Saturday, August 31, 2013

The Great Escape

 Post to Parent Group: August 31 at 4:41pm
Day 1 of Neurofeedback did not go so well.
 In an effort to remain truthful to my son. I tried to explain the real purpose of my friend making a home visit with NFB equipment. He right away said he will not do this and went down the basement to watch tv. I let my son chill out until my husband came home an hour before the appointment.
 I had my husband take my son out to play ball or frisbee so I could run the air conditioner and vacuum the house. When it was time to come back, my son ran off to avoid the session. I had hubs come home so he and my middle son could learn how to use the equipment. 
I went driving around, frantically looking for my 12 year old. As I was cruising around, I saw the police chief who lives in our neighborhood outside in his yard and stopped to see if he saw my son. I explained the situation. At this point I am not 100% sure my son will not harm himself and decided to enlist the police to help find him. 
I now have an "elevator speech" * for Misophonia and the police now have his information and photo in their system. We did find my son walking around and got him home after the OT had left but at least we have a system at home and 2 people who may know how to administer. My Miso-son is holed up in the bathroom spewing hate-messages but at least he is safe for now. (until he triggers "the Hulk syndrome in Mom" and all bets will be off.)

* "My son has a neurological disorder called Misophonia. It is a sound-processing disorder where certain noises trigger a reaction similar to PTSD (post traumatic stress syndrome. #MisoElevatorSpeech #therapyavoidance #gettingvalueforyourtaxdollars
Like · · Unfollow Post · August 31 at 4:41pm

Friday, August 30, 2013

Miso Skip Day

Post to Parent Support Group  August 30 at 11:24am
Today is shaping up to be a very challenging day.
 Apparently while getting ready for school, something triggered my son as he was getting his clothes. He stopped what he was doing, stripped and locked himself in the bathroom. He told my husband that, "I just can't do this".
 Apparently the air conditioners at school are also a problem. This is the first day he has skipped school and the first we heard about any triggers at school. I went home and brought him back to my work. (not an easy thing to accomplish) I have my own business and am working alone today. 
My husband has a doctor's appointment and will come fetch our son later in the day. This should be interesting as I can not run the air for now and have him in the middle room with the lights out to calm him. He has a flashlight and some water. I set the air to 90 and warned my son that at some point I will have to run the air. He is letting me run a fan in my office for now. #IneedaXanax

Thursday, August 29, 2013

A Glimmer of Hope

 Post to Parent Group August 29 at 9:31am
I am SUPER excited! I just got off the phone with my old friend who does Neuro Feedback. 
She is coming to our house this weekend with a machine that we will rent for a nominal fee and she will teach us how to use it.* This will save us from traumatic car rides to her office. Since my son is so resistant to talking about his issues or accepting help, we are making this appear to be a social visit and the treatment will be under the premise of a tool we are evaluating for enhancing athletic performance ( all 3 of my boys are swimmers). Kay uses a symptom-based, infra-low frequency system that can be used with DVDs of my son's choosing (we have tons!). She has a special-needs child that has made great progress with this method and how she came to use it in her practice. #veryhopeful
* Typically a family must complete 40 sessions in the clinic before a system is allowed in the home. Our family is in an extreme crisis situation and may be breaking some rules.... 

Monday, August 26, 2013

Just Another Brick in the Wall

Post  From Parent Support Group - August 26

WARNING: Long Rant Ahead: 
We worked hard all weekend to get the loft converted into a 4th bedroom. I spent $$$ at Lowes & JC Penney purchasing various curtain rods, curtain tracks and curtains. We are 90% done and the room is looking sharp; which is more than I can say for the rest of the house (which is littered with furniture and crap from our formal communal space). My 2 older boys have commented how quiet the loft seems now and even admitted that the new room looks good. I still want to add curtains around the bottom bunk bed to create a sleeping chamber. 

