I just pinched myself to make sure this is not a bad dream. I can assure you as I click away at the keyboard that sadly, I am wide-awake. Misophonia is real but if this was a movie, it would be a horror show reminiscent of "The Exorcist" minus the levitating, head rotating, and foaming at the mouth. In our version, a priest armed with a crucifix, holy water and a bible is not going to help us. Hopefully with proper medical treatment we shall overcome.
My support groups, especially the one for parents provide me much comfort. Words of support, such as this partial quote from another mom, mean the world to me.:
"Please keep venting! I wish I had this place a few years ago. The only place I could vent was the yahoo group and most there, were adults with misophonia and most were not as severe as my daughter. Even a lot of the misophonia people didn't understand....... I understand every word you are writing..... My daughter has improved! It's unbelievable how similar our children are. Keep sharing, you have to get out your feelings. I know what you are going through. The biggest job you will have in these next few years is keeping him safe......... Every time I read your posts, my heart sinks, I feel it, I understand and my heart hurts just like yours. Just know, it does get better."
Not only do I know that there are other severe cases out there like ours, I have a testimonial that it does get better. I also have prepared myself for a journey that will last several years. Half the battle is knowing what might lay ahead.
Misophonia, The Movie
We now have a referral to a Neurologist, who has agreed to see our son. We just need to wait for her to have a consultation with our Pediatrician. Hopefully we will be able to get an appointment within the week. My homework is to get a "Rage" on video.I was able to accomplish this last night and burned it to DVD today.
For some reason last night, Colin could not sleep and complained about the refrigerator bothering him. He knew that we can not turn it off for the night and wanted to sleep in my car. At first were not going to let him and he went into a rage. I whipped out my video camera and taped a few segments.
Eventually we relented and Colin was able to rest in my car providing he put on pajamas. Our son complied but after getting into the car, he promptly stripped down to his underwear and wrapped himself in his blanket. He was given his cell phone and locked in for the night. If Colin wanted to come back into the house, he would need to call first. While I was not keen on the idea of his camping out in my van, I felt better that if any doors were to be opened, the car alarm would sound. Fortunately he slept all night and it was the best night's sleep I had in a while.
The Widening Circle
We have been trying to keep Colin's condition private but the circle of people who are aware keeps expanding. We have told a few coaches and teachers, the middle-school principal, family members, and a few close friends. I also recently posted to my long-neglected "Bad Momma" blog so that the few blog friends that I have left know that I am still writing but have changed focus. I still follow them in my blog reader and would like to help spread awareness of Misophonia.
My oldest son is relatively tight-lipped but my middle-son has already confided in a few close friends, some of which come in contact with Colin on swim team.Our biggest fear is that the information might make it into the wrong hands. All it would take is a few insensitive kids, armed with knowledge of what triggers our son, to open the floodgates of Misophonia-Hell. Colin's fear of public exposure keeps him in check at school and when out and about. If he felt that the word was out, there is no telling how our son would react.
Last night, my middle-son came home from a local high school football game with a nervous excitement. He started his story with "Mom, I have some good news, so please don't be mad."
My son ran into his friend, Anna, who now goes to a different school and he hadn't seen for a while. Anna had a quirk that my son remembered and decided to confide in her about Colin's condition.
"Misophonia? I have that too." Anna's triggers are certain mouth sounds. One of her main trigger words is "moist". My son recalled that some kids loved to say that word around her to see Anna react. Clearly they had no idea of what "hating that word" meant. While my son's friend was sorry for Colin, she was glad to finally know someone who really has this disorder. She also was able to share what she was feeling when triggered which was helpful for my son to better understand what his brother might be experiencing.
I have asked my son to message Anna to see if I might be able to contact her mother and compare notes.
I have been pleasantly surprised at how helpful our Pediatrician has been. He has been contacting many experts that might be helpful, including the head of Pediatric Psychiatry at our local Children's Hospital. There appears to be some interest in our case. I would love to get involved with researchers. While Colin's case may be a bit extreme, there are other kids in the area that have some of the same symptoms that point to Misophonia. We are not alone.
At this point help can not come fast enough. Both my husband and I are now triggers for our son. As with the mom whose words of support I posted, our faces and voices are now rage-inducing. We continue to take it day-by-day. We will get through this. ...."It's only a movie. It's only a movie..... Only a movie"......
We are a work-in-progress!