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!

Important Research that Needs Our Support

Early in our wild ride, I remember asking our psychologist why "Misophonia" is under the umbrella of Audiology. I was confused why this was not considered a Neurological issue. I couldn't understand why the medical community was not involved in helping to find answers.

He explained that the magic key comes down to money. Research can not happen without funding. Several months ago, I stumbled upon a study that I found exciting. New technologies are able to see much more detail of our brains. There is evidence of a biological basis for Sensory Processing Disorders of which I believe "Misophonia" to be part of. 

I reached out to Dr. Marco, a neurologist who is heading this study. I was excited to see a Neurologist doing the type of research that can help children like Colin. I asked to be kept in the loop when the crowd-funding campaign kicked off to provide funding for ongoing research.

Last night I received an email from her:

“I am afraid for my grandson because he will be considered a behavior problem instead of a child who "feels" the world differently.”—Grandma Nancy 
Dear Bonnie,
After the publication of our brain imaging study showing clearly different brain connectivity for children with sensory processing differences (SPD), we began receiving an outpouring of support from families and friends of children and adults with sensory differences. The words of encouragement were moving and invigorating for our entire team who is working to understand the genetics, brain connectivity, cognitive and behavioral challenges, and most especially treatment for our affected kids. After hundreds of emails and over 50,000 hits to the UCSF article describing our first publication, we realized it was time to reach out and see if we could find grass roots financial support for our work. The research is expensive and as you know, the medical and funding community is just beginning to embrace the need for research in this field.
So, as October is national Sensory Awareness Month, we are kicking off a crowdfunding campaign to raise money for UCSF’s sensory processing research program.
I desperately need your help in spreading the word. If everyone who read the first article gave $25 dollars, we would have enough resources to forever change the way we care for children with sensory differences.  Here is the link to the crowdfunding site: 

https://crowdfund.ucsf.edu/spd.

I hope that together, we can raise the money to make a difference.

Yours truly,

Elysa Marco, MD
University of California, San Francisco
Associate Professor of Neurology, Psychiatry and Pediatrics
Website: spd.ucsf.edu


For less than 1 cent per day ($25 donation) you can help promote the type of research that I believe is key to unlocking the mysteries of "Misophonia". Please consider supporting this project as well as sharing this link.

Support UC San Francisco: Kids with Sensory Processing Disorders Need You

Help UC San Francisco raise $50,000 for the project: Kids with Sensory Processing Disorders Need You.

crowdfund.ucsf.edu

Relatively Good Weekend / Making Progress

Friday afternoon the sun was shining and I was able to get home from work at a decent hour. I had not been to the dog park during the week due to rainy weather and being busy. I quickly unloaded the car, grabbed a quick snack and announced that Sumter and I would be going to the park.

Colin initially greeted me by telling Sumter to "Kill her" and a short time afterwards asked nicely if I could be home by 7:00 p.m. to give him a ride to his school's football game. I said "Sure!....if you can go the rest of the night without telling the dog to kill me".

My son responded with a soft-spoken "No. Go kill yourself."

"O.K...suit yourself." I replied on my way out the door.

Due to all the rain during the week, there was a large mud pit at the park. Needless to say, Sumter had a great time and ended up caked in mud. Upon our return home, I immediately got to work giving the pup a sponge-bath in the 1st floor bathroom.

Colin knocked on the door and asked if I needed help. I took him up on his offer. When it came time to leave for the game, Dad decided to drive. We both felt that Colin was being conciliatory and may have been trying to make up for his earlier bad behavior. We also are glad that our son seems to be at ease going by himself and has classmates he sits and socializes with at the football games.

Saturday Errands

Saturday afternoon I decided to run errands. I mentioned that I was going to Sam's Club and thinking of taking Sumter along for a ride. It was a cool day and it was o.k. to leave the pup alone for short periods of time. Colin decided to come with me and seemed a bit more agreeable than usual.

I was still subjected to a couple of "Kill her"s and "Go kill yourself" which almost seem to roll off my son's tongue without much thought or malice. We made two more stops after Sam's Club. We went to the music store as Colin told me he needed slide grease for his trombone. We then went to the pet store to buy some treats for Sumter. After our pet store excursion, I could see Colin's patience wearing thin so we headed back home.

Saturday Night Out with Family

My brother and sister-in-law were in town to visit with their daughter for parent's weekend. My niece is a freshman at the local state college.  We made a plan to meet up for dinner. Colin asked if Sumter could come along. We told him that this would not be possible. I was delighted that our son decided to come anyway. Eldest son got home from work just in time to come with us but our middle-son had plans with friends and we dropped him off on the way to our destination.

