It's Only A Movie..... or is it?

Many years ago I worked in the pressure-cooker environment of the buying office for a large retailer. One of my bosses had a saying for when times got tough. "It's only a movie!". She would sometimes mutter this a few times in a row, like Dorothy in the Wizard of Oz and her famous, "There's no place like home!".

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.

Other Developments

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!

Miso-Insanity

One of the puzzling aspects of Misophonia is that of rage-control. We've been witness to the schizophrenic nature of this disorder. As I have mentioned before, it appears that the fear of public embarrassment keeps the rages in check. My son could be raging one minute but snap-to and appear normal the next. It's all about location and who is present.

Tuesday night was jam-packed. 

Colin had a cross-country meet and arrived home with about an hour to shower, eat and then go to piano lessons. It was a nice, cool, and sunny evening; perfect conditions for running. It was also a nice night for some of our neighbors to mow their lawns. Funny how the miso has made us painfully aware of what type of lawn equipment our neighbors own. My son came storming into the house while my husband was muttering disparaging comments about a neighbor four houses down who has a new riding-mower for a house on a half-acre lot. This mower had just created the perfect storm!

I was convinced that there was no way our son would be able to make it to his lesson but with seconds to spare, he took a quick shower, and gathered up his clothes and music. Wearing just his underwear and headphones, Colin wrapped himself in his blanket and hopped in the car. I let my husband take the wheel and I opted to stay home.

While the car ride was a bit "bumpy", as soon as they arrived at the teacher's house our son got dressed and snapped into his old, charming self. He appeared happy and engaging and had a great lesson. (for someone who did not practice all week).

Thursday night shuffle

Last night was another busy night. Colin had cross-country followed by swim team practice. My husband had a meeting to go to and my eldest was not able to go, so I had chauffeur duty. The ride over was punctuated with shouts of "Hurry" "Go Faster" "I hate you" with my 15 year-old who was riding shotgun, firing back with demands to "shut-up!" or the French version "ta toi". We were half-way there when my husband called to let us know that Colin took the wrong bag. He had left his swim bag at home. Fortunately there was time for hubs to drop that to the Y on his way out to his meeting.

The return trip went much more smoothly. The boys were relaxed and seemed happy when I came to pick them up. I've learned not to engage Colin and let him make the first move. Which he did, interrupting a conversation I was having with his brother. Colin actually directed his comments to me, "Mom"! He  told me about his muscles hurting. I told him that his body could probably use more potassium and he should eat a banana when we get home.

I couldn't make out what he said next but it appeared he realized he was being friendly with the enemy  and muttered something about not getting too happy and to consider his rare burst of conversation as "a gift".

When we arrived home, Colin asked if he could chill-out in my car for a bit. I agreed and brought him a Boost shake to go with some snacks that he had. I also gave him one of our cordless phones so he could page me if he needed anything. After about 45 minutes, I went to check on my son and he was fast asleep. I covered him with a blanket and towel and decided to let him sleep for a bit until my husband could move him.  We left him for 3 - 4  hours to get some much needed rest. Hubs kept checking on our son who would not wake up. Finally after midnight Colin ended up making it to the front door on his own. He was very agitated that he could not get in right away and had endured a few mosquito bites.

Thus, another rage. This one lasted for roughly 45 minutes to an hour. Colin was pretty angry and made some death threats. Lovely ones that mentioned stabbing us in our sleep. I've been sleeping on the family room sofa, around the corner from Colin's "B & B". I am a fairly light sleeper and am able to usually hear our son rustle around. I also have been able to wake up on the rare occasion the door opens in the middle of the night. While I've yet to see my son handle any of our kitchen knives, I have suggested to my husband that we put these away in a cabinet so they are not easily accessible. I'm pretty sure this is just the Misophonia talking and our son is still less than 90 lbs. soaking wet, but better safe than sorry.

We have a long and crazy ride ahead!

We are a work-in-progress.



 

Manic Monday

Thanks to my husband, we were able to cross several items off our Miso To-Do List today.

1. Return the Neurofeedback equipment:

On Saturday, I took my 15 year old son out for some errands and let him pick out some movies to buy at Blockbuster. He picked "Dinner for Schmucks" as the movie we'd watch that night. He also wanted to buy a video game. I said fine, as long as there were no guns or weapons involved. (Great trick to get off cheap. There are no good games for teens without weapons.)

When it was show-time, I got hooked up to the equipment and controlled the screen. For the most part, I did a fairly good job of keeping it large and clear. Unfortunately my miso-son was not interested in watching a movie with us. Not sure what I accomplished other than having to wash my hair to get the electrode-goop out.

We decided that it was best to return the equipment today as to not incur another month of fees. When the time is right, we will just take Colin out to the O.T.'s office to have NFB introduced the right way.

2. Trip to the Pediatrician

Last week Hubs set up an appointment for Colin with our pediatrician. We took my brother's advice and decided to get a physical. The doctor had a chance to read up on Misophonia and after examining out son, he concurred this is most-likely what we are dealing with. The doctor mentioned looking into SSRI drugs and wrote up a prescription to get blood work done as well as ordered a strep-test to rule out Pandas.
The good doctor will speak to some neurologists to find one he can refer us to.

3. Trip to the local satellite office of Children's Hospital

I took the easy job and brought my high school sophomore to a college fair.

