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Children’s Hospital and Regional Medical Center
Family Faces
A Newsletter for Families of the Craniofacial Center
Winter 2008 Volume 2 Number 2
Changing Faces and Lives By Nancy Knoblock Hunton
As a medical social even those they may think sound silly. And, in
worker, Cassandra L. Aspinall, turn, she helps the craniofacial team understand
MSW, discusses face-altering the family’s concerns and priorities. Each family,
procedures with children and she says, has its own set of values that must be
their parents to make sure their taken into account.
expectations are realistic. “It’s An advocate of family-centered care, she
fine if someone thinks, “I will be believes that parents have a right to protect their
more positive about myself if child and make decisions they believe are in the
my nose looks better,” says child’s best interest. However, in some cases,
Aspinall. “But there’s nothing children think that their appearance in fine, but
worse than a child thinking an operation is all their parents, doctors and others imply that the
that’s needed to improve the chances of having a way they look is a problem that has to be fixed.
boyfriend or girlfriend or to be accepted by the This can create a conflict that should be explored.
popular kids for the first time.” Some parents start the dialogue by
Aspinall provides psychological and social dealing with their initial reactions to their child. “I
support for families at Seattle Children's Hospital. encourage them to admit that when they first saw
Working with the treatment team in the their child or learned of their diagnosis they were
Craniofacial Center, she helps patients to better upset,” Aspinall says. “Even for me, after having
understand medical conditions and weigh the been born with a cleft lip and working with so
benefits and risks of treatment. Both she and her many
14-year-old-son were born with clefts, so she has people with
first-hand experience in addition to her children with IN THIS ISSUE
professional training. facial
Her role is to have in-depth conversations differences
with patients and their families about their over the Changing Faces and Lives ……1
expectations, fears and hopes for the future. “My years, Liaison Link……………...………3
responsibility is to introduce the idea of patient seeing my Letters to the Editor…………….4
involvement,” says Aspinall. “I ask children if own child in Scholarships…………………….4
what the doctor said made sense to them, if it delivery took Becoming an Advocate………...5
was scary, if they have any questions. That some Useful Phone numbers………...5
allows them to understand that it’s their body. adjustment. Care Organizing Tools…………6
Younger children, especially, don’t want to be in That doesn’t Classes and Events……………6
charge and make all the decisions, but they do mean I don’t Camp News………………........7
Camp Highlights……………..…8
want the opportunity to participate along the way. love and Picnic Highlights…………….....9
accept him. Farewell to Bryan Williams…..10
The Family It means I’m 2008 Conferences………….…11
Acting as a translator of sorts, she makes a human
sure the family understands their child’s diagnosis being.”
and treatment options by encouraging questions, Cont.on p.2
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Changing Faces and Lives from p.1 timing of such procedure and their impact on the
The Community child needs to be discussed. In addition to
As children head off to school, they have providing a benefit, they can also pose risks, such
more social encounters and more chances with as problems with anesthesia, infection, and
others through sports, clubs, music, and social unsatisfactory outcome. Other drawbacks to
events. consider include missing school, extracurricular
“Identity development becomes more activities, and contact sports.
complex during this time, as children enter more She reminds parents that improving their
formalized educational and recreational settings,” child’s appearance is not like other ways of
says Aspinall. “All children, including children improving a child’s life, such as going to soccer
with facial conditions, must cope with how they camp or signing up for French lessons. That is
are perceived.” not to say that the physical risk isn’t worth taking,
Juggling treatments, seeking additional but considering this reality is important.
assessments, and evaluating elective procedures Ultimately, the risk belongs to the child,
can further complicate the school year. and, therefore, she believes children should be
Psychological rather physical issues may drive informed as much as possible and involved in
changes to appearance, and both need to be decision-making in a developmentally appropriate
considered in deciding the best course of action. way that also takes into consideration the values
Parents may be nervous when sending their child of the family. As patients change and develop,
to school. “When your child is born with a she urges them to examine the relationship
medical condition you have over-activated radar. between who they are and what they look like,
You’re on the alert for things that others don’t and to carefully evaluate any alteration of their
have to worry about, and you want to protect, appearance.
protect, protect. But, over time, backing off may
allow your child that magical moment when he or Dealing with Feeling
she meets somebody who’s supportive and How people look can strongly affect how
welcoming, and has such a great time.” they feel about themselves. Both boys and girls
with facial differences may experience low self-
Society esteem, anxiety, and depression but express it in
In addition to the local community, society different ways. Counseling may be needed to
at large may influence a decision about whether clarify the motivation for surgery and perceived
or not to undergo a craniofacial procedure. benefit.
