T.G.I.F.

Thank goodness it's Friday!

Over the past week, I've learned to take things day by day. Colin seems to trigger more easily these days. It is a given that his older brothers' morning bathroom-routine will set him off. The noise from the bathroom fan and water running through the pipes are major irritants. The older boys and I leave the house an hour or so before my miso-child needs to leave for school. This gives Colin time to chill-out before the harrowing less-than-one-mile drive with Dad to the middle-school.

I think my husband is finally getting used to my 9:00 a.m. phone calls to make sure we had a successful "launch". I can not have another day like last Friday. My nerves can not take it. I go to work feeling anxious and with a heavy heart. I feel a great sadness knowing my child is in crisis with a deep pain he will not share. He is still in denial and we are waiting for the acceptance-phase so that we can begin to get him help with this terrible disorder.

Last night I took Alex to his piano lesson. I usually sit and watch but I opted to stay upstairs and chat with our teacher's husband. I wanted to give an update to share with his wife.  I don't know how Colin can make it to his lesson when a car ride has become such a big trigger.

My youngest brother called last night to see how things were going. We had a nice chat. Mike opened up a bit about his struggle with (undiagnosed) ADHD as a child. My brother is now being treated for ADD and Depression as an adult but wishes he could have gotten help as a child. He assured me that Colin will eventually learn to cope and would love to speak with him in person, perhaps at Thanksgiving when he comes in from Chicago to visit.

When I got off the phone with my brother, my husband was going to attempt to hook me up to the NFB equipment so I could see how it worked. My hope is that Colin can see that it is harmless, perhaps even fun, and we could arrange to have the O.T. come back to get him started on Neurofeedback treatments. Unfortunately it was getting late, my son was agitated and there was no way he would venture into the same room as us. We decided to postpone our test for one more night.

By the time I got ready for bed and came back downstairs Colin was asleep on the bathroom floor. When I peeked in, he was sleeping on some big pillows that he has not used in quite a while. Hubs explained that he found our son using his backpack for a pillow and wanted to make him more comfortable. I almost warned him not to do this but I thought I'd wait to see what happened.

Shortly after 5:00 a.m. I heard a whimper from the bathroom along with the opening and closing of the door. I got up to find the big, soft fluffy pillows in the hallway and made a mental note to tell Hubs not to do this again. I softly inquired if my son was o.k. to and he asked me to just leave him alone. I said o.k. and went back to my sofa/bed.

Needless to say, at around 6:30 a.m. when the older boys got up and started to get ready for school, the drama with triggers got into full swing.

This is getting to be a bit like the movie "Ground Hog's Day". We are a work-in-progress!

Must Save The Ice Cream!

Last night we had our first casualty in the battle with Misophonia;  the refrigerator,  protector of food and source of one of Colin's many triggers. While the low hum of the fridge's motor is barely audible to the rest of the family, my 12 year-old son has a hard time eating at the kitchen table or hanging out in the family room with out being bothered

To help accommodate our son, for the past few weeks my husband has been turning off the fridge for short periods of time. This allows my son to eat at the table and be in the kitchen for an extended period. Colin is also able to switch the refrigerator on and off. There have been a few times the fridge has been off for as much as six hours.

I had come downstairs last evening after a long strategy-session over the phone with my brother in Chicago who is a Radiologist. I wanted to update him on our situation and get a medical professional's view of MRI's and other diagnostics. I also wanted to know, "What would you do if this was your child?"

My eldest son and husband were playing C.S.I. over a moldy take-and-bake pizza and looking for other "food-victims" of "global warming". For the last day or so, we had been dealing with not-quite-cold milk and ice cream that was a bit soft. After a thorough investigation, it appeared that the heating coil that prevents over-freezing, had failed and our food was enjoying 60 degree temps.

I sprung into action, offering my cooler and freezer at work as well as suggesting we take my mini-fridge home to store bare-necessities until repairs can be made. I went to help load my mini van when I found my sleeping child in my vehicle. He will sometimes retreat to my van when it is parked in the driveway so that vital machines (air conditioning, water heater, laundry) can be run.

My husband relocated Colin to his new sleeping area for the past few weeks, the downstairs half-bath. For some reason, he prefers the cold linoleum floor to a couch or bed. We then began our food relocation project. We now have a tiny refrigerator in our garage and the big one in our kitchen is on life-support until we can get new parts.

On the bright-side, last night was the best Colin has slept in weeks, I now have all sorts of good eats at work and have saved the ice cream! We also learned about a potential pitfall of frequent switching off the refrigerator. This has made us more cautious of how we handle the water heater in the basement.

We are a work-in-progress.

Mother of the Year!

 Post to Parent Group: September 2 at 9:23am

WARNING. Long Rant #2: I am one step away from Children's Services!!!!

Last night I took my son to the movies so my husband could run the air conditioner. The movie complex is between 4 - 5 miles from our home. I was a bit concerned as the car ride is a trigger and didn't know how my son would do at the theater. He assured me he would be fine.

