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.