(While some procedures like opening an airway Aspinall fully endorses opting for
are obviously not optional, others are.) Having a reconstructive surgery if people believe it will help
cleft lip revision surgery, for example, may help others to perceive them as they truly are. “I
the child and family feel more comfortable and always tell insurance companies that the reality is
accepted in society. that we’re not taking normal structures and
“Although parents love their children even making them more perfect,” she says. “We are
before any operation,” says Aspinall, “they worry taking abnormal structures and making them
about issues of inclusion and acceptance. The more normal.”
decision to have surgery is bittersweet, because if Her goal is not to dictate what other
the world were a perfect place, we would all people should do but to discuss feelings and
tolerate each other regardless of how we look.” values. She constantly reminds children and their
Making modifications chiefly for the sake families to talk together about the bumps in the
of appearance, particularly in children too young road. “They come up for everybody, she says.
to give informed consent is a matter of debate in “And the reality is your child will have a lot of
medical circles. Many plastic surgeons argue strengths and a lot of interests. You’ll be proud of
that altering facial features is necessary to reduce her and mad at her like any other child. The key
possible stigma, while some medical ethicists is to remind ourselves that we can make it
counter that exposing a human to avoidable risk through life’s challenges, both planned and
is unacceptable. unplanned.
Aspinall encourages parents-and Reprinted with the permission of the
surgeons-not to automatically perform secondary Foundation for Faces of Children
revision before a child enters kindergarten. The
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Liaison Link
By Catherine Rogers
This is the second Family Faces Newsletter I have edited since being hired as the Craniofacial Center Family
Liaison. In the last newsletter (July ’07) I posed the question to readers “How do you handle staring?” My 15
year old son Jack, who has a cleft, handles staring quite naturally. His charm and relaxed demeanor go a long
way in diffusing any rudeness or ill-will. He is just himself and who can argue with that? Once again, Jack is
teaching me about life. He has done this since he was born. But, as his mother who is (I’ll say it) sensitive and
protective, I need some pointers.
I decided to do some sleuthing on this subject. My research led me to a few resources I would like to share.
Each of them offers great advice and the one common theme in each is to practice how to respond. Try different
responses and see which one feels the most natural. The more you practice the more natural your response will
feel.
Changing Faces. Everybody’s staring at Me! How to communicate when you have an unusual face. UK. 2002.
Pamphlet available in craniofacial clinic. This pamphlet encourages good basic communication skills with
specific situations in which to write/practice responses.
Changing Faces. My Child Looks Different. UK. 2003. Pamphlet available in craniofacial clinic. Focus is on how
parents and family cope with other people’s reactions.
Kaufman, Gershen, et al. Stick Up for Yourself! Every Kid’s Guide to Personal Power and Positive Self-Esteem.
Minneapolis, MN: Free Spirit Publishing, 1999. This book uses simple words and real-life examples on how to
stick up for yourself. It discusses feelings, needs and dreams for the future.
Palmer, Pat. Teen Esteem: A Self-Direction Manual for Young Adults. Atascadero, CA: Impact Publishing, 2001.
This book is for the teen reader. It provides guidance in a workbook format on developing self-esteem and a
positive attitude.
Bristow, Logan. Making faces: Logan’s Cleft Lip and Palate Story. Ontario, Canada: Pulsus Group, 2007. This
book is distributed and sold by About Face International. Both of my children loved this book. It reads like a
photo album chronicling Logan’s life through pictures and journaling.
Center for Young Women’s Heath, Children’s Hospital Boston. Building a Healthy Body Image and Good Self-
Esteem: A Guide for Teens with Facial Differences.
Website:http://www.youngwomenshealth.org/facial_difference.html. This site is not just for women and girls. It
offers friendly advice and practical tips written by teens for teens.
