Monday, November 14, 2016

Good Weekend

The progress continues. It seems like very slowly, our relationship with Colin is improving. While day by day the change is barely perceptible, looking back three years, we have achieved what we once feared not possible. Our new normal is not too far off from plain old normal!

Middle son came home for the weekend. Colin's mood seemed to brighten.On Friday, I took my college freshman with me to pick up his baby brother from school. As Colin approached the car, he seemed giddy with excitement. Next stop was to pick up the dog from daycare. I was beyond thrilled to listen to the boys chatter away. It gave me a chance to gather some "intel".

Life is good!

There was a flurry of activity over the weekend and Saturday night we watched a movie together, (Heathers), followed by Saturday Night Live.

We continue to try to be as hands-off with Colin as possible other than trying to help keep him on track with getting to school and activities. While the majority of his behavior is fairly normal, a few "quirks" remain. Colin still prefers riding in the back seat of my van. He continues to keep an irregular sleep schedule, falls asleep either on the family room couch or the couch in his basement room and often sleeps in his school clothes.

School continues to go fairly well other than his Latin 3 class which is threatening to bring his GPA below a 4.0. Fortunately he seems motivated to try to fix that. The other area of concern is Swim Team which recently started up again. Colin has already skipped a few practices due to school work and other activities. He may be in danger of not being able to participate in meets if he is not attending 85% of his workouts. School comes first and we support Colin on doing whatever it takes to keep his head above water. Colin for his part wants to swim to stay in shape and seems willing to accept the consequences.

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

Friday, October 21, 2016

Good Discussion

This morning was another late start. It was raining and I started my routine a little later. At 6:45 as I was about to wake Colin, he sat up suddenly and for once, I did not have to wake him. The usual time to try to tell him to get up is around 6:15 - 6:30 unless Colin has to be at school early.

We arrived pretty much on time. Colin asked me to hold off on opening the door so he could pack up and put his shoes on. He asked what time it was.

"Eight O'clock" I answered.

"Damn it Mom, I need to get to school earlier".

I asked whose fault that was and was told it was mine; I needed to wake him. We had a back and forth about how many times it takes me to try before he finally wakes up. I told him that he needs to use an alarm clock and take responsibility.

This was one of our longer discussions. One where I was NOT told to "Shut Up". I pulled away and was amazed how calm I was. Not a hint of anger. Any other boy I would have been fuming. Instead I felt this was a bit of progress. Colin and I had a "normal" argument.


We are a work-in-progress!

Friday, September 30, 2016

Full Circle

Life has been relatively calm and on an even keel. I have started to make a concerted effort to clean my office at work and my papers at home. As I dig through papers, I am constantly finding reminders of our lives from three years ago, when our journey with Misophonia had started.

Progress has been slow but steady. I often forget how far we have come. Our relationship with Colin has been much improved but not perfect; not too far off from comparison with his older brothers. It is difficult to separate normal teen angst from annoyance to select stimuli. Our son is adept at hiding any reactions to triggers so it is hard to know what sounds bother him and to what extent.

I will take this as a good sign!

 Time


 One of the most poignant symbols of the not-too-distant past is the clock that is pictured above.

I was cleaning the living room and wanted to give the chair and couch, that we keep covered in sheets for the dog, a good vacuum. I removed the cushions of the chair and low and behold found my clock that was tucked away. Colin used to hide this (formerly) ticking clock all the time. We believe this was among his earliest trigger sounds. Even with it's batteries removed, someone found the need to tuck it away.

New Issue


For much of the past year, Colin seemed to have been suffering from a never-ending case of the sniffles. This has continued even after his surgery. Dad took him to an ENT for allergy testing. Low and behold his biggest issue seems to be "Dog" as well as Ragweed and Weeds.

Colin has allergy medications to help but he has been reluctant to take them. When I asked him how he feels about this new issue, he replied, "...It's worth it!"

 Hopefully love conquers all!





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

Tuesday, September 13, 2016

More Like a "We" Problem

8/25/16 : The last couple of weeks have been a flurry of activity. As the summer break was coming to an end, Colin has stepped up his game with Trombone Lessons,  starting work as a Life Guard and continuing with Cross Country Running practices. His middle-brother was extremely helpful in driving him to his lessons and to work. Eldest has pitched in as well.

