Mother's Day Report

It seems like we have settled into a new normal. It has been almost a month since my last report. It has been relatively peaceful at home. I try to keep my interactions with Colin to a minimum and let him initiate most conversation. This seems to work.

Play time

When Colin needs something, he will ask. A week ago he mentioned that there was a play at school that he could earn extra credit in a class if he went to see it.He apologized for the short notice and I offered to drive him. On the way to the school, Colin told me that the show was only about an hour or so and I decided to stay. He sat near some classmates and I moved further down the row so not to stigmatize him. I held my breath on the way home while using turn signals but have seen no reaction so far to former triggers.

Shopping Trip

Friday Night was "Mom Prom", followed by Junior / Senior Prom on Saturday night. My middle-son agreed to escort me to the dinner dance, He also had a date for the prom. He decided against renting a tux and we agreed that a new suit would do.

Tuesday, we went shopping for a suit for my son and a new dress for me at Macy's. Luckily we both found outfits but my son needed his suit pants hemmed. I arranged to come back Thursday night to pick up the suit. Upon the return home I found that Colin needed new pants as he seems to be going through a much-needed growth spurt.. He and his eldest brother also needed haircuts and I took them that night.

Thursday evening, I asked Colin if he wanted to come with me to the store to pick up the suit so he could find some slacks. He said, "Sure" and hopped in the car with me. I had the radio on and I could hear him "Shush". I peered into the rear-view mirror and he looked uncomfortable. I asked if he wanted the radio turned off and he said "Sure".

When we got to Macy's I instructed Colin to go to the boy's department while I took care of picking up the suit and looking for a wrap for my dress. I returned to find Colin had picked out two pairs of dress slacks and was ready to check out. I was so excited that not only did he find school-appropriate pants on his own, they were also on sale. I neglected to look at the washing instructions. My husband was none too pleased that these were dry-clean only. We will have to remind Colin to change his clothes when he comes home as he will play with the dog and sometimes sleep in his school clothes.

Other Tidbits

We have started to consider building a new home on land we have owned for over 16 years. We've been looking at model homes to get ideas.

A few weeks ago my husband and I saw a model that was close to what we wanted. I took the boys out to see the home to get their opinions. Colin has indicated that he would be fine with a room in the basement with no windows. I was pretty sure he would like this home. As we headed into the lower level, there was a ceiling fan twirling in the main area. Colin immediately went to the wall switches and fumbled to turn it off. His middle-brother saw what was happening and jumped in to help.

We both noticed that Colin seemed agitated and immediately left the vicinity and headed back upstairs. We instinctively knew that Colin needed some time to regain his composure. This is the first time since Colin has been back home that I was sure that I witnessed a triggered reaction. I have mixed feelings. On the one hand, I had validation that he still was affected by triggers and that he was able to control his reactions to some degree. On the other hand, I was dismayed at his discomfort.


Speaking of discomfort, we have an issue with the basement room. Bugs. We have the normal amount that you would expect in a basement. Unfortunately more than is acceptable in a sleeping room.We will vacuum bugs up when they are spotted but the ick-factor remains.

 Colin slept on the living room couch last night. He had mentioned to his middle-brother that he might want to take over his eldest brother's room when he goes off to college in the fall. Not sure how that will work out, we'll have to wait and see.

I am encouraged that there has been some progress toward reconciliation, although we still have a ways to go. We are much better off than we were a year ago and for that I am extremely grateful!

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

Weekend Update

As Spring Break was coming to a close, I had to stay over at my sister's house Saturday night. She had to attend an out-of-town event with her husband and her 17 year old son wanted to stay behind. He also wanted to have a few friends sleep over. I was to watch over the house and dog and make sure both were still standing when my sister and brother-in-law returned.

Colin ended up coming with me so he could visit with the dog. We haven't been to the house for a while and Colin may have ready for a change of scenery after a week of being mostly house-bound.

While we did not speak during the half-hour car ride and had minimal contact at the house, the trip was a success. When my son was finally ready for dinner, he asked me if I could pick up Wendy's for him. He also helped me with the t.v. in the family room as I did not know how to figure out all the steps to making it work.