Visit the Children’s craniofacial website for
more reading resources and links to useful If you have books you would like to
websites. share with others, please send your
http://craniofacial.seattlechildrens.org/home/ suggestions and short reviews to me at
Catherine.rogers@seattlechildrens.org
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Letters to the Editor
Editor’s note: As the Craniofacial Center Liaison and editor of the Family Faces Newsletter I aim to
open and create a dynamic dialogue in and amongst the families of the craniofacial center. I try to
include information that is useful for the challenges typical of “our” families. If you have any
suggestions or would like to submit an article, please email them to me at
Catherine.rogers@seattlechildrens.org
Following the publication of the Family Faces July ’07 I received the following suggestion. Thank you
for your input, Mary Jo!
Dear Catherine,
Thank you for the most recent issue of the newsletter. It looks great! I am especially
appreciative of the inclusion of the "Dental Bill" section as this has been a huge challenge for our
family. I have already established procedures with our own insurance companies, but for new families
just starting through the maze of medical and dental insurance this is a big help. It shouldn't have to be
so difficult, but given that it is then you should need to know where to go for help. I never had seen the
"About Your Dental Bill" brochure before and am glad to know that families will get that at the start. I
had to wade through it all on my own -- it took years...
By way of introduction, our son, Sean, is nine and a patient at CHRMC's craniofacial center. It
has been a great resource for us these past nine years. You asked for ideas in the "Liaison Link"
section. I have a couple of thoughts for you.
One idea is for a list of books and publications -- factual or inspirational -- that families have
found helpful. You could solicit contributions from patient families and perhaps a one or two sentence
description of each book.
Another idea is to list all the national craniofacial associations and link up with any family-
oriented conferences. For example, I went to a conference of the North American Craniofacial
Association in Las Vegas last summer (July 2006) and was kind of surprised to be the only person from
the Northwest. I think the newsletter could be a great place to let folks know about other organizations
such as Let's Face It, About Face, etc. Also just to let folks know where there are other craniofacial
centers across the country in case they have to move or are seeking expertise in a given craniofacial
difference. Mary Jo Gallagher
Scholarships
• Cleft Palate Foundation College Scholarship. For more information visit:
www.cleftline.org .
• The Aboutface Scholarship Program. For more information visit:
//www.aboutfaceinternational.org/programs/national_scholarship.php
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Becoming an Advocate for your Child
By Catherine Rogers, Marsha Ose, RN, CL, and Ember Fry
While a team of professionals takes care of your consider all options. Remember, it is always
child at Children’s, it is really the family that has ok to ask more questions.
the most crucial role to fill. No one knows your
child better than you so it is up to you to • Understand the chain of command for
effectively pass on that knowledge. The process your child’s providers. Ask how the
of gathering and sharing information is critical as system works for processing requests,
you become as advocate for your child. questions, etc. Trust that your requests are
being considered by the team as quickly as
Being an advocate for your child may seem possible. If you are waiting for a call back,
overwhelming. Here are a few pointers to help follow up with the original person you
you become an effective advocate for your child. contacted. They will know the status of your
request. Understand that it is not productive
• Schedule and keep appointments. to call numerous people with the same
Scheduling appointments can be difficult and request as this diminishes the efficiency in
we appreciate your efforts to keep which requests are met.
appointments that are scheduled. We
understand that sometimes it is necessary to • Ask questions. Do you have questions or
cancel an appointment, for instance if your concerns about your child’s care in the
child has chicken pox, a fever, or another Craniofacial Clinic? Start by calling one of
communicable disease. If you do need to the team’s nurses or social workers to get
cancel, please try to do this as soon as you help. Be sure to leave a message if you get
know you will not be coming. At that time, someone’s voice mail. Remember that our
talk to the Family Resource Coordinator staff is often busy in clinic or addressing
about rescheduling. other needs and issues. This may seem
frustrating but be assured that voice mail is
• Gather information. Gather as much checked regularly by team members and all
information as you can at appointments and calls are returned.
hospital stays. It may be helpful to bring a
notebook to take notes and write any • Call the Center. If you have concerns
questions that arise. If you don’t understand about how your child is coping at home,
a procedure, the timing of an operation, or school or in anticipating an upcoming
anything else, be sure to ask about it. The surgery ask to see a Social Worker. The
more you understand, the better informed Social Workers can also assist with travel and
your decisions will be. A notebook is also a
good place to keep track of post-operative
transportation issues.
care.
