What it's like
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.
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.
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.
- WATCH Aiden's Journey: Awareness and Hope - a short film documentary that provides a glimpse into our life. You can also view photos, join the discussion on Facebook and learn how to obtain a copy of the full DVD by visiting: www.aidensjourneythefilm.com
- 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?