what I want you to know: having a child with a disability

What I Want You to Know is a series of reader submissions.  It is an attempt to allow people to tell their personal stories, in the hopes of bringing greater compassion to the unique issues each of us face. If you would like to submit a story to this series, click here.  Today’s post is by Katy from Bird on the Street .

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If you read my blog and don’t have a child with a disability, you might have, at some point, wondered if there was something you could do for me. Or for other parents like me, who not only raise children, but double as nurses, therapists, teachers, and advocates. Personally, I have an incredibly hard time asking for help or even accepting help that shows up on my doorstep. I feel weak, rude, or like I’m taking resources away from someone who needs them more than I do.

That doesn’t mean that I don’t want something from others, though.  Because I do, and today I’m going to answer that age-old platitude:  “if there’s anything I can do.”

So here it is:
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.
When a person with a life-long disability dies, don’t utter the phrase, “it was probably for the best.”
Don’t waste time on pity–nobody wants it.
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.
If you find a child or parent or adult who is open about disability, use them and get educated.
If you don’t know about something, ask when appropriate or Google It!
Ban the words “retard” and “retarded” from your home. Even in jest, they hurt people.
If medical stuff freaks you out, imagine being a first-time mom feeding your baby through a tube, and remember that no one likes hospitals or medical equipment–some of us just don’t have a choice.
I you are interested in volunteering, do a stint with people who walk, talk, or even breathe differently than you do. Familiarity will make acceptance easier.

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?” Do you make assumptions about things that you know nothing about?

I will take care of my child. I will love and nurture him. I will teach him. I will give him every advantage I can afford, so that he might one day be the person he wants to be. I ask that you help make this a safe world for him–a world where he can be who he is without apology, a world where difference isn’t a crime. 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.

child sitting in rocking char



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