Sunday, April 27, 2014

Let Them Eat Cake!

I waited until Tuesday to speak with our psychologist to report last Saturday's visit. I also wanted to hold off until I had an update from my sister on Monday's therapy session. While my visit was mostly uneventful, my sister had a more interesting story.

Somewhere between the time Colin came home from school and his appointment with his therapist, the lawn crew showed up. Lawn mowers have been the source of my son's biggest triggered reactions at our house. Instead of retreating, Colin went outside and jumped on the trampoline for a while and didn't show any stress at the nearby mowers. We don't know if the jumping helped offset a reaction or if he was able to control his distress for a short period of time.

The prior week, Colin managed to stay in the library with the therapist for 4 minutes of her playing a recording of windshield wipers and was about to leave when he was told he only had one minute left to earn his X-Box time. Despite the fact he acts like he doesn't hear his therapist, he ended up staying the extra minute.

This week, he was unable to last even a minute of the same recorded sound. We theorize he may have been worn out from facing down the lawn crew.

The strategy I discussed with our psychologist for my next visit to the house was that I would attempt to work in my birthday by having cake and have similar visit as the week before.


 Empty Celebration

On Wednesday, I celebrated my 55th birthday. My husband and two oldest boys took me out to eat at one of our favorite restaurants. We had a nice meal but I was a bit subdued. I did not feel in a celebratory mood.

After six months of Colin not living in our home, it feels like I only have two boys. I feel guilty at family gatherings not having my youngest son represented. Only a few close friends and family members know about our youngest son's situation.

My sister called with birthday wishes and as she approached my son in the hallway, he said "No!" and ran away as a preemptive strike before she could ask if he wanted to say "Happy Birthday". We made arrangements for me to come out Sunday for cake.

Not only was I curious how my son would react, I wanted to see how he would handle having left over cake in the house as a reminder of my visit.

Hide and Seek

Today, when I came out there was a lovely chocolate cake with my name on it (literally!). My sister also picked up a cute floral planter. My son, however, was no where to be found. I looked all over the house but Colin was not in all the usual places. My brother-in-law told me that Colin had asked him earlier in the day if I was coming out. He clearly was hiding from me.

My sister and brother-in-law sang to me and we had cake. My nephew came up to join us after he finished up his video game. I ended up having a nice chat with him about his cousin. I am concerned that my son has no one that he will confide in and we need to make plans for next year when he goes to High School.

Colin has a choice between two schools; the public High School near our home or the private, all-boys Catholic school that his brothers go to. Currently my son has indicated to his guidance counselor that he does not know where he wants to go. He had recently received a schedule from the private school and missed the deadline (a week ago) to confirm his desire to attend. I am hoping that his cousin can help Colin make the choice that is best for his needs.

Later in my visit, just before I was ready to go home, my brother-in-law helped me look for Colin. He was hiding under a pile of blankets in a lower-level (basement) closet. His uncle was not amused and sternly told Colin to get up and that he was going to have to clean up the mess he made. After a few moments my son did get up and made his escape out of the closet and ran through the game room and outside in his bare feet.

I decided it was time to go and went to a few places that he might be. I went to the garage and in a loud voice said "Goodbye Colin. I'm leaving!" I also announced my exit in a few other areas he might have been hiding and then left.

I took half of what was left of the cake home (see photo) and left the other half at the house. It will be interesting to see if my son will touch the cake.

I called my sister upon my return home and found that my son had reappeared. He was reprimanded for the mess of blankets on the closet floor and was told to clean it up. I told my sister I would check in with her either Monday night or Tuesday to get a report. I will then call our psychologist to form a strategy for next week's visit.

Time continues to fly by and school will be over in a matter of weeks. Lots to be done!

As always,

We are a Work-In-Progress!

Sunday, April 20, 2014

The Third Time is Not Necessarily The Charm

I went out yesterday for another visit at my sister's house. Due to Easter Sunday plans with my husband's family, I scheduled this week's visit on a Saturday. As per my discussion with our psychologist, we were taking things up a notch. The plan was to try to spend five minutes in a  room with my son. I was to enter the room, say "Hello, Colin" and maintain a 6 - 8 foot distance. As part of the protocol, Colin was given fair warning of my pending visit. Earlier that day my sister had reminded Colin that I was coming out and asked him if he wanted to say hello. He said "No."

While I suspected that my son would leave the room after I entered, I was nervous. I was running ahead of schedule and stopped at Panera to pick up a couple of salads for my sister and myself. My sister was running a bit late and I beat her to her house by a few minutes. I waited for her in her driveway and proceeded to help her unload her car after she pulled in. As Aunt "P" entered the house, she spotted Colin watching t.v. in the family room with a blanket around his shoulders. He knew I was right behind her, threw the blanket over his head to block any view of me and raced down the lower-level stairs.

