From Wikipedia, the free encyclopedia:
Misophonia, literally “hatred of sound”, is believed to be a neurological disorder characterized by negative experiences (anger, flight, hatred, disgust) triggered by specific sounds.
This Blog chronicles our adventures with my youngest son who suffers from this disorder.
Sunday, September 8, 2013
Post to Parent Group 9/8/13 - 7:30 a.m.
are closer to bottoming out. We were advised to take away electronic
devices and tv until my son tries Neurofeedback. He went into a rage
when he was denied playing a video game in the basement with his
brother. My son has a steely resolve and is dead-set against NFB and any
other treatment. He went into a rage and locked himself in the
bathroom. I did the unthinkable. I took away his headphones. He had been
raging for an hour or two and banging things around when he yells out
to me that he doesn't need food, he'll just drink alcohol. *
That was it! I jimmied the door lock and busted in to find him holding
some foot spray and a can of anti-bacterial spray. He was ready to
"defend" himself against me. I took this "weapons" away and he slapped
me. I reached my limit and ripped his headphones from his head. I gave
them to my 15 year old to hide.
We endured hours of the most
horrible hate-speech to date. After several stressful hours and the
promise of not uttering a peep, he was finally given his headphones
back. I hate to torture my son but we are at our wit's end. We prefer
the reward system which is hard to do when my son had everything he
wanted and could not be bribed. I think he slept solid all night and I
am preparing for another "fun" day. We are still working on getting an
appointment with a Child Psychiatrist. My son can not be reasoned with
at this point.
The noise-dampening headphones have become a
drug that my son is dependent on and wears them non-stop in the house.
Have any of you had to take away headphones or earplugs? He is able to
go out in public without them for fear of embarrassment, yet I feel like
a horrible person for torturing my son.
Partial Conversation thread:
Theresa:I think you are doing the right thing.
Miso Mania Mom: Thanks! I needed that. By the way we are enjoying a morning truce over breakfast and watching Sunday Morning on CBS
Miso Mania Mom:Kid is starting to crack. He took his headphones off for a bit and approached me with a deal. He suggested that he could leave his headphones off while having unlimited use of all electronic media. I said nothing. When our show was over, I had him turn off the t.v. He said "Mom, you never answered my question." I replied softly that he knows what I want and he is not able to discuss it. I then calmly walked away. I will not cave. I will not cave. I will not cave. Unless he is receptive to getting help, I can not compromise here..... Time to "Keep Calm and Carry On"
Jaimie: hearing your struggles with your son scares the heck out of me as my
son also struggles with miso and he is coming into puberty. But
furthermore, you are really doing a great thing dealing with it while
realizing this isn't something he controls. As a person with Miso for as
long as I can remember, he is going to have to come to the realization
that there will be situations he is going to have to grin and bear it
because like any disability, there are just instances he is going to
have to adjust for. Having loved ones that do understand, and having
those opportunities to be in a sensory-friendly environment to de-stress
afterwards is most important. This was a long-winded way of saying you
are doing a fine job, and supporting him while preparing him for the
outside world is exactly what he needs.
I am just so sorry you had to deal with an episode like this. All too
familiar to me. My son just turned 16 a few weeks ago and this past
year has taken a toll for the worse. Our voices are his worst triggers
and we can no longer talk to him. We
did try Neurofeedback and I felt it help keep him calmer but no change
in terms of our voices lessening as triggers. We stopped after about 7
weeks and looking back, we should have continued. He didn't like it but
i do feel it calmed him. We also tried Nuerontin and he doesn't like
taking drugs because he is fearful of side effects so we were unable to
get him on a dose high enough to potentially help. They say it is
supposed to be a nerve relaxer so please do let me know if you find any
relief. Things do seem to be "worse" during the height of puberty when
it comes to this disability. I agree that making a deal with him might
give him more of a reason to try Neuro feedback. I hope today is a
better day for all of you!
The hate-messages are getting more disturbing and we have gone beyond "Just crawl into a hole and die!' to adding threats of stabbing and killing us. (I've removed any sharp objects from the bathroom that could be used as a weapon but don't think he could or would hurt us... yet.)
Colin also has been slapping himself and yelling "Stop hitting me, Mom" to make it sound like I am beating him. He also accused me of doing other horrible things while I was in another room. If anyone was at our front door they would think we were abusing our child. Fortunately I have a witness, my 15 year old son. I also used Colin's camera to video tape about 10 minutes of his fit (more for sound as he was off-camera for most). We need to have something to show doctors as he will most-likely not rage like this in front of them.
I think we are EXTREMELY close to taking my son to the hospital, although I'm not sure what good this will do.