My husband and eldest son hauled Colin to the "Close to Home" treatment and testing center. It was a bit of a fight to get my son into the car and then into the center but they were prepared. Afterwards my husband took the boys to Sonic for milkshakes, which makes everything better!

Now we can sit back and wait for results and referrals.

We are a work-in-progress!

Weekend Wrap-up

The weekend is coming to a close and we got through it!

We are adjusting to our current new-normal which is our son splitting his time in the house between the 1st floor half-bath, where he sleeps on the floor and the basement where he watches t.v.. He seems to be most comfortable hanging out in his underwear, wrapped in a blanket and wearing his noise-dampening head phones.

When we need to run laundry, the dishwasher or the hot water heater for showers, he will volunteer to hang out in my mini van that is parked in the driveway. My husband is working on clearing out our garage to make room for my van. We are also waiting for a new garage door to be installed. Our current one is old and broken. The new one will be extra-thick with insulation so that the garage will be warmer for the winter and a good place for Colin to be able to hang out in my car when he needs to escape the house.

The rages due to neighbors running their lawn mowers have lessened in intensity and duration. Colin was able to watch television in the basement this weekend to help tune this trigger out. Small but noticeable progress.

On the flip-side, the hate for my husband and I seems to be fairly constant now. We need to avoid making eye-contact or conversation so not to enrage our son. I seem to be the most-hated person in the house. Oddly enough, I am fairly calm and o.k. with this for now.  I rather be hated for something that is not my fault than to have this rancor be justified.

The ironic part in all of this is the fact that not too long ago, I was the most beloved by Colin. He was telling me non-stop how much he loved me, much to the annoyance of his dad and brothers. Now the messages of love are replaced with hateful ones.

It has been said there is a fine line between love and hate and sadly it looks like I have crossed that line with my son.

We are a work-in-progress!

"D" Day

"D" is for Dentist 

Yesterday afternoon was the scheduled tooth-cleaning for my eldest/16 year-old son and my 12 year-old miso-son. Last week, during my appointment, I had alerted and educated the Dentist and his hygienist about my son's Misophonia. I was worried how the visit would go due to the many possible triggers within the office.

Around 4:00 p.m. I received a frantic call at work from my husband.  As soon as Colin entered the Dentist's office building, he rushed to the restroom, closed the door and began to kick at it. Our son escaped back to the mini van and could not go through with his appointment. My husband decided to switch and go in his place. He asked me if I could get away and pick Colin up.

I explained that I was waiting for UPS to pick up today's shipment and could not come for a bit. I hung up, but called back after I had time to think. Why can't our eldest sit in the car and babysit when it is dad's turn for his cleaning? My husband agreed. I asked about his plan to pick up our middle son at his school around 5:00 p.m. My husband thought he could still do this, although originally he had planned to go after our 12 year old had his teeth cleaned first.

"D" is for Detonation

I arrived home just before 5:00, beating my husband and boys. After depositing my work-things by the side of the stairs, I proceeded to the refrigerator. The sign was flipped to "On" but upon further inspection the fridge was turned off. I could feel the anger building. Colin has gotten careless about turning the sign when he shuts off the fridge. He often gets belligerent when reminded. I am getting so tired of this.

A short while later, I hear the car pull up and commotion as the boys exited. Colin was storming toward the house, wearing just his headphones, underwear and a single sock (the other foot was bare) and using a blanket to shield him from the neighbors' view.

My rage was building.

My husband took off to fetch our 15 year old, leaving me with 2 angry boys. Only one of them was justified in their animosity. As my miso-son stormed past me, he gave me the laser-beam glare of hate. The bathroom door was slammed and the fit escalated.

I fired off a warning yell to keep it down. My son yelled back. After a short back and forth volley of threats, I had finally reached my limit. That. Was. It! Fasten your seat belts and put your trays in the upright position. Get ready for take-off.

My temper was ignited and I exploded into a screaming monster. I raged so hard, my son escaped to the basement. We exchanged "gunfire" with laser-beam shooting glances. Colin put his hands together and pointed them at me like he had a gun and fired off a few shots. I pulled my imaginary weapons from my holster and fired at him with both barrels. I think I saw a smirk on my son's face before I left him to cool off.

I am so glad my husband was not at home to witness any of this. I know what I did was childish and wrong. But it felt sooooo good!

I'm beginning to understand "The Rage".

"D" is for Desperate and Disaster and Devastation

When my husband came back with my middle-son, things had cooled down a bit. My 15 year old was not happy his dad arrived 45 minutes late to pick him up. There was just enough time for dinner and then onto piano lessons for my poor middle child. I opted to escape the house and take him.

This gave me some quality one-on-one time with my son. I feel bad for my non-miso children. Their quality of life is suffering. They are forced to make compromises without any consideration from their younger brother and are subjected to his fits at the slightest trigger.

My eldest son seems to keep the rages at bay by posing a threat of bodily harm to his miso-brother. Fear seems to help keep Misophonia at bay. The fear of public exposure, or an older brother that could (but has not yet) pulverize him, seems to help Colin control some of his trigger-attacks.

Last night was another rough one. Colin was up and restless for most of the night. After an extended bumping and thumping and shushing ( back & forth between me and my son), I opened the door to check what was happening. I was met with the angry glare of a naked, headphone-wearing child standing by the sink draped with his ever-present blanket. I surmised he was trying to sleep standing up.

