Holiday Weekend

It seems like Colin has been in a better mood since his ear surgery. We are still subject to shushes but they seem a little less frequent. It also seems like we are able to get longer threads of conversation with our son.
Both my husband and I wonder if this is due in part to a successful ear surgery to remove excess tissues in the ear sinus, as well as to close up to hole he's had since birth
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The purpose of the procedure was to eliminate a source of constant infection. While we don't believe that the pit was a direct cause of Colin's sound issues, we think that by cutting down on infection-causing bacteria in the ear sinus cavity, his symptoms may be reduced. I asked my middle-son if he noticed a difference and he did but attributed it to a different set of factors: Colin was happy to have the summer free for activities and was excited about the possibility of working. Either way works for me!

Unfortunately due to the fact we are unable to discuss his sound sensitivities, we have no way of knowing for sure.

Making Strides

Cross Country team practices started right after Colin's surgery. It seems like his days are back on schedule. He needs to be at his school by 9:00 a.m. and I have been doing most of the shuttling. On one of these trips, I noticed that there was a community pool just a block from the High School. Colin is anxious to find a life guard job. We found out that there may be an opening in late July / early August when college students start to go off to school. He dropped off an application.

In addition to running, he is working on a study guide for Biology based on a book and coursework from this past school year. He plans to market it to fellow students. Colin is also working on Calculus notes for his NHS service project where he plans to be a tutor.

I am relieved that Colin has some activities other than video games to occupy his time this summer.

He will be taking a one week Summer Gym class and is looking into trombone lessons.

Independence Day

The family of one of my middle-son's friends has an annual party on July 3rd. Colin has not gone for the last several years due mostly to not wanting to run into kids from his old school. I was surprised and delighted when he decided to attend with his brothers this year. Colin realized the only people he would know would be his brother's friends.

I socialized with the adults while my boys disappeared into the house. As the party was beginning to wind down, I went in to find the boys.  Colin was playing cards with his middle-brother and three other boys. It did my heart good to see him laughing and having a great time.  They made me stay for another 30 minutes while the finished their game. I gratefully obliged.

On the way out to our car, I noticed a camaraderie between the boys that has been rare to see these past few years. I also noticed that Colin has grown another inch or so and is now about my height.

My heart was filled with joy!

Time Keep Flying By!

I started this post a week ago and am happy to report that we are still on track. Sunday we went to dinner as a family at a nearby pub. Earlier that day I took the boys to Walmart to buy canvases and paints for Colin and his middle brother. Inspired by seeing his middle-brother's artwork from the past school year, Colin decided he wanted to paint as well. Mostly this is due to a competitive streak and thinking he can do a better job than his talented brother.

I can't wait to see what the rest of the summer holds. I am savoring every bit of normalcy as no one knows what the future holds. I will remain hopeful!

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

Life In Pictures

This past weekend was the NYC premier of "Quiet Please", a documentary of living with Misophonia by Jeffrey Gould. I wanted to attend but the cost and timing were less than ideal. So many of my virtual friends whom I have bonded with over this disorder were there. I had to settle for combing through FaceBook posts and photos to get glimpses of the weekend. The reviews were glowing and I can't wait to get my copy of the movie. The only complaint I heard about the weekend was there was not enough time to visit with everyone. That's what happens when there is so much awesomeness in one place. Everyone was left wanting more!

Action-packed Month

It has been a few weeks since my last post. The time has been action-packed.
 

Right before Memorial Day Weekend, my middle-son slipped and fell during a game of kickball at school. He fell backwards and tried to catch himself resulting in two broken wrists. While middle-brother was in the hospital waiting to have surgery to put a metal-plate and pins in one of the wrists,  Colin and his eldest brother had a dinner-dance fundraiser for the High School Jazz band they were to perform in; Colin on trombone, his brother on trumpet. Hubs stayed at the hospital while I went with the boys.

Through the wonders of technology, I was able to keep up with the surgery via texts while enjoying the dinner and band. Colin seemed to be in a good mood. He likes performing and was happy to have his eldest brother back from college. Colin also seemed to not mind ( dare I day enjoy) having his injured brother help put him in the center of attention as the group was buzzing about the medical drama.

Next came middle-son's High School graduation. This year we made sure to get to school early so we could get good seats. Last year, although we were on time, we were forced to watch from the 2nd floor balcony for eldest's  ceremony. Colin was a bit restless so I asked if he would like to use my camera to take pictures. He jumped at the chance and took over 100 photographs! It made my heart happy to see my son still had his passion for photography.

