Three Cheers for Volunteers!

CCA is fortunate to have volunteers serving in many capacities – awareness, fundraising, networking, and more! They help push us closer to achieving our mission and vision. One of these volunteers is Khadija Moten.

After graduating with her Bachelor’s of Science in Healthcare Studies, Khadija was interested in pursuing an internship to give her more insight into the types of opportunities she may pursue with her career. Interested in nonprofits, Khadija reached out to CCA to see if we had any internship opportunities … and we do! Since coming on board as a volunteer and intern, Khadija has helped us with our marketing efforts by creating social media posts and graphics, press releases, and community outreach. She’s also heading up the effort in Dallas to collect ink cartridges to send a family toretreat using the funds raised. Khadjia has done an excellent job at spreading the word and for her effort and time, we give Three Cheers for our super volunteer, Khadija Moten!

3 Ways to Encounter A Child With Special Needs

By  Jeanine Ewing

I frequently end up in conversations with moms who have typical children, and we almost always end up on the topic of what-do-I-do-when-my-kid-sees-someone-different.  Unfortunately (or fortunately, as it may be), being a mom of two girls with very different special needs, I often get asked this question.  It’s valid and even really a necessary one for those who genuinely want their kids to be exposed to people of all varieties.  I admire those parents who strive to answer this question.  

The question remains, What do we do to make sure we value those people who sit on the fringe of society because of their differences?  How do we welcome them and move beyond mere tolerance or acceptance?  Let me offer you a few practical tips on how to encounter a child with special needs.  These are all written from my own experience as having children who are different.

1. Don’t be afraid to approach the parent first.

So many times I see a mom whisk her kid away in embarrassment upon quick appraisal of Sarah’s visible differences, and I wish that she would have had the gumption to simply approach me.  Yes, it takes courage.  Yes, it will lead you outside of what’s comfortable, but so what?  Is anything in life that’s worth much at all truly comfortable?

On the few occasions when a mom’s child makes a comment or asks a question about Sarah’s craniofacial condition and she actually walks over to talk to us, I am flabbergasted – in a good way, of course.  But I always welcome them with a smile.

You see, most of us caregiver-parents are more than happy to answer your questions.  Naturally, they should be thoughtful ones.  Nobody wants to hear something like, “May I ask you why your child has such a weird-looking face?”  But if it’s phrased with sincerity, we will almost always be open to discussing it with you, because it does two things – one, it educates you about our child’s differences (which eliminates or at least drastically reduces the fear factor), and two, it allows us to engage in meaningful conversation with each other.  You and I are both left enriched and better for it.

My first point is to merely ask.  Say to your child after an uncomfortable question or outburst, “Well, let’s ask that child’s mommy over there.”  And then approach us with a smile, saying something like, “Excuse me, but my child and I were wondering if it was okay to ask you a few questions about your daughter.  We notice she’s different, but we’d like to learn more about her.”

Bingo.

2. Use common courtesy.

This point should go without saying, but unfortunately it needs to be frequently reiterated.  When you see someone in a wheelchair, someone with leg braces, someone who drools or talks loudly, just smile and make eye contact.  Seriously, do you know how impressionable this is?  And how lacking?  I mean, all it takes is for you to acknowledge that my child is a valuable person.  You don’t need to immediately delve into a deep conversation about life and death (though that certainly may happen naturally on occasion).  All you need to do is smile, wave, say hello, and move along.  No harm, no foul.

What this does is model to your own children that people are people, regardless of differences.  It also may invite further conversation with your child in private about how some people are born to look differently than others, and this is a good thing.  I realize at a particular developmental age children all want to be the same, dress the same, act the same.  But instill in them the concept that different is good at a young age, and they will be all the better for it.

3. Get to know the family.

If you become closer to the family as a whole, you may be surprised to learn that they are typical in some ways.  Yes, their lives may revolve around changing dressings or cleaning medical equipment.  They may have myriad appointments and multiple therapy follow-ups, but they are still a family.  They laugh.  They enjoy fantastic moments of enlightenment, closeness, and joy.