I finished helping my sister unload her car to give Colin a chance to settle in the game room. I also wanted my sister to be in the house and ready to provide assistance if I needed it.


I Had Him at "Hello"!

I took a deep breath and went down to the game room. I found the door had been closed. I slowly opened it and walked in. Colin was sitting on the floor,  in front of the television. As I approached the sofa to sit down, I said "Hello, Colin.". My son took one look at me, covered his ears and ran from the room.

Game over.

I went back upstairs to visit with my sister in her kitchen over salads. I decided to stay in this room, the center of the house, for the rest of my visit. Toward the end of my time, my sister needed to shower and get ready for an appointment. I stayed put and sat with a view of the back staircase. Colin had escaped to the workout room before going back to the game room when it was clear I was settled upstairs and wasn't going to chase him.

I wanted a clear view if he decided to come back upstairs.

Sure enough, I was rewarded with a quick glimpse of my son as he crept up the stairs and peered through the railing to see if the coast was clear. As soon as he saw that I was still in the house, he retreated back down the stairs.

Shortly afterwards my sister came back down to the kitchen and I told her it was time for me to leave. I asked her to tell Colin I was leaving and to see if he wanted to say, "Good Bye".  While it was no surprise my son did not want to see me before I left, I felt it was important to give him a chance. I also wanted to establish that I was not going to chase him around the house.

I left for home, glad to have this visit behind me. While our goal of " 5 Minutes in the same room" was not met, I was relieved there was not a confrontation nor was there a rage. I'll report back this week to our Psychologist and set up the plan for this coming weekend.

We are a work-in-progress!

Sunday, April 13, 2014

50 Minute Visit

I went out for my 2nd visit to my sister's house. Colin was told ahead of time and this time did not react. When I arrived, my son was settled in the lower-level. I stuck to my routine of grabbing a can of soda and  sticking to a one-room visit. I hunkered down in my brother-in-law's study.

Toward the end of my visit with my sister, she thought she heard someone playing on the X-Box. She checked and found it was Colin, who was not allowed to play video games unless he cooperated with his therapist. Aunt "P" waited until I left, to go down, turn off the game and remind Colin about how he earns game privileges.

I called when I got home to check on Colin's reaction to my visit and to the game being taken away. I was relieved to hear he was calm and said nothing.

Other News

We are working on fixes to our house to make our home more "Colin-Friendly".  We have replaced a few of our older appliances with quieter, more energy efficient models. We now have a Bosch dishwasher and a new front-load Samsung Washer and Dryer. When the appliance delivery men came last week, my husband paid them extra to move our refrigerator to the garage. It is a bit of an inconvenience to have to go to the garage to fetch necessities for meals or snacks. On the upside, we are more mindful of what we are eating and this may be a great way to keep off those extra pounds. Unfortunately, I have two teenage boys who don't see it that way!

My husband is working on a "quiet" room in the basement so that our son will have a sound-abated place to chill-out in. Our middle son will give up his bedroom ( the one he used to share with Colin ) and move to the loft / makeshift bedroom but doesn't think his brother will want the room. It is entirely possible that our son will prefer to sleep in the new basement room. This would be a much better alternative than the first floor half-bath that he had been sleeping in this past summer when things started going downhill.

We have a lot of work to accomplish in a relatively short period of time. I will try to remain hopeful!

We are a work-in-progress!

Sunday, April 6, 2014

30 Minute Visit

I went out to my sister's house for the first round of visits to help get Colin used to me again. One of my adult miso-friends has been coaching me and dubbed our project "Bring Colin Home". Our psychologist was surprised I wanted to take a more conservative approach than he was advocating. My friend had advised to gradually work up to trying to be in the same room and let my son get used to me being under the same roof for brief periods of time first.

My sister had told Colin on Thursday that I would be out to the house this Sunday. He immediately responded with, "She's not coming inside." which was more of a statement than a question. His aunt flashed one of her signature looks of "this is not your choice" that stopped my son's protest before it could take hold.

Colin was reminded again this afternoon, shortly before I came out so that he could be prepared. It was expected that he would most-likely stay in his room.

My sister was outside in her driveway as I pulled up. My nephew had a few friends over and one of the mom's stopped to chat before she left. After a few minutes, my sister and I entered the house for my set time to begin.

Angry Eyes

As we rounded the corner to the hallway, Colin darted out and stopped long enough to flash an angry glance in my direction before scurrying down the stairs to the lower level. My sister was surprised. She had never seen Colin look like that and it was clear he was waiting for me to show his disapproval.

I took this as progress. The last time I was in the house, he had run away and hid in a closet when he realized I had entered the house. I was also encouraged that while his eyes conveyed anger, they were not squinted into his "laser-beam of death" stare that we have experienced at our house.

