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.

MarniFebruary 8, 2015 at 2:08 AM

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!

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.

Reaction

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!

Happy New Year!

Another week has flown by. This is the last week of the boys' Christmas break and we have maintained a relative calm in the house.

The day after Christmas, I took all three boys and the puppy out to visit with my sister and her family. We had pizza while the dogs played together. My sister and I took a trip to Bed, Bath and Beyond to exchange a gift we bought her that was not working. When we returned, I found my boys playing a trivia game with my sister's eldest son who is home on break. I volunteered to take over as card reader so my eldest could play. We all had fun and I learned some new fun facts. I was so impressed at how "normal" our visit seemed and that Colin was in a relatively good mood.

I did notice the next day, (Saturday Morning), some of the bad behavior of "Go kill yourself"  / telling the puppy to kill me was back. Colin uses either a quiet or sing-songy tone which doesn't seem to bother me. I've grown immune to most of this and realize his mutterings may be a form of coping. I will how ever ignore Colin when he does this behavior and give him a bit of the silent treatment for a bit to show my disapproval in a non-confrontational manner. It is amazing how one moment he can be voicing some hateful messages and then in the next moment ask a question in a calm, normal voice.

I later asked my middle-son his opinion as to why the last week or two were mostly free of this behavior and why he thought it was coming back. My 16 year-old felt that I was barely around during my busy period at work. Now that the Holidays are over, Colin's exposure to me has increased, therefore spurring on some of his bad reactions. I do have to say that what we are dealing with is so very mild compared with the rages a year ago. I also feel that we are experiencing much more "good behavior" as time goes on.

 

Ringing in the New Year

I came home early from work yesterday to find that after swim practice, Eldest took Colin to breakfast at Bob Evans.( Middle-son decided to skip practice and sleep in.) The only information I was able to get out of my first-born is that he bought the meals with cash. I tried not to make a big deal out of this and went to my quiet place to privately savor the moment. It does my heart good to see the boys getting along.

Later that evening, Colin stayed home with his dog while the rest of us went to a New Year's Eve party at friends from the Y-Swim team. Colin did not want to go as he is uncomfortable seeing friends that are aware of the past year. We are mindful not to push him out of his comfort-zone and left a little early to be home before mid-night to ring in the New Year as a family....or at least under the same roof.

I am starting 2015 with much gratitude. While things are not perfect, we have much to be thankful for. Colin seems to be content in his new school, is making honor roll and participating in extra-curricular activities. He is getting along with his brothers and seems to enjoy their company. Sumter, his puppy helps keep Colin calm and brings him much joy.

I am content with limited contact with my son and am simply grateful that we are able to live under the same roof in relative peace. I am not sure how long it will take to reconcile. We are so much closer to that goal than I could have hoped for. I will continue to try to live in the moment and not look too far ahead.

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

That Most Wonderful Time of Year

The last few weeks have been a blur. This has been my busy season at work and at times seems like one long day.  I had been taking the dog to daycare until two weeks ago when he suddenly came down with a stomach / bacterial infection. There was a $700 Sunday morning trip to the Med Vet ER followed by a week of antibiotics and having to take Sumter to my work to prevent him from infecting other dogs.

Best Behavior

I'm not sure if it was because my contact with Colin was minimal, or that he was aware of how much stress I was under between taking care of the puppy and being busy at work or simply that my son was just in a better mood but the hateful messages of puppy wanting to kill us or telling me to go kill myself was at a minimum and barely noticeable.

Saturday, I took Colin and his middle-brother to a JV swim meet. Colin continues to shave seconds off of his times. I had a chance to observe from a distance. He seems to get along with his team and is enthusiastic when cheering other swimmers on.

After the meet I mentioned taking Sumter to the dog park and was pleasantly surprised that Colin said that he wanted to come with us. Even more impressive was my son mentioning that he would like some ties for Christmas. He has a few but wanted more for school.