This latest episode may have been triggered by my 16 year-old who was up late studying until after 1:00 a.m. I am not happy that my high school junior was up so late and ignored my request to get ready for bed before 10 p.m.  or 11:00 p.m. at the latest.  This chain-reaction caused me to have gotten less than 3 hours of sleep last night. Something has got to give. My nerves are shot!

"D" is for Doctor

Monday is our scheduled visit for a full exam at the pediatrician. We hope to hear back today from the Neurologist my husband contacted yesterday. Our pediatrician said he would be able to make a referral(s) next week after Colin's exam which might get us help quicker.

These days nothing seems to be happening quick enough.

Color me Desperate!

We are a work-in-progress!

Trial & Error

 

 Post to Parent Support Group 9/18/13

Last night, I had a chance to have a nice conversation with my 15 year old non-miso son. I asked his opinion as to how to get his younger brother to try Neurofeedback.

Without hesitation, the answer was, "We should just tie him to a chair and gag him. Then we hook him up to the equipment and let him watch a video with it."

I had to smile. Don't think I had not thought of that. My O.T. friend would be horrified!

File this under #BadIdeas that you'd like to do!

 

Lisa: I like the way you think! Trying to get a kid to take his medicine is not always easy but imho NFB is like the best meds ever - because it is good for assisting you in reaching peak performance no matter where you start out. 

Maybe if you could convince the rest of the family to use the equipment - put up a rotating schedule on it - Kid 1 is Monday and Thursday, Kid 2 is Tuesday and Friday, Mom is Wednesday and Saturday and Dad is Saturday Tuesday and Thursday or something like that and just ignore him and you all do it for a few weeks without asking him to get on the schedule and in the meantime chart your results and discuss openly without suggesting he try... 

Our NFB guy has a chart we use to track our improvement in certain areas over time - so you all could be analyzing your charts and seeing if you sleep better, concentrate better etc and list focus in sports - like able to concentrate on pitches better or what have you and then chart improvements - maybe he would be attracted to that. ESPECIALLY if there are things that both you that you are able to say - wow - I am not bothered by XYZ as much - and then over time - WOW I do not even think about XYZ anymore...

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Last night it was my turn to pick up my two younger boys from swim practice. I grabbed the giant sponge on the way out the door and tossed it in the back of the mini van. When I got to the Y, the boys were out front waiting for me. Both were in a good mood. Colin was unusually chatty, and dare I say seemed like his old normal-self. He pointed out a guy in the parking lot playing a violin and that there was a full moon. (Maybe the moon has magical powers over Miso?).

When I stopped at a light, I glance back to look at Colin. He was in his new usual spot, the way back, hunched over a folded-down seat. As if he knew what I was looking for, he said, "Mom, I am not squeezing that sponge. I know why you have it." 

I was prepared with a "white lie". "Really?" "It's been cold in the mornings and I thought I could use it to wipe-off my windows and side-mirrors with it." That seemed to end that conversation but I couldn't help but wonder if my husband told our son about our theory. (I found out later he did not). I am totally keeping the sponge now to wipe off the condensation on my van. Ergo, I did not lie!

What hope I had that my son was "coming around", was short lived. Back at home I realized he was engaged and on friendly terms with his brother but continued to have negative feelings toward me. I was comforted by the fact that they were not as animous as usual. I was able to use that to my advantage when at 10:00 p.m., I wanted Colin to get ready for bed. He was watching t.v. in the basement and I plopped down at the other end of the pit group. When my son realized I was not leaving, he retreated and went back upstairs to his "B&B". I did not have to say a word. 

I will take Lisa's advice and try to get my middle son to use the NFB equipment with me without suggesting our Miso-son try it. I fully expect that Colin still won't soften his stance but it is certainly worth a shot. At this point we have nothing to lose. 

We are a work-in-progress!

 

 

Time Keeps On Slipping

On the way to work this morning, "Fly Like An Eagle"  an old Steve Miller Band song popped into my head.

" Time keeps on slipping, slipping, slipping into the future... "

I feel like we are racing against the clock to find help for my son. The same ticking clock that fills my son with rage and anxiety. As with time, I also feel my son slipping away. We are losing him to Misophonia. The hate he has for my husband and I appears to be fairly constant now. It's been weeks since there have been any hugs or apologies after a triggered fit.

Colin is able to have short bursts of civil conversation but if we look at him for too long and catch his glance, he starts to glare. My son narrows his eyes into a squint, as if he were focusing them to shoot laser beams. Laser beams that obliterate. Laser beams of hate.

Last night Colin had a cross country meet after school. He is doing well and tied his personal best from the week before, earning him praise from his coaches and other parents. It is amazing how he can seem so normal around others. Hubs was waiting at the finish line where our son looked content until he caught his dad's gaze. Then came the laser-beam shooting squint.

The Experiment

In continuing with our "Sponge Experiment",  Hubs decided to leave a mouse pad on the passenger seat for the ride to school. That did not seem to help. The giant sponge made it's way into the back of my car when dad took Colin to his Tuesday evening piano lesson. The results were a bit inconclusive as our son is out of view when hiding in the back of my van. At least he was fairly calm.

We have not told our son about our experiment and dare not offer any possible coping mechanisms in fear he would summarily dismiss them.

Expanding Readership

I mentioned my blog in my Parent Support Group and offered to private message a link to anyone interested. There were a handful of moms that responded. I also emailed a few family members a link. This way I don't have to repeat myself as often. Every time I retell one of our nightmarish episodes, I re-live it to some extent. I find it therapeutic to put my stories in a blog, where I can blow off some steam and then move on.