• Listen to your child’s care team. After
listening to your child’s care team, carefully
Useful Phone Numbers
Appointments and scheduling: (206)987-2008
Craniofacial Nursing line: (206)987-1117
Dawn Leavitt, RN: (206)987-7479
Marsha Ose, RN: (206)987-2188
Suzanne Siegel, RN: (206)987-2458
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Monica Andrews, LICSW: (206)987-3159
Cassy Aspinall, LICSW: (206)987-3271
Care Organizing Tools
The Care Notebook and Care Organizer are tools for families who have children with special health care needs.
Families use Care Notebooks to keep track of important information about their child's health and care. This
makes it easier to find and share key information with their child's care team.
What are the Care Notebook and Care Organizer?
The Care Notebook is a 3-ring binder. It contains supplies that make it easier to find information quickly. These
supplies include plastic pages that hold business cards and several pocket dividers that hold papers. The Care
Notebook also contains forms that families may fill in. These 39 forms are available below.
The Care Organizer is a plastic expanding file folder with individual pockets labeled to help organize paperwork.
Multi-lingual including English, Spanish, Vietnamese, Russian, Chinese and Somali.
How can they help?
In caring for a child with special health needs, families may get information and paperwork from many sources.
Families can use the Notebook or Organizer to help organize the most important information in a central place.
How do I order one?
Families in Washington State may order one CARE Notebook one CARE Organizer for a child with special
needs at no cost. Current funding only supplements the products and materials for families in Washington State.
Therefore, for orders out-of-state, the Notebook and Organizer cost $20 each. Families should call Children’s
Resource Line and provide their name, mailing address, phone number, and the item they would like to order:
By phone By internet
1-866-987-2500, option 4 http://www.cshcn.org/resources/CareNtbk.cfm
(206)987-2500m option 4
Children’s Classes and Events
Children’s Community Health Fair
A free, hands-on event for families and children ages
Sibshops 3 to 8. Learn about health and safety and Children’s
For siblings of Children with Special Hospital through fun activities including Teddy Bear
Health and Development Needs Clinic a visit from the Tooth Fairy, ambulance tours,
Dates: For siblings ages 10-13: finger casting, wheelchair obstacle course and more.
March 8, May 2 Free bike helmets and fitting for adults and children.
For siblings ages 6-9 Quantities are limited and wearers must be present.
April 5, June 7 Date:Saturday, March 1 10a.m. to 2 p.m.
Location: Children’s Whale Parking Garage
Time: 2:00 – 5:00 p.m. Learn more: Call (206)987-1569
Fee: $20 (includes snack)
Location: Sound Café, Children’s 2008 Pathways Lecture Series for Parents
Hospital Children’s joins ParentMap magazine in presenting
For registration materials and additional this series for parents where leading experts on child
information, call (206) 987-3285 development address the many challenges and
concerns that parents face in raising children.
Lectures are held at various locations throughout the
Puget Sound region. For more details on each lecture
visit www.parentmap.com/pathways or call (800) 838-
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3006.
Camp News
By Monica Andrews, LICSW
This past summer 42 youth from the Craniofacial Center attended a week long camp session at Camp Killoqua.
The camp offered a great opportunity for the kids to meet others like themselves as well as enjoy swimming in
the lake, arts and crafts, tie dying and even horseback riding.
As the liaison between the Craniofacial Center and Camp Killoqua, I was honored to share time with the
campers. I watched the kids learn and grow together throughout the week and form a great sense of
community.
I am excited to announce that we will continue to offer a camp for patients from the Craniofacial Center.
Although we have great respect and fond memories of Camp Killoqua we will begin a new collaboration this
summer and in years to come with Camp Korey. Camp Korey has additional support services available for
registration, recruitment and during the week of camp that will better serve our population. In addition, the camp
is free for all attendees!
Camp Korey is a proposed affiliate of the “Hole in the Wall Camps,” founded by actor Paul Newman in 1988. Ten
such camps exist worldwide, serving nearly 10,000 kids a year. This is Camp Korey’s first summer and we are
excited about the opportunity to learn and grow with the camp over the years.
