Sunday, February 8, 2015

Dancing On My Grave

 This morning I received a comment from a concerned blog-reader that I felt worthy of a post. I often mention my son's "messages of hate" such as "go kill yourself" and "vicious puppy is going to attack and kill you". Recently when I jokingly told my son that he would miss me when I'm gone, he responded that he would be dancing on my grave. While I might make light of this behavior and choose to either ignore or respond with humor, I do take this situation a bit more seriously than it might appear.

My daughter, who is 20 and has suffered with Misophonia since the age of 8 has been reading your blog with me. Your struggle and Colin's has really moved us.
I am also an Emergency Physician with 28 years of experience and I am very concerned about the behaviors you are describing where your son repeats his 'hate messages', especially in a quiet or sing-song voice, through the dog, and that he does it only with you and your husband and doesn't allow it to be public. This does not seem to have any relation to misophonia triggers, but could indicate another condition. I strongly recommend, for you and for your son's safety and well-being, that you talk with his doctor and/or a Behavioral Health Professional about these behaviors.

Marni, I appreciate your concern here. I agree that the messages of hate may not be exactly miso-related. There is much of our lives that are not in my blog.

As a precaution, when we were getting the house ready for Colin to come home, we hid and locked up our large kitchen knives. I also had kept in touch with our behavioral psychologist when our son first came home and we routinely spoke about this behavior. While troubling, it has been important that we don't overreact.

During the time that Colin was hospitalized, he was suspected of a wide range of disorders but none confirmed. Hard as they tried, he refused any and all medication. Our mental heath system is extremely deficient to say the least and the only good our son's stint at the Psych Hospital did was to further cement his hate for us. He blames us for having him locked up as a punishment.

While hospitalized, our son admitted that he would not care if something happened to my husband and I but he personally would not do anything. Upon his release, it was clear that my son was not ready to go home and we were not provided with any real options by the social worker and psychiatrist on our case. They were more interested in making room for another patient and deemed our son clear to leave. I am still very bitter about our experience. I thank God every day that my sister stepped up to help. I shudder to think what might have happened had she not.

Our cognitive behavioral psychologist has admitted that our son was one of his most frustrating cases. The doctor was able to serve as a good sounding board but in the end, my best tool has been my mother's intuition. It has been helpful to have a trained professional to run ideas past and to affirm we are on the right path.

I belong to several online support groups. I have made many friends with parents of difficult cases as well as adults with Misophonia. One of my adult friends has been instrumental in helping me understand what might be going on in my son's head. There were some similarities in her case. My friend had difficulties as a teen living at home and went to live with her aunt for a year. Having a misophone's perspective and coaching was invaluable.

I was advised to proceed slowly and methodically as we were (still are) dealing with a very sensitive individual. Allowing the child to have as much control as possible is also key. Consistency in behavior and words is another important factor. My friend and I strategized, I ran our ideas past our psychologist and then carried them out. I still marvel at our success in getting Colin back home by our deadline. Even more amazing is his progress by leaps and bounds.

I believe there may be a hereditary component to our son's disorder. I see some of my mother in my son. Unfortunately she passed away long before he was born. She was very smart, driven and a bit obsessive. She had an explosive temper and exhibited distorted thinking. While there may have been an element of truth to some of her feuds, they were blown out of proportion and hardly worthy of the decades-long vendettas she held against family and some neighbors.

Much of my childhood was not happy and I did experience some verbal and physical abuse at the hands of my mom. We were able to come to terms with this later in life before her death. She expressed her regrets and we made our peace for which I am thankful. Not everyone gets this chance. This experience helped shape who I am today.

Colin has told his middle-brother that he will never forgive his parents for the past year. I am aware that it may take a very long time until our son will possibly take ownership of his situation. I do believe we will eventually have a reconciliation. Unfortunately this will not happen any time soon.

I want to assure you that not a day goes by that I don't try to gauge where we are with Colin. I'm not proud of this but I have "stalked" him on the Internet, searched his notebooks and other media for any worrisome signs and keep an eye out for any troubling behavior. Much to my relief, I have found nothing of concern.