My 12 year old Miso-son has maintained he will not sleep there. I even took him out to a nearby driving range that is a 2 mile drive from our house to give my husband a chance to vacuum, put the air on and run the laundry machine. Getting there was a nightmare, even for a short distance. About the half-way point my son wanted me to turn around. I did not. When we got to the golf course, I turned off the car and waited things out. When we finally got to the driving range, his entire demeanor changed. For a glorious 90 minutes, he appeared to be his old-normal. He even asked if we could stop by my work (about 1 mile away) to get cardboard for a school project. 

The car ride back home was the same. "Hurry!" "Drive faster" with lots of moans. Shortly after arriving home, something set him off again. He retreated to the first-floor half-bath and even tried to take his dinner in there to avoid the hum of the fridge. (He was going to make a PB&J sandwich.) I had enough and pointed out (probably a big mistake) that he should be able to eat at the kitchen table. "How is it that you can sleep on the family room couch (or on the floor behind it)? This is only a few feet from the table." 

Well last night we left him downstairs in the living room (which is below the loft). My husband made 2 comfortable sleeping areas there. (one on a couch and one on the floor). He refused to take any medicine (Benedryl, which I took instead) so we left him wearing his headphones and blanket, looking like a green ghost. 

We found him in the morning half-standing, slumped over the couch. It did not look comfortable. Somehow he was able to get it together to go to school. (He still likes school. Thank God for small miracles). We have a call into the Psychologist (that he refuses to see). I also found a NeuroFeedback Center in the area that my husband will call today.

 It is so frustrating that my son will not communicate what is happening with him and clings to his story that he is "Fine". 

 In a few short weeks I went from "the Best Mom in the World" and "I love you mom" to one of "You People". As in "Why are YOU PEOPLE doing this to me?" or " I hate YOU PEOPLE". or "You are Terrible People".   Sometimes things are so bizarre, I find bits of humor in our situation. (There are times you need to laugh to keep from crying). The worst part of this disorder has already been mentioned numerous times by all my new "Miso-Friends". Other than support groups like this one, the general public, as well as most doctors, do not understand Misophonia. 

A big THANK YOU to all here for letting me rant! 

*Rant over and back to work.*

Saturday, August 17, 2013

How Did We Get Here?

Saturday, August 17th 5:53 p.m.

My first post to a support group for parents of children with Misophonia:

I just joined this group to help get input from parents. My 12 year old son appears to have Misophonia.
He has had an aversion to certain sounds for a few years now: the metronome (for piano lessons), ticking clocks and the car radio.

This year his condition has quickly migrated to include fear/aversion to ceiling fans, the air conditioner, windshield wipers, turn signals, birds & crickets if the windows are open, the dishwasher, and hot water heater. When indoors he wears noise-cancelling headphones and sleeps on the couch because he shares a room with a ceiling-fan-loving brother. He also wears his headphones in the car and will usually cover his head with a towel.

We took him to an audiologist to make sure he did not have Hyperacusis (Recruitment) which he does not. My son also does not want to talk about his sound aversions. He was extremely reluctant to go to the audiologist. ("I'm fine, Mom!"). He was worried about getting psychoanalyzed. We had to trick my son to get him to an appointment with a behavioral psychologist that was recommended by the audiologist. (which was not hard with a towel-covered head). Needless to say, things did not go well. The second appointment was even worse. It was a battle to get him in the car and I had to endure screaming, crying and threats of wanting to jump out of the car into traffic and end it all. My husband rode in the back to make sure this did not happen.

We are still working on a strategy with the doctor, who needs to do some research as this is not a common condition. One of the suggestions is to have a behavioral therapist come to our house. The biggest hurtle is to get our son to want help. We have been trying without success to get him to understand that we don't think he is crazy and that behavioral therapy to help him cope is not the same as psychoanalysis.

Any advice from parents or teens would be greatly appreciated. It has been very comforting to see that I'm not alone. Before we had an idea of what was happening, the reactions from triggers were quite alarming.