One of our most pressing goals is to help support and bring together the communities of patients with congenital and acquired differences and their families. To that end, we have compiled the following resources which may be relevant to this community. If anyone has additional recommendations, please contact us at firstname.lastname@example.org!
- Rady Craniofacial Clinic: https://www.rchsd.org/programs-services/plasticsurgery/
- Children’s Craniofacial Association Website: https://ccakids.org/resources.html
- Craniosynostosis and parent support page: http://health.groups.yahoo.com/group/cranioandparentssupport/
- Information about many of the craniofacial disorders:
- American Cleft Palate-Craniofacial Association: www.cleftline.org
- Feeding your Baby video – special techniques and bottles to help create an enjoyable, satisfying and productive feeding experience for a baby with a cleft palate: http://www.cleftline.org/parents-individuals/feeding-your-baby/
- Faces – The National Craniofacial Association: www.faces-cranio.org
- Apert Syndrome: www.apert.org
- American Cleft Palate-Craniofacial Association: www.cleftline.org
- Information about some state-wide and national societies:
- Cleft Advocate, a program of AmeriFace: an online resource for patients and families: www.cleftadvocate.com
- Patient Advocate Foundation: a national 501c3 providing professional case management services to Americans with chronic, life threatening and debilitating illnesses. PAF case managers seek to safeguard patients through effective mediation assuring access to care, maintenance of employment, and preservation of their financial stability: https://www.patientadvocate.org
- Pacer Center: National bullying prevention center which provides resources and actively leads social change to eradicate bullying: https://www.pacer.org/bullying/
- #choosekind: Choose Kind is a national movement inspired by R.J. Palacio’s novel, Wonder. Teaching student to be accepting of differences and choosing to act kind toward others: https://choosekind.tumblr.com
- Beyond Differences’ No One Eats Alone: this is a stand-alone event from Beyond Differences that takes place during lunch at school to encourage students to be inclusive and sit with new friends and classmates: https://www.nooneeatsalone.org
- KidsHealth: Nemours Children’s Health System’s guide to bullying with helpful talking points, videos, and advice: https://kidshealth.org/en/kids/bullies.html
SOME MENTAL HEALTH RESOURCES
Disclaimer: This material was not written by a therapist, but was put together by people in the healthcare and social work fields who reviewed multiple reliable sources, such as the CDC and Unicef. If you or someone you love needs help, please contact a counselor, healthcare provider, clergy person, or any one of the Help Lines:
- 24/7 HELPLINES:
- Mental Health America Hotline: Text MHA to 741741
- National Suicide Prevention Lifeline: 1-800-273-8255.
- Crisis Text Line: Text CONNECT to 741741.
- Substance Abuse and Mental Health Services Administration (SAMHSA): 1-800-662-4357 (provides education, support, and connections to treatment. It also offers an online Behavioral Health Treatment Locator to help you find suitable behavioral health treatment programs.
- The National Alliance on Mental Illness (NAMI): 1-800-950-6264, email@example.com. NAMI operates an emergency mental health hotline Monday–Friday from 10 a.m. to 6 p.m. EST.
- For young kids, research shows that high doses of adversity, especially in early childhood, can impact brain development and have serious, lifelong effects on kids’ health, well-being and sense of self. But adults hold the power to help lessen its effects. Check out these resources from Sesame Street for some fun, interactive ways to help young kids deal with traumatic experiences — whether they be from surgeries, bullying or other: https://sesamestreetincommunities.org/topics/traumatic-experiences/
- The SmartCare BHCS Clinical Team of Psychiatrists, Nurse Practitioner, Licensed Therapists and Educators can help families with concerns over their children’s behavioral health locate services that offer counseling, medication management, and support groups in the community.
