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.