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.
