It’s real, people!

It’s real. It has a name. And it sucks!

I’m talking about Misophonia. Do you know what that is? Misophonia, also known as Selective Sound Sensitivity Syndrome, is the strong dislike, or hatred of certain sounds. It begins with a trigger sound, such as chewing, breathing, yawning, whistling, and on and on. The trigger sound produces a severe negative reaction to the sound, such as anger, fear, irritation, rage or panic. There is no cure, and doctors aren’t sure what causes it.

Adam has Misophonia. While he has not yet been officially diagnosed, he has been dealing with it for several years now. When he first started showing signs of the disorder, I thought it was a phase that he would grow out of. I had never seen anything like it before. I didn’t take it seriously. I’m sorry Adam. We gave him grief a lot about his anger toward the sound of our chewing. Chewing. That is his trigger. Not his own chewing, just other people chewing.

It’s getting worse as he gets older. He’s in high school now, a junior. When he was a freshman, he complained to me about kids chewing gum in the classroom, and how that drove him crazy. I thought that if he chewed gum himself, it would mask the noise of the other kids. It didn’t work.

He can handle fairly well being in the cafeteria for lunch. It’s noisy and there are lots of distractions. But in the relative quiet of the classrooms, that’s where he struggles. Not academically. Good grades have always come easy for him. No, it’s the noise of other kids chewing that drives him crazy. He can’t concentrate.

I finally brought it to the attention of the school principal. While he was sympathetic, he told me that without an official diagnosis, they could not make any accommodations for him in the classroom. I don’t know what kind of accommodations a diagnosis will provide, but I’ve got to try whatever I can to help him.

So, off to the pediatrician we went. He cannot diagnose this condition, so he referred us to a pediatric neurologist. The neurologist is only in the office 3 days a week. As a result, we have an appointment, but not for 3 weeks. In the meantime, the Director of Academic Support at school will sit down with Adam next week to talk about coping strategies.

Adam is super frustrated by all of this. He’s frustrated that he can’t control how he feels when he hears the chewing. He’s frustrated that he has to deal with it at all. He’s frustrated that there seems to be no way to fix it. He’s frustrated that we, nor anyone who doesn’t have it, really have no idea what it’s like. He’s frustrated that someone who doesn’t have misophonia is going to talk to him about coping strategies. He comes home from school every day and tells me he is not going back, he can’t deal with it anymore.

I’m frustrated because I can’t fix it. I have done a ton of reading about misophonia. I go out of my way to be careful about chewing around him. When it’s time for dinner, I tell him what we are having, and then he decides if he can tolerate being at the table or whether he will sit at his desk in him room to eat, based on what is on the menu. I’m fine with that, if it helps him. I will do whatever I can to help him deal with this.

I don’t know what will be involved in getting a diagnosis. Testing of some kind, I would assume. And, I don’t know what will happen once we have a diagnosis, if anything. I also don’t want him to develop other triggers, which can happen, according to things I’ve read.  I have read about tips and tricks people use to help avoid triggers. And, I’ve read about tips people use once the trigger sounds are heard to change their reaction to the trigger sound.  Adam is not open to these yet.

I hope and pray that this is not something that Adam will have to live with for the rest of his life. I cannot even begin to imagine!

I love you, Adam!

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