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Tuesday, March 15, 2011

'Can Do' Attitude

I've been thinking lately about developmental delays, mainly what parents of *typical* kids might wonder it's like for us SNPs who have delayed children.

For years I've heard moms talk about the comparisons other moms make between their kids and the questions they get asked like: "Is she sitting up yet?" "Does he crawl?" For some reason those are seemingly appropriate questions to ask another mom for some. Most of the moms I know who've relayed these experiences to me have taken offense to such comments, like their child is being judged, and that the asking mom seems to get some kind of satisfaction out of the fact that her child may be more advanced.

I get asked these questions too - mostly by people that may not see or know Ella personally - and I know they aren't asking in order to compare my child with theirs. I think people are simply curious about Ella's progress based on her circumstance, and that's okay.

Do I wish Ella could sit up by herself at nearly age three? Yes. Would it be nice if she could actually move herself around like she so desperately seems to want to? Of course. But I'm not upset about it. I gave up comparing Ella to typical kids and developmental charts a long time ago. But it was a process.

In the beginning you have hope. Sure the doctors will tell you that she will be severely delayed, but what do they know? Do they have a crystal ball? You still believe that your child might be the exception. All infants don't do much so it doesn't seem any different at first.

But as time goes by and those first milestones aren't reached, reality begins to set in. And as even more time passes, the gap continues to widen more and more. But in my mind Ella can't be compared to any other child, delayed or not. She is unique. She has had her own journey filled with numerous medical issues and hospital stays. She's Ella, and we're living on Ella-time. I just try and focus on what Ella IS and what she CAN DO and what makes her extra special.

Now that doesn't mean that we just give up trying. Quite the contrary. Ella has a rigorous therapy schedule that includes PT, OT and Speech each twice a week (when she's not in the hospital). I will give her every opportunity to excel where she can but that's really all I can do.

So I'm not embarassed about where she is developmentally but what IS uncomfortable are the looks of pity when other people notice how delayed she is. They assume I'm upset about it and that's what makes me feel bad. I don't expect Ella to be like other children, I just expect her to be Ella.

2 comments:

  1. I just had a similar conversation yesterday with a new friend. She asked if it was hard watching Emma not do things. My quick response was that it was pure joy watching Emma DO things, but something about the situation made me think a little differently about it. We have a mutual friend whose son does not have any diagnosis at the moment, but his development is starting to concern them and they are sitting on pins and needles waiting to see if he'll "catch up" sometime soon, because they want to know whether or not he's "normal." I sometimes think their pain is a lot worse than mine. When I was pregnant, we were told she might not survive. And when Emma was born, we were told she "might never (fill in the blank)" ... and that sucked. A lot. But it was kind of like the band-aid being ripped off quickly, you know? Instead of the slow agony of watching your child, who you expect to be "normal", fall farther and farther behind and not know why?

    I often think we are blessed that our expectations were changed from the beginning, you know? Like, it gives us the grace to celebrate openly what our little miracles CAN do.

    I love your blog!

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  2. I hear you about the view from outside our life. I think your first commenter is SO right in her response to others: we DO spend the time looking at what our little miracles CAN DO. And it's just what other Moms and Dads do in their own homes- except each "skill" in our little miracles is "a VICTORY" not just a milestone passed subtly on the way to the next. I like our view just fine. And Yay to Ella Grace for her strength and endurance to strive for what she has achieved and the life she continues to live- and yay you for being her greatest cheerleader.

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