Albinism - Statewide Vision Resource Centre

Albinism Fellowship of Australia
Conference Presentation –
Parents Supporting Your Children
Geoff Bowen, Psychologist
Statewide Vision Resource Centre
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.
What’s On
If We Have Time:
• Grief and parents and disability.
• Myths of parenting and how they mess
you up.
• Looking after yourself.
• 370 Springvale Road, Donvale
• Educational Vision assessment Clinic
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
• I needed a job!
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."
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.
• 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.
• Children and particularly adolescents often
do not have the manners to deal with
people they don’t like or those who are
• 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.
Teasing - Geoff’s Notes
1. Everybody gets teased and everybody
2. How much you get teased depends how
much it upsets you. The more upset you
get the more teasing you will get.
3. When you stop getting upset, the teasing
does not stop straight away, it initially
gets worse.
Teasing - Geoff’s Notes
4. 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
• If kids you don’t know start to tease you.
Teasing - Geoff’s Notes
5. Teasing can be done by someone you
have a close relationship with and its OK.
6. Telling a child to ignore teasing does not
work if they are still being upset by it.
7. Most teasing is not done by “the bully”, it
is done by ordinary kids in groups.
Teasing - Geoff’s Notes
8. Teasing starts around Grade Three and
increases steadily and reaches its peak
in year 8 and 9.
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 classmates. The teasers still know that what
they are saying upsets you
Teasing- Geoff’s Notes
9. Saying mean things back has the same
problem has the hitting. The teasers still
know that what they are saying upsets
10. By Grade 5 or 6 a lot of children stop
telling parents or teachers that they are
being teased/bullied.
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.
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
• Because they are scared, so they try to
scare others to hide their feelings.
• Because they are unhappy and take it out
on others.
• Because they are being teased/bullied
• 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.
Note Well!
Sometimes people are not
teasing or bullying they are just
interested and want to find out
about you.
Epictetus, Greek philosopher.
People are not disturbed by
things that happen but by the
view they take of things that
Cognitive Behavioral Therapy
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:
1) the problem, and
2) your upsetness.
Albert Ellis - CBT
1. I need love and approval from those
around to me.
2. I must avoid disapproval from any
3. To be worthwhile as a person I must
achieve success at whatever I do.
4. I can not allow myself to make mistakes.
5. People should always do the right thing.
When they behave obnoxiously, unfairly
or selfishly, they must be blamed and
6. Things must be the way I want them to
7. My unhappiness is caused by things that
are outside my control – so there is
nothing I can do to feel any better.
8. I must worry about things that could be
dangerous, unpleasant or frightening –
otherwise they might happen.
9. I must avoid life’s difficulties,
unpleasantness, and responsibilities.
10. Everyone needs to depend on someone
stronger than themselves.
11. Events in my past are the cause of my
problems – and they continue to influence
my feelings and behaviours now.
12. I should become upset when other
people have problems, and feel unhappy
when they’re sad.
13. I shouldn’t have to feel discomfort and
14. Every problem should have an ideal
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
3 Harmful Irrational Musts
• I MUST..........
• YOU MUST........
• The world and the conditions under which
I live MUST.........
Irrational Self Talk Shoulds
• I absolutely should.......
• You (he or she) absolutely should......
• The world and the conditions under which
I live should..........
The 5 Core Hot Links To Unhealthy
1. Awfulizing: 100% awful.
2. I-CAN'T-STAND-IT-IT IS: I can’t stand this
happening to me. This causes Low
Frustration Tolerance.
3. Condemnation and Damnation: Wishing
punishment and ruin on yourself or others
results in anger directed towards yourself
and others.
4. I'm Worthless: I am worthless person.
Low self-acceptance, low self-esteem
and depression result from irrational selftalk and thinking.
5. Always and Never: I will always be like
this and/or my life can never change.
Tease Proofing
We need to help children change these
untrue thoughts:
1. 'Because I am being teased, no one
likes me.
2. 'Because I am being teased I am
hopeless and stupid.‘
3. 'I can't stand being teased.'
How to Help
1. 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.
2. Model appropriate ways of dealing with
curious and or ignorant people and
3. Improve your own emotional
management. Counselling (CBT based)
or read:
Clark, L. (1998) SOS HELP FOR
• Seligman, M. (1992) Learned Optimism.
Random House.
• Seligman, M et al (1995). The Optimistic
Child. Random House.
4. Learn how to listen. People Skills by
Robert Dalton (Simon and Schuster).
5. Do a parenting course. See Parentzone
6. 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.
7. Help your children learn how to relax
their body and mind in any situation
8. If children have problems with managing
anxiety get them good psychological help
9. 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
10. Build a good relationship with school.
Motto: I want to work with you in the best
interest of my child.
11. Don’t take on the child or their parents
yourself, go through the school.
References Bullying
• Field, E (2007) Bully Blocking Six
secrets to help children deal with
teasing and bullying (An Australian
• Freedman, J (2002) Easing the Teasing
Helping your child cope with namecalling, ridicule and verbal bullying
• Schab, L (2009) Cool, Calm and
Confident A workbook to help kids
learn assertiveness skills
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
Useful Techniques
1. 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.
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.
Useful Techniques
2. 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
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.”
1. Describe the behaviour – don’t blame,
just describe.
2. State your feelings about the possible
consequences of the behaviour.
3. State the consequences of the behaviour
are or might be.
N.B: angry I-messages become negative
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.
Some Other Thoughts
• Never do something for a child that they can do
• 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.
Myths of Parenting
• If I make a mistake, it will always affect my
• As a parent, I have the power to make my
children do whatever I want and the
responsibility to make them do what’s
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
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.
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
• 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)