Over this past weekend, Colin borrowed the disc from my camera to download and edit some of the pictures. I was able to sit nearby and was asked for my opinion on some of the edits. It almost felt like old times, before Misophonia damaged our relationship. I live for times like this.

Picture me with a smile on my face! 

More Surgery

Colin had his finals the week after his brother's graduation. When he was done, at the end of the week, he had surgery on his ear to close up the hole.  I was a bit concerned due to his wonky sleep schedule. Days and nights were almost completely reversed. Colin was playing video games until 5 or 6 in the morning and then going to sleep for most (if no all) of the day.

The day of his surgery, Colin did not get to sleep until between 5:30 - 6:00 a.m. and had to get up by 10:30 a.m. to go to the hospital. His surgery was around 2:00 and went relatively well. The only real issue came when it was time to wake up to go home. The nurses had a hard time waking Colin up. He was the last surgery of the day and they wanted to go home; a groggy Colin was not in such a hurry.

While recovery was fairly speedy, Colin decided to skip his brother's graduation party the next day. He was worried that there would be some guests that he went to middle-school with. Colin still has much shame and embarrassment from the year he abruptly left to live with his aunt and transfer to a school close to her home.

At least he had a good excuse to stay home and take care of the dog.

Starting the Summer Off on The Right Foot

Cross Country practice has started and Colin seems to have gotten his sleep schedule back on track. I had mentioned to him last week that I was concerned how he would be able to manage working, going to practice and perhaps taking a class or two. (Summer Gym and Trombone lessons).

My son told me that I should not be concerned and that soon his days would be back on track. It looks like he was correct. Monday morning, Colin was up and ready to go to practice. Unfortunately the lifeguard job he thought was lined up, was no longer open by the time he emailed the aquatics director over the weekend.

Fortunately this was not a setback for Colin. He said that this would open up his time for other activities and his middle-brother told him he would try to get Colin a job at his pool in late July when kids start going back to College.

I also checked into a pool that is close to his High School. They take guards at age 15 but all positions are filled at the moment. I was advised to have Colin put an application on file in case things open up in a month or so. I emailed a link to my son.

It seems like things will all work out.

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

Found My Purpose

This morning, after being shushed just minutes earlier, I was summoned by Colin.

"Mom, there's a bug in my room!".

I waited a minute or so to respond and then asked the obvious.

"Do you want me to get it?"

After being given coordinates (on the floor, directly below the light switch). I went down with a couple of sheets of toilet paper in hand. I found the tiniest of spiders curled up in a ball and picked it up. I showed my find to my son who flinched and backed away as he nodded in the affirmative. 

I guess I have found my purpose in life!

The Joy of Listening

Having my son vent to me about others has been another job I take pride in. The upside to Colin having issues is when he vents to me about them. The trick is to mostly listen and not to try to offer up solutions, although the "mom" in me can't help making a few suggestions.

A few weeks ago, my son told me about a group project for science. The assignment was for each group to make a video related to biodiversity or a similar topic based on ecology. Colin mentioned that two boys that he would not normally have picked as teammates, asked to be in his group. They were not the best of students but my son felt they seemed nice enough and would make an honest attempt at pitching in with the work. I had a not so good feeling about this.

The first week of the project, Colin was beginning to be concerned. He was worried that the other two boys were in no hurry to get started. He had a difficult time getting meetings set up and there appeared to be some "artistic" differences. Most of Colin's ideas were being rejected and the other boys' ideas were a bit off-topic. It was clear they had not done the required reading.

There was a section where my son wanted to do a Steve Irwin bit and needed a hat and clothing to look like an Australian wildlife expert. I was able to pick up a few things at Walmart while helping my middle-son with finding envelopes for his graduation invitations. I also loaned my tripod and helped with a few props. 

The reward was being able to hear about his presentation and being allowed to watch the video in his room.

I was surprised and delighted to see my name in the credits. When I asked about that, he told me that the other boys' moms did nothing to help. He also gave credit to his middle-brother who helped not only with ideas but appeared in the video as his acting skills were needed.

It was clear as I watched the other two boys fumble through their lines, that Colin was clearly the one who did the majority of the work. Colin was more than a little pissed-off at one of the boys. It got back to Colin that this teammate was bad-mouthing him around school. He was also claiming to be the brains of the group, although Colin's friends say that the boy was clearly joking. Unfortunately my son did not think the boy was joking and was not amused.

