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A question asked by a friend

"Do you pity your son?"

A very good friend of mine asked me this question shortly after we received the first diagnosis, which is not a definitive diagnosis. The second, which would come later (for a variety of reasons, some of which have to do with how often testing can be done on the same patient without skewing the results), was definitive, or as definitive as it could be at that age.

We'd known each other since our university days, so she knew me well enough to ask a blunt question without fear of giving offence -- but just in case it's not clear, I wasn't offended; it was a serious question. I was perhaps a bit confused, but I can also ask questions, and she was standing right there.

"Pity? What do you mean?"

We were both watching my son play. When he played, he was like the essence of sunshine.

"Well, things will be harder for him. Things that most kids understand intuitively, he'll have to work at."

Being me, I thought about this for a bit (probably out loud). Then I said, "No. Because you know what? He's not going to know the difference. It's not as if he could see and then lost his vision, or hear and then lost all sound. This is all he's ever known, and it's normal to him. It doesn't matter how much easier it would be if he were different, because he's not, and he has no way -- at this age -- of measuring his experience against the experience of any other child.

"He has to learn how to interact with the world. Will it be harder? Probably. But hard doesn't matter in this case. What he can learn, he'll learn."

"It might be more painful."

This one, I had thought about. "One of the worst things -- ever -- about parenting is realizing and accepting that we can't protect our child from pain. Pain is everywhere. Life, at times, is painful. But pity him? No. He's who he is."

And she smiled and said, "good for you."

But it was -- and is -- true. I don't pity him. I never have. I love him (I'll probably avoid making him read this part), but everything he is is part of that, for me.

However, it's hard to accept that I can't protect someone I love, especially when he's so damn young to me. I can comfort, if its allowed, and if I know how. But the only way to protect someone from pain is to deny them life. I'm not, at this juncture, speaking of physical abuse, but of the emotional pain that comes from isolation (even if unknowingly self-imposed), from being misunderstood, from not being heard or not being listened to -- from, in fact, not being known.

There were times when I felt heartbroken at some of his pain. When he would share it, I listened. I had to learn that I wasn't an engineer in his life -- that sometimes being heard was all that was required. This is not a natural state for me, so it was a struggle, because the minute I hear the world "problem", I immediately start to think about "solution".

That isn't always what people want, though. They want sympathy. They want company, even if they don't always seem to be appreciate it; they don't want to be handed more work. My natural inclinations make this one harder for me to intuit or act on.

What my son sometimes wanted was an explanation for what had occurred, some way of understanding it that he could grasp and make sense of. So I tried to give him that, when he'd let me.

But also, watching him play, playing with him, I reminded myself that if life is, at times, undeniably painful, it is also undeniably joyful; neither state persists indefinitely.


( 8 comments — Leave a comment )
(Deleted comment)
Nov. 10th, 2010 08:52 pm (UTC)
I suspect you and T are the best parents he could possibly have.
Nov. 10th, 2010 11:56 pm (UTC)
I read this post earlier, Michelle, and I couldn't really think of anything to say. I still can't, really, other than to concur with the others.
Nov. 11th, 2010 01:18 am (UTC)
Your son is very lucky.

I started reading for your writing posts, but these are equally, if not more, interesting to me. :)
(Deleted comment)
Nov. 11th, 2010 04:57 am (UTC)
But don't you find that, being a "solution" person, you sometimes move into solving mode without really thinking about it. Only to belatedly realize that what was wanted was sympathy. That happens to me *a lot*.
Nov. 11th, 2010 07:11 pm (UTC)
Heh, this is one of the biggest fights I have with my engineer husband. ;) That, and just because I'm complaining/venting, doesn't mean I'm necessarily unhappy. I think people do this a lot in general, they complain about things more than they praise them. My husband was convinced I hated my job, because I'd come home and bitch about something that had happened at the lab. When really, I LOVED my job, except sometimes there were things I really hated. Hating those things though didn't mean I hated my job, and I think he's still confused about that to this day.
Nov. 23rd, 2010 02:07 am (UTC)
Yeah, I learned to start a venting session with "I would like to vent; I would like you not to offer any solutions. I might change my mind; can you deal with that right now?"

I found articulating what I wanted in advance forestalled quite a few fights (because my partner learned to trust that, as long as they responded as I had asked, they would be saying and doing the right thing, and that the definition of 'right' wouldn't change without me letting them know. So there is less stress and uncertainty in their responses, which makes these interactions much more positive for both of us) - and it's a technique my (ASD) parents have subsequently picked up, which makes me feel good :D
Nov. 14th, 2010 06:54 am (UTC)
"... they don't want to be handed more work."

That line has a beautiful clarity to it, about the difficulty of just listening when someone tells you their problems.
( 8 comments — Leave a comment )