Responding to Differences

I'm sick enough with the flu today that DH is working from home and taking care of the kids. I've found myself lying in bed unconsciously doing labor-management moves to manage the body aches. Though I'm feeling slightly better this afternoon than I was this morning, I'm eager to get back to bed.

It's a good thing I already had a post written and saved as a draft for today:

I discovered Whitterer on Autism a few months ago, and it has become one of my favorite blogs.

McEwen gives a valuable window into life as a parent of autistic children. She communicates an amazing combination of being challeged, managing to soar rather than just cope, and finding almost a sense of magic in it all.

Her accounts of the amazing hard work it is for her son to teach his hands to obey him, the process of introducing a new food ("Seven months to acquire two new foods and a blink of an eye to lose them again"), and her unflappability at her child's public reaction to the smell of fish are well-worth the read.

Andrea and Special Needs Mama have been talking about the things people say to parents of "different" kids. Moreena wrote a memorable post about the response of another mom at the park, too.

It's hard to know the right things to say, the right way to look, and how to respond when confronted with the unusual or unexpected. You know that pity is probably the last person wants or needs. They may long to just be treated normally, or it may ring hollow to them if it seems someone is ignoring an obvious disability.

Something that may be the right thing to do with one person, such as offering to help when it's obvious they're struggling with something, may be the wrong thing to do with another.

Even with Baby E's issues, I have a less-than-favorite phrase that it seems almost everyone says.

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Most people, when they realize how severe Baby E's allergies are and how much and how drastically it limits changes our life, will say some variation on the same thing: "I could never do that."

It's not true, of course. Most people will do what they have to do. We figure out how to manage the hand we're dealt; we simply must. If we have no other options, we can do what we once would have thought was impossible.

I usually end up quoting Corrie Ten Boom: "God doesn't give us the ticket until we need to get on the train." He usually gives us the ability to manage, just barely, only what we must: no more and no less.

Once in a great while, the statement may be an expression of admiration for my ability to handle things, or an attempt to understand the difficulty of my life. But usually it's not.

In many cases it's a distancing of themselves; a refusal to try to imagine themselves in a situation that seems too difficult to think about.

In other situations it's a subtle suggestion that maybe we are overreacting; that such excessive alteration of our lifestyle really is more than they would think necessary in our situation.

At other times, and probably most commonly, it's a segue into talking about themselves: "I could never handle that. It's hard enough for me to deal with my own life. I can barely manage [fill in the blank] . . . "

Another variation of that, and probably the most strange to me, is the "better you than me" implication. These are the people that comment that it would be much harder for them to deal with severe allergies than it is for me, because at least my children are younger and thus should adapt more easily, or at least I don't work outside the home, or at least I grew up around allergies. That may all be very true, but it feels odd to have people telling me that they're glad I'm the one dealing with such difficulties instead of them.

I could point, for instance, that at least their kids are old enough not to put everything in their mouths. Baby E's young age has its advantages, I suppose, but it also complicates things significantly. Once she gets older we won't have to worry quite so much about having things containing her allergens in the house for other family members to eat. And, it will (hopefully!) become significantly easier to take her places once we're not so worried about her picking up crumbs off the floor and eating them.

There's nothing necessarily wrong with people saying "I could never do that." I don't take offense at it, but it always takes me a moment to figure out how to reply.

We run into a lot of special-needs kids and their parents these days in our frequent forays over to the children's hospital in a neighboring state. The healthy-looking "normal" appearing children are the exception rather than the rule.

Sometimes I find myself mentally guessing the conditions of the children who walk past while I'm waiting with Baby E: "That child probably has cerebral palsy. That one has Down's synrome. That one has a speech disorder. That one looks like she has celiac disease or something like that; she's so thin and frail. That one looks so healthy; I wonder what brings him here?"

But more than anything else, I notice how beautiful they all are, each in their own way.

The 8-month-old who was unable to hold up her own head had the most gorgeous sweet smile and big dark eyes I'd ever seen, even if her face was unusually small and her chin almost disappearing below her mouth. She was beautiful.

The 9-year-old child in the wheelchair had spastic muscles, unable even to smile or move her head . . . but her eyes roved around in a way that told me she was aware and appreciative of my smile and Baby E's wave.

Her short dark hair was well-cared-for, she was warmly bundled in a lovely pink coat and a handmade blue scarf, and the love between the child and her caregivers (mother and grandmother) was palpable.

It was beautiful.

The little boy with shriveled legs who was balking at riding a giant tricycle had sandy-blonde hair and a mischevious line near his mouth that told me he had a sense of fun and a spark, even though he wasn't enjoying himself at the moment. He had a softness in his face next to the potential for mischief that was beautiful.

The two sisters with curly dark hair, both about the same height, but the older one rail-thin with almost transparent skin were the most fun to watch. They laughed and played together, enjoying each other's company and tossing their ponytails. They both had lovely olive skin, bright eyes, and sweet interested faces. They really were unusually beautiful children.

But I sometimes wonder what the parents think when I say something like, "How old is your baby? What's her name? She's beautiful."

Do they think it strange when I leave it at that, or do they appreciate it? I don't know. I'm sure it depends on where they are in their own mood and journey that day.