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, prevent isolationism.
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 negatively)

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, ignoring
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 Social Networks

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

Therapeutic Outlets
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, knitting, cooking
o Music – writing, listening, performing
o Drama – take on different roles, forum for sharing experience, video diary
o Writing – diary, short stories, poetry, message boards, graffiti board
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 wine stain”
o Choose to focus on something else

Bullying
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 interest
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 of comfort
o Discussion after – what can you do to make it better, more manageable?

Media
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.

Communication
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: Lexington Books

Ryan-Wegner, N.M. (1992) A taxonomy of children’s coping strategies: A step toward theory development. American Journal of Orthopsychiatry,62, (2) 256-263

Zeitlin, S., & Williamson, G. G., (1994). Coping in young children. Baltimore, MD. Paul H. Brookes Publishing.