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.
Monday, October 7, 2013
Sunday Afternoon Kidnapping
Post to Parent Support Group Sunday, Oct. 6
a break so my 16 year old son & I "kidnapped" my 12 year old
miso-son and took him to my sister's house which is a 40-45 minute
drive. A 45 minute drive from hell!
Kid screamed at the top
of his lungs and threw fits the whole way there. Big brother rode in
the back to keep him safe. It took a while before my son calmed down in
the driveway and my sister was able to carry him inside.
We left and went to breakfast. My sister called after a bit to let us
know that my miso-son was calmed down and playing video games with his
15 year old cousin. I am anxious to see how the day goes. It is amazing
he is able to function without his headphones. They even got him to play
a game called "Mind Flex" which I think may be similar to
Neurofeedback. At first their dog was a bit upset as he sensed my son's
anger and anxiety, but once my son calmed down, the dog was much happier
to be around him.
We are able to get things done around the
house today. We are also considering our options. We have 11 days until
we get in to see the Neurologist and not sure yet what is happening with
the researchers that are interested in our son. As both my husband and I
are now triggers for anger we are concerned about our child who tries
to be in control of our house and won't listen to us.
option is to have our son either live full time or on weekends with his
Aunt and Uncle. They have a large house with lots of cool toys and
technology. My only request was to not let him play "Grand Theft Auto"
and it went without saying that any firearms or weapons would be safely
There are no group homes for kids with Misophonia
and we are running out of options. Our pediatrician had asked about
family members that our son could stay with when my husband asked about a
group home as a possibility if things got any worse.
hoping my son does well today and enjoys his time there. My sister will
not (and should not) turn off her air or other household appliances.
I took advantage of some quiet time at home. I did laundry, went for a walk and relaxed. Around dinnertime, the phone rang. The caller i.d. showed my sister's phone as I answered. At first there was dead silence and then a quiet voice that was barely audible. "Mom, can you come get me and take me home?" I started to ask questions, only to have them go unanswered. I could tell it was a struggle for my son to be civil. I asked him to give the phone to his aunt. Apparently Colin was offered dinner but politely refused. He mainly ate junk food all day. My sister tried to show him their new electric car (Tesla) and our son seemed very uncomfortable about riding in it.
It was raining even harder than before. I knew we were in for another tough ride and took both my older boys along for the ride. When we got to the house, Colin was in the lower level with his cousin. He seemed fine, just a little quiet the whole day. If my sister had not witnessed my son huddled under a towel, sobbing in the back of my car for 30 minutes when we got to her house, she wouldn't have known anything was wrong. As hard as this was on us, I am glad that I have a witness to some of the split personality that the Misophonia is causing.
My eldest son went down to fetch his brother while I visited with my sister and her husband. My middle son stayed in the car, playing with his I-Pad. I ended up going downstairs to see what was happening when it was time to go. The rain had let up a bit and according to the weather map, another storm was due to hit in an hour.
I was amazed to see Colin playing pool with his warden-brother while my nephew was engrossed in a video game. Everyone looked peaceful until my miso-son caught my gaze. He narrowed his eyes into his hateful-squint and softly asked me to "Get out of here". He thrust his pool stick in the air to shoo me away but did not want to make a scene in front of his cousin.
Bumpy Ride Ahead
The journey home was every bit as horrific as the ride out. I had to use my wipers and defrost. My eldest did the bulk of the work keeping his brother restrained and safe. Middle son was a bit traumatized. He had no idea how bad the rides can be.
When we arrived home, we had to leave Colin in the car to rage. he continued to do so for the good part of an hour. When my husband tried to take him in, Colin refused and stayed in the car. We brought out blankets and towels.When I later brought one of the house phones to act as an intercom, our son was fast asleep, wrapped in his blanket, using the folded down seat as a head-rest. We locked him in for the night.
This morning Hubs ran the heat and requested I leave a bit later for work so Colin can continue to sleep in the back of my car. He will take our "homework"( video of a rage and a list of triggers and goals) to the Neurologist's office today. The biggest things keeping me together are the anticipation of medical intervention and my support groups. I am now part of an elite group of Misophonia Parents that have kids with extreme cases. Not exactly a goal of mine but at least I am in good company. Every day I pray for all of us.