Tuesday, October 1, 2013


I just got back from my evening walk. Nothing like a warm, breezy, Fall evening to gather your thoughts and put life into proper perspective. The last few days have given me plenty to think about. Colin has pretty much crossed over to the dark side of Misophonia where my husband and I are concerned.The hate for us is constant now.

Our miso-son still has frequent trigger-induced rages but they are mostly leveling out. He seems to be able to watch t.v. in the basement during prime-time for our neighbors to mow their lawns and is not as triggered as he first was.

The most troubling part of the Misophonia is that at times my child seems a bit feral when he scurries into the kitchen to gather snacks and take them back to his lair. Colin also has become a bit lawless. Saturday night he pulled an all-nighter, watching t.v. in the basement. I tried to get him to turn off the tv and come upstairs to his sleeping area but he refused. My husband came down and asked me to let our son alone so everyone else could sleep. I reluctantly complied.

Tragedy and Loss

Sunday evening my middle-son burst into our room to tell us he had just received bad news. A girl he was friends with in elementary school had suddenly died after a short illness. That was very sad to hear and shifted my view of our situation. I have been mourning the loss of our child as we knew him. This loss is most-likely temporary and I am determined to get that sweet boy back. Sadly there is a set of parents who have suffered a real loss.  One that is permanent. I can't imagine the pain they are going through. Things could be so much worse for us.


Where to Draw the Line

Monday night, Colin continued his bad behavior. He refuses to eat food that his Dad prepares for him. Lately when Colin fetches his food, he has been leaving a mess. He has been ripping the labels off  his Boost bottles, shredding them and leaving them in a pile. I have been feeling like we have been too accommodating
and our son has been mistaking our kindness for weakness. I decided to open up a can of worms and pose the question to one of my FaceBook groups:

I need the advice from the viewpoint of a Misophonia-sufferer: Can parents be too lenient on a child with Misophonia?

Our son has crossed over to the dark-side of miso and is very hateful toward myself and my husband. If he sees or hears us, we get messages such as "Stay away" "Leave me alone" "I hate you" "Go die in a hole"... and worse. He seems to think he does not have to follow any rules and at this point will not listen to us without a BIG fight. He will not eat any food we make, he watches t.v. in the basement whenever he wants, and tries to order the family around.

Oddly enough he is still getting along well at school and shows no signs of trouble at home. (We just heard back from one of our "teacher-spies".) We have 2 1/2 weeks till our appointment with a Neurologist. Our son is about a 9 on the MAS-1 scale and not yet on any medication.

We are walking on eggshells as to not trigger our son. On the other hand my eldest son is 16 and will not put up with this behavior. My miso-son is afraid of his brother and will not rage for him like he does for my husband & I. What level of discipline is acceptable? Or do we give him as much leeway as possible until his doctor's appointment? I feel damned if we do and damned if we don't.

 While I had been hoping to get the viewpoint of a Miso-sufferer, I seemed to get more parental advice. Much of which confirmed what I had been told about not even most people with Misophonia understand the few of us with extreme cases.

One comment in particular stood out and was what I was looking for:
For me, speaking as a person who suffers and remembering back to when I was a child. I think talk of punishment and seeing psychologists, and having wires hooked up to the kids head is terrifying for him.

Please do not punish him for the reaction to miso. Normal naughty behavior yes punish. The anger and frustration he feels with miso can't be helped.
If I was in your position I would see the psychologist on your own with out him. Don't for now involve him. I think what you have on your hands is a scared child, who doesn't quite understand what is wrong with him, add hormones and you have a big melting pot of trouble.

Find out how to get him on board then start seeing about treating him.

Another comment that made sense:

It's not the machine or the person it's the sound. Btw I was 12 when my dad died. He may well blame you if that's the case. If you're that mad you have to take it out on something until you learn how to deal with it differently.

Lately it has been hard to separate the bad behavior from the Miso, but last night a spanking was in order. Colin was given a few warnings to clean up his mess or he would face the consequences. When he refused to pick up his mess, Dad gave him a spanking. I wasn't sure if this really made any difference. Our son still was defiant and hubs cleaned up the mess.

Turns out that today when Colin tore the label off his drink, it was not shredded and was thrown away. Score one for discipline. 

Word from the Front Lines

My husband emailed two trusted teachers that are somewhat aware of our situation to see how things are going at school. One of the teachers is a much beloved Science teacher who has taught all of my boys and the other is a History teacher and track coach. Both were shocked to hear Colin is struggling at home. Our son actively participates in class discussions, seems happy and gets along with others. He is showing no signs of duress. 

We were equally shocked and relieved to hear this.

Other Developments

We have an appointment set up with a neurologist two weeks from now. We also have our new garage door scheduled to be installed tomorrow. I am looking forward to being able to park my van in the garage and turning it into an evening retreat for Colin when he needs to escape the sounds of the household. 

I've also been getting a lot of support and advice from group members. I've been warned about the horrible side effects of  SSRI drugs and advised to try going the Probiotic route. One mom offered to introduce her 11 year old son to Colin via FaceBook (too early for this but I will definitely keep them in mind when we are on more stable ground).  

I don't know what I would do without my support groups.  I feel so blessed.

We are a work-in-progress! 

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