Expectations and Pop-Up Heartache

Recently, one of my fellow Rockin’ Moms wrote a blog post that really touched me. Click here to read it, and then come back….

Are you finished reading it? If you’re the parent of a child with special needs, I’m guessing it touched you. It seemed to make quite an impact on a lot of moms I know, and I know that it touched me. I read a lot of blog posts by moms, and many are good…but this one particularly caught me. And if you’re not the parent of a child with special needs, I suspect you may be touched as well, because I’m betting many mothers can relate to this feeling of “pop-up heartache.”

When I read the title of the blog post—”The Continuous Cycle of Grief of Special Needs Parents”—I didn’t really expect to connect much with it. Because “continuous cycle of grief” brings to my mind a parent who is mired in sadness and dwells on it every day. But then I read the post and realized that wasn’t what  my fellow Rockin’ Mom meant at all. And in fact, her phrase “pop-up heartache” is one I can well identify with.

I had my own pop-up heartache on Sunday. It doesn’t happen very often, but every so often it does, and I find myself wishing I could just sit down and cry. But I was in a children’s science museum, so sitting down and crying wasn’t really an option. Instead, I just watched as time after time, children excluded Sam from playing with them because he wasn’t playing the “right way,” in their minds.

And I get it—I really do. When he was younger and looked very much like a baby, people assumed he was a baby, and their expectations of him reflected that. But lately, he’s (finally!) put on a few pounds, and he’s beginning to look more like a little boy and less like a baby. And accordingly, children are expecting him to play like a little boy of his age, whereas the reality is that his play is currently that of a young toddler—not so much purposeful play as build-it-up-and-knock-it-down play. That doesn’t really amuse four- and five-year-olds who are trying to build a castle or a racetrack for imaginative play.

So I kept trying to seek out quiet corners of the museum where Sam could play in Sam’s way of playing, not bothering anyone else but simply enjoying himself. But time after time,  other children would come up and want to enjoy the exhibit too—but in a manner different from how Sam was playing. And they’d get frustrated when Sam would remove the roof from their castle or accidentally knock down their meticulously built racetrack in his exuberance. And so we would move on.

And yes, I know these are opportunities for me to work with Sam on age-appropriate play so that he learns these things. But there are times when I just don’t have the emotional energy to turn it into a learning experience for Sam and the other children around him. Because inevitably, I’m peppered with questions from the other kids about “Why doesn’t he talk?” and “Can’t he say any words?” And that’s when heartache pops up….

So I took him outside to play in the outdoor area, which has a manmade waterfall and stream that kids can dam to watch how water flow and damming works. Sam loved watching the kids—he was in his glory. And he was particularly fascinated by watching the kids cross the shallow “stream” on a series of big stepping stones. So I put on my big-girl panties and decided to turn it into a teaching moment: I’d teach my sweet boy how to cross those stepping stones, just like the other kids.

Except he didn’t want to learn to cross them. He wanted to step in the water, which is discouraged in that area. There are “No wading” signs everywhere. So over and over again, I carefully held him under the arms and guided him over the water parts, onto each step, as I caught glimpses of other parents watching us.

“Are you looking because he’s adorable and you’re interested in what I’m teaching him, or are you staring because you’re glad it’s not your child throwing a fit about not being allowed to wade in the No Wading area?” I wondered. But I said nothing and just kept working with him.

After crossing, he’d run happily up the grass hill and climb into a little hole in a marble sculpture, which makes the perfect sitting place for kids. Except every time, two other kids would come up and announce, “We’re playing here.” I commented that they were certainly welcome to share with Sam, and they just stared at me…and Sam looked at them and then climbed down, much to my chagrin. (I wanted to make the sharing point, but clearly Sam wasn’t in the mood.)

And then one time through, they were already in the hole, and Sam climbed up and sat next to them. I was pleased with this development, but the other children clearly weren’t. Pop-up heartache. 

We left when our parking expired after two hours, and although I usually love this museum, I wasn’t sorry to leave. I’d had enough pop-up heartache for one day. I felt wrung out and exhausted, all from simply trying to keep a smile on my face and a positive attitude, instead of sitting down in the middle of a museum and letting the tears fall onto my son’s soft, silky hair.

My fellow Rockin’ Mom was right: These moments are so difficult precisely because the love I have for Sam is so deep.

Who cares if he does things a little differently than most?
Who cares if he does things a little differently than most?

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