I am hoping more parents will take up blogging and share links with me. I find this form of media easier to follow individual stories. I find myself constantly scrolling to see if I can find reference in a previous discussion before I ask a question that may require someone to repeat themselves. I also worry about sounding like a "broken record" when I repeat certain aspects of our family's story to newcomers.

Many parents expressed concern about the safety of having a blog. The truth be told, the biggest danger is that of spammers. Currently the majority of "hits" my blog is getting is from spammer sites. If you have a blog and are curious about why the sudden burst of traffic from sites like, "vampirestat.com", first Google it to see why, do not click the link to that site. Besides spammers, unless you promote your journal or make comments on other similar blogs, you won't have much of a readership. I also would advise steering clear of controversy, not sharing your full name, exact location, or where you work.

A person faces more danger on places like FaceBook where your real identity is known.

Well I'd better get to work. Time is slipping, slipping, slipping....

Time to Fly Like An Eagle!

We are a work-in-progess!

Navigating the Maze

Last night our pediatrician returned my husband's call from earlier in the day. Part of our game plan, was to take my radiologist-brother's advice and start with a physical exam. We know that my son's hearing is fine. It's been six months since Colin's last check-up and we want to see if anything has changed physically.

When hubs first called to arrange for an appointment, the nurse spoke to the doctor and called back. We were advised to take my son for a full psychiatric exam. I was furious when I heard that!

I had spoken to the doctor briefly, a few weeks back, during my middle son's yearly exam about my youngest son's disorder that popped up over the summer. Our conversation was hurried due to a packed schedule, the doc never heard of Misophonia, scribbled a few notes and promised he would look into this disorder.

Fortunately hubs had our pediatrician call us directly. He reluctantly set up an exam for next week. We were also advised to "dial it back" a bit and let the professionals make their own diagnosis. We've been trying to find a Pediatric Psychiatrist with no luck and our doctor thinks the issue is telling them about "Misophonia".

Keep On Keeping On

Hubs also had a conversation with our Cognitive Behavioral Psychologist. He is the one that put us on the path of Misophonia. Last week my husband had spoken with a Neuro-psychologist, who had not heard of this disorder, and she had promised to look into it and touch base with our psychologist. True to her word she had a conference call with our psychologist. They were both concerned about the lack of knowledge and treatment options for miso. My husband briefed the doc on the steps I was taking. We were advised we are doing the right things and to keep on the path.

My Part of the Plan

I had contacted the Department Of Psychiatry at The Ohio State University. When I explained my son's condition, I was advised to contact Children's Hospital Department of Neurology. I was also given the phone number for the university's Neurology department.

I spoke with a front-desk staff member at the Pediatric Neurology department. She had never heard of Misophonia and listened intently as I went into a detailed description. I made sure that they treat S.P.D.s (Sensory Processing Disorders) which they do. I was promised a call back after a discussion with the doctors to see who (or what ) would be best option for my son.

I am hoping to hear back today.

I feel a bit like a hungry lab rat in a complicated maze. I will hit a bunch of dead-ends, get caught in a few loops, and bang my head a few times. However, I will not give up until I find my piece of cheese. I will not dial it back! I can not sit back and let dispassionate professionals control our future. My son is in pain and our family is in crisis. Misophonia has upended our lives.

I WILL NOT "DIAL IT BACK"!  I WILL FIND MY CHEESE!

Hell hath no fury like a mother on a mission.

We are a work-in-progress!

Small Breakthrough?

 Post to Parent Support Group -  9/16

Just got off the phone with my husband who called to report a possible breakthrough of sorts. My son is usually tense and telling his Dad to "Hurry!" " Go Faster!" on the ride to school. Today, along with his trombone & backpack, he had to bring some giant sponges to class for part of a project. He held the sponges in his hands and may have been squeezing them slightly.

Apparently the sponges made all the difference. He was relaxed and able to have a conversation with his Dad. My husband will buy a few more sponges for the car to see if this works tomorrow.

Has anyone had luck with stress balls or giving your child something to squeeze? #PossibleBreakthrough

Leslie: That used to help my daughter. IDK if it still does but it was a part of her 504 plan in school.

The Rollercoaster Ride Continues

Last night when I got home from work, my husband and Colin were gone. Dad had taken Colin for a hair cut and then to the grocery store. All was well until they passed a neighbor mowing their lawn down the street.  Hubs was pleasantly surprised at how well the haircut and grocery trip went and remarked at what a different child he is once inside our front door. It also didn't help matters passing a trigger (the lawn mower) right before they hit the driveway. Colin bolted into the house and rushed to the bathroom.

After my son calmed down he came out, turned off the fridge and sat down to his dinner. My husband had left to drop my middle-son off to watch his high school football team play. I was half-asleep on the couch in front of the t.v.

The television was tuned to Access Hollywood. Colin got up without saying a word and started to change the channel. Much to my amazement he chose to watch Washington Week with Gwen Ifill. The discussion centered around Syria. I was surprised to see my son engaged and making some interesting commentary.

When the program was over, he excused himself and went to his "room" to relax. When I went to check on my child a little while later, I found him in the dark, leaning over the bathroom counter watching a video on his I-pod. I thought this was banned until he tried Neurofeedback. Colin explained that Dad let him have it back as a reward. I decided to give him a break.

