problems. • I needed a job!

6. Jan Knuth, 1st NOAH President “Many parents said that teasing, insensitivity, and ignorance about albinism were their greatest challenges. The young people reported being called names like "Whitey," "Snow White," "Casper," "Four Eyes," "Blind Eyes," "Grandma," and "Grandpa." They were asked why their heads shake, did they pour bleach all over themselves, and other embarrassing questions. They also reported being excluded from games because they weren't "good enough."

7. Looking Different – Geoff’s Notes • We seem to be pre-programmed to notice, stare and sometimes comment on someone that looks different. • There is a long history of exclusion and prejudice against those who look different to the “norm” ? GENETIC ? • It is difficult for “norms” of world to understand what it is like and how intrusive it is if you look different.

8. Most of the attention that individuals who are get who look different is just curiosity. • We all stare, we all notice and we are all curious when we are confronted with difference or the out of the norm. • In children, usually around the age of 8 or Grade 3, teasing starts. • Greater inclusion that starts at this age means greater exclusion.

9. Children and particularly adolescents often do not have the manners to deal with people they don’t like or those who are different. • If other individuals pick up that you are sensitive about something, you may be teased about it and such teasing may become chronic. • The kids that I have seen more for teasing problems are redheads.

10. Teasing - Geoff’s Notes • Everybody gets teased and everybody teases. • How much you get teased depends how much it upsets you. The more upset you get the more teasing you will get. • When you stop getting upset, the teasing does not stop straight away, it initially gets worse.

11. Teasing - Geoff’s Notes • For the vast majority of teasing you need to learn to handle yourself. Get teachers and parents involved if: • If there is violence • If there is racism • If there is homophobia • If there extreme prejudice relating to your disability/condition. • If kids you don’t know start to tease you.

12. Teasing - Geoff’s Notes • Teasing can be done by someone you have a close relationship with and its OK. • Telling a child to ignore teasing does not work if they are still being upset by it. • Most teasing is not done by “the bully”, it is done by ordinary kids in groups.

13. Teasing - Geoff’s Notes • Teasing starts around Grade Three and increases steadily and reaches its peak in year 8 and 9. • Hitting or physically fighting back is a problem as it often backfires on the person by either getting him or her into trouble or by providing more fuel to support your child's teasing by class-mates. The teasers still know that what they are saying upsets you

14. Teasing- Geoff’s Notes • Saying mean things back has the same problem has the hitting. The teasers still know that what they are saying upsets you. • By Grade 5 or 6 a lot of children stop telling parents or teachers that they are being teased/bullied.

15. Note Well! • In my experience the more you embrace your difference. The more comfortable you are in your own skin, the less likely it is for people to tease you. • If they do tease you, you just don’t care! • Intelligent and sensitive children are often most at risk.

16. Why do people tease? What do they get out of it? • They might get power and strength from teasing/bullying others. • As a way to be popular and get known at school. • Because they are scared, so they try to scare others to hide their feelings.

17. Because they are unhappy and take it out on others. • Because they are being teased/bullied themselves. • Using teasing/bullying as a way to try and be happier or to have fun • As a way to try and fit. They get greater inclusion at your exclusion.

18. Note Well! Sometimes people are not teasing or bullying they are just interested and want to find out about you.

19. Epictetus, Greek philosopher. People are not disturbed by things that happen but by the view they take of things that happen.

20. Cognitive Behavioral Therapy (CBT) Teaches the benefit of remaining calm or at least neutral when faced with difficult situations. If you are upset by your problems, you now have 2 problems: • the problem, and • your upsetness.

21. Albert Ellis - CBT • I need love and approval from those around to me. • I must avoid disapproval from any source. • To be worthwhile as a person I must achieve success at whatever I do. • I can not allow myself to make mistakes.

22. People should always do the right thing. When they behave obnoxiously, unfairly or selfishly, they must be blamed and punished. • Things must be the way I want them to be. • My unhappiness is caused by things that are outside my control – so there is nothing I can do to feel any better.

23. I must worry about things that could be dangerous, unpleasant or frightening – otherwise they might happen. • I must avoid life’s difficulties, unpleasantness, and responsibilities. • Everyone needs to depend on someone stronger than themselves.

24. Events in my past are the cause of my problems – and they continue to influence my feelings and behaviours now. • I should become upset when other people have problems, and feel unhappy when they’re sad. • I shouldn’t have to feel discomfort and pain. • Every problem should have an ideal solution.

25. ABC’s of CBT A → B → C A = Something happens (Activating Event) B = Beliefs, Thoughts, Attitudes, Assumptions C = Consequences – What you feel and what you do

26. 3 Harmful Irrational Musts • I MUST.......... • YOU MUST........ • The world and the conditions under which I live MUST.........

27. Irrational Self Talk Shoulds • I absolutely should....... • You (he or she) absolutely should...... • The world and the conditions under which I live should..........

28. The 5 Core Hot Links To Unhealthy Emotions • Awfulizing: 100% awful. • I-CAN'T-STAND-IT-IT IS: I can’t stand this happening to me. This causes Low Frustration Tolerance. • Condemnation and Damnation: Wishing punishment and ruin on yourself or others results in anger directed towards yourself and others.

29. I'm Worthless: I am worthless person. Low self-acceptance, low self-esteem and depression result from irrational self-talk and thinking. • Always and Never: I will always be like this and/or my life can never change.