If you are brave enough to get close to them, you may find a kinship or sense of camaraderie with their lives.  Families who have kids with special needs offer a unique perspective to the world – while very much mainstream in their interests and lifestyles (like going to work, cleaning house, cooking, etc), there is a rare depth to them that does not tend to exist in typical homes.  Get to know them.  Befriend them.  Don’t be afraid to get close to those who are caregivers.

Yes, suffering is uncomfortable.  To be faced with it on a daily basis can be excruciating.  I realize that our children’s visible differences are raw reminders that suffering exists and can be ugly and unbearable.  But don’t let that stop you from a potentially life-changing relationship with both the parents and children.  It’s likely to be a mutually beneficial situation.

Jeannie Ewing is a writer, speaker, and grief recovery coach.  She is the co-author of Navigating Deep Waters: Meditations for Caregivers.  Jeannie was featured on NPR’sWeekend Edition and Tony Agnesi’s radio show Finding God’s Grace.  For more information on her professional services, visit her websites lovealonecreates.com orfromgrief2grace.com. 

Text Copyright 2016 Jeannie Ewing, all rights reserved.

Image Copyright 2015 “Disability” by gmwolford on Pixabay and edited in Canva by Jeannie Ewing.

Growing Into Advocacy

In this piece, originally posted to The Mighty website, Cynthia Murphy writes about her experience living with and advocating for those affected by Treacher Collins Syndrome. Though initially reluctant, Murphy took her advocacy work seriously to help improve the lives of others living with facial differences. Here is how Murphy found her voice as an Advocate for Treacher Collins Syndrome.

By Cynthia Murphy 

I wasn’t born an advocate for Treacher Collins syndrome (TCS), and if anyone had asked me what I wanted to be when I grew up (which few people did), it would have been the last thing to cross my mind. Like others with disabilities, I was just trying to survive and lead a normal life by pursuing my educational studies and working full time.

Later, I advocated for my friends and family because I had a law background and they didn’t. I did legal paperwork, helped get financial aid for students and wrote any number of letters to help any number of people. Yet I still didn’t consider myself an advocate, especially since a lot of what I did was an attempt to buy friendships.

Someone told me recently that she could not connect with others who had Treacher Collins. I think I might have been the same way when I was younger. I didn’t want to be in the Treacher Collins world. I wanted to be in the “normal” one. Unfortunately, the people in that world, most of them anyway, were the ones who judged. They couldn’t understand our differences; and in all honesty, we couldn’t fully relate to them either.

This year, I met two people older than I who have established careers and who are comfortable with who they are. They don’t care if other people are looking at them, and they made me question why I still do sometimes. Although our stories are different, they inspired me. About the same time I met them, I started posting articles and videos on social media. Immediately I heard from hundreds of people saying that I am an inspiration to them. Now, I get it. Advocacy is about awareness. It’s the bigger picture. It’s about relating to others in more ways than one.

There weren’t any books on craniofacial differences when I was growing up. I had no advocates. Thus, I was essentially alone in a sad, depressing world. I wanted to be part of so many things, and I couldn’t. Getting picked last for baseball or group projects in art, history, or drama is a horrible feeling. It happened to me all the time, and I hated it. When I advocate for Treacher Collins, I’m doing it for everyone who has ever suffered those feelings of inadequacy and exclusion. And I’m doing it for me.

Yes, I’m afraid sometimes. And no, I can’t always separate myself from the criticism I receive. When you’ve experienced ridicule, the last thing you want to do is speak out publicly and leave yourself vulnerable to criticism. Still, I feel I have a voice that stems from my experience, and I am committed to making it heard.

No one “kind of” has Treacher Collins — just as no one “kind of” gets bullied, “kind of” gets discriminated against, or “kind of” suffers from insecurities and depression as a result of all those. No one is “kind of” an outcast.

I’m advocating for the person who maybe only has the distinctive eye shape. I’m advocating for the young person facing his or her 30th surgery. I’m advocating for the people who, like me, have to function simultaneously between a sound and silent world. 

I’m advocating for myself, and I’m advocating for you.

Cynthia is not just an excellent advocate. She's also a fundraiser, who hosted a successful wrestling event last Sunday, September 25 in San Jose, CA to benefit CCA and other charities.