I was encouraged that he seemed interested in putting up the tree and asked his middle-brother what we did last year. My 16 year-old had a fuzzy memory and could not quite remember.

I'd like to forget how hollow the past year's holidays seemed with all the stress and drama of our estrangement.

Christmas Day

Today was miraculously normal.We waited until everyone was awake to open presents. Colin's big gift was a new smart phone, companion tablet, and accessories.  He also received several ties, and some dress clothes of which he seemed grateful for. There was Christmas cash from family and a trivia game for a future family game night.

Colin took several pictures of Sumter with his new dog toys before settling in to play with his new technology.

Later we all watched a Christmas special ( How Murray Saved Christmas) and then celebrated eldest's 18th birthday with some ice cream cake.

As bedtime nears and I reflect on the day, I am filled with gratitude. I am grateful that we have achieved a peaceful, normal day. This was something I've dreamed of for a year now and the very best gift I received today.

I don't know what the future holds but I will savor today.

We continue to be a work-in-progress!

Brotherly Love

 Swim season is now in full swing. The boys are on a rigorous schedule that involves nine practices a week, included three that start at 6:15 a.m. I try to do my part by taking Sumter down to Colin's room to wake him up. My eldest will prod and hustle his brothers along to make sure they get to practice on time.

A few weeks ago (November 17)  I found this note in Colin's room right after the boys left for practice.
"Colin - Pack Lunch, Bag, Backpack, and clothes or -receive punishment from older brothers"


 Sometimes I wonder who the parent is. Makes my job easier.I don't know what we would do without our older boys.

A-OK

 

Post to Parent Group - November 29

I recently found out something that is helping my son at school. He goes to an all-boys high school and is a freshman. We had a couple of "hiccups" in the beginning of the school year and were able to get some assistance from the guidance office. My husband had asked what it would take to be able to have extra time on tests and was told that all it would take is a doctor's note.
We are aware of several ADHD boys that are able to do this. My husband got a note from our pediatrician and submitted it to the school on the off-chance the note might come in handy. We are unable to have meaningful conversations with our son so we left it up to the guidance office to work with our son.

I noticed an uptick in grades and our son currently has a 4.0 for this grading period. I chalked it up to figuring out the system and better study habits. While I am sure this is part of it, due to a chance conversation with a teacher (my eldest's History teacher) we learned that my freshman-son was observed coming late to band practice. We asked my eldest about this and found out that our son has been taking advantage of extended-time tests.
I wish I was able to speak with my "miso"-son to get better information. We feel so fortunate to have such a supportive school.

Catching Up

It has been a few weeks since my last post. I've been swamped at work and struggle to find the time to blog. Just a few more weeks until my busy season will be over.

Overall Colin is doing much better than I could have hoped for a year ago. He seems to be engaged and doing well in school. However, I have seen more frequent "hate messages" of either "Go kill yourself" or how the dog wants to kill us. He even added a new one, "You're gonna die alone."

I've asked my older boys about this. No one knows what goes on in Colin's head. My middle-son thinks that all the swim practices might be tiring his brother out and causing a bit more stress. My eldest son thinks he may be partly to blame for pushing his brother around to get to school on time and to tow-the-line. I have been responding more often than I did in the past to his disses. Perhaps the combination of all of this has helped escalate the situation a bit. I've gone back to avoiding my son and ignoring his disrespectful comments.

I have noticed that when I whip out my cell phone to record bad behavior, it suddenly stops. Colin also is careful not to let his eldest brother witness any of his hateful messages. He knows that his brother will give him a smack. I am faced with either disciplining my child and instilling fear or ignoring him unless he speaks respectfully. For now, I am choosing the non-violent, non-confrontational way as long as he is not disruptive to the family. Colin is 1000% better that he was before he left our home last year.

