At 26 gestational weeks, after an amniocentesis and genetic testing, he was diagnosed with Diastrophic Dysplasia, a rare type of dwarfism.

Now 8 years old, our son Kai is happy, healthy, and enjoying life.

The purpose of this blog is to lend support and encouragement to others in similar situations and to share the tremendous experiences we've had and will continue to have as we raise our little, little boy.

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Sunday, January 18, 2015

What's Wrong With That Boy?

What’s Wrong With That Boy?
Advice for Parents Everyone

The only normal people are the ones you don’t know very well
–Alfred Adler

Kai has Diastrophic Dysplasia, a rare type of dwarfism. He wears orthotic braces on his feet and can’t walk without the aid of his walker. He’s six years old but stands 25 inches tall (the average six year old stands 42 inches tall). Kai gets a lot of attention when we go out in public. This is partly because he treats the world like his own personal racetrack; zooming, skidding, crisscrossing, and racing around at top speed with his walker. But he gets attention for another simple reason: He’s different. Children are especially vocal about noticing Kai's physical differences. And after several years of observing parents' reactions to their childrens' outbursts over Kai, I’ve found that most parents, although well-intentioned, could do better in helping their children understand some things about people who look different.

  1. First and foremost, don’t shush your child. Trust me, I get it. Your kid blurted something out, you’re embarrassed and want to melt into the floor, and you really hope that I didn’t hear what he said. It’s an uncomfortable situation; I've been there, too. But shushing your child isn’t the right course of action. It teaches him that there’s something wrong with or bad about noticing and asking questions about someone who is different; it perpetuates the fear/aversion/social stigmas of those who are disabled or different. 

  1. Try, try, try to NOT be embarrassed about what your child said or asked, and do address the question/comment she expressed. Try really hard on this one, it’s important! Take a breath if you need to, then answer her in the same way you would any other question. And since you didn’t shush her, you don’t have to lower your voice to answer, either. Just use the same conversational tone you normally would—again reinforcing the notion that there is nothing wrong with being different or asking questions about someone who is different. And please do make sure you emphasize that point: that there is nothing wrong with "that boy." 


  1. Do say hi (I guess this one is optional). Most of the time Kai and I are not in a hurry and would love to chat. This experience can do a lot of good for both you and your child—and us! I would rather have you let me answer your child’s question or respond to his comment, than have you shush and him and walk away. We aren’t afraid to answer any question you or your child might ask. We love making new friends, even if it’s only for a few minutes.


2 comments:

Cassi @ Stop And Smell The Roses said...

I sure love you and "that boy." ;) And the rest of 'em too. Wish we could get together! Like, yesterday!

Miss you, friend.

Kerri said...

Loved this post, and agree completely!!! Thanks for sharing!