Hardwiring Happiness

I've been reading the book, Hardwiring Happiness, written by Neuropsychologist, Rick Hanson, Ph.D. and am about 1/2 of the way though. I've read enough to be able to recommend this self-help book.  Dr. Hanson does a thorough job of explaining basic neuroscience concepts of how the brain processes both good and bad experiences and why the brain is like Velcro for the bad and Teflon for the good.

I found the passage below intriguing. Perhaps it is my love of chocolate cake. I will have to test this out the next time I am under extreme duress. I do think that this seems like a great coping technique...

(click on photo to enlarge)

Time for bed and dreams of chocolate cake and ice cream!

We are a work-in-progress!

Happy Birthday, Colin

Today Colin turns 13 years old. It's been 5 months since we've seen him. There are just under 4 months until his stay at my sister's house will be over and at this point he does not seem any closer to being ready to come home.

Therapy, Schmerapy.

Colin has not had any full-on rages since moving in with my sister and her family. Instead he has what the therapist calls "tantrums", where he puts his head in his lap and hands over his ears. Colin does this in response to therapy. He will sit in the room as directed but will completely shut-out his therapist. Part of the therapy is to talk about school or his life and Colin has remained mute. The other part of the therapy is to sit in his uncle's office and face a trigger for 5 to 10 minutes.

The past several weeks the therapist will turn on the ceiling fan and leave Colin alone in the room. This week she played a recording of refrigerator sounds. The reward for staying in the room with a trigger is one hour of X-Box time. It is hard to know whether Colin is really confronting his triggers. The first time this happened, he seemed surprised when his Aunt told him that he had earned video game time. He claimed not to have heard any of the conversation between his aunt and the therapist.

I am concerned about how therapy is going and have been vocal with our Psychologist.I have been warned by those with Misophonia that Exposure Therapy can make triggers more severe. I also am worried that no visible progress has been made and that Colin is tuning out his therapist. Due to the fact that my son is able to leave the room at any time, we have allowed this method of therapy to continue. We are amazed that Colin stays in the room but most-likely does this out of defiance and to prove that he will not be broken or cooperate with therapy.

Report Card

Colin seems to be doing well in school. He made Honor Roll and his teachers see no odd behavior in class. In fact he appears normal and participates in class discussions. His teachers have been briefed about Colin's sound sensitivities and on what to look for. So far there has been nothing significant to report.

The only notable report was the day the therapist came to observe Colin in one of his classes a few weeks ago. Her visit to school was in response to Colin shutting down in his home sessions. When the therapist was in the classroom, Colin was fairly subdued and quiet. As soon as the "visitor" left the class, Colin turned to a classmate and said "So. How's your day going?" and then started to participate as he normally would.

Only the teacher knew the real reason for the "observer" and was most-likely the only person to notice Colin's change in demeanor. 

Our psychologist has noted that other than his aversion to therapy sessions, Colin seems to be coping fairly well in his new environment.

I have been warned by other miso-parents and by an expert, Dr. Marsha Johnson, that this is not uncommon but most-likely only temporary. It can take up to a year for new triggers to show up. Colin has been caught swearing when he thought no one was within earshot. He also has had other reactions when alone, such as turning off the mini-fridge in the game room, tossing shoes and knocking over chairs. When confronted, Colin denied responsibility.

We are grateful for the temporary reprieve but realize this would not be a realistic long-term living situation. Ready or not, Colin will be coming home soon. He has been told he has to come back to us first before going to foster care which he claims to favor rather than to reunite with his family.

 

Birthday Wishes 

So far Colin has received 2 cards in the mail, one from Grandma and the other from Dad. Colin gave the check from Grandma to his aunt to cash for him. The card from Dad was opened but found later crumpled and tossed into the bushes by the back door.

I mailed 4 more cards to Colin yesterday and they should arrive today. Two of the cards are from his brothers and two are from me. While I fully expect these to be tossed away, I am anxious to hear his response.

Tonight my sister and her family will take Colin out to dinner.

I hope to get a report tomorrow. I will hope for the best, expect the worst and be content with somewhere in between.

We are a work-in-progress.

Today is Rare Disease Day

Today is Rare Disease Day. http://rarediseaseday.us/

Rare Disease Day USA | Alone we are Rare. Together we are Strong.

rarediseaseday.us

There are nearly 7,000 rare diseases affecting nearly 30 million Americans. In other words, almost one in ten Americans are suffering from rare diseases. If you or someone you know has a rare disorder, today is a great day to help create awareness.

