In fact, we special needs parents have a rather unflattering habit of complaining about the thoughtless things people say regarding our kids. There. I said it. And I’ve done my fair share of griping.
I owe the world an apology. I’m sorry for my reckless rants over words that weren’t the most sensitive.
I’d like to shift the discussion onto the ENCOURAGING things people say.
Sure, those gems may come along less often than the thoughtless remarks. But if we look at why they encourage us, perhaps we can become better encouragers ourselves.
My most vulnerable days were when we received the news of our daughter’s diagnosis. Family and friends honestly didn’t know how to respond. But then, I had no idea what they could have said that would have made me feel better.
At the time, everything said to us was intended to encourage, and some of the comments were helpful. Others were less so, but I tried very hard to look past these abrasive comments to the intent behind them. Some days it was easier than others to do this.
But one neighbor gave me the gift of a most excellent response. Over fourteen years later, her healing words still encourage me. I think back to that winter afternoon and it makes me warm all over again.
I had been tidying up picture books from the living room after my daughter had strewn them all over the floor. Quiet tears slid down my cheeks because the new explanation of her odd behavior tied it to issues we couldn’t control. Her need to toss all things vertical into a horizontal position stemmed from sensory issues related to her diagnosis of Rett syndrome. Not that every child with RTT is intolerate of horizontal lines, but they drove her nuts back then. On that afternoon, it felt like our whole world was vertical and we were trying to figure out how to adapt it for Little Miss Horizontal.
There came a gentle knock at the door and I straightened myself up as best I could before opening the door. On the porch stood our neighbor. Our baby girls were a few months apart in age; we were both older professional women who had chosen to stay home to raise these babies. We got together for play dates a few times, but conversation became awkward over time as her little one raced ahead in her development and my daughter’s skills took a backward tumble.
From my tear-stained face, it was obvious something was upsetting me. Our neighbor asked what was wrong and I told her that our daughter had just been diagnosed with Rett syndrome. Her reaction was selfless and genuine and more perfect than she could know.
“I’m sorry,” she said. “I’ve never heard of that. Does it make her hurt?”
The focus, completely on my daughter and her level of comfort, was a fresh perspective that rechanneled my own frightened thinking.
*It wasn’t about me. It was about my little girl.
I had an easy enough time feeling sorry for myself, for my grief and lost dreams and the overwhelming thought of caregiving for the rest of my life. Having someone step in and remind me who the diagnosis was about was a very good and gentle correction.
*It wasn’t about the future, but about here and now.
I was so wrapped up in how we were going to handle the big picture that I lost sight of today.
So many people jumped right to questions about our daughter’s future...her physical and mental potential, her living situation, and, dare I say, her lifespan. Families, especially, tend to think this way, perhaps because they are involved in our lives for the long haul.
It’s kind of overwhelming to think about such a huge picture as a new parent. To be asked these questions is to be reminded of how of just how overwhelmed we are.
*It didn’t pretend to understand the unknown.
My husband and I had never heard of Rett syndrome before our little girl came along; I’d wager than the VAST majority of the population hasn’t either. When this neighbor honestly admitted she didn’t know about it, I felt less alone in my ignorance.
It doesn’t help parents to pretend we know about something we have little knowledge of. Somehow, faking knowledge trivializes the conversation. It adds an element of insincerity. And believe me, parents at this vulnerable stage need sincerity...desperately.
*It was about my child’s comfort.
The fact that this lady expressed concern for my daughter’s pain level was probably the single most comforting thing she could have said.
As a mother, I want my children to live free from pain. My neighbor’s concern identified with that universal, deep-seated anguish parents have when our children hurt.
After all, there is a reason that hunger relief agencies show not just the haunting faces of starving children in their funding advertisements. They are sure to include the face of one or two mothers agonizing over the pain their beloved children must endure. We may not be able to identify with severe starvation, but we most certainly identify with the desperation of these mothers.
That one little question drew my neighbor alongside me in this new and terrifying role, and I suddenly felt less alone.
Yet she didn’t ask it for my benefit. She was genuinely concerned for my daughter. And that shifted my perspective around so I was free to focus on my daughter as well.
You know, my answer was that no, Rett syndrome itself doesn’t cause pain. And that was a HUGE positive that I had overlooked (mind you, there are a number of resulting conditions that can cause tremendous pain, but we weren’t dealing with these yet). Right then, I felt immensely blessed to be able to give that answer.
Admittedly, it’s difficult to know the right words to say when we learn that a friend’s child has been diagnosed with a disability or been seriously injured. But focusing our encouragement on the child and the child’s comfort can go a long, long way in bringing comfort to the parents.
This kind neighbor will never know how great an impact those few words made. Time and time again they have brought me support and new focus. They have helped me consider what I might say...or not, in the event a child is obviously in great pain...and I hope that those words have been soothing to other families as well.
What encouragements have people offered you that you found helpful? What can we learn from these statements? Please let us know, so we can become better encouragers ourselves.