I grabbed a Diet Pepsi and we settled in the living room . We spoke briefly about my concerns about Exposure Therapy and my sister showed me a video of what Colin's therapist has labeled his "tantrum". I had heard about my son "rubbing" and "playing" with his ears but was a bit taken aback by the video clip. Colin was sitting with his elbows on his knees, staring at the floor and the "rubbing" was more like violently flapping / flicking his ears. I swear if his ears were a bit bigger, he might be able to fly like Dumbo.

The rest of the time we avoided talking about Colin and had a nice visit. When my 30 minutes were up, I left to go back home. I am curious what Colin's mood will be like tonight and how his visit with his therapist will go tomorrow. For now I will be happy that I have my first visit completed and it went as well as I could have hoped for.

We are a work-in-progress!

Saturday, April 5, 2014

Exposure Therapy

 Post to Parents Group - April 4

Has anyone benefited from Exposure Therapy? I am concerned at the lack of progress & the direction therapy has gone with my son. The therapist comes to my sister's house and sits in a room with my son. The 1st part of the session is to have my son speak to her about his day. This is not happening because my son will sit with his hands over his ears and tune her out. The 2nd half is where the therapist will play a recording of a trigger. If my son sits in the room for 10 minutes, he gets 1 hour of X-Box time. 

Up until this past week, he will stay in the room and tune out. This week she upped the ante and played a loud recording of a washing machine. For the 1st time, my son left after a few minutes and went straight to his room. The therapist followed to check on him and he was in his bathroom. When he realized he was being watched, he washed his hands.

While my son has not yet had a rage, I am concerned we are going in a bad direction. Once again I voiced my concern with our Psychologist who is driving the process.
This weekend I will be going out to my sister's house and visit with her for 30 minutes. Our psychologist was going to have me follow my son and spend 10 minutes in a room with him. I am following the advice of a Misophone-friend and told the Dr. that I will not try to make contact and let my son stay in his room. My son will be made aware of my pending visit and be allowed to avoid me. Our psychologist was surprised by my cautious approach and is fine with it.

The area we are in disagreement about is Exposure Therapy. I am afraid what they are doing may reinforce my son's triggers, not diminish them.


Kim: I only know that exposure therapy escalated my daughters misophonia. It started w chewing, after starting exposure therapy through Cbt, she developed about 5/6 more triggers. That's just our experience.

Kristie: Exposure therapy made my son worse. He didn't develop more triggers, but it strengthened his determination to avoid his triggers and his rage and overall irritability/stress increased. It was not done with cbt, it was just him being forced to sit through someone eating a meal. He got to pick what meal and who. He always picked breakfast and his brother, who would eat his cereal very quietly. No clinking chomping or slurping. It lasted for a couple of months. When we stopped it, his stress level immediately dropped and his anger improved, as did his relationship with all of us.

Bev: I've read that exposure therapy can make triggers worse. This makes sense to me because over the last 20 years my triggers have caused increasingly negative responses. Most people also say things get worse over time and this might be due to the exposure itself. 

Sharon: I remember reading somewhere that exposure to the trigger probably strengthens the negative reaction/association but I don't know this with any certainty. I have a feeling a lot of psychotherapists would recommend this method based on current thinking but whether it works with this condition is debatable.

Linda: As a parent of a 37 year old son,and one who has been dealing with this for many me this therapy sounds like a punishment for something he did not ask for.It makes no sense to me.

Chris: My son had exposure therapy done as part of CBT for anxiety, and it worked well. However, what you describe sounds like way too much too fast. I would definitely get a second opinion. I think as a parent you should certainly trust your intuition on this. I am intrigued by the exposure-type therapy used by Tom Dozier's Trigger Tamer app. Have any of your kids tried that? 

Me:  No, I have not tried Tom's Trigger Tamer. This would not work in our case. I have a son who is in denial and pretty sure this would not work for us for several reasons. I am reading a book by a Neuropsychologist that I find interesting. I think it is important to have science back up treatment and I like not only the concepts in this book but the thorough explanations on how the brain works.
www.rickhanson.netHardwiring Happiness: The New Brain Science of Contentment, Calm, and Confidence shows you how to tap the hidden power of everyday experiences to change your brain and your life for the better.

Chris, I am also concerned that Misophonia can not be treated like anxiety. I have heard that exposure therapy is great for anxiety and phobias but for some reason can be detrimental for Miso.

Linda: My son explains his feeling of what a trigger feels like to is PAINFUL ,feels like an ice pic being stuck in his ear, I will never believe this is a "physiological" issue.He believes there are wires that are crossed and its like reacting to a cut.......PAIN signals are sent to the wrong place.How can making a child feel pain HELP!!!!Just saying?

Laura: Exposure therapy did not work for my son and makes it much worse.

Ruth: Yes I keep hearing exposure therapy makes triggers worse. Re Tom's treatment, I believe it's different (very very brief) because Tom also says that exposure makes triggers worse. 