One of the most curious aspects of Colin's behavior is his ability to hide any signs of distress to former triggers. I doubt he is "cured". I have witnessed on some rare occasions what might be avoidance maneuvers  but have not seen any rages since he has been back. Much of his "hate messages" tend to occur when he is tired or inundated with uninitiated conversation. Some of this might be a form of trigger-induced anger-release. No one except our son can answer this. Unfortunately our teenage master of deflection will not open up to anyone. I so wish I could unlock the "black box" in his head to solve these mysteries.

Right now our hands our tied. While I do have professionals that I can and have called for advice, we need to move with caution. We agreed not to take our son to any more psych-related doctor visits if he was functioning within reason in our home. And he is.

Things have been slowly improving but as always... We are a work-in-progess.

Thank you so much for reaching out and for your concern!

Friday, February 6, 2015

A Parent's Worst Nightmare

Tuesday morning, January 12, while Ohio State fans were celebrating their beloved team winning the National Championship, I received some terribly sad news. The night before, friends of our family lost their 14 year old son to suicide. My blood ran cold and I was in disbelief when I found out. This is one of the nicest families that we know. When we were not sure what would happen to Colin this past summer after his stay at my sister's house, this family had offered to take our son in. Fortunately we were able to get our son back home but the heartfelt offer meant a lot to us.

We haven't had a chance to spend much time yet with our friends as we are allowing them some time to grieve with their family. What little I have learned is that this boy, who was extremely smart and driven, may have been having some difficulty with a class.  There was no note, so we don't know why.

He had been having some outbursts at home that may have been triggered by his frustrations. The boy had also been ill with a cold as well as allergies. The parents had made an appointment with their pediatrician as a first step but unfortunately their son took his life before getting to the doctor.  This is such a heartbreaking situation.

I want to cry but I can't. A side-effect of the past roller coaster of a year is that my emotional system is a bit locked up. I can't remember the last time I had a good sob. For now, this has served me well. I was able to take food to the family the next day and keep it together during my brief visit. When hugging the mom, between sobs, she told me she wished she reached out to us. They may have seen some similarities between their son and Colin and thought we might have been able to provide some advice. We had no idea of their situation but I don't think we would have been much help.


When we spoke with our boys, there were mixed reactions. Disbelief, curiosity, sadness and difficulty in processing the news. Colin was curious on the circumstances but showed little emotion. He had swam with the boy, had been to the house on several occasions, including a sleepover-birthday party but it had been over a year since they had been together. My other boys had much more contact and we had just been to our friends' house for their annual  New Year's Party. (Colin stayed home as part of his avoidance of anyone who knew of his breakdown). The older boys were in shock.

When it came time for the viewing and funeral services, we gave Colin the option of going. He chose to stay home. While his choice was totally expected, I was still relieved. Our son has a hard time processing emotion. I was also worried that if he saw how utterly devastated the grieving family was he might get ideas.

Trading Places

The last several weeks we had been experiencing some drama with my middle-son. He is in his junior year in high school and is taking a challenging load of classes. Add to that an abundance of extra-curricular activities and teenage hormones. Something had to give. The icing on the cake is due to scheduling conflicts (and lack of motivation) our 16 year-old started missing several swim-team practices. This led to some verbal abuse from teammates. Things started to unravel for our middle-child and the death of a friend made matters worse.

The ironic part is while one boy was hitting a rough-spot, another seemed to be shining. My eldest and I both noticed that over the past month or so, Colin has been surprisingly "normal". He has been good about making swim practices, getting good grades (3.9 - 4.0) and seems to be the happiest he has been since coming back home. I can't help but wonder if it was helpful to have his brother take the spot as "problem child" for a bit.

Sometimes we forget that "Misophonia" (or "Select Sound Sensitivity Syndrome" or "Sensory Processing Disorder" or  "Colin's Disease" ) is a problem for the whole family. It doesn't matter what you call it, when one child in a family has a life-altering issue, everyone is affected.

As always, we are a work-in-progress!