The only tense part of the evening was when we were in route to the restaurant. We drove past the Children's Hospital where Colin spent the first couple of nights after his "visit" to the psychiatrist. I felt my chest tighten and held my breath for the section of road that the institution was visible. My memories of our time there are not happy and filled me with stress. I silently wondered if Colin had noticed and if he had any reaction. If so, he kept it under wraps.

We arrived at the eatery the same time as my brother, sister-in-law and niece. Dinner turned out to be a nice excursion and another fairly normal family outing for which I am very grateful.

Sunday House Hunt

Going down our check list, we came to another huge task. We need to make a decision on whether or not to build a new home. We have a lovely plot of land that we have owned for roughly 16 years. We held off building due to some financial uncertainties.

We are feeling more secure but time is not our friend. Our eldest will be starting college next year and Colin will only have three more years of high school. Our middle son is enthusiastic about building a new home and is anxious to get moving. I think he wants to have a nice home for his senior year of school and is looking ahead to his graduation party. We would like a place that is comfortable for Colin and Sumter.

I decided to test the waters and told Colin that we were going out to Aunt "P"'s to visit and look at some nearby model homes. He was up for a visit but a bit on the fence about looking at houses. I explained that we need the boys (Colin and his 16 year old brother) to have some input as we want them to be happy and need their opinions.

At first Colin said that he didn't care, all he needed was his own space and if he was able to live in a basement room with bugs he'd be o.k. in a new home. When we got to my sister's house, we were able to convince him to come along as we brought the dog and Aunt "P" with us. We were able to walk through four model homes before the boys were ready to call it quits.

We are getting a better idea of what our boys like and it is interesting to see Colin's wheels turning. He seems concerned about costs and budgets. There was one home the boys really like but a bit over-budget and bigger than what we needed. Colin thought about it and said he's be willing to give up the loft space if we needed to make cuts. I asked if he would want an upstairs bedroom and he gave me a squinty-eyed look of consternation.

"I'll be in the basement!" he huffed.

Later at home, Colin talked more about the new house. He asked several questions and is concerned that the process will take a year or two. I am encouraged that our son seems engaged in the process. This weekend we've had the most dialog with Colin since he's been back.

Optimistic Observations

Before our difficult journey with Misophonia started last summer, Colin would tell me non-stop that he loved me. This got to be a bit excessive and was annoying to my husband and other boys. I was a bit concerned at the repetitive nature, almost like a tic. As we started to go downhill with triggers and reactions, I often wondered if he was trying to convince himself of his love.

Now we are experiencing a similar phenomenon with the messages of hate. "Go kill yourself" or "Kill her now." have replaced " I love you" or "How are you doing?". Could this be a coping mechanism? Is he trying to maintain his angry, unforgiving stance toward the past year? While these hateful statements are quite prolific, we are starting to see our son open up more and have more civil conversations with us.

We are trying to tread lightly and not push too hard.

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

Miso Mysteries

Last night as I watched Colin turn on the family room ceiling fan before settling down in front of his laptop, I had to do a double-take to make sure my eyes did not deceive me. This can't be so. I watched the spinning blades as they sped up indicating the fan was turned ON not off like I expected. Last year he was not able to be in a room with an active fan and would constantly turn them off. This is the first time I witnessed him turning one on.

It is a real mystery as to what of my son's former triggers still bother him. I'd love to know how he is coping.
I can tell when he is agitated or in a bad mood. The "Shut-Up" s, "Go Kill Yourself"s and telling the dog to kill me are quite prolific. I wonder if he channels his rage into hate toward my husband and I. He has told his brother that he will never forgive us for his stay at the Psych Hospital and all he was put through the past year. My goal of Colin taking "ownership" of his issues will not be happening anytime soon. He is a smart boy and my guess is that while he may have overcome some of his triggers, he knows better than to show any reaction for fear of a repeat of last year.

The good news is that he is coping much better than we could have dreamed.

One Mystery Solved

I had noticed that lately Colin had been spending a lot of time upstairs in the family room instead of his room in the basement. He even has been falling asleep on the family room couch. I had thought that this was progress; that he wanted to spend more time among the family. I even dared to hope that he wanted to be around his parents. My husband thought that perhaps now that the heat is on due to the cool Fall weather, his insulated room can get pretty warm. There also was the theory that the internet connection is better upstairs.

My middle son debunked those theories. Apparently we have some giant Ninja centipedes that disappear as quickly as they appear. Colin had an encounter with one in his room that disappeared behind his dresser, never to be found. My middle-son told me he had one crawl over his foot while in the "gaming section" of the basement. When asked how big these creepy-crawlers were, he held out his hands, a foot apart.

While this was an exaggeration and the bugs were more like 3 - 6 inches, the "creep-out" factor remains firmly planted. This is why Colin has been hanging out in a common area amongst the family.

I may have found a new therapy! Using insects to keep Misophonia in check.

Brilliant!!!!!

As always...

We are a work-in-progress!!!!