Kit: True, Ruth. Tom is all about "Happy Miso Time"...does not want patients to use his application if it is causing distress. And if it does, you gots to shut 'er down! 

Tasha: Bonnie, it just sounds torturous to me! Sorry to put it so bluntly, but I think you need to act on your own motherly intuition, and step in to make this stop. It would be bad enough if you had a kid who was "all in" and willing to try to help himself, but he isn't even on board yet. I feel like forcing not only the counseling sessions, but the exposure therapy in particular, will just end up making matters worse... much worse. You said that the psychologist is "driving the process." But it's my belief that a really good psychologist let's the patient do the driving. This little fellow is gonna end up with even MORE rage and resentment if forced to endure ongoing painful exposure. I'm so glad to see that you are beginning to rethink this. 

Me: The reason I have allowed this so far is that 1. My son is allowed to leave the room at any time 2. We need to try some type of therapy to get my son ready to come back home. (he "hates" us and doesn't want to have anything to do with us) I'm in a position of "Damned if I do and Damned if I don't". My concern and reason for posing the question is that I am fearful of this process being stepped up further to where my son can not escape (like being followed to his room with the trigger sound.) The rational for this is that he has to learn to tolerate these kinds of noises to be able to function in the "real world". I was asked in our last session if I wanted to "fire" the therapy team (our CBT Psychologist and his PhD candidate intern). I indicated that I want to take it week by week and will stop at the 1st sign of a rage. We've been lucky so far that my son has not had a full-on rage since going to my sister's home. 

It was explained early on that part of this therapy is due to my son denying that he has a problem with certain noises. His therapist started the challenges as "O.K., you say you don't have a problem so you should be able to sit in the room with the ceiling fan on. " I don't have a PhD in psychology and I base my concerns on speaking with parents and Misophonia sufferers. This goes against the training of our CBT PhD. I am trying to be cautious but allowing trained professionals to try their hand at this. We've already unknowingly made mistakes that got us to this point. We have a matter of weeks until school is over and our son must come home, ready or not.

Tasha: I guess I just don't see the point, even in "making him admit he has a problem with certain noises." Why? I mean he is 13 years old. Do you know how many grown adults are in denial about all kinds of ailments, issues, and behaviors? It's like forcing a 13 year old overweight child to "just admit you have an issue with food..." before they are mature enough and ready all on their own to own it and change it. They have to acknowledge it, believe it, embrace it, and THEN want to help themselves because we can't, even with a doctor's help, do it for them. I promise I'm not scolding or criticizing you. Sorry if it sounds that way. I am just trying to support what I think you already suspect, and to empower you to follow your heart. Strength and love to you, Bonnie  

Linda: Agree to some is a choice, Miso is not. 

Me: Thanks, Tasha. There are so many things that I know now, that we didn't know at the beginning of our journey. We are in this mess from trying to force doctor visits on our son. We had no idea of what we were dealing with and were sick with worry at some of his scary reactions to certain noises. ( for example: on rainy days he was ready to jump out of the car and walk home from the Y to avoid the car's windshield wipers) I don't see how we could have done anything differently given our circumstances. 

Tasha: Hind sight is 20/20, for sure. BTW, we just had to spend $100 to replace a worn-out part on our son's wiper blade mechanism, because it had gotten so sluggish it would just "clunck" down each time, and he couldn't stand it... turned around one rainy day and drove back home instead of the 40 minute drive to college. Thank goodness that fixed the problem! 

Ann: Bonnie, that is child abuse. 

Laura: Ann, what are you referring to?????? 

Ann: referring to main post, everything before "while my son has not yet had a rage..." 

Laura: Ann, It sounds like you are referring to exposure therapy. I agree it is awful for someone with Miso to be forced to hear triggers.

Marsha: Not good sorry 

Gail: Based on everything I have read and experienced with my own child, exposure therapy does not work. It increases stress. I think at the core, it's all about offering unconditional emotional support, validating their feelings and giving then the lead on problem solving. I'm sure I'm sounding like I am over-simplifying and I don't mean to as this is such a complicated and confounding disorder. But exposure therapy is almost like dismissing their feelings. My daughter fares so much better when we make sure she knows we understand and support her. Heart goes on to every single person who suffers from this! 

Melanie: I think your instincts are right here, Bonnie.  It's not helping and at this point there is nothing to be gained by trying to force a "confession" of sorts out of him. Whether he is willing to talk about it or not, he obviously has these strong reactions to sounds and I think you know it's misophonia. I know how much you want your son home and you want to repair your relationship with him. You may have to set that aside for a bit and try to figure out what it is going to take on a basic level to make his life tolerable so he can get some enjoyment out of it as he moves towards adulthood. I think if he sees you making his comfort your number 1 priority, that will go a long way toward changing his relationship with you. Sending you high hopes.