In the credits, Colin listed himself as the producer, the writer, the directer and that he did all the work! The other boys were given credit as actors and teammates, although both roles were small.

There were a few life-lessons for everyone. For the lazy students, they will think twice before ever wanting to work with Colin again. My son might seem nice and congenial but in reality he is a control-freak who will exact revenge for those who try to take unfair advantage. The lesson for Colin is to be a bit smarter in choosing future groups.

I am trying to keep my distance and let Colin work through this situation. He still is planing to talk to the teacher to make sure he knows how little the other boys did, especially the more difficult of the two. Colin does not think the boys should get the same grade as him. He is also upset as he feels that if he had a different group, the project could have been so much better. The scores have not been handed out yet, but I thought it was a solid effort and should be at least a B+. Colin has a 95% before this grade so he should remain an A. The other boys have Cs & Ds  and should only be helped.

Should be interesting to see how this plays out.....

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

Every Day Is Mother's Day

This past Mother's Day Weekend went by quickly and was largely uneventful. Colin is continuing on his all-day sleeping and staying up all night. These are the highlights from the past week:

• On Thursday night, Colin passed his Lifeguard Training. His dad went to pick him up and spoke with the teacher. Our son aced the written exam but his instructor felt he could benefit from another session to fine-tune his teamwork skills. There were only five people in his class and pairing up with a partner had to be rotated. I also can't help but wonder if part of Colin's "wiring issues" make it more difficult to work with others. Colin plans to go to an extra session at the end of the month 

• Colin has been battling a nasty head-cold for a while. On days where he does not get enough sleep his symptoms seem to worsen. Although he started to improve over the weekend, he decided to skip his Ultimate Frisbee Team's tournament on Sunday. One of the school teams involved had players that Colin went to middle school with. He decided to skip the meet with the excuse of being sick, although he did tell his dad and eldest brother the real reason was due to not wanting to see boys from his past. While I understand he still is ashamed of the year he left school abruptly to live with his aunt, I had hoped he would be able to have moved on by now. he just does not want to have to explain.

• Sunday night, we celebrated Mother's Day with Chinese take-out. At this point in my life, I am grateful for a quiet family dinner. That was enough of a gift.

• Monday night when I picked Colin up from school, he was a bit chattier than usual. He is in the midst of a group project for science and having some issues. The other two boys in his group, are not classmates he would have chosen to work with but they seemed eager to be in his group. Colin decided against his better judgement to accept them as group mates for a video project. I believe the combination of two less-than-stellar students and an above-average control-freak makes for a volatile situation. But on the bright side, I appreciate that my son is choosing to open up and vent to me!

As always, we are a work in progress!

Never Enough Hours in a Day

The past month has been a whirlwind of activity. I wish I knew how much sleep Colin is getting and I worry it is not enough. Ultimate Frisbee has replaced swimming for the Spring thus the chauffeuring continues.

Highlights from the past month:

• Colin was inducted into the National Honor Society a few weeks ago. I learned about the event 45 minutes before he had to be at the school. I found out that evening as I was about to pick the dog up from daycare. I was able to fetch the pup and do a quick change and only be 5 minutes late in dropping him off before finding a parking spot. Fortunately there was a 15 minute period before the ceremony and disaster was narrowly averted. On the way home I was told that the reason my son joined this group was so he could do his service project. He wants to tutor other students in Calculus. #proudmommoment
•  Last week Lifeguard Classes started. Thankfully this will be over at the end of the week. I am under the gun to race to the high school, pick up my son and shuttle him to the class by 5:00 p.m. As stressful as this is, I am glad to be able to do this task. I also take a few snacks to my son for the short ride to the pool. This seems to help with his mood.
• Eldest came home on Friday for summer break from his first year at college. Colin seems to look up to his brother and seems glad he is home. 
• Last night on the way to his class, Colin mentioned he needed a study guide for the SAT Biology exam. He apologized for the late notice but needed us to get it that night. I was able to locate a copy at the local B&N bookstore and Dad picked it up. In addition to all his activities, study sessions start tonight for the 2 subject test. He will be the first of my boys to take this exam. My middle-son mentioned that he regretted not doing this as this test is important to get into the top universities. 
• Colin is still on a wonky sleep schedule. When he comes home at night. ( Now 9:30 p.m.) he falls asleep, usually in the bathroom, for several hours. When he wakes up, usually in the wee hours of the morning, he is panicked and frantically will try to catch up on studying and schoolwork. This is a crunch week, with AP tests coming up, his after- school activities and preparing for exams. 
• Occasionally I will perform some internet searches to keep track of Colin's online activity (what is public). I stumbled upon his profile on a gaming site. I am able to view activity over two week periods. One period which one of the weeks fell over Spring Break, my son racked up 103 hours! That is equal to having a full-time job with overtime! He has been gaming approximately 55 hours over the last two weeks which is more like a part-time job but still a bit worrisome. I mentioned this to my eldest who said I should not be concerned. I was told that this is the amount of time logged in and does not indicate hours in play.