I let an hour pass and checked again. My son was still in the dark, hunched over his device. I decided this was enough and took the I-Pod away. He was not happy. Shortly afterwards my husband came home and I got the real story. The I-Pod was not a reward, it was to be used for a school project and nothing else. Tired and frustrated, our son went to sleep early.

Around 1:00 in the morning, I heard Colin rustling around a bit. I was not concerned but hubs came down. He turned on the light to see what was going on. This set off a 30-45 minute screaming rage. I sent Dad back to bed and our son finally calmed down. A short while later, I heard the opening and closing of drawers and then the sound of the electric toothbrush. By the time our son was settled, it was just before 2:00 a.m. when the quiet was pierced by a series of beeps. This is the magic time our Sharp Atomic Clocks readjust. That damn beeping prompting a series of pleas to "Stop it!".

We have got to get that fixed!

Saturday 

 The morning and early afternoon were peaceful, until our next door neighbor started to mow his lawn. The rages were on again. My husband and son engaged in a battle of  "the door". My son was on one side, pushing to keep it shut and my husband on the other side, pushing to open it.

Sadly we had a casualty: the wall across the hall from the door.

In an effort to keep the door closed, my son had pushed with a burst of strength and took his dad by surprise. My husband's foot slipped backwards and his heel smashed a tennis ball sized hole into the drywall.

I had enough and left on a mission. I went to visit some local hardware stores to find a fix. One of my crazy ideas was to buy a small tool-shed that we could assemble in the basement and add some insulation to make a quiet room. I gathered up some information at Menard's and then went on to Lowe's.

I spoke to the manager of the lumber section and explained our situation. As luck would have it, he had helped sound-proof rooms for family members and helped make a "Sunshine" room (quiet bedroom) for an autistic niece. We discussed some ideas and he suggested rather than hastily buy materials, I should bring my husband in.

Meanwhile back at the house, shortly after I had left for my mission, the lawn crew arrived at the house on the other side. This was the source of the six hour rage last week. Hubs and son barely made it to the car when the big machines were started. They drove to a nearby school parking lot to wait it out. It was not fun for either of them.

I was able to coax my husband to go back to Lowe's tonight where he was able to meet with the lumber manager. We have a better idea of how to tackle a safe room in the basement and have decided to make this our priority.

It will not be quick or simple. But nothing is these days.

We are a work-in-progress.

It's Friday!

I awoke today around 4:45 to rustling from the "B&B". I get up and look around the corner to see light under the door. My miso-child is awake. I wish I had a camera installed so I could see what is going on. Colin fell asleep last night while doing homework in his new humble abode. I'm guessing that he is up early to finish it. I wait 10 minutes before trying to check in. I softly knock and then open the door a crack. My child is standing by the sink and gives me a glare. I gently close the door. There is nothing I can do that won't agitate him.

While yesterday morning seemed to get off to an ominous start, it was not a bad day. Colin made it to school and then cross-country practice after school. My husband picked our son up, took him home for a short time and then onto swim team practice at the Y.  Hubs stayed a short while to observe. The car rides are a bit unsettling, but amazingly, our miso-son seems to transform into a happy child when he hits the water.

After making sure Colin was doing fine, my husband went to Home Depot to buy a slab-door for the doorway between the kitchen and dining room. We are hoping a heavy, sliding door will help abate the humming sound of the refrigerator. This should eliminate at least some of the need to turn it off when Colin is nearby. We are hoping he can have his meals in the dining room in peace and quiet. The door will take some time to prep, paint and install. If all goes well, we will add another door to the other opening between the kitchen and front hall. 

Upon coming home, Colin turned off the fridge and had dinner while my hubs and eldest son brought in the heavy slab from the mini-van. I was in the dining room on my laptop and happened to glance up at my son while he was opening the refrigerator door. He squinted his eyes and glared at me. AWESOME. He hates me now.

As I was getting ready to watch the 10:00 news from my current sofa/bed in the family room, I passed by the "B&B" and noticed it was dark. I had Hubs check and he found Colin standing up, slumped over the sink counter, sleeping. He coaxed our son into a more suitable position on the floor.

We are curious why our son sometimes tries to sleep standing up. I did an internet search and found that it is impossible to get good R.E.M. sleep this way. When truly asleep, humans relax their muscles, making an upright sleeping position unlikely.

I am starting to wonder if my son is not human anymore. Has he been replaced by an alien clone? That would explain a lot. Nothing else seems to make sense right now......

We are a work-in-progress!

Happy Thursday?

Yesterday went fairly smoothly. Other than my brief irritation and rant, I started to feel like we are settling into a "new normal".  I worked late, until 7:00 p.m. due to being a bit backlogged. I am a bit short-staffed and my college-student part-timer was not able to come in until 3:30.

There was a meeting at the high school for parents of Juniors. My husband went after he dropped all three boys off at the Y for swim team practice. He reported a slightly "bumpy" ride but successful "launch".

I was the 8:00 p.m. return trip chauffeur. My eldest rode shot-gun and as usual felt the need to keep control. He would reprimand Colin when his "whining" was audible. No matter how many times I remind my 16 year old that he did not give birth to his brothers, he still acts like a parent. Last night I gave my eldest the nickname of Brother-Mother.... or was it Mother-Brother... ?

