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 Has he been replaced by an alien clone?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.