Wednesday, September 11, 2013

Tired of Explaining

 Post to Parent Support Group, 9/11/13 - 10:57 a.m.
Just got off the phone with a friend that was checking in. How many of you get frustrated with well-meaning advice? While I think my son may be able to have more control at home, I do not think we are being "played". And no, I don't think we are parents who "do too much" and let the "quality of our life for the rest of the family suffer". #TiredOfExplaining Grrrr!
To give context to my rant, the conversation was started by a simple comment how I hoped my husband would remember to water my garden later this morning. I had mentioned that the sound from the water pipes carry into my my son's current sleeping area and we are trying not to agitate him in the morning.
 I left for work early this morning. I had a busy day ahead. Before I left, I slipped a note under Colin's bathroom/bedroom door. " I <3 U. Have a nice day! - Mom".  I emailed a reminder later that morning for my husband to water my garden. We are trying to minimize the water use in the morning as the sound from the pipes carry into Colin's current sleeping area.
This was the first day I did not call at 9:00 a.m. to see if we had a successful "launch" to school. I figured no news is good news. My husband had a morning phone interview and I did not want to distract him during his preparation.
Around 10:00 a.m. my friend David called for his daily week-day check-in/bitch session. He is a fellow small business owner in a similar line of work.  It's been fairly hot the past few days and I happened to mention that I hoped my husband would remember to water my plants. I explained about the change I had to make to my morning routine. 
While David, knows about my son's strange disorder, I try not to burden my friend with a lot of the details. The mention of avoiding a morning trigger launched a conversation I did not want to have. Sentences prefaced with " I don't mean to sound critical...." or " Don't take this the wrong way but..."  peppered the discussion with a series of questions and well-meant advice.
I found it ironic that my childless, gay friend was giving me parenting advice. This coming from a man whose main employee is a drug addict who works to earn cash to pay for his next fix. Don't think I didn't draw a parallel. Yeah, I went there. In the nicest possible way. Awesome tactic to end that conversation. Who's the enabler now??!!!
I don't get angry but I find it very frustrating. I get tired of constantly explaining and defending the way we are dealing with our Misophonic Child. Unless you are dealing with this daily, I don't expect anyone to understand. Misophonia is NOT a choice. Reactions to trigger sounds are not some clever ploy for a child to get their way. This is a neurological not psychological disorder that brings out the primal animalistic  fight or flight behavior when triggered. NOT A CHOICE!
I think I need to start recording some responses to the standard questions and advice I keep getting from friends and family. This way I could just push a button to give my pre-recorded answers. 
I can't help but wonder if this is some kind of karmic payback for my own well-intentioned advice to others over the years.
We are a work-in progress!


  1. If this is karmic payback, it's beyond cruel. No advice you might have offered with the best of intentions could warrant this kind of payback. And how could anyone believe that any child would willingly choose to react or behave in the ways your son is doing for such an extended length of time? If he were just "playing you," he would not be able to keep it up. He must be scared and exhausted all the time, and is probably always wondering why he has to go through this when so few others do.

    I can't even begin to imagine how you must feel every minute of every day. But I do understand, to a much lesser degree, what it's like to know that something is not right with your child, how it's impossible to explain to others that he's not just being difficult, and how even the medical community can just brush you off and tell you you're simply overreacting. I know that feeling to some degree. Good for you for turning the tables on your friend. The last thing you need is to be made to feel bad about how you're handling things.

    1. I agree with the "beyond cruel" for karmic payback. Like you, this experience has made me more empathetic with others about being judged unfairly or brushed off. But I think you can agree that this just makes us more tenacious in finding the help we need. :) Never underestimate a Mom on a Mission!