When we arrived home from our 5-mile trek, I jumped out of the car and flew into the house to turn off the air conditioner and gave the "all clear"!  Upon entry, Colin was immediately panicked. Dad had his headphones in his car. He called his dad who was 5 minutes from home. Colin turned off the refrigerator and flipped the note to "Off". (we now have a sign system for the fridge to avoid unintended and prolonged outages.) When my husband arrived, Colin grabbed his headphones and turned the fridge back on. The rest of the evening was not noteworthy. I call that a good day.

Thursday Morning

I awoke to hear some rustling around the corner in Colin's bedroom/bathroom that will from this day forward be known as the "B & B". I looked at the clock. It was 6:19 in the morning and the latest he ( & I) have slept in a long time. ( Hubs attributed that to the combination of cross-country then swim practice after school). I looked to see if there was any light coming from under the door (it was dark). I slipped in another note  "Colin, Happy Thursday! I hope you have another good day. - Mom" and went upstairs to get ready.

I was careful to be quiet and use as little water as possible; the older boys were not. In addition to faucets on full blast and flushing the toilet, they were running the bathroom fan. After a heated confrontation that my husband had to help with, the fan was silenced. The "B&B" is directly below the two upstairs bathrooms. There is no way my miso-son did not hear any of this.

After getting dressed and ready for work, I went back down to find my note pushed into the hallway. This was not a good sign. A few moments later, Colin emerged, wrapped in his blanket, headphones on, eyes a-blazing and nostrils flaring. This most certainly was not a good omen.

He flew to the fridge, turned it off and angrily gathered up his breakfast. I looked at my husband and made my exit. Now in the safety of a quiet office, I make my blog entry and wait, with nervous anticipation, to hear how this morning's launch will go.

*fingers crossed*


We are a work-in-progress!!!!!

Tired of Explaining

 Post to Parent Support Group, 9/11/13 - 10:57 a.m.

Just got off the phone with a friend that was checking in. How many of you get frustrated with well-meaning advice? While I think my son may be able to have more control at home, I do not think we are being "played". And no, I don't think we are parents who "do too much" and let the "quality of our life for the rest of the family suffer". #TiredOfExplaining Grrrr!

To give context to my rant, the conversation was started by a simple comment how I hoped my husband would remember to water my garden later this morning. I had mentioned that the sound from the water pipes carry into my my son's current sleeping area and we are trying not to agitate him in the morning.

 I left for work early this morning. I had a busy day ahead. Before I left, I slipped a note under Colin's bathroom/bedroom door. " I <3 U. Have a nice day! - Mom".  I emailed a reminder later that morning for my husband to water my garden. We are trying to minimize the water use in the morning as the sound from the pipes carry into Colin's current sleeping area.

This was the first day I did not call at 9:00 a.m. to see if we had a successful "launch" to school. I figured no news is good news. My husband had a morning phone interview and I did not want to distract him during his preparation.

Around 10:00 a.m. my friend David called for his daily week-day check-in/bitch session. He is a fellow small business owner in a similar line of work.  It's been fairly hot the past few days and I happened to mention that I hoped my husband would remember to water my plants. I explained about the change I had to make to my morning routine. 

While David, knows about my son's strange disorder, I try not to burden my friend with a lot of the details. The mention of avoiding a morning trigger launched a conversation I did not want to have. Sentences prefaced with " I don't mean to sound critical...." or " Don't take this the wrong way but..."  peppered the discussion with a series of questions and well-meant advice.

I found it ironic that my childless, gay friend was giving me parenting advice. This coming from a man whose main employee is a drug addict who works to earn cash to pay for his next fix. Don't think I didn't draw a parallel. Yeah, I went there. In the nicest possible way. Awesome tactic to end that conversation. Who's the enabler now??!!!

I don't get angry but I find it very frustrating. I get tired of constantly explaining and defending the way we are dealing with our Misophonic Child. Unless you are dealing with this daily, I don't expect anyone to understand. Misophonia is NOT a choice. Reactions to trigger sounds are not some clever ploy for a child to get their way. This is a neurological not psychological disorder that brings out the primal animalistic  fight or flight behavior when triggered. NOT A CHOICE!

I think I need to start recording some responses to the standard questions and advice I keep getting from friends and family. This way I could just push a button to give my pre-recorded answers. 

I can't help but wonder if this is some kind of karmic payback for my own well-intentioned advice to others over the years.

We are a work-in progress!

Relative Calm

Today has been the calmest day so far during the past few weeks.

I woke up at 5:00 a.m. to hear my son rustling around. I've been sleeping on the couch downstairs so I can monitor the goings on for now. Colin fell asleep early last night and I suspect he did not finish all the school-work he wanted to.

I got up to see the light under the door to verify he was awake. We have an unspoken understanding that there are times he does not want to talk. I wrote a note: "Colin, I love you. That is all. - Mom" and slipped it under the door. I heard some drawers being opened and closed but no ripping or crumpling of paper. I took that as a good sign.

I had to leave early for a 7:00 a.m. dentist appointment. Colin passed me in the hallway to turn off the refrigerator and grab breakfast. (Pop Tarts today!). I've learned not to make eye contact or to say a word. I arrived early to my appointment and had a chance to chat with my dentist before the rest of the staff arrived. I was able to brief him on my son's Misophonia so that the office is prepared next week when he comes in for his cleaning. The dentist listened intently and later made notes on Colin's charts.

