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Friday, 30 October 2009
There are certain words we absolutely do not use in our house. The "s" word (stupid). The "d" word (dumb). And don't even get me started on the "r" word.

Life with a special needs child means watching what we say, protecting her from seemingly harmless words that could forever impact her and practicing what we preach. After all, everyone is watching. It isn't the average parenting situation. We answer to special education teachers, paras, a speech specialist, a hearing specialist, a vision specialist, a PT, an OT, an ENT, a neurologist and more.

We constantly hear, "Have you tried this? Have you tried that?"

Yes. We've tried everything! Anything to make her better!

Choosing Halloween costumes is no different.

Our three-year-old "typical" child (because now, the "n" word is a no-no) decided on a Wizard of Oz theme. Initially, she wanted to be the Cowardly Lion. But once she saw the Dorothy costume meant for her older sister, she changed her mind.

To Jai, it doesn't matter. Not yet. To Jordy, the feisty "typical" three-year-old, it does. So our game plan changed. But that meant we would have to revamp Jai's costume.

"I will be Dorothy, Jai will be the Scarecrow, Daddy will be the Tin Man and Mommy will be the Wicked Witch of the West," Jordy proclaimed. After I recovered from being called a witch, I started to think about it.

What a cute Scarecrow Jai would make! It would be okay if she were floppy in her costume, tripping all over the place. It just made sense. And then, I started to overanalyze.

?What would everyone think if we dressed Jai as the Scarecrow?!' I thought. ?His whole thing is, ?If I only had a brain,' and Jai has brain damage from a stroke!'

Doubt set in.

Concern set in.

Paranoid thoughts of how that would look set in.

When I talked to my mother about it, she agreed Jai would make a great Scarecrow. Once I shared my concerns with her, she said, "I would have never thought of that!"

And she meant it. It was no criticism like, "Jaime, you're over-thinking it." It was, "You're right. We can't do that."

Why? Because the whole world is watching. When you are a parent of a special needs child, the world is watching. Or at least it feels that way.

For Jai, the Cowardly Lion it is. And that makes even more sense. The girl needs some courage. She needs to fight off her disability, have some nerve and stand up in this world.

Courage. Not the "s" word. Not the "d" word. Definitely not the "r" word. Just courage.

If the world were a Halloween Express and we could all choose a costume, what would it be? Would it summarize who we are or who we want to be? I choose the latter of the two. I would select the "Amazing-Mom-Juggling-Work-And-Family" costume. Maybe not who I am but who I strive to be.

Words. Costumes. Who knows if either is important! If the world is really watching our special needs child, they will be impressed. Because at the end of the day, Jai will show up at your door and say "trick or treat" despite her disability, despite the fact that she has parts of her brain missing, despite a possible lifetime of hurdles to overcome. She'll show up. She'll play the game. She'll find hope, strength and courage. Just like the Cowardly Lion, she'll say, "Put ?em up! Put ?em up!" And she'll be the better for it.
POSTED BY: J. Simpson AT 10:29 pm   |  Permalink   |  E-mail this
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