We had a successful  Thanksgiving dinner with family. Colin has been willing and able to visit and interact with his aunts, uncles and cousins, although it takes him a bit to warm up. Tonight he skipped a family dinner due to a busy weekend and a ton of unfinished homework He politely declined and was able to stay home alone with his dog. We are glad that he is making a great effort in school.

For now I will be content as long as we continue to make progress, no matter how slowly.

We are a work-in-progress!

Finding Humanity

Another week has flown by. Swim season has started for the boys and so has the grueling workouts. Three days a week, the boys need to be at school by 6:15 in the morning for weight training and swim practice.They also have practice weekdays after school and on Saturday mornings. Colin is the youngest and smallest boy on the team. As with cross country, he has his work cut out for him. It appears that Colin is determined to get in shape.

Friday night, I stayed home with Colin and my middle-son while my husband attended a dinner with my eldest for the seniors on the cross-country team. I asked the two boys what they wanted for dinner. Middle son was just getting over a minor fever and was not hungry. Colin had a plate with peanut butter and crackers and a protein drink at his place at the dinner table. He asked that I buy more protein bars. Apparently he is trying to build up his puny muscles and is trying to load up on foods that will help.

I was tired after a long day at work and heated up some left-overs. I fed the puppy and enjoyed some quiet time while the boys retreated to their rooms.

Saturday Game Night

Saturday morning, I went to work early, eldest went to swim practice while the younger two boys had a quiz team tournament across town. Dad drove and dropped them off and went back home. The tournament was being held at a high school that was not far from where my sister and her family live. I came along with hubs to pick the boys up at 4:30. We brought Sumter along and went to visit my sister and her family.

My sister and I picked up some pizzas while the boys hung out and the dogs played. After dinner, Colin suggested we play a game called "Cards Against Humanity". This is an adult game similar to "Apples to Apples" but a bit off-color.

Five of us played; my sister, her son, me and my two boys (eldest had to work and was not with us). We had a great time and I can't remember the last time I was able to laugh so hard with my boys. Colin was in a great mood, especially when he and his brother tied for 1st place.

Shortly after the game was over, we decided to go back home. I was so happy to be able to have enjoyed a "normal" evening. Of course there were the usual messages about puppy going to kill us but only a few soft-spoken ones with no witnesses other than my husband and I. We were more focused on the fact that our son is not only able to be in the same room as us but had wanted to play a family game. This was the first time in well-over a year.

Lazy Sunday

Today, Colin has been keeping mainly to himself. At one point he was looking for his modeling clay and seemed agitated that he was unable to find it. He came up from his room to ask demand I tell him where I put it away. I don't recall moving his clay and neither did my husband.

Colin had seen his cousin working on claymation last night which sparked his interest to return to a project he put aside for several months. I tried to help look but was banished from his presence. I was more than happy to take my leave. Colin is no fun to be around when he is in a mood and I am avoiding him the rest of the evening.

Fortunately I think Colin found enough material to work with and is holed up in his room. He'll come out when he gets hungry and is able to fend for himself. It is important to give our son his space. This also gives me an opportunity for the quiet time I need. I am able to catch up some of my to-do list before bed.

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


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New Normal - Jekyll & Hyde

It's been almost two weeks since my last report on Colin. No major events to report. We have settled into a New Normal with a few tiny bits of progress. Last night being the most encouraging event of the week.

 About Last Night

Last evening, I came home as usual with Sumter bounding into the house to greet his boy. Colin started his usual routine of "Kill Her" which I ignored. I fed the pup and took him outside to potty. When we were back inside, Colin was in his usual spot on the family room floor, in front of his laptop watching one of his gaming videos. He continued with his antics of "Kill Yourself", " Vicious puppy is going to attack" and a few growls thrown in for good measure.

When my son was not looking, I pulled out my cell phone to see if I could get a video of this behavior. A warning shot was fired in the form of the "click" of a photograph. I quickly switched to video mode. Colin looked up and snapped "Stop! What are you doing?"  "You better not post this online." It is amazing how the kid can go from acting like he's demonically possessed to behaving like a normal, reasonable child.At that point he quit his antics and started acting "normal".