When I came back home at 8:00 a.m., I was shocked to find the air on full blast, ceiling fans blazing and the older boys' room doors open. I was about to voice my concern when my husband informed me that Colin was insistent that he be dropped at school at 7:15 a.m. There was a group project and some other work that he was falling a bit behind on and his STEM teacher told him he could come in early. I was a bit surprised as I thought the school didn't open until 8:00 and that was for detention. My husband told me that they arrived a few moments before the school principal and she let my son in.

I decided to call the principal when I arrived at my office to find out if my son was allowed in that early and to make sure everything was o.k.  This also gave me an opportunity to let her know what was happening at home with Colin so we have another set of eyes making sure he is surviving the school day. We had a nice chat and I am comforted to know that the school will try to help in any way they can. She even suggested that my son could wear headphones and listen to music if he needed to block out sounds such as the HVAC system. I assured her that my son didn't want to draw attention to himself and won't wear them. I told her that right now I just need some "spies" to alert me if there are any issues we need to know about. I also made sure the school administrator knew that I was grateful that I could count on their support. Many other parents of Miso-children are not so lucky.

Colin had an away cross-country meet and I picked him up at 6:15 p.m. He has a new way to ride in the car. Dad let him lay in the back of my van where I would normally put my groceries. He found that if our son lays on his back and looks up at the sky, he is not as traumatized by the ride. Against my better judgement I allow this.

The ride home was not so bad.

After a quick shower and dinner, it was off to piano lessons. Another car ride laying in the back. He arrived in good spirits. The lesson seemed to go well and the ride home was much better than expected. I made sure Colin knows that I am not comfortable with him riding this way and he assures me that he is safe and that no one will see him.

I tell myself that this is much better than when my son is riding in a seat and stressed. He has taken off his seat belt before and tried to ride standing up which is much more dangerous. For now, until we find a better solution, I guess I'll turn a blind-eye for short distances.

In other news, Hubs changed the door-nobs in the 1st floor half-bath/make-shift bedroom today, to ones that don't lock. Colin was not happy but after some initial banging around, he settled in.

We are a work-in-progress!

If I Could Turn Back Time

Yesterday was a relatively calm day. The big blowout on Saturday seems to have kept the "rages" in check. My son now knows I'm willing to play hard ball and take away his "pacifier" (the headphones).
We had breakfast together after he turned off the refrigerator and then watched "Sunday Morning". After his failed attempt to negotiate unlimited media for keeping his headphones off while using currently banned electronics, he retreated to his usual spot, the downstairs half-bath.

In the late afternoon, my husband volunteered to take Colin to a movie. They decided, by process of elimination, to see the new Percy Jackson flick. Before they left, Colin had me purchase some piano sheet music for "Someone to Watch Over Me" by George Gershwin and sat down for a short time at the piano with it. We have a piano lesson tomorrow and I will attempt to take him there after his cross-country meet. I am concerned about the 5 mile journey in my car.

The next few hours, with Colin out of the house we were able to run the air conditioner. My  middle-son and I both took showers as well so that the water heater would not be activated later that evening. I had a chance for some rest and quiet reflection.


Chilling out in Colin's new unused loft-bedroom, enveloped by a bean-bag chair, I reflected on our battle with Misophonia. It is hard to believe it's been less than two months since the Psychologist confirmed what we were facing. These past several weeks have been heartbreaking as my loving child morphs into an angry stranger. 

Colin is my third son who was born right before I turned 42. He is my baby and we were extremely close. My brother-in-law affectionately nicknamed Colin my "Tumor" because he was always by my side, attached at the hip. Earlier this year I had been trying to have him "dial it back" a bit with the constant hugging, kisses and excessive messages of love. My husband and two older boys have been pressuring me to discourage this behavior.

Up until we took him to the psychologist, Colin would constantly repeat " I love you , Mom" , "You're the best!" especially when I was driving with him in the car. I would tell him that I knew this and I loved him too but he was starting to freak me out. I told him that I worried that he kept repeating these love messages as if he was trying to convince himself. I now wonder if this was really the case. Was the car triggering thoughts of hate? I may never know but I miss those hugs and messages.

I'd give anything to have that boy back again.

Breaking Down

 Post to Parent Group 9/8/13 - 7:30 a.m.

We are closer to bottoming out. We were advised  to take away electronic devices and tv until my son tries Neurofeedback. He went into a rage when he was denied playing a video game in the basement with his brother. My son has a steely resolve and is dead-set against NFB and any other treatment. He went into a rage and locked himself in the bathroom. I did the unthinkable. I took away his headphones. He had been raging for an hour or two and banging things around when he yells out to me that he doesn't need food, he'll just drink alcohol. *

That was it! I jimmied the door lock and busted in to find him holding some foot spray and a can of anti-bacterial spray. He was ready to "defend" himself against me. I took this "weapons" away and he slapped me. I reached my limit and ripped his headphones from his head. I gave them to my 15 year old to hide.

We endured hours of the most horrible hate-speech to date. After several stressful hours and the promise of not uttering a peep, he was finally given his headphones back. I hate to torture my son but we are at our wit's end. We prefer the reward system which is hard to do when my son had everything he wanted and could not be bribed. I think he slept solid all night and I am preparing for another "fun" day. We are still working on getting an appointment with a Child Psychiatrist. My son can not be reasoned with at this point.

The noise-dampening headphones have become a drug that my son is dependent on and wears them non-stop in the house. Have any of you had to take away headphones or earplugs? He is able to go out in public without them for fear of embarrassment, yet I feel like a horrible person for torturing my son.

Partial Conversation thread:

Theresa: I think you are doing the right thing.

