Wouldn’t it be great if we had some magical contraption that would shrink our troubles? We could put our mortgage or tuition bills in there…instant relief! Or perhaps we could lure a bothersome boss or meddling in-law into our minimizing machine. Boom! Those  folks would seem suddenly more manageable.

It’s fun to think about, isn’t it?

The reality? Life just doesn’t work that way for any of us. Sometimes our worries become Goliath-sized, rendering us incapable of the felling the giant. I’ve often seen this kind of despair in parents with children who have special needs. (and I’ve felt it myself!) New diagnoses, concerns about academic and social development, regression of skills and stigmatizing behavior elicit fear for parents, causing grief and anxiety.

Well-meaning friends and family members try to soothe by taking on the role of The Minimizer. In an effort to make the parent feel hopeful and comfortable, Minimizers use phrases like this:

• Oh, don’t worry about that behavior. ALL kids do that!
• His father was just the same way, and HE turned out just fine.
• You’re making too much of this! It will be fine…
• She’ll grow out of it.
• Oh…my nephew had that. It’s no big deal!

Sound familiar? I know I’ve said phrases like that, hoping that I would buoy the listener’s spirit and allay the fears. In retrospect, I wish I hadn’t tried to put a band-aid on the gaping wound before me. The band-aid made ME feel better, but I’m quite certain my words weren’t edifying, but quite possibly frustrating, instead.

I learned this the hard way. When our daughter was critically ill and recovering from a stroke, people would, with the best of intentions, tell us, “She looks great! Completely normal!” My husband and I would often stare at each other, wondering why we weren’t seeing the “normalcy” as we watched Annie stumble and struggle, her bald head still swollen from surgery. As the months and years went by I often felt frustrated when I heard, “You’re just worrying too much…all kids do that!”

Parents raising kids with disabilities know that “all kids” DON’T “do that.” Even if an exhibited behavior is “typical,” the accompanying  difficulties can remind parents their circumstances are anything but typical. And that hurts.

So what can we do?

• Recognize that we  are in a position to offer comfort and support. Simply reflecting, “This is so hard” or “I’m sorry he’s having such a rough time” can affirm parents’ feelings, letting them know that you are sharing their sorrow.
• Resist the urge to “make it better.” We all desperately want to extinguish hurt in these situations. However, we can unknowingly offer false hope with our words. One mom recently told me that a well-meaning friend, upon learning her son’s diagnosis, said, “Oh, that kind of cancer is no big deal! He’ll get over it quick!” The speaker meant NO harm, of course! However, the mom felt dismissed and silenced.
• Share success with caution. When our daughter was ill, I was desperate for “happy ending ” stories related to her rare disease, and thrilled when the speech pathologist told me that she had seen kids learn to talk again after a stroke. However, she was careful with her words, reminding me that every child is different, and that recovery from brain injury is unpredictable. This helped me to form realistic (and hopeful!) expectations
•  Affirm the parents. A father recently asked me how many second opinions he should seek regarding his daughter’s diagnosis. When I asked why, he said that many folks had insisted he see THEIR doctor or pursue the therapy that was guaranteed to cure. This shook his confidence, even though he trusted the current set of doctors. This dad needed to be affirmed: “It sounds like  you’re making great choices, and working with doctors  you trust.”

Wishing you communication that maximizes your relationships!
~Katie