This past weekend was especially action-packed. My brother was in town to celebrate his 50th Birthday and my sister's house was a hub of activity. On Sunday, we drove our middle-son to college. After a long day of getting him settled, hubs and I came back home in time to feed the dog his dinner and to throw a load of laundry in. On my way to the washing machine, I noticed Colin's door was open and I veered off course to peer into his room. He was at his computer playing a video game. He heard me and turned to greet me with a squinty-eye glare.

"Get out!" he warned, followed by a preemptive "Shut-Up" before I uttered a word.

I turned and continued to the laundry area. I knew better than to try to engage. I know better than to try to talk to my son when he is gaming. It had been a long day for him as well he had worked from 9 am - 3 pm and it appeared he had been unwinding for a few hours. I decided to leave him be for a bit.

Before I was going to get ready for bed, I went back down to talk to Colin. I wanted to make sure he had one more trombone lesson left as I was the one who needed to take him. He tried to "Shush" me away but I was persistent. He grumpily answered my question about whether he had a lesson.He told me it was implied. The teacher left it up to Colin . I asked if he wanted to go and he gave me a terse "Sure". I then tried to explain that I would be on a tight schedule and it was important that we get the schedule planned out.

"Sounds like a "You" problem", Colin sneered.

I shook my head and chuckled at his insolence. "More like a "We" problem" I said under my breath. I retreated back upstairs and went to bed.


It Takes a Village

Puppy misses you.
It's been a few weeks since I started this post. Middle-son is now in his freshman year at a university that is 2 hours away. Eldest is home for the semester working at his first co-op job and in his sophomore year of college. Just before middle-son left for school, we had a nice heart-to-heart chat. He confided that he was concerned how his little brother would do by the time his middle-brother left for school. We both are pleased that Colin has exceeded our expectations.

Not only have we been able to peacefully co-exist, but there has been much improvement in our relationships. Colin seems to have repaired his relationship with his middle-bother. He also looks up to both brothers. Before Labor Day weekend, he emailed this photo to his brother as part of a campaign to "guilt" his brother into coming home for the long weekend. (Which he did ). Colin had sent me the same photo a few weeks before when he was unable to hang out at my sister's house when my brother came in for a visit.

Eldest is currently working across town and passes by Colin's school. He has helped with a lot of the driving. This takes much stress off my shoulders. It also gives the boys some "together time".

When we started our journey 3 years ago, I feared our family was being torn apart. Instead this experience taught us how to work together as a family. Ditto for my relationship with my sister. It strengthened our bond and I owe her big-time. Life has not been perfect but confirms what Nietzsche has famously said. While the adventure is far from over, we are all stronger for our experiences so far, thanks to our "We Problem"..

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

Tuesday, August 2, 2016

Sunglasses at Night

Last night I took Colin and his middle-brother out for ice cream (fro-yo). I wanted to reward my 18 year-old for taking his younger brother to his first trombone lesson of the summer. Colin thinks he has a good chance at 1st chair in jazz band this coming year and wants to be up to the task.

I found a teacher across town that was willing to work with my son until school starts back up. Monday is the best day as the Country Club where my 18 year old works is closed that day and will save me from that duty for a few weeks.

Colin seemed to like the instructor and is interested in continuing lessons for the next several weeks. I am more than happy to do what I can to encourage this positive endeavor.

When I offered to take his brother out, I told him to see if Colin wanted to come as well. And he jumped at the chance. As we left the house, I noticed that Colin was wearing his glasses and quickly snapped on the magnetic sunglass component. I wanted to sing "I wear my sunglasses at night" but refrained. It was dusk and no real need for this other than to try to conceal his identity. The frozen yogurt shop that middle-son chose was close to our home and a hangout for local teens. I am assuming the stigma of a few years ago still exists and Colin did not want to be recognized by former classmates.

Thankfully there were no awkward encounters. Afterwards we stopped at the grocery store for a few things. Colin asked if he could get a pack of gum. I responded, "Sure! You can pay me back when you start working!"

He flashed a smile my way and handed me his pack to purchase.