Miso Mania Mom:  Thanks! I needed that. By the way we are enjoying a morning truce over breakfast and watching Sunday Morning on CBS

Theresa : Allright!
 

Miso Mania Mom: Kid is starting to crack. He took his headphones off for a bit and approached me with a deal. He suggested that he could leave his headphones off while having unlimited use of all electronic media. I said nothing. When our show was over, I had him turn off the t.v. He said "Mom, you never answered my question." I replied softly that he knows what I want and he is not able to discuss it. I then calmly walked away. I will not cave. I will not cave. I will not cave. Unless he is receptive to getting help, I can not compromise here..... Time to "Keep Calm and Carry On"

Jaimie:   hearing your struggles with your son scares the heck out of me as my son also struggles with miso and he is coming into puberty. But furthermore, you are really doing a great thing dealing with it while realizing this isn't something he controls. As a person with Miso for as long as I can remember, he is going to have to come to the realization that there will be situations he is going to have to grin and bear it because like any disability, there are just instances he is going to have to adjust for. Having loved ones that do understand, and having those opportunities to be in a sensory-friendly environment to de-stress afterwards is most important. This was a long-winded way of saying you are doing a fine job, and supporting him while preparing him for the outside world is exactly what he needs.

Laura: Gosh I am just so sorry you had to deal with an episode like this. All too familiar to me. My son just turned 16 a few weeks ago and this past year has taken a toll for the worse. Our voices are his worst triggers and we can no longer talk to him. We did try Neurofeedback and I felt it help keep him calmer but no change in terms of our voices lessening as triggers. We stopped after about 7 weeks and looking back, we should have continued. He didn't like it but i do feel it calmed him. We also tried Nuerontin and he doesn't like taking drugs because he is fearful of side effects so we were unable to get him on a dose high enough to potentially help. They say it is supposed to be a nerve relaxer so please do let me know if you find any relief. Things do seem to be "worse" during the height of puberty when it comes to this disability. I agree that making a deal with him might give him more of a reason to try Neuro feedback. I hope today is a better day for all of you! 

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  Additional Notes:

The hate-messages are getting more disturbing and we have gone beyond "Just crawl into a hole and die!' to adding threats of stabbing and killing us. (I've removed any sharp objects from the bathroom that could be used as a weapon but don't think he could or would hurt us... yet.) 

Colin also has been slapping himself and yelling "Stop hitting me, Mom" to make it sound like I am beating him. He also accused me of doing other horrible things while I was in another room. If anyone was at  our front door they would  think we were abusing our child. Fortunately I have a witness, my 15 year old son.  I also used Colin's camera to video tape about 10 minutes of his fit (more for sound as he was off-camera for most).  We need to have something to show doctors as he will most-likely not rage like this in front of them.

I think we are EXTREMELY close to taking my son to the hospital, although I'm not sure what good this will do.

 

Morning Respite

I am enjoying some quiet-time this morning. Colin had a cross-country meet this morning and has been gone since 7:00 a.m..  My eldest son who is 16 had to be at his life guard job at 9:00 and my 15 year old middle son is still sleeping.

I am able to run the laundry and dishwasher while I have been checking in with my FaceBook groups and now blogging. It's ironic that being able to perform basic chores that I would put off are now a big treat! A few months ago, we would not have run the dishwasher until it was really full. Today I ran a half-load. When the opportunity arises, you must jump and take advantage.

Last night my husband spoke with a Child Psychiatrist in California who is a family connection. He has never heard of "Misophonia" but  made a couple of interesting points.

1. Thanks to the power of the internet, we will find out about many more little-known disorders.

2. He predicts that Neurofeedback will eventually cut pharmaceutical use in half. (EEG is his preferred method)

It is important that we get Colin started on treatment. I got "hooked-up" last night for a short trial to see if I could get my son to watch and take photographs. He was not in the mood and hid in the bathroom. I can't see why Colin wouldn't mind NFB. He would have a chance to watch a video of his choosing. The only part that is less-than-desirable is that goop is used to attach electrodes to 3 places on the scalp which requires hair-washing afterwards. 

Our psychiatrist friend suggested that we take away all electronic devices ( camera, i-pod) and t.v. until our son starts Neurofeedback treatments. 

It appears we have an "interesting" weekend ahead. Stay tuned......

We are a work-in-progress! 

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Afternoon update:

Glad I had that morning respite! My Miso-son came home from  his cross country meet and was immediately triggered. It's the weekend, the weather is delightful and the perfect time for our neighbors to mow their lawns. The sound of these grass-devouring beasts have set off some of the worst miso-attacks to-date.

Our across-the-street neighbor decided to mow her grass which set Colin howling into the bathroom slamming the door. He yells the most DELIGHTFUL epithets at us. "I hate you", "Go crawl in a hole and die!",  "Stop hurting me!" "Why are you doing this to me?" and had added a few four-letter words to his repertoire. Anyone within earshot of our front door might think we were abusing our child.

What to do? What to do?

Do we ask our neighbors to quit mowing their yards and risk a city-code violation?

Wait! I have a better idea. I could anonymously gift each of our neighbors with a goat. They wouldn't need to ever mow their grass again.

PROBLEM SOLVED!.......Not really. :(

AAaaarrrrghhhhhh!!!!!!. Does anyone know if there is a pirate emoticon? If so, please tell me how. I have a feeling it will come in handy in the days to come.