The disorder that I want to shine a light on is : Misophonia, also known as 4-S (Select Sound Sensitivity Syndrome).
From :http://misophonia.com/
The term Misophonia was developed by an American neuroscientists Pawel Jastreboff and Margaret Jastreboff, during this period Dr. Marsha Johnson (Aud) labeled this condition “Selective Sound Sensitivity Syndrome” to address the sub class of indivuals that did not hate all sound but only particular sounds. She started a Yahoo support group which has 3,500+ members, and membership continues to grow. You may find the support group here. The condition has been called many things – Soft Sound Sensitivity Syndrome, SSSS, SSS, 4S, Hyperacusis, Phonophobia, Misophonia - for those who suffer, the name is not important. Far more important is the knowledge that those who suffer are not alone – that an entire support network does exist and that research for a cure is being conducted. Here, we will use the name “misophonia” as it literally means ‘the hatred of sound’.

http://www.nytimes.com/2011/09/06/health/06annoy.html?_r=0 

Together we can help spread awareness.

Frequently Asked Questions - Part 3 Why is Your Son In Denial?

One of the most puzzling aspects of  "Colin's Disease" is the refusal to admit he has an issue with certain sounds and visuals.Why won't he talk about what is happening? The most he has admitted to is an "annoyance" with some noises and once apologized to me after he calmed down from a rage for an burst of "adrenaline".

I believe part of the issue is that it is hard to explain what a "trigger" feels like. A while back I saw a discussion between adults that were asked  this question.

Excerpts:

"I want a name for that feeling we feel when we get triggered. The one that is unbearable. No, it is not an irritation, and if we ask others to multiply it by a billion times, still, it is not. To call it just a pain, does not quite cut it also. Other people have no idea what it is, never felt it, and that is why it is so hard for them to understand. It just has no name. And I want to name it........"

  a few of the responses:

"inescapable painful intolerance"

"Helplessness or hopelessness and extreme frustration."

"I think extreme disgust is part of it. Not all of it, but some of it. Also pain, though not quite physical pain. Anguish maybe."

"What a thoughtful question. I like "anguish," and I went to the Synonym Finder to see what it said. Torment? Distress? Fury? Ferocity? Vehemence? I still like "anguish."
I would caution against "pain," because that confuses misophonia with hyperacusis, and the distinction needs to be clear."

"I like the term 'mental anguish'. Also, 'torment'."

"its like im turning into the incredible hulk!"

If it is difficult for adults to articulate what it feels like when triggered, can you imagine what it must be like for a child? This is so hard to explain, let alone understand how and why this happens. This unexplainable condition seems crazy. 

Therein lies part of the answer: My son has an inexplicable condition, knows he is sane and does not want to be labeled "crazy". 

I've also been told that it is common for boys his age to not want to believe that there is anything wrong with them and that asking for help is a sign of weakness. Colin has expressed that he can handle things on his own.

I wonder if by admitting there is a problem and giving it a name somehow makes it "Real". Clearly my son is only fooling himself by pretending he is perfectly fine.

We are a work-in-progress!

 

Little Things Can Reach Deep

Today my husband found this drawing made by Colin while helping my middle-son clean his room (the room he used to share with Colin). It was dated July 20th, just a few weeks before Colin's reactions to triggers started to rapidly worsen.

The pencil-on-lined-paper drawing is a little hard to make out. The sketch is of a couple taking a walk with a small child between them. It looks like they are swinging him as they go; like we used to do with Colin when he was much younger. A boy sits with a smile on his face and observes from a distance. Hearts are seen bubbling up from the family. The message is simple yet profound:

"Little things can reach deep"

I wish I was able to discuss the inspiration for this work of art with him. Perhaps one day.....

Routine Exposure

Yesterday I sent  my two older boys to my sister's house. My eldest has had his driver's license for about a year and I entrusted my mini van to him as it has a GPS system. The mission was to hang out and play video games on the X-Box with their cousin. Colin was told he was allowed to play the otherwise forbidden* machine if he joined his siblings. Colin chose to stay in his room.

* the X-Box has been taken away until Colin participates in therapy.

Each of his brothers attempted to go to his room to say "hello" only to be shunned and have the door closed on them. The rest of the time was spent in the basement playing games. After a few hours they left. Colin stayed in his room until called down for dinner. He was calm and there were no rages. I view this as a small victory. The plan is to continue having the boys go out to visit every week or so. I'd like to start creating a "new normal" so that Colin gets used to his brothers coming to the house.

My son is still being visited weekly by the therapist (PhD student) with no visible progress. Colin remains uncooperative but will at least sit in the room with her for his required time. We are resisting the temptation to stop therapy as it does not seem to be helping. We will give it some more time and have told our psychologist that we need to make sure we do not make my son any worse. My sister will report any signals that Colin is regressing. So far there have been no full-on rages at his new home and we need to get through the school year.