If all goes well, in another week or so, Colin will start work as a lifeguard at the same club middle-brother works at. His middle-brother convinced the supervisor to bend the rules to allow a 15 year-old to start near the end of this season. This way Colin would be trained for next year and can help cover hours as several guards leave for college.

We have the paperwork completed and ready to turn into the High School office so that he will have the proper work permit.

With a future so bright, I can indeed see why my son is wearing sunglasses at night!

We are a work-in-progress!

Thursday, July 28, 2016

About Last Night

Last night I was asked by my husband to take Colin to a presentation by Johns Hopkins University as he had to work late. When I arrived home from work, I fed the dog and asked Colin about the event. He was concerned that he was not signed up and wasn't sure if he was interested in the school. I ended up convincing him we should go.

When we arrived at our destination, I was encouraged that the parking lot was not crowded. I told Colin that I doubted we would get turned away but if we did, I would take him to dinner. As we approach the door, Colin's guidance counselor greeted him and asked how his brother was doing. I told him that the casts were removed and he is healing up nicely. Colin expressed concern about failing to register for this talk and was ushered in with a smile and assurances that this was fine.

I let Colin choose where we sat. He picked some seats near the doorway. This was his first college presentation and I was interested to see how he would react. I took a few notes while Colin seemed to be attentively listening. At one point he glanced at my notebook and grabbed the pen out of my hands. He quickly scribbled an "s" after John. Duh! It's Johns Hopkins not John....

Kid does not miss a trick!

Dinner Out


On the way home, I asked Colin about picking up some dinner. He was very agreeable. He seemed to be in a decent mood and a bit chatty. I can't remember how we got on the topic, but he mentioned about all the time he had built up on one of his games (Fall Out?). He mentioned that it was over 1,000 hours and that it is measured in two week intervals. Recently he had over 50 hours per week!!! When I feigned surprise ( I already knew this from keeping tabs) and said, " Wow! That is a lot of time! That's like a full time job!" He assured me that it was not as bad as it looked. Much of that time he was logged in but not playing. He was either waiting for a game to load or occupied with something else.

I asked about restaurants and we ended up agreeing to eat at Bob Evans near our home. I thought it might be nice to invite the other boys so I put a call into my eldest. He said he'd be up for it but changed the dinner to another place. One of our favorite pubs has "All You Can Eat Shrimp" on Wednesdays.

We had a lovely dinner and lively conversation. And best of all, not one "shush" from Colin. As we left to go home my elder boys, who drove together, decided to hang out in the area to go "Pokemon Hunting" while Colin and I left for home. We had a good chuckle watching all the "zombies with cell phones" trying to capture mythical creatures.

Oh wait, now I remember, the conversation about gaming came AFTER dinner.

A Few Other Tidbits


We recently bought a new-used car. It is a 2 year old Chrysler with all the safety bells and whistles. Colin mentioned that he would prefer that he learn to drive on our old mini van. This way if he had an accident, it would not be as devastating.

Not sure how I feel about that!
_________________________________



The last two nights Colin has gone to bed (sofa) at a decent hour and in his basement room. He had been sleeping on the couch in the family room to avoid bugs in the basement; an unfortunate hazard that is to be expected. I also noticed that lately he had been wearing a green knit cap that reminded me of Mike Nesmith of the Monkees. I did not give that much thought.

michael monkee mike nesmith Car TuningLast night my husband told me a funny story about the day before. Colin had his follow up visit to the ENT doctor to see how he was doing after the surgery. Dad mentioned that his son was concerned about his scars and is wearing a cap to hide his ears.

Colin was irritated and spoke up. "That's not why I wear it!!!"  he blurted out. "It's to protect against the spiders!"

The nurse had a puzzled look on her face and Hubs had to hold in his amusement. Now it all made sense. He wanted to sleep in his room and was worried about spiders getting in his hair. Love these "Ah-Ha Moments"!

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


Tuesday, July 12, 2016

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
.

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!


Wednesday, June 22, 2016

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!





Tuesday, May 24, 2016

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!

Wednesday, May 11, 2016

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!

Tuesday, May 3, 2016

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!






Wednesday, April 6, 2016

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)
https://upload.wikimedia.org/wikipedia/commons/thumb/0/09/Preauricular_sinus.jpg/230px-Preauricular_sinus.jpg

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!