 As we parked, I told my 12 year old that I needed a favor. He loves photography and I asked him if he would photograph me trying out the Neurofeedback machine later so I can show people in my group(s) how it works. He said "NO WAY. I'm not going near that machine" (he's afraid this is a way to psychoanalyze him and won't let me explain.) I dropped the subject and we proceeded to the ticket window. 

The original movie we were planning to see was "The Butler" but he really wanted to see " We're the Millers" which is rated R.  I made a deal that if I would let him see this totally inappropriate movie, he would take the pictures for me later that night. On the way in to the movie, we saw one of the police officers who helped look for my son the day before. There was an awkward exchange of "Hellos" as we entered the movie where he was the youngest child there.

 After the movie we realized we didn't eat dinner (it was now after 9:00 pm.) and decided after I got gas for the car, we would go to Wendy's. 

Almost immediately the car ride started to trigger my son. I barely made it to the gas station. Change of plans! There were several fast food places in the same center as the gas station. My son chose Tim Hortons. We hung out in the parking lot where he had 2 donuts and a fruit smoothie for dinner (AWESOME nutrition!) I just had a fruit smoothie. 

After the final 2 miles home, my son retreated to his new bedroom (& safe place) AKA the 1st floor half-bath. This is shaping up to be a contest as to who will be hospitalized first: the kid or me. I do plan to collect on my deal later today and will post pictures of our NFB system if all goes well. Not sure what movie I will watch. Maybe YaYa Sisterhood?

 My 15 year old warned me not to use a comedy as the system trains you not to react and I might (god forbid) lose my sense of humor. Apparently the movie he used was Zoolander and the screen shrunk at every gag or sexual innuendo. My middle-son thinks I should use a horror film 'cause it wouldn't be so bad if the screen shrunk at the scary parts. Stay tuned......

The Great Escape

 Post to Parent Group: August 31 at 4:41pm

 

Day 1 of Neurofeedback did not go so well.

 

 In an effort to remain truthful to my son. I tried to explain the real purpose of my friend making a home visit with NFB equipment. He right away said he will not do this and went down the basement to watch tv. I let my son chill out until my husband came home an hour before the appointment.

 

 I had my husband take my son out to play ball or frisbee so I could run the air conditioner and vacuum the house. When it was time to come back, my son ran off to avoid the session. I had hubs come home so he and my middle son could learn how to use the equipment. 

 

I went driving around, frantically looking for my 12 year old. As I was cruising around, I saw the police chief who lives in our neighborhood outside in his yard and stopped to see if he saw my son. I explained the situation. At this point I am not 100% sure my son will not harm himself and decided to enlist the police to help find him. 

 

I now have an "elevator speech" * for Misophonia and the police now have his information and photo in their system. We did find my son walking around and got him home after the OT had left but at least we have a system at home and 2 people who may know how to administer. My Miso-son is holed up in the bathroom spewing hate-messages but at least he is safe for now. (until he triggers "the Hulk syndrome in Mom" and all bets will be off.)

* "My son has a neurological disorder called Misophonia. It is a sound-processing disorder where certain noises trigger a reaction similar to PTSD (post traumatic stress syndrome. #MisoElevatorSpeech #therapyavoidance #gettingvalueforyourtaxdollars

Like · · Unfollow Post · August 31 at 4:41pm

Miso Skip Day

Post to Parent Support Group  August 30 at 11:24am

Today is shaping up to be a very challenging day.

 Apparently while getting ready for school, something triggered my son as he was getting his clothes. He stopped what he was doing, stripped and locked himself in the bathroom. He told my husband that, "I just can't do this".

 Apparently the air conditioners at school are also a problem. This is the first day he has skipped school and the first we heard about any triggers at school. I went home and brought him back to my work. (not an easy thing to accomplish) I have my own business and am working alone today. 

My husband has a doctor's appointment and will come fetch our son later in the day. This should be interesting as I can not run the air for now and have him in the middle room with the lights out to calm him. He has a flashlight and some water. I set the air to 90 and warned my son that at some point I will have to run the air. He is letting me run a fan in my office for now. #IneedaXanax

A Glimmer of Hope

 Post to Parent Group August 29 at 9:31am

I am SUPER excited! I just got off the phone with my old friend who does Neuro Feedback. 

She is coming to our house this weekend with a machine that we will rent for a nominal fee and she will teach us how to use it.* This will save us from traumatic car rides to her office. Since my son is so resistant to talking about his issues or accepting help, we are making this appear to be a social visit and the treatment will be under the premise of a tool we are evaluating for enhancing athletic performance ( all 3 of my boys are swimmers). Kay uses a symptom-based, infra-low frequency system that can be used with DVDs of my son's choosing (we have tons!). She has a special-needs child that has made great progress with this method and how she came to use it in her practice. #veryhopeful

* Typically a family must complete 40 sessions in the clinic before a system is allowed in the home. Our family is in an extreme crisis situation and may be breaking some rules.... 

Just Another Brick in the Wall

Post  From Parent Support Group - August 26

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

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

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

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

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

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

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

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

*Rant over and back to work.*