- Check out this resource from the American Psychological Association addressing how Americans with disabilities can cope with Covid-19 stress: https://www.apa.org/topics/covid-19/disability-tip-sheet
In general, stress can be marked by:
- Fear and worry about your own health and health of your loved ones
- Changes in sleep or eating patterns
- Difficulty sleeping or concentrating
- Worsening of chronic health problems
- Worsening of mental health conditions
- Increased use of alcohol, tobacco, or other drugs
Some tips to cope with stress:
- Take care of your body. Try to eat healthy, well-balanced meals, exercise regularly, and get plenty of sleep. Avoid alcohol and drugs.
- Notice, label, and accept your emotions. Putting a label on what we feel helps reduce our concern. For example, when you feel anxious, just quietly say or think to yourself, “OK, there’s my anxiety again.” Keep things in perspective and take note of the good.
- Connect with others. Share your concerns and feelings with a trusted friend or family member. Maintain healthy relationships and build a strong support system.
- Take breaks. Make time to unwind by doing activities you enjoy.
- Avoid too much news exposure. While staying informed is important, it can be upsetting to repeatedly hear about the pandemic. Take breaks from watching, reading, or listening to news stories.
- Letter to the parent of a child with cleft: https://cleftline.org/wp-content/uploads/2018/09/Letter-to-the-parent_2018-factsheet_web-1.pdf
- Letter to a teacher of a child with cleft: https://cleftline.org/wp-content/uploads/2019/03/ACPA_factsheet_LettertoaTeacher.pdf
- Help with social situations: https://cleftline.org/wp-content/uploads/2018/09/Social-Situations_2018-factsheet_web-1.pdf
National Institute of Dental and Craniofacial Research
The mission of the National Institute of Dental and Craniofacial Research (NIDCR) is to improve dental, oral, and craniofacial health.
The Smile Train Online Medical Cleft Library
This excellent new resource has instant access to full transcripts of numerous articles and studies related to every major cleft issue. Great resource for both patients and professionals.
Other organizations and resources in the United States and around the world that support craniofacial differences from birth, accident, or disease:
- ACPA Family Services – cleftline.org
- American Speech-Language-Hearing Association – www.asha.org
- Ameriface – www.ameriface.org
- Apert Owl – www.apertowl.org
- Burn Survivors of New England – bsone.org
- Children’s Craniofacial Association – ccakids.org
- Center for Parent Information & Resources – www.parentcenterhub.org
- Cleft Advocate – www.cleftadvocate.org
- Cleftopedia.com – www.cleftopedia.com
- Cranio Care Bears – craniocarebears.org
- Custom Prosthetic Designs – www.prosthesis.com
- Ear Community – earcommunity.org
- Exceptional Parent Magazine – www.ep-magazine.com
- Eye Cancer Network – www.eyecancercure.com
- Faces of Children – facesofchildren.org
- Face 2 Face Healing – face2facehealing.org
- FACES Camp – www.facescamp.org
- Facing Forward – www.facingforwardinc.org
- HNC Living Foundation – www.hncliving.org
- Hydrocephalus Association – www.hydroassoc.org
- MedlinePlus – Facial Injuries – medlineplus.gov/facialinjuriesanddisorders.html
- Moebius Syndrome Foundation – moebiussyndrome.org
- myFace – www.myface.org
- National Rosacea Society – www.rosacea.org
- NewMouth – www.newmouth.com
- Philly Phaces – www.phillyphaces.org
- Phoenix Society for Burn Survivors – www.phoenix-society.org
- Stickler Involved People – stickler.org
- The Sturge-Weber Foundation – sturge-weber.org
- The Vascular Birthmarks Foundation – birthmark.org
- WonderFIL Smiles – a Facial Infiltrating Lipomatosis community – wonderfilsmiles.com
FACE IT: Facial Disfigurement and My Fight for Face Equality
Written by James Partridge
An honest memoir of the battle after severe facial burns; it’s a practical self-help guide for anyone with a facial difference and a manual for health professionals trying to help them. And, finally, it’s a manifesto for face equality, rooting out the stigmas of face-ism that oppress us all… and urging new face values in our 21st century world.
Children with Facial Difference:
A Parent’s Guide
Written by Hope Charkins, MSW. Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children. Order from Amazon.com if you cannot find it in your local bookstore.