Wednesday, March 23, 2016

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!

 

Thursday, March 17, 2016

Time / Change

This past Sunday, we set our clocks ahead one hour and Colin set his ahead one year as he turned 15 that day. We seem to be maintaining a relative stasis and time seems to be flying by. The biggest current hiccup is being able to wake up on time as our internal clocks have not quite adjusted to the time change.

Schedule Change


I woke this morning and looked at my alarm clock. It was 6:50 and around the time I had wanted to leave the house. I jumped out of bed, took care of the dog, yelled to Colin, who was sleeping on the family room couch to wake up and I scurried up the stairs to get dressed and ready for the day. Before my ascent I reminded Colin that it was St. Patrick's Day and he needed to wear green, to which I was met with a "Shut Up!".

Today is also "Senior Skip Day" and my middle-son had made it clear he had no plans to go to school today. I woke my husband to have him deal with the drama as I did not want to add to my routine to have to take Colin to school.

As I was leaving the house, I looked at the living room clock. I was already more than 30 minutes off schedule. I loaded my belongings and the pup into my van and was ready to pull out, when Colin came running out of the house. He was half-dressed and shoeless. At least he was wearing a green shirt and coordinating tie!

"Wait!" he exclaimed. " I need to get to school early and am almost ready!".

I marched back into the house. I was told my son needed to be at school by 7:50 and my senior was stomping around upstairs. Forced by his dad to skip the skip-day and go to school, he was prepared to take his younger brother but there was no way he would get him there on time.

Exasperated, I asked "What do you have to get to school early for?" and Colin answered with four words that changed my attitude.

"National Honor Society Meeting"

Change of Attitude 

 

Due to our sparse communications with Colin, there are many details of his life that we are not clued into. The only hint I had that our youngest son was interested in joining the National Honor Society was an off-hand explanation why he skipped his Ultimate Frisbee Team practice one day last week. I was told he had an interview with two teachers for this prestigious society. While I was proud of our son, I have learned not to ask further questions and all would be revealed in good time, "Colin's Time".

I silently sighed as I finally made it out of our driveway and completely rerouted my morning. First stop: the boys' high school. There are far worse problems to have in life than a little extra driving. I reminded myself how truly lucky we are. *Moment of Gratitude*

As I pulled into the oval to drop my son off, I noticed the gas light was lit up on my dashboard, indicating I was about to run out of gas. I took a deep breath and told myself it would be o.k. but I still could feel my stress-levels rise a bit. I was ten miles from my next stop and driving a new mini-van. I was unclear how many miles to empty the tank was. 

I ended up getting gas at the nearest convenient station on my route adding a small additional cost to filling my tank. At least my stress-levels were lowered a bit. When I finally made it to my office I was an hour and 15 minutes off my desired arrival time. 

Putting things into perspective, life is good. I was not late for anything, did not run out of gas and my son is doing good. Make that GREAT! I won't be sporting a boasting bumper sticker, nor will I post this as a status on my FaceBook page. So you have an exclusive: 
It looks like my son is going to be a NHS Student!!!!!  #proudmommoment!

 Birthday Boy


Colin is still on a wonky sleep schedule and we continue to leave it be. On weekends he continues to live like a vampire, sleeping all day and up all night. His time-change / birth day was no exception. Tradition dictates that we take the birthday boy out to dinner and a movie of their choice. 

Colin woke up in time for dinner at Max & Erma's and then the movie "Whisky, Tango, Foxtrot" at 7:10 p.m.
Sunday night at the movies rewarded us with an empty theater. There were only two other people in the screening. They were seated in the back row and extremely quiet. It felt like we had the place to ourselves and I could not help but tell Colin that we arranged for a private screening. 

"Wasn't it nice that we rented out the entire theatre for your birthday?"

He cracked a smile at my joke.  On the way home, we picked up a chocolate cake. After lighting candles and enjoying a piece of chocolate cake, Dad brought a giant box in from the garage. Colin got a new computer for his birthday.

Colin was a bit subdued and politely thanked his father but added that all he really wanted was Lifeguard Certification classes so he could get a summer job as a Life Guard. I replied that he will get the coursework but not as a birthday gift as we had done the same for his brothers. Dad explained the reason for the new computer is that his laptop is a bit out-of-date and does not have enough memory to support all his games and computer programs.