At one point, one of my sister's friends came to visit and Colin sat with us in the living room and participated in our conversation. I was so impressed with how normal it all seemed. When my son was out of earshot, the  friend congratulated me on the progress.

Colin stayed camped-out in the living room with his laptop and blanket and spent the night bundled up on a soft chair. I slept in his old room. We hung out until 1:00 p.m. and headed back home. The house was still standing, none the worse for wear, the guests were well-behaved and the dog enjoyed the extra attention. Best of all is the lack of bad-behavior or disrespect from my son.

We may never get back to where we were before "Miso" reared it's ugly head but I am ecstatic at how far we have come.

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

Checkups and Checking-in

The boys are on Spring Break this week. This was the perfect time to schedule doctor and dentist visits. Yesterday morning, Eldest and Colin had their semi-annual dental checkups. (Middle-son is overseas on a school trip to Italy and Greece.) Later in the day, Colin had his annual exam at the pediatrician.

I am happy to say, both events went smoothly. No news is good news from the dentist. When it was close to the time for the pediatric appointment, Dad came to my work and switched cars with me so he could take Colin. Eldest had the other mini-van and we've been mindful not to use the Miata for transporting our sound-sensitive son as this noisy car used to be a huge stressor. Colin has not voiced any objections or shown any obvious signs of distress over former triggers but we are trying to be careful to avoid any potential irritants.

Hubs reported that Colin has grown 2 inches since his last visit 8 months ago. This is great news. We were concerned that he had not grown much the prior year and is small for his age. He is now 5' 2" at 14 years old, only 1 inch behind his brothers at that age. They are now around 5'10" at 16 & 18 years old, so Colin should hopefully catch up in a few years.

Colin was well-behaved for both appointments and seemed in a relatively good mood. When home at last, Dad was subjected to a few shushes which signaled it was time to leave our son alone.

Volunteer of the Year

The boys are required to volunteer a certain amount of hours as part of their High School education. Colin has been helping out at the local Irish Club, working events such as Fish Dinners. The work is relatively easy and the boys are sometimes rewarded with left-overs to take home. He had such a good time, he decided to put in extra hours to work ahead (unlike his brothers who waited until the last minute). Colin even worked on his birthday!

When picking our son up from a recent event, the volunteer coordinator came up to my husband. The supervisor wanted us to know that Colin is a hard worker and the best volunteer he has ever had.

Something to savor, along with the containers of food he brings home!

New Normal

As time goes on, we are achieving a new normal. We leave our son alone as much as possible. Colin spends quite a bit of time in his basement room and is able to have more cordial interactions with us. There are still the snippets of "bad behavior" ,which are fairly minor and becoming less frequent, such as quietly telling the dog "Kill" or "attack" or the occasional shushes and glares. It helps to give our son as much space and control as possible.

Colin continues to get good grades (3.9 avg.) and is consistently making Honor Roll. He also remains active at school in extra-curricular activities. He is now on the Ultimate Frisbee team with his eldest brother, and Engineering Team and NAQT (Quiz Team) with his middle-brother. He seems the happiest he has been in school. Middle-son tells me that Colin has friends and seems to be liked. This is such a relief. Our son is doing so much better than we had hoped for.

The biggest area of concern is the "unknown". Our son uses much of his free-time for online gaming and sits for hours in front of his laptop wearing his headset. He has set up a Skype account to communicate with his gaming buddies as they play. While this is considered a normal part of play, I am a little worried about his interacting  online with strangers. So far, there have been no "red flags" but I will continue to look for any.

The hard reality is that it is near impossible to protect our children from the world.

As always...... We are a work-in-progress!

Happy Birthday, Colin - 2015

Yesterday was Colin's 14th birthday. I got up early and went to Tim Horton's to buy a dozen donuts and a box of Tim Bits to start the day. Colin seemed in a decent mood and I made sure to have minimal contact to keep it that way.

He put on his new forest green dress shirt and tartan-plaid tie that I bought him this past weekend. What a difference a year makes. Last year we could not be under the same roof and refused to accept any cards or gifts from us. He accepted his birthday donuts which was shared with his brothers and took the Tim Bits to school with him.

