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Familiar with a bell curve?

April 01, 2017 by cynthia schulz

Lots of kids need braces.  Each of our four spent teen years flashing silver while we plunked down the cash. When it was our daughter Noni's turn, her intellectual disabilities were met by the orthodontist with words I'll never forget: "You'll have to decide if it's worth it."

Call me super sensitive, most moms like me are. Those words, code for "if she's worth it," stung.

Blood boiling and face turning crimson, I snapped back. "Why would you ever think it's worth it to me to put braces on my other kids, but not her? Do you think I love her less?"

For the privilege of giving our pretty girl an even prettier smile, we need more than a technically competent doc. We need an enlightened one.

You'd be surprised what comes out of the mouths of professionals we rely on for help.  Sometimes you need to fire back at them, or fire them.

True stories:

Neurologist: "You're familiar with a bell curve? Your daughter is probably here on the curve," pointing off the curve to nowhere.

Me: "I think we're done here."

Young physical therapist in elementary school: Do you realize your daughter needs help? She needs a LOT of help!"

Me: "I am her mother, and I do not live under a rock."

Adapted sports coach: "I don't think your daughter fits in our baseball program. She isn't able to throw a ball or swing a bat."

Me: (Channeling Gomer Pyle) "Surprise! Surprise! I'm so glad you are having this conversation with me, because I will make sure you never tell another family their child with special needs doesn't fit into a special-needs program. If the next child who wants to play is in a wheelchair and can’t see or hear, take him for a ride down the first-base line and let him taste dirt."

Safety Town teacher: "I suppose you can keep bringing her if you want. Frankly, I don't think she's getting anything out of it."

Me: "That's probably why God gave her to me, not you. See you tomorrow."

When I was a young and more fragile mom, thoughtless remarks like these could reduce me to tears, especially coming from professionals. The voice in our heads can be masterful at planting self-doubts: Do they know better than me what’s best for her? Are they right? Am I in denial?

Over time, though, fighting back tears gives way to fighting back.

The naysaying that parents of children with disabilities endure ultimately can make them strong enough to stand up to doctors, teachers, therapists, coaches, and everybody else who stands in the way of making a good life for a kid we love. 

Professionals, in their wisdom, would do well to tread lightly on our hearts.

April 01, 2017 /cynthia schulz
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