What it's like

It's a beautiful day outside so I announce I'm taking the kids to the park. They hurriedly dig through the shoe basket by the door and stuff their too-fast growing feet into their scuffed up crocs. I remind them crocs are not the best choice in shoes to play at the park but they insist. I relent. Pick your battles, right?

We pile in the car and make the embarrassingly close 2-minute drive to the neighborhood park. Should've made them walk but I'm not feeling it, so we don't. They unload faster than I can unbuckle my seatbelt, excited to let their feet run and their imaginations explore.

Other families are taking advantage of the cool fall afternoon as well - glad to finally get some relief from the 100+ degree Texas (extended) summer. Two boys are climbing the structure to the slide and Ethan and Aiden join them. When they meet face to face I hear one of the boys say not too discreetly, "Hey, look at his face." The boys stare a bit then continue to play.

A  little girl, about 3, is met by Aiden at the bottom of the slide. She stares and runs crying to her mother, who says nothing.

Another family approaches and as the kids catch a glimpse of my sweet boy, the older child points. The father swats his hand down. The mother whispers (loud enough for all to hear) "Ssshhh. Just ignore him."

While the above scenario didn't actually happen, we have experienced EACH and EVERY one of those reactions while out in public. This is what it's like on a daily basis.

Can you imagine just how much this hurts my heart? I am usually able to keep a brave face and sometimes even approach the kids or adults to intervene. "My boy is so much fun. His name is Aiden and he'd love to play". It diffuses the situation most of the time. But still. It makes my heart ache. For Aiden.

I've taught him to respond to comments with a simple "God made me this way." or "Hi, I'm Aiden." He does a great job and doesn't seem too effected. Yet. He has such an amazing spirit - always smiling and loving life. I surely don't want a few snide remarks about his appearance to change that. I pray it doesn't.

September is Craniofacial Acceptance Month. If there is a message I'd like to get out during this important time of awareness, it is this:

Parents, talk to your kids at an early age about how everyone is unique - no two people are alike - no two families are alike. Prepare them for seeing individuals with special needs or physical differences. Talk about wheel chairs, leg braces and missing limbs. Not only will you probably save yourself some embarrassment should they see someone with a difference, you will also be sending an important message: it's okay to be different.

Teach your children that they don't have to play with a child with a physical difference, and certainly not just because they are different. But teach them to be respectful in any regard. No name calling, finger pointing or other rude behavior should be acceptable. And if it happens, by all means, don't ignore it. That is liable to get mama bear headed in their direction to do a little bit of the parenting that you apparently weren't capable of.

And adults, for the love of God, use your common sense. Be, oh I don't know...a grown up. Don't point at my child or nudge your friend to look.at.that.boy. You'd think it doesn't happen but it does. All the time. Kids don't get a free pass for being a bully so you can be sure that when an adult shows their ignorance by acting like a child I will call you out. I'll try to be nice. But if you're an ass, nice-Taryn might not show up.

Talk to me. Ask me how old he is or tell me he's cute - even if it's just to start a conversation. I enjoy talking about my kids and look forward to opportunities to talk about Aiden's condition with those who don't know. I honestly believe that spreading awareness encourages acceptance. Don't assume I'm sad about having "a child like him" or that I will be embarrassed if you ask me a question. Nothing could be further from the truth. And I bet most parents feel the same way.

Finally, I can't express enough how a simple smile can speak volumes. If I see you looking at my son, and you smile? It puts me at ease. I know you might be curious. Believe me, I get it. If you don't know what to say, just smile. It's that easy.

Children's Craniofacial Association (CCA) works tirelessly throughout the year to remind people that "Beyond the face is a heart". Throughout the month of September families across the United States are spreading awareness about craniofacial conditions like Aiden's. Take this opportunity to have a discussion with your children and also to remind yourself just how important it is to treat people kindly.

If you are looking for some ways to spark that conversation, or to learn more about craniofacial conditions in general, the below links might be helpful.

  • READ All About Aiden - a book I made to read to the kids in Aiden's class at school. Great for kids ages 3-6.
  • READ Wonder, by RJ Palacio - a book with an insightful perspective of what it really feels like to not only have an extreme facial difference but to also be the parent, sibling or friend of someone who looks different. Excellent read for older kids and adults. CCA is offering the book for $12 (shipping included). Contact Annie Reeves at CCA's office to order your copy: 1-800-535-3643.
  • VISIT www.choosekind.tumblr.com to make your "Choose Kind" pledge and to access anti-bullying resources and download the educator guide.
  • VISIT Children's Craniofacial Association - CCA is a nonprofit organization that provides emotional and financial support for families affected by facial differences. You can also find detailed information about numerous craniofacial conditions.
  • LIKE More Skees Please on Facebook to keep up with our family and continue to learn just how normal our life is despite having a child with a complex medical condition.
  • SHARE this blog post with your friends and family members by clicking "like" or using one of the share buttons below.
How will YOU help me spread awareness?