30. Tease Proofing We need to help children change these untrue thoughts: • 'Because I am being teased, no one likes me. • 'Because I am being teased I am hopeless and stupid.‘ • 'Ican't stand being teased.'

31. How to Help • Start early even with pre-schoolers: • Give a complete understanding of their condition and how to explain it to others. • Prepare them for the curiosity, ignorance and prying questions. • Help them develop a script for when they go to school & what to say when asked.

32. Model appropriate ways of dealing with curious and or ignorant people and questions. • Improve your own emotional management. Counselling (CBT based) or read: Clark, L. (1998) SOS HELP FOR EMOTIONS. MANAGING ANXIETY, ANGER AND DEPRESSION.Parents Press

33. Seligman, M. (1992) Learned Optimism. Random House. • Seligman, M et al (1995). The Optimistic Child.Random House. • Learn how to listen. People Skillsby Robert Dalton (Simon and Schuster).

34. Do a parenting course. See Parentzone • Develop your children’s thinking skills: Shure, Myrna B. Ph.D. with Theresa Foy Digeronimo, M.ED (2007) Raising A Thinking Child. Help Your Young Child To Resolve Everyday Conflicts And Get Along With Others The "I Can Problem Solve" Program. • Help your children learn how to relax their body and mind in any situation

35. If children have problems with managing anxiety get them good psychological help early. • If children are starting to have entrenched problems with teasing/bullying get them good psychological help. See the Australian Psychological Society Website – Find a Psychologist http://www.psychology.org.au/

36. Build a good relationship with school. Motto: I want to work with you in the best interest of my child. • Don’t take on the child or their parents yourself, go through the school.

37. References Bullying • Field, E (2007) Bully Blocking Six secrets to help children deal with teasing and bullying (An Australian Publication!) • Freedman, J (2002)Easing the Teasing Helping your child cope with name-calling, ridicule and verbal bullying • Schab, L (2009)Cool, Calm and Confident A workbook to help kids learn assertiveness skills

38. An important thing to remember is that you've got an incredible power. It's easy to forget about it, but here's what it's all about. You have the power to choose how to act when someone teases you. You can get all mad and bothered (though that often makes things worse, doesn't it?). You can get sad and cry (but that doesn't work, either, does it? It just gives the power away to the teaser!) or you can decide that whatever is said or done isn't worth getting all bent out of shape about. When you choose to believe that, you've got it made! Then you've got all kinds of ways of answering (or ignoring) that show the teaser that you're not giving up your power.

39. Useful Techniques • Fogging – Pretending to agree with what is said or saying something really wacky or weird: How many fingers am I holding up? Answer: 292, 3 and half Did you fall in a bath of bleach? Answer: Yes I have had a bath in bleach everyday of my life. Can’t do without my bleach bath.

40. Note Well! You must learn to deliver this response in a completely relaxed manner. So practice it, maybe at home with your parents. Have fun with! The more relaxed you are the better it works.

41. Useful Techniques • Learn how to deliver an assertive message for unacceptable treatment (works well with teachers): An I-message delivered calmly, firmly, close up to the person and with eye contact can be very powerful particularly with others who are normally good people.

42. Example of I- message “When you continually comment on my wobbly eyes and make fun of it I become quite frustrated and an annoyed and it is stopping me having a good relationship with you. If it continues I will have to talk to the teacher about it.”

43. I-Messages • Describe the behaviour – don’t blame, just describe. • State your feelings about the possible consequences of the behaviour. • State the consequences of the behaviour are or might be. N.B: angry I-messages become negative You-messages

44. Note Well! If parents have the best quality of life they can, while still being responsible parents, they can more easily handle the problems that can occur having a disabled child or any child. If parents are functioning well they tend to do the things that effective parents do. Nurture yourself, and take time for yourself and your other relationships.

45. Some Other Thoughts • Never do something for a child that they can do themselves. • People change their behaviour when they are inconvenienced not when those who care about them are inconvenienced. • Increase student’s sense of mastery in their lives. Don’t cheat them and lie to them by trying to give false self-esteem. Self esteem grows out of challenge and mastery rather telling a child they are great regardless of what they do. • Have a laugh now and then.

46. Myths of Parenting • If I make a mistake, it will always affect my child. • As a parent, I have the power to make my children do whatever I want and the responsibility to make them do what’s right.

47. Myths of Parenting (i.e. they are not true) • My children cause my unhappiness, so they must change for me to feel better. • Children are naturally undisciplined and behave like wild animals. Parents must beat them into shape to make them civilized.

48. Myths of Parenting • It is my responsibility to solve my children’s problems and to protect them from life’s threats. • When I had a disabled child my right to a happy and fulfilled life was over. I must completely sacrifice myself to my disabled child because I was the one that gave them life and I am responsible for it.

49. Non-finite Loss And Grief • Parents have prior internalised expectations for their child and life – the loss of expected child. • But now there is a discrepancy and tension between world that should have been, might have been and “what is” emerging. • Losses that are contingent on development, time and dysynchrony with hopes, wishes, ideals and expectations.

50. Enduring presence of grief precipitated by a negative life event – it can come back- transitions are dangerous – starting school! • Retains a presence - helplessness to fix - a ghost. • Dreams, fantasies, wishes – your loss is made obvious when observing other people’s lives. • Also - 20% of mothers reached criteria for diagnosis of PTSD [a general finding among victims].(Elizabeth J. Bruce Parents of children with chronic conditions: The urgency of psychological first aid)