A short while later while I was in the kitchen, Colin came over and laid on the floor for Sumter to jump on him and attack with kisses. He started up again with his messages of "Kill". This time there was an animatronic quality as he lay on the floor, jerking his head between puppy kisses, to punctuate his hateful communication.

I laughed and asked, "What are you? A robot?" as I mimicked his jerking head and spewed back the same messages.

To my surprise, Colin laughed. He responded to my observation that he looked like an atromiton by telling me about a video game "Five Nights at Freddy's". He asked if I wanted to see it. I said "Sure" as I pulled a face "Should I be afraid?"

He took his laptop back down to his room to run the video on his flat screen t.v.. I came down, turned off the lights for better viewing. For a brief time, I felt a connection to my son. One that has eluded me for the past 18 months. My son explained the video demo of the game (as played by one of his favorite gamers). There was a character in the game that had the same name as me. I had a good laugh at my grotesque-looking animatronic namesake.

After a short time, I took my leave so as to not overstay my welcome. I will savor this event as a small victory.

Doggie Daycare

As I started to enter my busy time of year at work, I had been finding that having Sumter weekdays at my work was starting to become more and more stressful. Something had to give. I found a Doggie Daycare that came highly recommended. Sumter has been going there for the past week and a half. This has been a godsend for everyone. The work day is much less stressful, Sumter gets to play all day with other dogs and he is calmer at night after depleting much of his puppy energy during the day.  A win-win for all!

Getting Wired

Right after my last blog post, I hit my limit during one of Colin's hate-filled diatribes. He was in his usual spot on the family room floor parked in front of his laptop. "Why don't you go to your room?!!" I snapped. He replied that he didn't have internet hookup in his room. After confirming this with Dad, I asked how long it would take. Hubs said it would take a few hours and proceeded to complete wiring the connection the next day.

Now Colin is not dependent on using a common space room for internet hookup. I am a bit surprised that he will still frequently continue using the family room connection. I'll take that as progress that he doesn't want to spend all his time at home in a windowless, basement room.

Other Observations

Many parents in my online support group have moments of grief over being a main trigger for their children that leaves them limited in their ability to interact with them. I'm not sure why but I don't have the same sadness. Some of this lack of despair can be explained by the difference in Colin's sound sensitivities from most misophoniacs. As far as I know, the typical man-made misophonic-trigger sounds of eating, breathing, sniffing and coughing have never been an issue for our kid. I don't think that my husband and I are triggers. I believe that we are subjected to disrespect due to misplaced anger over the past year. While in hind-sight we may have done things a bit differently, I don't feel guilty over the actions we took to try to help our son.

 I have been feeling a bit detached from Colin as he is a bit of a stranger to me. I have no idea what goes on in my son's head. I often feel like a dispassionate observer, cautiously monitoring behavior, like a scientist in a lab.This is not the same loving momma's boy from two years ago.

Since our son's successful re-entry back home, I have been slowly recovering from the past gut-wrenching, emotionally-raw year of Colin's breakdown and his time away. We are doing so much better than I had hoped for but it will take time to reconcile. I don't mourn the loss of my little boy but instead try to be grateful daily for the progress we are making.We've seen the dark side and know that our situation could be so much worse.

I am keeping a watchful eye for any behavior that would indicate backsliding. There have been no days without hateful messages but we are having more periods of normal conversation. I am not seeing any outward signs of reactions to known triggers but I have noticed a vocal tic. The past several weeks, when the house is relatively silent, I have picked up on a sound that Colin makes. It is a low, guttural, swallowing sound; a bit like that of a bullfrog. This usually happens during the tense early morning hour at breakfast or when at night when I am alone with him in an awkwardly quiet room. Coping mechanism, nervous tic or my imagination? Perhaps one day I'll have an answer.

As always, we are a work in progress!