Overall, Colin continues to hold steady. Some days are better than others. The routine and concerns remain. I am relieved that my son has maintained a 4.0 and higher throughout the school year. He seems to be focused on his schoolwork and college prep work. While I feel that computer games have been beneficial to my son's coping, I do worry that he is spending too much time online. Time that could be better spent sleeping and resting his brain. Unfortunately, my husband and I have an agreement to continue a hands-off approach as long as the 4.0 GPA remains and he is able to peacefully coexist in our household.

All in all, I continue to be grateful for where Colin is today. Life is not perfect but it is good enough. The trick is to not worry about the future and to focus on the day-to-day. It is also helpful to keep expectations simple. I can live with the daily "shushes" when my son wants quiet. I can even handle infrequent "Shut-up"s. I draw the line at the "rages" from a few years ago and am glad there have been ZERO since Colin has been back from living at his aunt's house.

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

The Pit

Spring break is over. The boys are back to school this week and we are getting back on track with the daily grind. Yesterday morning I awoke to an intermittent beep. I knew right away this was one of our Atomic clocks whose battery was running low. Hubs got up and began the search for the culprit. He started by looking in eldest's room that is currently being used as my husband's top-floor office while our son is away at college.

Quietly my husband motioned for me to follow him as he stopped at the doorway and pointed. There lay Colin, wrapped tightly in his fleece blanket, sleeping in his big brother's bed. This is only the third time I can recall Colin sleeping in a bed since he has been at home. When he was at his aunt's home, he slept on a rug, refusing to use the Murphy Bed.

We let him sleep for a bit until Dad needed to wake him. Colin explained that he was up at 4:00 a.m. and came upstairs to ask his middle-brother for some help with some school work. No surprise, his brother was fast-asleep. Colin decided to crash in the empty bed in his eldest brother's room next door. I am marking this as a bit of progress.

Doctor Visits

During the boys' break, my husband scheduled doctor visits. Colin had his annual check up at the pediatrician. The doctor was impressed with Colin's progress. He has grown a few inches and his demeanor is so much better. One of the areas of concern was a pit at the top part of an ear that Colin has had since birth. This is also known as a preauricular ear pit It fills up with a pus-like substance and sometimes appears infected. (photo below is from web)


Colin was referred to a specialist and willingly went without any hesitation. At the visit to the ENT, the physician recommended surgery to remove the excess tissue and close the opening to the sinus. Faced with the option of having the surgery now versus later when it would most-likely be a much bigger issue, Colin, much to my surprise, decided to schedule the out-patient operation right after school lets out in June.

While I was elated at my son's mature decision, in looking at the paperwork for medical history in the folder my husband brought home, one line caught my eye. It was a short two-word description under "Problem List".

Behavior Disorder

The label that grabbed my attention under "Problem List" was "Behavior Disorder". This sort of thing gets under my skin and I do a slow burn. What irritates me is the random labels used to sum up the trauma our family has faced for the past few years.

This is EXACTLY my problem with illnesses and disorders that fall under the umbrella of "Mental Health". There is no doubt in my mind that the root cause of Colin's issues are neurologically-based. To categorize this as a behavioral problem is a slap in the face.

If someone had a broken leg would that be described as "walking issue" or can't walk right? How about someone that has MS being labled "uncoordinated"? Or Parkinson's as a nervous, shaking ailment????

This is another example of why I have so much disappointment at the state of our mental health care. Despite the fact most of what falls under "Mental Illness" is rooted in a biological cause, the term implies (at least to me) that these issues can be treated simply with talk therapy.

