After a recent move, my boys (ages 6 and 5) started at a new school this year where they would have no familiar faces to make them feel at ease. As a parent, I wanted to be a fly on the wall on that first day. Are they making friends? Will they use good manners? Do they remember their numbers and letters?
In addition to the normal first day jitters, I had a whole new set of worries. My kindergartner, Aiden, was born with a rare craniofacial condition called Apert syndrome that is characterized by marked differences in his appearance. His midface is retruded a bit, his fingers and toes are varied shapes and sizes due to having been fused together at birth and separated surgically later, and he proudly wears a zigzag scar from ear to ear that shows where his head was opened up twice to expand his skull to allow his brain to grow. So while I was reassuring my boys that “first grade and kindergarten are going to be awesome!” I admittedly had doubts myself.
In an effort to gently raise awareness and advocate for Aiden, I wrote a letter to Aiden’s classmates and shared it with his teacher. The message is universal – everyone is different. And everyone should be accepted no matter what.
To Aiden’s fellow classmates:
Congratulations on this huge milestone in your lives! Kindergarten is SO much fun and such a huge step. Many of you are leaving your mommies and daddies for the first time ever. You may feel both nervous and excited and that is okay.
My little guy Aiden is starting this journey too. He is most excited about riding the big yellow school bus with his brother, but he is nervous about going to a new school and making new friends.
Can I let you know a little secret? I am his mommy and I am nervous too.
You see, Aiden is a very special boy. Aiden has Apert syndrome.
When I look at him, I see his big bright eyes, his long and luscious eye lashes that would make any woman envious. I see the soft brown freckles sprinkled across his cheeks and nose. I am drawn to his contagious smile. I don’t notice the scar on his head or that his face looks a little different.
But I know you probably will.
I marvel at the hands that have been refined by an amazing surgeon giving him fingers where there once were none. I watch in awe as he twists the cap off a water bottle or cuts a piece of paper into scraps. I see perfectly created little toes that make shoe shopping a week-long challenge. I don’t think his hands are strange or his toes are weird.
But you might think so.
When I hear Aiden talk, I am reminded that doctors and specialists told me he may have hearing loss that would affect his speech. That language may always be a struggle. Needless to say, he has proven them all wrong. When I talk to Aiden I don’t think he’s hard to understand.
But it may be difficult for you to know what he’s saying sometimes.
I don’t mind if you notice these special things about him. Most people do. However I hope that when you’re learning your ABC’s and colors of the rainbow, that you also learn how to accept my little boy. That before you decide not to sit next to him on the bus or share your crayons with him during art, you give him a chance.
He will make you laugh with his little jokes and silly songs. He will be a great friend, always ready to help you hang your backpack or put the blocks away. And my Aiden? He gives the best hugs, hands down.
Get to know him. That’s all I ask. And when you do, you will understand – Aiden is just like you…only different.
Hope you all have a wonderful year!
Love, Aiden’s mommy
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