Camp Testimonials
Hello, I’m Timothy Gormley, and I attended a
Craniofacial Camp at Camp Killoqua this past
summer. I met a lot of nice counselors and cabin
mates, some from other cabins. Learning archery
was my favorite thing at the camp, along with riding
horses-mine was named Pawnee-, swimming, a
scavenger hunt, and boating in a rowboat. I liked
the fact that, unlike school, no one laughed at me
because of my neck, and that I could feel like a
happy and normal kid. I would also like to say The Craniofacial Center announces
Thank You to Ms. Andrews for telling my parents Camp Korey
about the camp. See you next year! Summer 2008
The camp is for youth ages 7-16 with
Camp Killoqua was nothing like any other camp in facial differences
the world! I had more fun than I have ever had in July 21-25 Ages 7-11 years
my whole life. I made so many new friends it was July 28- Aug. 1 Ages 12-16 years
great. We got to see some deer, rabbits, chipmunks
and squirrels. They were so cute! I really enjoyed Activities include boating, fishing,
the horseback riding it was so, so, so fun! We got to swimming, biking, noncompetitive
do tie dye, go row boating, swimming, archery and sports and recreation, discovery
climb the rock wall! The rock wall was a little scary science zone, climbing wall, theatre
but with the help from my new friends, I did it. One and arts and crafts.
of the best parts was at night we all sat around a
camp fire and had so much fun laughing and For more information contact:
laughing the whole time! All the councelors and Hilary Carey
staff were so nice and helpful. I’m coming back next 425-577-2084
year for sure!! By Darcy Parker hcarey@campkorey.org
www.campkorey.org
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Camp Killoqua 2007 Highlights
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Big thanks to the Schoegll Family!
The annual Craniofacial Center family picnic provides a relaxed atmosphere away from the hospital for families
of the Craniofacial Center and is looked forward to by all. Nancy Schoegll, her husband Jim and daughter
Christine (age 10) have assumed leadership, time and effort, making the annual picnic possible year after year.
This year, under cloudy skies and rain, the Schoegll family showed their true Northwestern spirit by providing two
tents under which food was served and children enjoyed arts and crafts. Many thanks to the Schoeggl family
whose dedication is truly appreciated by the center families.
Keep posted for next year’s picnic date!
Picnic Highlights
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Dear Families
As many of you have learned I have
A Fond Farewell left my position at Children’s
Hospital as of mid October. I
wanted to take the opportunity via
the newsletter to let each of you and
The Craniofacial Center is proud to your children know how privileged I
honor and thank Dr. Bryan feel to have been part of your lives.
Williams, Orthodontist, whose I was a member of the craniofacial
years of service in the Craniofacial team for almost 17 years and during
Center have enriched the lives of this time I have been truly blessed to
his patients and his colleagues. be part of a dedicated group of
professionals with a passionate
We wish him the best in this next focus on the well being of children
chapter of his life! with craniofacial conditions. It has
been a true personal and
professional pleasure to get to know
you and your wonderful children. I
am now looking for a different career
pathway for the last segment of my
working life and as I move through
that phase of my life I will continue
to carry warm memories of all my
interactions with you and your
children. I wish the very best future
for you and your wonderful children.
May the road of life bring them joy
and fulfillment.
Bryan Williams
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2008 North American Craniofacial Family Conference (NACFC)
July 21 - 23, 2008
Tuscany Suites & Casino, Las Vegas, NV
For more information visit: http://www.cleftadvocate.org/nacfc.html
7th annual Cleft Palate Foundation Connections Conference.
April 12, 2008.
Loews Philadephia Hotel, Philadelphia, PA.
For more information visit: http://www.cleftline.org/parents/connections_conference
18th Annual Cher's Family Retreat weekend
Myrtle Beach, SC, June 26th-29th, 2008.
For more information visit: http://www.ccakids.com/prgRet.asp
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Learn more about Children’s Craniofacial Center at http://craniofacial.seattlechildrens.org/home/
• Resources for patients and families
• Links to information and support
• Answers to commonly asked questions
• Clinical research and advances
• Recommended reading
• Glossary of terms
• Family Faces newsletter
• Featured stories
• Important telephone numbers
Craniofacial Center
4800 Sand Point Way NE, W-7847
Seattle, Washington 98105
Phone: (206) 987-2208
Fax: (206) 987-3064
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