A Beauty with A Twist

By Rasheera Dopson 

Hi my name is Rasheera I have a craniofacial condition and this is my story! I was born with three very rare syndromes. VATERS Syndrome, Hemifacial-microsomnia Syndrome, and Golden Har Syndrome. These syndromes caused me to be born with several facial and bodily deformities—resulting in 101 surgeries in my life.

Growing up and having such a rare condition I didn’t see much of anyone who looked like me. My difference was so obvious and made me feel self-conscious most of the time, which was hard because I constantly felt like I didn’t fit in.  I always compared myself to other girls I would see in school, magazines, and TV shows and because my beauty didn’t look like theirs I felt ashamed.  Instead of embracing my difference, I did everything in my power to hide it. In my mind I just wanted to be normal.

Nevertheless, I came to a point in my life where I grew tired of rejecting and hiding my differences. I was sick of trying to fit into the norm, when I knew I wasn’t ever going to be normal. I knew that deep down inside, even though I didn’t have a face like everyone else, there was something beautiful about me. I just needed to figure out a way to find it; that’s exactly what I did. I began to change the outlook that I had of myself. I no longer saw myself as the girl with no ear, the one with a crooked face, but a girl with something unique. In making the conscious decision in accepting who I am, I began to find purpose in my difference. Instead of dismissing my difference, I began to embrace it. I began to refer to myself as a Beauty with a Twist. I came to the realization that although my face isn’t typical, it is beautiful and my beauty is worth sharing with the world.

So now I call myself an advocate for all the other Beauties with a Twist—fighting against low self-esteem in young women, especially those who are different. Knowing well the battle within between low self-esteem and confidence, I strive to encourage every girl near and far that it’s okay to be you. It’s okay to embrace your difference.  

The day I decided to accept my beauty was the day I let my beauty, my difference, change the world!

Differences Shouldn't Mean Social Isolation

September marks Craniofacial Awareness Month, and the  beginning of the school year for many families. This post from April 4, 2016, focuses on acceptance of differences at school for all kids, but especially for those with facial differences. 

Differences Shouldn’t Mean Social Isolation 

For elementary and middle school students such as Auggie, the main character from the best-selling novel, Wonder, the thought of going to school each morning fills them with dread and anxiety – not because of the classroom work, but because of the social environment.  

In the United States, young people spend half of their waking hours in school. Lunch and recess give students a way to break up the day, socialize and recharge before going back to class. But, for some students, especially students who may have differences or have fewer social skills than their peers, lunch and recess are hardly a time to unwind. It is a time to dread.

The social pressures of the playground and the lunch table combined with a students' social status redefined on today’s digital play ground, can make lunchtime more stressful than academic work itself.

How can we help a child or teen who doesn’t want to go to school because even lunch seems like misery

Parents can play an important role:   they can become advocates by bringing to their child's school a new focus on the issue of social isolation including the programs Beyond Differences offers.  School counselors, teachers, and administrators are all likely to be interested in this important and burgeoning crisis of adolescence.

Educators can also play an important role: teachers can and typically are "the wise ones" who brings Beyond Differences’ national awareness days - for example, the popular National No One Eats Alone Day -  to their students along with utilizing Beyond Differences’ teacher’s guides which offer programs and activities to help students become leaders

We now know that social isolation is often the precursor to bullying. Socially isolated students do not have anyone to sit with at lunch, no one to play with at recess, and often find themselves alone at a crucial time for adolescent social development.  According to a 2013 research study on children and social isolation, negative health consequences can be serious and include increased risk of heart disease, sleep disturbances and obesity

Socially isolated students also run higher risks of engaging in truancy, self-harm and community violence

Imagine a middle school with endless social opportunities for every child regardless of how a child looks, what they eat, or their family’s socio-economic status. Imagine one where students always have someone to sit with at lunch. One where no one was left out.  As ambitious as it seems, Beyond Differences is committed to empowering youth to end social isolation

Bring our next national awareness event -- Be The One Day -- to your child’s middle or elementary school on April 22, 2016.  Visit joinbetheone.org and see how exciting this special event can be for your child’s school.  We adults may not have had the benefit of Beyond Differences when we were growing up, but our children do and it’s time to take advantage of these student-led, original, and fun student programs to end social isolation today.