Just tell me what you want…

In spite of much progress made over time, J can be pretty inscrutable.  There are days when he wants us to know what he’s trying to say.  There are days when he seems to get some degree of satisfaction from watching us become more and more frustrated.

Some people collect stamps.  J seems to have made a hobby out of confounding us.  I don’t know if that counts as collecting anything, but it’s something he appears to do for pleasure.

Last night, oh…last night was one of those nights when I wanted a crystal ball, powers of ESP, and a window into J’s mind.  I get the feeling the ball and the window would have been clogged up with fog and the ESP would have failed miserably.  There was just no getting out of him what the heck he wanted…and Dada, I fear, was not particularly helpful.

The evening ended with physical and emotional exhaustion.  I felt compelled to unload the brick that seemed to have parked itself in my solar plexus.  I asked Dada to listen without interrupting, and to not -for the love of all that is good in this world- close off his mind due to defensiveness.  I took off my glasses just so I couldn’t SEE his facial expressions as they changed while I talked.  This, believe it or not, helped ME a great deal.

J, I told him, makes a titanic effort to make himself understood.  It might not seem like it most of the time, but there’s a great deal of effort in there.  Especially, I explained, if you consider that it’s not in his nature to make that effort to communicate.  He is extending us a courtesy, and the wise thing to do is extend it back.  When we get frustrated, which is perfectly normal and acceptable, but shouldn’t be made a habit, we are basically telling him that we’re closed off to his effort.

Of course, I said, J will get frustrated way too early in the game and he will melt down, but we are the grown-ups and the ones fully equipped to communicate so we have to put even more effort into redirecting him to productive communication.  When we don’t do this, when we immediately succumb to our frustration, when we tell ourselves “I don’t know what he’s saying” without offering alternatives to bridge that gap, we’re sending the message that we don’t care enough to go farther down the road with him.

I talked about my concern that, in spite of this myth having been debunked, I was going to somehow turn out to be the one woman who managed to prove that Refrigerator Mothers are real and to blame for Autism.  I explained that a lot of my frustration comes from the fact that everyone seems to trust me so much that they think I can handle this with one hand tied behind my back, my eyes closed and while juggling lit torches.  I’m not that capable, I explained.  I might be dedicated and ballsy, but I’m not “in control” of jackshit around here…

We fell asleep and woke up to calm morning.  J went to school and to a field trip without incident.  He came home and is happy.  He made an attempt at asserting his will in an unreasonable way, but I managed to stay cool throughout the moment it lasted.  We are now happily sitting in the basement, and he’s told me it’s GOOD and hugged me.

I don’t fault Dada.  He does have a lot on his plate with work and such.  I know that he loves J more than words could ever express, but I also know that he thinks me highly skilled and capable, and that can be a liability in these cases.  What if, I said, something happened to me?  What if I have appendicitis and need emergency surgery?  What if, heaven forbid, I’m incapacitated or die???  The idea of a mess in handling our household, especially where J is concerned, horrifies me.

I know what everyone in this household wants (more or less,) and I put a great deal of effort into helping them get what they want.  If I can’t help them get it, at least I can acknowledge their wants and needs and, when possible, I can offer encouragement or advice.  When what they want is impossible or impractical, I can offer wisdom or perspective.  It’s part of my job.  That with J this is more complex a process frustrates me, but it doesn’t dissuade me from trying…and, believe me, I do try.

I want to not be the only person who can pinpoint what J is trying to communicate, help him improve his ability and his resources to make himself understood…I want to not be the only one because it’s REALLY HARD to be ON all the time.  I know Dada tries, but sometimes he just has too much faith in my ability to handle things, my ability to BE HERE.

Does that make sense?

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