A pain in the arse by any other name…

Once in a while I wonder if  I’m going about this all wrong.  I wander into support pages online and I find myself scratching my head at some of the stuff I read.

I think J, my darling hulk of a son, is precious…when he’s not being a pain in the ass.  I also think it’s ok to admit that he can be a pain in the ass.  If I can say that about his older brother, I can say it about J.  Not saying it about J would mean, to my mind, that I am discriminating against him because of his disability, and I firmly believe that J has a right to be thought of in the same way as his brother.  The only essential difference between them is that J is autistic and his brother is not.

When I first meet other moms of disabled kids I hear a lot of “he/she is such a blessing.”  Yes, J is a blessing because he has provided us with experiences that build our character as individuals and as a family, and he’s allowed us to learn a lot about what we can/cannot, will/will not do to move our life along a more or less successful path.  Having said that: J can be a royal pain in the ass…

Is it that we, as parents of developmentally-disabled individuals, fear we will be thought of as “bad” if we admit we would not mind having a “normal” kid for a little while?  Do we think it makes us “evil” or “uncaring” or “bad parents?”  I think there’s a lot of that in there; we tend to immediately recant any expression of dissatisfaction or frustration that we express, especially if the parent we are speaking to says “oh, but so-and-so brings me such joy!”  Immediately, like something propelled by David’s slingshot, we say “oh, so does so-and-so, I wouldn’t change A THING!!!”

The feeling takes a hold of me once in a while.  My husband admits the same thing.  There are times when we just get in the car to go somewhere and we say “that kid is driving me BANANAS!  What is it with the new quirk of doing this or that?????”  Once in a while I tell J “you need to go to your room and I need to go to the garage to just be away from you, but I do love you.”  Other times I just tell him “NOT NOW!”  In my defense, there are times when J just doesn’t want me around either, and he’s angry and he’s forceful about telling me so…there’s no hate involved, but we do need to get away from each other.

I once met a girl (and I call her a girl because she and her child were significantly younger than J and I) who thought of her autistic son as a “crystal child.”  He was a lovely little boy, with eyes like a doll and pale skin.  When he smiled I kept wondering what he was seeing that made him so happy.  There was something ethereal about him…when she told me what diet she had them on I started wondering if he was just hungry.  His name was something rather basic, a name that just about anyone would give a baby boy, but she called him by his astral name.  When this kid started to complain about something, she pulled out a stone and rubbed it on his arms and forehead.  The way she spoke to him was the way in which one tries to extract information out of a flower or a butterfly, and the boy smiled and looked at everything with no connection to what was happening.

I felt like a bad mother because I knew, as I observed her, that I would’ve sat J down, talked to him firmly but kindly, made as much eye contact as possible and tried to find out what he wanted.  “Use your words,” “look at me, please,” “I cannot help you if you don’t help yourself,” would poured out in a steady yet calm stream.  If he had said (using the usual methods) “I want burger fries,” I would’ve felt like I’d just put the final touches on Mt. Rushmore and I would’ve fed him, even if a Happy Meal is not a paragon of nutrition.

Am I a bad mother because I don’t think my child is crystal?  Am I too pushy and annoying?  Should I believe less in persistence and raising the bar?  Should I aim to find out what J’s astral powers are?  I wanted to hug that girl and tell her that lovely child’s going to grow up and things will get harder, but I controlled myself.  If I’d said what was on my mind, I would’ve been one of those disapproving people who doesn’t believe in magic and I’d have…what?  Crushed her?  Been discussed at the support group as a rude non-believer?

If I believed in crystal and indigo children, I’d have to admit that J is rock!  There is no astral enlightenment in him.  J listens to Metallica and does a head-banging movement while smiling like he’s discovered butter after years of consuming margarine; he rolls down the car window and laughs happily when the wind runs its rough fingers over his face as we motor down the freeway.

If there are crystal and indigo children, J is clay…  Do I want to admit that?  Does that mean that I have failed him?  Can I live with the knowledge that might have failed because I didn’t seek out the special magic in my son?  I’m willing to admit  there are days when, as much as I love him, I could punt him off the balcony because J is sixteen going on seventeen and he still throws a tantrum if he wants something very badly and I’m not acquiescing.

Small Business Saturday…$20 in Slinkys mean J can enter a drawing for an iPad.

Off to town we go!

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