  1. This is a great post! And he IS cute. Love that smile in the picture.

  2. Kerry posted this on her page and I am so glad I read it! You have such a knack for words (like Kerry). It is amazing how ignorant people can be. I hope more people read this and realize the 'proper' way to handle certain situations. I think Aiden is so stinking cute, and every picture of him smiling melts my heart!

  3. Thank you so much for visiting my blog and commenting. This is such a wonderful post. You might like to link it to Love That Max linky party - a blog by a mom with a child who has CP: http://www.lovethatmax.com/2012/08/special-needs-blogger-weekend-link-up_31.html Thank you for sharing so much wonderful information. My daughter has special needs and I know that these precious children have wonderful sweet souls and offer us so much.

  4. I love this post! Perfectly well said.

  5. Great post. I especially appreciate your encouragement to ask questions and interact.

  6. Your children are beautiful! We have faced the same type of reaction in public and not just from children. Thank you for spreading awareness! Enjoy your little angels and good luck with pregnancy.

  7. Thanks for sharing such a thoughtful post. As a mother, I want to teach my children to be kind and respectful, but because they are so little its hard to know what to do. Your words are very helpful. THANK YOU!

    P.S. Your little man is truly adorable. He is radiating joy in the photos!!!

  8. Great post Taryn! Sharing now.

  9. Great post, Taryn! I've shared it on my facebook page!

  10. Thanks for sharing! This is a good reminder to not only talk to our kids about embracing the wonderful differences in the world, but to walk the walk as well.

  11. Great post! I hope I'm teaching my children all of those important things! Thanks for sharing these tips. And how could you not smile at your sweet boy?

  12. I cried when reading the beginning of this. People have told us that we are going to have to grow a tough skin and get ready to hear these things. Our Joey is going on 3 months old and is the happiest baby in the world and I hope that he continues to be this happy throughout his whole life. He is our sweet beautiful baby boy and I dont know if I'm ready to hear those things. I don't know if I will be able to keep it together.
    I know we have a lot to learn, still, about Apert Syndrome, and I hope that our growing education of it will help me and my husband develope that "tough skin" we were told to grow.
    I know that Joey is still really young and there is a big age gap, but I would love for Joey and Aiden to get to know one another in the future.
    Our family is going to attend a CCA picnic this saturday with another family who has a child with Apert Syndrome. I am looking forward to being as involved with the cause as I can be.
    Give Aiden a big hug from our family!

  13. This really touched my heart, Taryn. Thank you for being an advocate for your son. I will be sharing this later this afternoon to spread the word for Craniofacial Awareness month.

    So pleased your shared your wisdom and heart at the Sunday Parenting Party.

  14. Shared, both to spread awareness and because I love the realness with which you write about, well, "what it's like". I think you're doing a wonderful job, and if it makes you feel better, after I first discovered your blog through the blog group, I talked to Ava straightaway about differences. Sure, she's young (she's 2), but when we ran into someone in a wheelchair, Ava all but tried to climb into their lap. Thank you for being so inspiring!

  15. Hi Taryn! I was born with craniofacial problems and went through the same playground stuff Aiden is going through, but without an advocate like you. I'm 41 years old now and still distrust strangers because of the way kids would blurt out "what's wrong with you?" rather than, "hi!" You just keep it up, and make sure Aiden knows that other kids aren't trying to be mean...it's just that people sometimes say dumb things when they see something they're curious about.

    (BTW, this isn't supposed to be a sob story--I got an artificial eye and reconstruction of my nose, and some people have actually called me--gasp--pretty. I just felt compelled to write since your situation hits home with me. I'm looking forward to reading your blog!)

  16. Wow! Thank you everyone for the sweet comments. I'm so happy to have shared this and encouraged some of you to talk about differences with others. Every little bit helps!

    The funny thing is, ALL kids experience teasing for one reason or another throughout their lives so fostering an environment of acceptance will help not only kiddos with physical differences but everyone!

    Thank you for helping me raise awareness!

  17. Hi taryn I am a mother of a child with apert syndrome also. She was diagnosed sinced her her birth recently. I just want to ask how many surgery does your child aiden undergone until he was became ok..Does this kind of syndrome is eligible for SSI..Appreciate your reply. Thanks a lot