Sunday, March 2, 2014

Misophonia : The end of family life as we knew it.

Over a year ago, my Princess started exhibiting strange behavior at meal times.  It was unbearable for her to be around any one that was eating.  She would either run down the hallway to her room screaming with her ears plugged and slam the door or she would fall to the ground and hold her ears while she sobbed.  She has always been quite dramatic and so we started punishing her for this behavior...which only seemed to make things worse.  We didn't know what else to do and we thought it was a behavioral issue that we needed to nip in the butt.

As the weeks went by, her sensitivity only seemed to get worse.  Not only did her outbursts happen when someone was chewing, but it was also when someone came down with a runny nose.  The sniffing and stuffy breathing sent her through the roof.  It also was happening when someone would clink their spoon or fork on their bowl or plate.

At her nine year appointment, I brought it up to her pediatrician to see what he had to say about it.  I was disappointed when he had no answers but rather referred her to a psychiatrist.  I will admit, we are all a little crazy in this family, but I know my Princess is not a headcase.  The thought of taking her to someone and her having that label was not a route I was willing to take.  I needed answers before anything else.  Why was she acting this way?

So, in the days that followed, I turned to the Internet.  I wouldn't always recommend doing this, but in this particular case, I found the answer I was looking for : Misophonia...which literally means - "the hatred of sound".  I found article upon article and several blogs that seemed to be describing my Princess to a "t".  

Misophonia is defined as a neurological disorder in which negative experiences (anger, flight, hatred, disgust) are triggered by specific sounds.  Although I was encouraged to have answers as to "what", it was discouraging to read about how this disorder effects a persons every day life.  I didn't understand all of the "hows" or "whys" but it gave me the little understanding that I needed.

Things had changed.  I have to admit, I had taken family dinner time for granted until this happened.  No longer could we sit around, all five of us, and catch up over dinner.  We couldn't eat out as a family, share popcorn at a movie, snack in the car on the way from here to there.  Meals were served and my Princess would retreat to her room and eat with the music on in her room at her desk staring at a wall.  On the rare occasion that we took the family out to eat, my Princess would pack her head phones and listen to music while she fought back tears...unbearable for us all....miserable really...but, this was life now.

Tonight, I witnessed a miracle.  Once in a while, for whatever reason, we are able to eat in front of her.  It's been happening more often lately...or with less of a reaction from her.  Tonight though, all five of us sat around the table.  There were no tears (I tried my best not to cry), there was no screaming, no ear phones, no loud music, no dirty looks, no falling on the floor, no banging her head with her fists...there was laughter...there was conversation.  We sat...we ate...we talked...we laughed...all of us.

At the start of dinner, I looked around the table and said, "Everyone, I would like to welcome a guest to our table tonight."  It was a little bit of a joke, but there was a lot of truth.  It's been a long time since we were five around the table.

It may be a fluke.  It may not happen again for another few weeks, months, maybe even a year.  I am trying not to get my hopes up...but, I had to celebrate this little victory I baked a loaf of apple cinnamon bread...and hopefully we can all eat it in the same room.