2005 Vascular Birthmarks Foundation Port Wine Stain Conference
By Leslie Graff, M.S., C.C.L.S., VBF Developmental Specialist
Accepting PWS – address parental responses,
gain information, create a support network for child.
Awareness and Understanding – help the child
to understand PWS and find ways to talk about it “It’s my
birthmark”, “It’s a port wine stain”, “It’s
a type of birthmark, I was born that way”.
Social interactions – Literature shows this is
one of the most significant challenges or areas of stress for individuals
with PWS – actively create opportunities for social contacts,
Identity – Help individuals to see their abilities
and not allow PWS to have exaggerated impact on their life.
15 Coping Strategies (can be used positively or
Aggressive activities – rough and tough play,
sports, things that allow for physical release
Behavioral avoidance – not going places/doing
things that are stressful
Behavioral distraction – using action or activity
to change your focus – start talking, walk away
Cognitive avoidance – not thinking about it,
Cognitive distraction – using mental tools, thinking
about something else, favorite place, favorite song
Cognitive problem solving – planning ways to
respond, preparing for situations
Cognitive restructuring – changing how you think
Emotional expression – therapeutic outlets, expressive
activities, appropriate “venting”
Endurance – I got through that, acknowledging
personal strengths and investment
Information seeking – learning about condition,
treatments, stay involved in PWS community
Isolating activities – separate self –
spend a few hours clearing my head and refocusing, yoga, massage
Self-controlling activities – “take a deep
breath”, “count to 10 before responding” tools for
diffusing initial emotional reaction
Social support – talking with others, play, relationships,
mentors, social activities, group activities
Spiritual support – faith, meditation, understanding
of life, sense of purpose, acceptance
Stressor modification – identify the cause of
stress/ remove/change (Ryan-Wegner, 1992).
Regressive/negative coping – fighting, irrational
fears, anxiety, depression, controlling behaviors, poor school performance,
denial, regression, withdrawal, self injurious behavior. (Brenner, 1984;
Zeitlin & Williamson, 1994).
Creating Healthy Environments which Enhance Self Concept and
Sense of responsibility – chores, care for pets,
give assignments, life plan with short/long term goals
Sense of individuality/avenues of self expression –
artistic/expressive/therapeutic outlets. The fundamental nature of art
is that beauty comes from uniqueness.
Sense of competence – support, encourage and
praise them with school work, achievement, talents, learning new skills,
accomplishments, jobs, take classes, sign up for things, reading
Sense of belonging/importance – family, groups,
organizations, community activities, volunteerism, faith, jobs, social
activism – take up a cause, create a support network, boys and
girls clubs, story time
Create positive body image – appreciate body
abilities – view body as more than appearance – sports,
physical activities, yoga, massage, relaxation, have a birthmark doll,
body tracings, portraits
o Appropriate – Aggression/frustration outlets: dance, sports,
running, swimming, “aggression cookies”, play dough
o Young children – tactile experiences-- sand box, water table,
salt tray, rice tray
o Painting, sculpting, drawing, pottery, ceramics, print making, scrapbooking,
o Music – writing, listening, performing
o Drama – take on different roles, forum for sharing experience,
o Writing – diary, short stories, poetry, message boards, graffiti
o Being outside in nature (themes of difference), working with animals
Ways to Deal with Staring
o Make eye contact/ smile, seem approachable
o Start a conversation
o Create an alternative focus by drawing attention to something else.
o Explain your condition, “It’s a type of birthmark, a port
o Choose to focus on something else
o Teach appropriate techniques to respond, practice with role playing
o Use eye contact, firm words “Stop”, “No”
o Humor, silence can throw off the bully
o Lack of reaction – don’t show reaction – bully loses
o Avoid victim mentality, assure it is not their fault.
o Try to minimize opportunities for bullying
o Approach teachers, others about implementing no teasing/bullying policy
Coping with Procedures/Treatments
o Explain procedure using soft, honest language so the child knows what
to expect – outline with steps. Explain duration of time and sensory
experiences – things they will see and feel.
o Plan coping (listen to music, relaxation, self reward, bring favorite
object, security item, toys)
o Provide opportunities for medical play
o Children – avoid separations from caregivers and use positions
o Discussion after – what can you do to make it better, more manageable?
o Exposure to theme of difference, overcoming prejudice, acceptance
in movies, literature, drama, puppet shows
o Avoid media that is focused on single ideal of beauty, unrealistic
degree of perfection
o Utilize online/community resources on bullying, living with visible
differences, assertiveness, support groups, awareness.
o Don’t belittle, disregard, minimize emotions, instead acknowledge
and find appropriate healthy expressions.
o Have family rituals/traditions- eat together, family outings, holidays,
celebrate each other
o “Best part of today?”, “Hardest part of today?”-
helps reflect and develop strategies for future experiences, also identifies
positive experiences in daily living.
Brenner, A. (1984) Helping children cope with stress. Lexington, Massachusetts:
Ryan-Wegner, N.M. (1992) A taxonomy of children’s coping strategies:
A step toward theory development. American Journal of Orthopsychiatry,62,
Zeitlin, S., & Williamson, G. G., (1994). Coping in young children.
Baltimore, MD. Paul H. Brookes Publishing.