5 Ways to Avoid Diagnosis Faux Pas


1. Say “Congratulations!”

The number one thing every parent needs to hear when a child is born is “Congratulations,” “Job well done,” “She is beautiful,” “Isn’t he going to melt hearts,” the list goes on! If you’re struggling with a diagnosis post-birth, all you want to hear is your child normalized, because the medical professionals might be doing everything but!

Reassurance that your child is as perfect as the one in the next room is not too much to ask for. If a friend of yours has a prenatal diagnosis, the above does not change: “Congratulations on your pregnancy” (after all, this person may have been trying for years), “Well done,” “No matter the outcome, she will be perfect,” “He will change this world no matter the diagnosis”… (However, this is not the time to bring out stories of every person with a diagnosis you’ve ever met. Trust me, it’s not.)

2. Share emotion.

It’s OK not to have the answers, and it’s OK to be overcome by emotion. This is an emotional time. When I rang one of my best friends the day of Eden’s diagnosis, she dropped everything, drove one and a half hours, and sat and cried when I cried. When I asked endless questions, she shrugged her shoulders. She didn’t have the answers; she didn’t try to answer them. She just cried when I cried. (She also brought alcohol, and if any time in my life called for a stiff drink, that was it.)

3. Say “You can do this.”

In a world where there’s so much uncertainty, reassurance goes a long way. And at a time when I was struggling to finish a sentence, telling your nearest and dearest was an impossible task. Everyone was shocked. For some, there was a stunned silence, but for one, there was no hesitation:

“You can do this. Out of everyone I know, you can do this. I can’t imagine what you’re going through, but I know one thing: you can do this.”

I knew I could do this, too, but to hear someone say it, have the utmost belief that I could actually do this, reassured me for months to come. As doubt would try and settle in, I would hear her voice: “You can do this. Out of everyone, you can do this.”

4. Say, “Excuse my ignorance.”

This saying covers a multitude of faux pas, along with, “Correct me if I’m wrong” and “I’m not familiar with your situation/child’s diagnosis.” Using this as a precursor means you’re willing to be educated, you’re OK with me correcting you, and you’re interested in our life. You can pretty much ask anything after this (except “How long will she live for?”…) without getting a face palm!

5. Pay attention to your body language.

Your body language provides a wealth of information! If you look at my child as you gasp and shake your head, I’m immediately going to think negatively. If you look and smile at us or even wave in response to Eden’s wave hello, I can breathe easy, knowing there’s no judgment while feeling your inclusion for my daughter.

This often leads to conversations in the checkout line and at the park. But I’m not a hugely chatty person, so sometimes a smile is where it’s left and that’s OK, too.

Recently, a mother asked me how she should interact with some parents of a child with special needs; they visit the same park as her. My response is, “The same as you would interact with anyone else.” Normally conversations start around weather, children’s interesting behaviors, park facilities, etc. and it’s no different with us. If you’re looking to interact with someone purely because their child has special needs, maybe that’s the wrong motive?

During conversation, I generally acknowledge Down syndrome at some point; this means I’m ready to go “there.” If I don’t bring it up, then guess what? I’m not! Maybe I’ve had a bad day; they happen. Maybe I’ve had some bad medical news… again, that happens! Maybe I’m doing all I can to hold my sh*t together; it happens. Maybe I’ve forgotten my child has a diagnosis. (True story, it happened!)

If your interaction with me revolves around my child’s diagnosis, rethink it, ’cause we have far more to offer than that. It’s such a small part of us. Just as your family is rich and diverse, talented and fun, so is mine. Eden is Eden and Down syndrome is only one part of her. Going to the park, playing on slides, reading books and eating sand are a few of her favorite things; eating veggies, being tidy and sitting still are a few of her least favorite things. I bet she has more in common with your kids than you think!

To sum it all up: see past the diagnosis; talk as if it doesn’t exist; when invited, talk about it; but most of all, see the ability!

A longer version of this post originally appeared on Perfect By Design X2.

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