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

Reading The Signs

Owly by Andy Runton

When Colin was eight years old one of his favorite book series was Owly by Andy Runton. He used to tell me about some of the stories he read. I was stunned to discover the books relied on pictures and symbols and not words to tell stories. It was a real eye-opener to discover this after hearing the vivid descriptions my son had relayed to me about Owly and his friends' adventures. It was hard to believe how much my son was able to glean from using his powers of observation to pluck a detailed story simply from illustrations.

Oddly enough, due to the limited contact we have with Colin, I now need to use my detective skills to be able to piece together what is happening in my son's life. By using a combination of eavesdropping, emails from school, pumping the other boys for information, comparing notes with my husband and using my powers of observation, I have developed a certain fluidity in reading the daily details of Colin. I have become more patient and to try not to press our son for details. All will be revealed over time.Colin's time.

This is part of our new normal.

The Shut-Up Warning System

Colin continues to avoid any mention of what might agitate (trigger) him and it is hard to decipher what might be Misophonia as opposed to normal teen annoyance. I have not witnessed a single rage since he has been back home for almost two years now. Instead we are given simple verbal cues.

I have developed a "Colin Warning System" to categorize my son's mood.

Shush - a single shush indicates "No more talking", signalling the start of being bothered.

Shush, Shush - a double shush for " I don't want to hear a peep out of you. I am in no mood". This is sometimes done as a preemptive strike before a single word is uttered. It is best to avoid eye contact and go about your business. Quietly. And in another room."

Shut Up! - "I mean business. Go away and leave me alone. Not one more word. You have pushed the limit."

DIE! - "WTF? Did you not hear me? You have not heeded my warnings and I now want to kill you." At this point do not utter another peep and if possible run like hell to another room. Preferably on a different floor.

Verbal Jenga

Similar to the game with blocks, Verbal Jenga is played with words. I have learned before I speak to Colin, it is helpful to assess his mood. Ideally it is best to have him start the game ( conversation) and answer in as few words as possible.At any given point I will be shushed and the discussion comes tumbling to a halt.

If I make the first move, there are a few simple tips to prolong the shut down:

1. Is the question or comment absolutely necessary? Do not make small talk.
2. Am I relaying something of interest? You have better luck with topics near and dear to Colin's heart. 
3. Try to assess mood before speaking. Good mood = Green Light, Unreadable=Proceed with Caution and Red=Stop and wait till later.

When Colin initiates contact, I try to keep my response short and to the point, however I sometime try to push my luck. This morning was one of those days.

Our dog was trying to cough something up and Colin yelled upstairs to me that Sumter was puking. I asked where he had barfed and came down to look. I could not find anything. After telling my son that there was nothing to be found, I started a new topic.

I had signed Colin up for for Lifeguard Certification classes that start next month and wanted to make sure he got my email and text from yesterday with the details. He will need to miss some of his Ultimate Frisbee team practices over the course of two weeks. I needed to hear that he was o.k. with that and totally on board so that I am not wasting money. I also wanted to give him the news that the pool where the classes were being taught need lifeguards, they hire 15 year olds and he could get a job there if classes went well.

As I was being shut down, I tried to write the news on paper. I grabbed a pen and something to write on.

"Don't even bother!" I was told. " I won't read it and I'll just rip up the paper".

Game Over!

 Team Effort

I have relied on my older boys to help relay information and for recon as to what is happening with Colin. We have been so lucky to have this. While eldest is home for Spring Break, I am having him pick his brother up from school. Yesterday eldest went early to participate in Ultimate Frisbee practice with his baby brother. It does my heart good to see the boys get along.

Middle-son has been coaching his younger sibling to apply to a summer program on Mechanisms of Human Disease that he participated in last year. It is a prestigious class with limited space and only the top students from the area are accepted. It is rare for a rising Junior to get in and middle-son thought Colin has a chance at this, especially as a legacy.

I saw two sheets of paper by middle-son's door this morning and picked them up. It appeared that Colin wrote two different essays for his brother to review. After reading them, I was impressed and took pictures with my cell phone so I would have a record. Middle-son caught me and asked me to delete them. He did not want to betray his confidence with his sibling. I apologized and complied.

Sometimes a mother has a hard time with boundaries. I worry about next year with both of my older sons away at school. We will be left with just Colin and his trusty canine. I have no idea what the coming school year will hold.

Will we be able to maintain the stasis we currently enjoy? Will we manage without mediators? What will become of us?........ Stay tuned!

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