In the end, it was a nice, somewhat normal birthday which in our world is extraordinary! The only thing missing was the presence of our eldest son who is away at college. We are all looking forward to his return at the end of this week.



Band Mom


Yesterday I was a volunteer driver for Colin's Jazz Band. This entailed waking up at the ungodly hour of 5:00 a.m. to get dressed and ready to chauffeur to a local performance. What made this task especially tough was the fact I had only a few hours of sleep. Our night owl came home right after school on Tuesday with his brother and immediately went into a coma from 4 - 9 p.m.

After a pizza dinner, Colin was up the rest of the night for homework and who knows what else. At 2:00 a.m. our son decided it was time to practice his trombone. I have no idea if he had the door to his room closed and did not have the energy to find out. Unfortunately half-way into his session, the dog started whining to go out. I was not destined to get any sleep.

I was rewarded with a chance to transport my son and two other boys to their gig and hear them interact. It did my heart good to see that not only did my son seem to fit in, he was in his element as the boys discussed Math and Latin classes.

I also had the chance to connect with another band mom. Part of our discussion turned to mental health issues. She has a teen daughter dealing with anxiety.  I briefly shared that we had faced some challenges with Colin due to some "Sensory Processing / Select Sound Processing" issues. We share a common belief that most mental illnesses have a biological basis and that brain research is not where it needs to be.

We originally started talking about her mother's Alzheimer's which led to the topic of brain research which then crept into mental health. She mentioned her daughter's struggles with Anxiety to explain her interest in the topic which made me feel safe to confide the reason for my interest. We found much common ground and felt we were destined to meet. There are so many similarities in dealing with Anxiety and Sensory Issues ( Misophonia). We both are obsessed with trying to help our children while facing the stigma of a disorder that falls under the umbrella of "Mental Illness".  

She has found support through her church while I have been fortunate to have discovered help online in support groups. We share the bond of having a stigma-inducing family issue that we don't often discuss with others. Fear of being unfairly judged and misunderstood forces us to try to maintain a stiff upper-lip.  I often wonder how many of my friends and acquaintances are facing hidden hardships. I pride myself on being an "open book". It is a challenge to keep our issues with Colin quiet. 

As I reflect over the past few years, I am extremely proud of what our son has been able to achieve, as well as our successes in navigating this tricky terrain on our own, without the help of pedigreed professionals. 


As always..... "We are a Work-In-Progress!







 

Monday, February 8, 2016

Uber Routine

The word uber has two different meanings. When used as a prefix or adjective, it can mean super or extreme. When used as a noun, we think of the car service, Uber. Both variations seem to currently apply to our lives.
It seems that we have gotten into a groove and Colin is in a super-routine. A large part of this routine entails my chauffeur services. I feel a bit like an Uber driver.

No complaints here. It just makes it harder to post meaningful updates to my blog.

All Good Things Must Come To An End


Swim season has accounted for a large part of our uber-routine. I have had the privilege of driving Colin to early morning practices thrice weekly and weekday after-practice pickup. I pack a box full of a variety of snacks, pick up my hungry and tired swimmer and then on to the doggie daycare to fetch "Colin's dog".

Depending on Colin's mood, I might get some conversation where I learn snippets of useful information about his life. The trick is to have a quiet car, good treats and let him initiate the conversation. I also keep my responses as short as possible.

Swim season and practices are ending soon. Thus so will this uber-routine!

Car-ride Intel


School seems to be going well. Colin has informed me about an economics project where he has a stock portfolio to manage. We were able to have a nice discussion about stocks and he looked up the performance history of  a few of  my stocks.

He also mentioned the PSAT test that high school sophomores take for practice. Colin mentioned that the scoring was a bit messed up and he did not do so well. I asked if he did not have enough time to finish or if he did not know some of the material. He replied in the negative to both.

Solving the Mystery


While Colin was not concerned about his testing results, I was perplexed. We had yet to see the results but after the scores should have been released, our mailbox has been filling up with mailers from colleges all over the US. Some of these have been from prestigious institutes of learning. It made no sense to me why top-notch schools would be reaching out to someone who had less-than-stellar scores.

