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Words Matter

by Jessica M |

October is National Bullying Prevention Month, and we're showing support by sharing stories on our blog. We wanted to highlight the ways that bullying can be experienced verbally, not just physically, and draw attention to the particular difficulties faced by those with medical needs. AliceAnn wrote a blog feature for us several months ago about her son, Jameson, who has Pfeiffer syndrome. Jameson is from San Antonio, Texas, and he loves gardening, riding his bike, listening to music, and spending time outside!  For Bullying Prevention Month, AliceAnn wrote the following about the importance of kindness and understanding that words matter.

My son is six.  Thankfully, we have never had to deal with a physical altercation from another kid who felt the need to bully him.  I imagine, and expect, the tide will change as he gets older.  I absolutely dread the day, and pray it will never come.  To date, we have only had to deal with stares and comments.

My son was born with a craniofacial syndrome, Pfeiffer syndrome.  The bone growth and structure in his face and skull are affected, and very visible to everyone he meets.  The negative reactions and phrases are usually in the ballpark of, ‘What’s wrong with him?’, ‘Ew, he’s scary’, ‘He looks like a monster!’, or ‘His eyes are freaking me out’. 

The majority of these reactions usually come from a place of not knowing what Pfeiffer syndrome is, or simply never having met a child with a craniofacial syndrome or facial difference.  Once we introduce Jameson and talk about his syndrome most people are accepting and realize he’s not scary, or a monster at all.

But, that doesn’t mean words now don’t matter.  I recently witnessed their effect just a few weeks ago.

About four months ago Jameson underwent a major surgery that completely transformed his face.  Pfeiffer syndrome causes mid-face retrusion, meaning the bones in the mid-face don’t grow at the same rate as the rest of the face.  The surgery he had moved his cheek bones forward over an inch.  He looks like a completely different person. 

One afternoon Jameson opened his tablet and a picture of me and him before this surgery was on the screen.  He looked up and said, ‘Eww, gross.’.  I looked at him puzzled and asked him what he meant.  He proceeded to point to his face and tell me that his old face was scary and gross, and he didn’t like it.  I nearly crumbled to the floor (after I told him that I absolutely loved his old face and in no way was it ever scary or gross).

This is why words do matter.  Hearing those same phrases from strangers over the years planted a seed.  His little six-year-old self had let that seed grow inside.  No matter how much we made a point to squash the stares and comments it still stuck with him and grew.

So, please fill your young child’s mind and heart with the excitement to seek out and learn differences in others.  Teach your child that different is not bad, or gross, or scary, or weird.  Then, when they meet a special kid like mine they won’t be afraid -- and maybe, just maybe -- they’ll run up to him with a smile and say Hi! 

Teach children young that different is awesome and amazing!  Find ways to encourage positive reactions to the littlest of things when they’re young; foods, animals, colors, sounds.  And maybe by the time they’re older and they see a physical difference in someone with medical or special needs their reaction won’t be one that is hurtful; whether they know better or not.


Do you know someone with an Abilitee Story, or would you like to share your own? We'd love to hear it! Send us an email at hello@abiliteeadaptivewear.com to get started.

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