We had to delay going out for a birthday dinner as Colin had signed up to help with a Fish Fry fundraising dinner at a local Irish Club to get his required volunteer hours in. When he came home, we celebrated with an ice cream cake. I was delighted that we were able to sing to him and I was able to get some photos.

The only blemish on the day is that my middle-son was not shy in voicing his resentment to me. Colin came home on his 16 year old brother's birthday. To make matters worse, that was the same day we picked up Sumter. I have no doubt that without this puppy, we would not have been as successful in bringing our son home. Unfortunately middle-son views this as his brother getting a gift of a dog and taking away the spotlight from the birthday boy.

This teenage angst is working my last nerve!

Other than the simmering resentment from his brother, Colin seems to have had a good week. Wednesday, Colin and his eldest brother performed in a high school band concert; Colin on trombone, his brother on trumpet. We were able to have a nice dinner afterwards. I really cherish these bouts of normalcy.

Tonight we have family coming into town and will dine out. I am delighted that Colin is on-board with the plans and not the least bit hesitant.

Time to start to get ready!

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

Team Spirit

This morning I had to take Colin and his middle-brother to school by 6:00 a.m. They are part of the Engineering team at school and they are traveling by bus to take part in a High School competition. The boy who said he would not do any school activities with his brothers nor claim them as being related seems to have long forgotten his proclamation back in July. Colin is active in school clubs and sports and is maintaining an Honor Roll status. He currently has a 3.9 GPA.

The Final Plunge

High School swim season is now over. Two weeks ago,  my eldest son made it to "Districts" in the 100 Breaststroke. We had to leave at the crack of dawn for a 90 minute car ride to the all-day swim meet. While my middle-son slept-in, Colin chose to come along to cheer his teammates on. Perhaps due to his eldest brother's presence, he was on his best behavior. During the car ride, I was only subjected to a couple of shushes when I was talking.

Colin sat with me up in the stands, was able to tell me where he was going when he left and politely asked for money when he wanted to buy some lunch. He even brought back my change. The only odd behavior was when we were ready to leave and had to wait for my senior to change and pose for a team photo. I noticed that Colin had his knit cap pulled down hiding his eyes. Former classmates and summer swim teammates were there with our local public high school team. I'm pretty sure he did not want to run into any of them. His shame over the past year runs deep.

 Quiz Time

Colin and his 16 year old brother also are on their NAQT ( National Academic Quiz Tournament) team and have been participating in weekend meets. Three weeks ago I drove the boys and a schoolmate up to Cleveland for a tournament. Other than the weather, things went fairly smoothly.

I took a break from the tourney to visit a favorite childhood deli. I purchased some of  the world's best corned beef and deli treats for my family as well as picked up an order for my sister. Colin remembered the deli from our last visit 19 months earlier when we were in town for my class reunion, right before our relationship went downhill.

Much to my surprise, he asked if I was going to Corky's and seemed pleased when I answered in the affirmative. Fortunately I had the foresight to go early, soon after the tournament started. The weather was snowy and the roads were starting to get a bit hazardous. I don't think I would have made the trip if I waited until the end of the day.

When I got back to the meet, I chose to follow my high school junior's team as Colin does not want me to watch him compete. The ride home took twice as long due to slippery, snowy roads and a detour around a 20-car pile-up. I was grateful to arrive home safely and that Colin was well-behaved the entire time.

Imaginary Friends

Due to a series of inclement-weather days off from school,  it would appear Colin has been spending a fair amount of time with online gaming. One recent evening, I brought the dog down the basement to check on my son. I opened the door and let the pup in only to hear my son say, "Mom. not now, I'm playing with my friends".

I stuck my head in his room to look for "imaginary friends" and found Colin seated in front of his laptop wearing his headset. I pointed to his computer and shot him a quizzical look. He nodded in the affirmative. I grabbed the dog and left. At least he was polite in front of his online buddies.

I spoke to my 16 year old to see if I needed to be concerned that his brother was spending quite a bit of time online with what appears to be total strangers. I was told no, and that I didn't need to worry. There are better ways of paedophiles targeting victims than playing "Call of Duty".

I have to trust that my son will be o.k. Things seem to be going well, at least on the surface. What lies below is anyone's guess...

As always, "We are a work-in-progress!"

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!