what parents of disabled children wish the rest of us knew

My friend Katy, who blogs at Bird on the Street, says she is not Superwoman. I disagree with that assessment- and so will you, once I tell you that Katy is the mother of a three-year-old with cerebral palsy, and is also 32 weeks pregnant. WITH TWINS. (Katy also says she is “living proof that God has sense of humor,” and that much is undeniably true.)

But Katy’s blog is not about “oh poor me, I have so much to handle.” On the contrary, she’s witty, and inspiring, and smart, and challenging- and she’s written something that is required reading for any parent.  “All I Ask” is Katy’s open letter to anyone who’s ever asked  the parent of a disabled child “is there anything I can do to help?” Here are a few of Katy’s suggestions: 

Try to look people with disabilities in the eye.
If you meet a child with a disability, speak directly to them. A parent or guardian will let you know if they aren’t capable of understanding or responding.
Don’t assume that a person with a disability has a poor quality of life and don’t teach that misconception to your children.
Don’t assume I wish my child was different. Don’t assume he’s a burden.
Teach your children that different is OK and be sure to include not just those of a different color, but those who move around differently, talk or hear differently, and even those whose bodies are different.
If your child asks about someone in a wheelchair, don’t tell them to “shush.”
And teach them that looking is OK if it’s done with a smile.

There’s more, much more, and you should go read Katy’s whole post for yourself. What blows me away about what Katy wrote is that I thought I was doing a pretty good job, shushing my children when they asked about wheelchairs, telling them it was impolite to stare. And here I was doing exactly the wrong thing. I’ve given my children the appropriate platitudes about how you can’t tell what someone’s like inside by how they look outside, that God makes some people’s brains differently… but I’ve never taught them to engage openly, to ask questions, to SMILE, for heaven’s sake. I’ve taught them to politely avert their eyes. And starting today I’m going to do things differently.

Don’t worry too much about how I’m handing things and ask yourself if you’re doing enough to make this world a safe place for my child and all people with a disability. Do you live like the disabled are invisible? Are you inadvertently teaching your children intolerance because of your own baggage? In your desire to be “polite” have you crossed over into “rude?” ….God didn’t give me a special child to raise–he gave all of us the opportunity to be the best or the worst version of ourselves. I’m doing my part. All I ask is that you do yours.

Thank you, Katy. You have made me a better version of myself.