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I have a nearly 12-year-old granddaughter who is entering middle school in September. She was born with a very rare genetic skin disorder, which presents with some visible differences. Because of the disorder, her face often looks noticeably red, sometimes all over, sometimes blotchy. The skin on her face peels, and sometimes as much as she tries, she cannot get all of the peeling off. The skin of her scalp becomes thick and needs to be combed out, something she cannot as yet accomplish on her own. It is a lengthy process to get the scales in her scalp out, and right now her mom (my daughter) does it every 2 or 3 days. In the meantime, it is obvious that the scales are thickening in her scalp. Also, the syndrome produces “bamboo” hair, which means it is very fragile and breaks easily, resulting in very thin, uneven hair.
All of her life, she has had to deal with always being stared at, and people constantly ask what is wrong with her. She is aware of this and usually handles it by ignoring the question and seems to leave it to the adult with her to answer; I do not know how she handles it when she is on her own in school. In the school she is in now, she seems to have a lot of friends, and also plays often with neighborhood children. She seems to have a lot of confidence, in fact, just recently was in a talent show where she got up in front of hundreds of people and sang a song ‘a capella’ and did very well.
I know that things change when children enter middle school and become more body-conscious and want to be accepted by their peers. She has been accepted into an advanced program in middle school, and only 3 of her friends from elementary school will be attending that program, so all new kids. I am writing for your advice as to how I can support her through the coming years. I am the mother of two daughters and remember the struggles and issues of the pre-teen and teenage years and am concerned that with her visible differences, she may have additional challenges in maintaining her self-esteem.
Any advice or insights you can offer are greatly appreciated! Thank you for having this forum where people can post these questions.
Thank you for reaching out; this is a great question and I have numerous suggestions. First, I am wondering if someone could gently challenge her to answer the questions strangers pose to her in public? Perhaps role-play different scenarios with her until she feels comfortable. Simone Marean, GLI’s Co-Founder and Executive Director, has an excellent video and lesson on how adults can engage young people through role-play here. I think being proactive and empowering her is key as she learns to navigate the curiosity of others.
Regarding her transition to middle school, I suggest scheduling a conference with her school counselor ASAP. Often, school counselors will run transition and new student groups at the beginning of the year, and other groups throughout the year depending on student need. School counseling groups are a great way for students to meet and learn more about one another, and school counselors are awesome resources and advocates for all students.
As you stated, kids are likely to ask what is “wrong with her.” Often, kids do not know how to respond when they see a “visible difference.” Depending on their age and maturity level, some will stare, some will ask questions, some will not say anything, and some might be cruel. Given her high confidence in front of others, I suggest she design a multimedia presentation (PPT, Google Slides, Prezi, etc.) about her condition for her teachers and classmates.
If I were her school counselor, and she was ready, I’d outline it with her (name of the condition, why she has it, what it is like for her to live with it, myths, facts, why/how it makes her awesome, question/answer), and help her put it together. Then, I would invite her to deliver it to her teachers in a scheduled before or after-school meeting. Next, depending on how she is feeling, I would arrange for her to present to her classmates. Maybe each of her teachers could arrange for her to have five minutes at the beginning of each class one day? I think being proactive will not only be helpful for her, but for others. Also, October is National Disabilities Awareness Month, and would be an excellent time for her to educate others about her condition.
As you’ve personally experienced, middle school is often challenging for all parties involved. Her emotions are likely to be all over the place, and perhaps heightened with her condition. It is also prime time for her to practice self-advocacy and learn that being different is her power. Keep reminding her of that. Text her, email her, tell her, and randomly send her a snail mail card – just because. There will be times she does not believe you, there will probably be times it will piss her off, but it is the truth. She needs to hear those words often.
And to other parents reading this, please talk to your children about people living with visible and invisible disabilities. We have to continue to raise awareness in order to provoke change. I’ve included a list of links below.
Be Fearless Be Kind (Empathy training for kids developed by Hasbro)
Understanding Disabilities (Lesson Plans from Teaching Tolerance)
Send your questions to firstname.lastname@example.org
Dr. Julia V. Taylor is a Counselor Educator at the University of Virginia in Charlottesville, VA. She is author of The Body Image Workbook for Teens, The Bullying Workbook for Teens, Salvaging Sisterhood, G.I.R.L.S: Group Counseling Activities for Enhancing Social and Emotional Development, and a children’s book, Perfectly You. She can be reached at www.juliavtaylor.com