Meantime we are starting to plan ahead for anything. The future is uncertain and we don't want to be blind-sided.

Stay tuned.......

We are a work-in-progress!

Frequently Asked Questions - Part 2 - Hatred and Anger

 Why Does Your Son Hate You?

When asked why he is so angry at his parents, Colin will say we are evil. He claims that we have been telling everyone he is crazy and we put him in a psychiatric hospital to punish him.

Colin also wants nothing to do with his brothers. My middle-son, the brother he used to share a room and and was closest to is considered a "Spy" for us, after asking too many personal questions. Our oldest son, who helped restrain Colin during an out-of-control car trip has been accused of beating him up as per parental instructions.

Our son is also angry because we  wouldn't "stay out of his business". We were asked to not cross a line which we did. Colin told us that he did not want to be psychoanalyzed or taken to doctors for his sound issues. He felt he could handle things on his own and we disagreed.

There's a locked box of thoughts tucked away in Colin's mind. We made the mistake of trying to pry it open. We had to try. We are terrified not knowing what is going on in our son's head. Why won't he let us help? Clearly his sound "allergies" are affecting the quality of his life. Even in retrospect, I'm not sure we could have done things much differently.

Colin seems to be doing much better at his aunt's house and has admitted to her that 50% of his rages were in reaction to trigger sounds and 50% were to get back at us. He told his aunt that the meltdowns at the Neurologist's office and the extreme raged attack on my husband at the Psychiatrist's office were to embarrass us.

I doubt he has any idea of how severe his outbursts were. I also don't see how anything we have done warrants this type of vitriol. The "black box" in our son's mind holds the answers to these mysteries for which I hope we will one day have some answers.

Frequently Asked Questions - Part 1 - Abuse

We're coming up on two weeks since our last report on Colin. The "radio-silence" between my sister and I has been a good thing. I am much less stressed and I hope my sister is as well. Our situation with Colin can be frustrating and quite exhausting. I am hoping that the time away from us is giving Colin a chance to regroup and hopefully heal his anger toward us.

This blog only tells part of a story and has been "sanitized". I would like to take this quiet-time to address some frequently asked questions and help fill in the blanks. There is nothing that anyone can ask me that will shock or offend me. Chances are that any questions that you have are things that I have already asked myself. Not a day goes by that I don't think about Colin and try to see things from his point-of-view.

One of the most frequently asked questions deals with the topic of "Abuse".

Frequently Asked Questions - Abuse?

Is it possible that Colin has suffered some sort of abuse such as sexual or been the target of bullying?

I can remember this past summer, as Colin's behavior became more strange, I was concerned about his fear of ceiling fans and ticking clocks. My mind went to dark places. Was he tortured in a small room under a ceiling fan? What could have happened to him to cause this extreme level of anxiety?

I would go for walks with Colin and in numerous conversations try to broach the topic of Abuse. I would constantly ask about bullying. I would ask if anyone ever touched him inappropriately. I even asked if his father ever beat him or mistreated him when I was not around. No one was above suspicion.

His answers were always the same. Nothing had happened and there was no abuse. He also refused to explain his fear of certain sounds and of ceiling fans. He was adamant that he didn't want to talk about it and that he could handle things on his own. There also seemed to be a fear of being thought "crazy" and he did not want to be seen by doctors for his issues.

I quizzed my other boys incessantly. They insisted that there was no evidence of anyone abusing their brother. I went through every possible scenario and I could not find anything that could explain Colin's increasing odd behavior.

Recently when in a session with my sister and the therapist - a.k.a. - "observer", Colin was told that his stay at his Aunt's house was only temporary and that he would be going home at the end of the school year. Colin did not take this news well and became agitated.

He said that he would not go back home and would prefer foster care. He went on to say that he did not care if he was molested.

This statement prompted a later conversation with my sister that I am grateful that she had. Aunt P told Colin that he had said something that troubled her and she needed to ask him a question. She told him the statement he made about foster-care and molestation was a bit strange. She asked him if he was ever molested or abused.

Colin laughed and told her no.

My sister then asked him if he would tell her if that ever happened to him. He then grew more serious and responded that nothing like that had ever happened.

In our last session, we were also told by our psychologist that part of the therapist's job is to constantly make sure that the child is safe and is not being abused. Colin was also quizzed about abuse when he was hospitalized. There is absolutely no evidence that our child has been a victim of sexual or physical abuse.

At this point we can rule out Abuse.

coming up : next F.A.Q. - Why does your child hate you and refuse to see you?

stay tuned.....

We are a work-in-progress.