I put a call into the high school guidance counselor and my suspicion was validated. Colin's results were not terrible, nor was there a mistake in scoring; just confusion in our son's interpretation.

In "Reading" he received a 650 / 760 and "Math" a 740 / 760.  I was told that if Colin can work on the reading, he could be in the running next year for National Merit Scholar.

Not only did I feel vindicated for my gut-feeling that something was off, I felt a great deal of pride. I was especially grateful that Colin was not given extra time for this test. This can work against him for tests like the ACT and SAT.

I am hopeful the future can be bright if we can help our son keep his sound issues under control.


 Sleep Schedule


The one part of of uber-routine that I am concerned about is Colin's crazy sleep pattern. During the week he will fall asleep in my car and it has been challenging to get him into the house. We then have a crabby and groggy boy who immediately finds a place to collapse and will nap for hours. It is not unusual for his dinnertime to be during the 11:00 news (or later). He then spends the wee hours of the morning either playing video games or doing homework in his room.

Sounds from our son's room can travel up the heating vent into the upstairs loft. We can usually tell when Colin is gaming due to yelling and swearing, which we are told is part of the gaming culture. Most parents would try to enforce a curfew or crack down more than we are. If the swearing is clearly audible, we will go down and request our son to "cool-it" and "quiet down".

My husband and I discussed at length what to do about this and we decided as long as our son continues his 4.0 Honor Roll status and his behavior is non-disruptive, we need to let him self-monitor.

I have noticed an increase of "shushes", "shut-ups" and even a rare "Die!" when our son is extremely tired and needs his rest and a quiet house. We continue to accommodate as much as possible.

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



Monday, January 4, 2016

Happy 2016!

In reflecting back on 2015, I'd call it "The Year of Gratitude".  There is so much to be grateful for. We may never be fully reconciled but I am content for where we are today. Colin is able to peacefully coexist in our home, he has been maintaining Honor Roll status at school while keeping a full and challenging schedule.We try to give him as much control over his life as possible which seems to be working.

The most noticeable "quirks" would be his preference for riding in the back of the car in complete silence. To accommodate our son, we keep the car radio off and tend to be quiet unless spoken to. I've learned to keep my questions and answers to a minimum as per Colin's original demand of "no unnecessary conversation".

He prefers to spend time in his room with minimal parental involvement, not unlike his older brothers. We have been concerned about his sleep schedule and the amount of time spent playing video games, however as long as he is maintaining his 4.0 GPA and able to continue with his other activities, we are keeping quiet.

To the untrained eye, our son would appear to be a neuro-typical teen.

Christmas Break 


The holidays have been blissfully uneventful. Eldest has been home for a few weeks now. He has helped take Colin to most of his swim practices, staying to swim with the team. I'm sure that Colin appreciated the interaction with his big brother. As a result, he had a 100% attendance rate for holiday practices and earned a free "Breakfast of Champions" this morning after lifting.

Christmas Day was quiet. The gifts were minimal due to the fact that no one asked for much. Colin asked for and received a new desk for his room. The boys also got mini drones as "Santa-Dad" felt the need to buy them each a toy. There was also money and gift cards from family and the usual candy-filled stockings.

The best gift that I received was a peaceful house and to see my boys get along.

This past Saturday, we made the 90 minute drive to see the in-laws. We took Sumter along for the ride and set up his crate and pen in their garage while we went to dinner. Our first stop after dropping off the pup and picking up Grandmommy  was to visit Granddaddy at the nursing home. He is in an Alzheimer Care Center, which is an uncomfortable place for teens. Colin was quiet but well-behaved.

Dinner and the rest of the visit went well.As did the rest of the weekend.

Back to the Grind


This morning was a bit tough for Colin. It took me several attempts to wake him. I also found that his laundry was still in the machines. I unloaded the dryer and put the damp clothes from the washer into the newly emptied dryer. I then proceeded to fold laundry in Colin's room until I was kicked out. Sometimes I have to be annoying to get the kid to wake up and get ready for school.

After Colin packed his lunch and bags, we were able to leave on time and make it to the athletic center for 6:15 a.m. lifting with over 10 minutes to spare!

Score one for the annoying mom!

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