Monday, August 10, 2015

Gaming Theory

Another successful week and weekend. Time has been flying by and school will start soon. This past weekend was a tax-free school supply holiday and I tried to take advantage of this. I took eldest on Saturday night and Colin on Sunday (yesterday) afternoon.

As I continue my policy of minimal intrusion with Colin, I am seeing results. Other than a few shushes when he is in a "mood" and does not want to hear talking or a "get out of my room" when checking in on him, our sparse interactions have been pleasant. Colin said "Yes" to a shopping trip yesterday afternoon and later that evening we went out to eat with eldest and my husband. Middle-son was tired from work and wanted to nap. Colin was in a relatively good mood and both events were enjoyable.

I've had several parents in my Parent Support Group ask about our method for helping our son improve. I mention a few things: 1. The Sound-Proofed Room  2. Allowing him to get a dog 3. "Detachment Parenting" (ie. leaving him the hell alone as much as possible) and 4. Video Games (Colin is able to play video games in the noisy part of the basement even when the laundry machines are going).

This morning I heard a story on NPR which reinforces my crazy theory that when engrossed in an activity that is enjoyable and requires a high amount of concentration, triggers can be tuned out. While my son refused to try Neurofeedback, I feel that video games may have the same effect in helping with triggers.


http://www.npr.org/sections/health-shots/2015/08/10/430149726/will-doctors-soon-be-prescribing-video-games-for-mental-health

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

Friday, July 31, 2015

The Normalest of Normals

The expression, "Normal is Boring" does not apply in my world. In fact, "Normalcy" rocks my universe. Last night was so freaking normal, I could almost cry. I am still so locked-up emotionally, the best I could manage was a small lump in my throat and a warm feeling in my heart.

Eldest will be leaving for college in 2 weeks. We need to start shopping for school clothes. Colin has been sprouting up a bit and could use some new clothing as well. My middle-son and husband had an event to go to. I decided to take the other two boys to a nearby outlet store.

We pulled up to the warehouse just in time for closing. I had thought the store was open later. We decided to go on to Great Clips, so Colin could get a much-needed haircut and then on to dinner.

After a bit of a debate with my eldest, we decided to go to Bob Evan's for dinner. Colin seemed to be in a relative calm mood and was fairly agreeable about our choice of venue. We had a relaxed dinner and the boys conversed about the upcoming school year. I was content to sit and bask in the aura of "normal-ness".

Toward the end of our meal, Eldest noticed a fellow summer "swim mom" at the counter getting take-out. We waved and she stopped by our table to say hello before leaving with her order. In addition to having a son, the same age of eldest, she also has a boy who was a former classmate and teammate of Colin. The fellow swim-mom is one of the few outside of our family who knew about Colin's story. She chatted for a few short minutes but did not speak directly to Colin.

I was amazed that my son hid any discomfort he may have had, as he tries to avoid anyone from his past to escape any uncomfortable questions. Even more remarkable is as I looked around, after our friend left, I noticed all the ceiling fans twirling around on the ceiling. I did not detect even the slight flinch or annoyance from my miso-son!

Last Weekend - Another Normalcy High


Adding to my "Normalcy High", was a couple of successful family outings last weekend.

Saturday night my husband, middle-son, Colin & I went to a late-night showing of  "Train Wreck". Not exactly the most family-friendly movie but I never claimed to be a great parent. On any day I will throw "Family Values" out the window in lieu of a slice of  "peaceful pie".

We arrived at the theatre early. Colin and his brother got a XXL bucket of popcorn and a couple of jumbo drinks as well. The boys like to add butter-flavored salt to their favorite movie treat. Apparently Colin was a little too generous with the salt which was centered in the pile of popped corn. I unknowingly grabbed a handful from the center and was rewarded with a mouthful of salt. The boys laughed as I grimaced and Colin offered me a sip of his drink. I was amazed at this gesture. We have come a long way!

(please note that movies are not an issue for us like other miso-families as mouth and eating noises do not seem to annoy my son)

Sunday afternoon, Colin, Sumter and I went out for a visit to my sister's house. Colin spent much of the time there playing video games with his cousin while the dogs played and I hung out by the pool with my sister and brother-in-law. We stayed for dinner before heading back.

What a difference a year makes. We are doing so much better than I ever dreamed possible. In a couple of short years I have gone from one of the most pitied parents in my parent support group to one of the luckiest.

I have no idea what the future holds and I am more than content to hang on to moments like these....

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


Wednesday, July 8, 2015

Quiet Please... A Project Worth Supporting

Filmmaker Jeffrey Gould is undertaking a project to make a documentary about Misophonia and the toll it takes on lives, families and relationships. He is running a campaign for funding on IndieGoGo .

Please consider a donation to this worthy cause. There are some great Perks besides the ultimate goal of spreading awaremess!


Tuesday, June 30, 2015

A Weekend of Normalcy

The last few weeks have flown by. Graduation party for the eldest, working on a kitchen remodel, and not much out of the ordinary to report. I sometimes forget how far we have come until I am reminded by either my sister or by reading old posts in this blog.

The boys have been busy with activities. The older two have work and swimming. Colin has been going to cross country practices and recently finished up a SAT review class. The new X-Box has also been getting a workout with Colin and his middle brother. Having two teen boys that can drive has been a lifesaver for our family. The boys can be left home alone during the day and are fairly self-sufficient.

I have decided to continue with weekday doggie daycare for Sumter. I know from last year, that our pup will be largely ignored other than mealtime and bathroom breaks. I have found that Sumter is easier to manage when he has had a full day playing with other dogs and comes home worn out. Our beloved pooch has been instrumental in Colin's reintegration into our home. I am committed to providing the best care possible for him.

Almost Like Old Times

This weekend has been one of the most "normal" since our son has been back.Friday night, Colin and his Dad went shopping for new running shoes. Saturday night Colin came along with me to pick his brother up from work.  We got take-out from Wendy's then stopped at the grocery store on the way home. The boys stayed in the car while I purchased  a few necessities.

Later that night, Colin mentioned that he might want to go running around the neighborhood. He was feeling guilty about missing Friday's cross country practice and wanted to test out his new shoes. I looked at the clock and it was almost midnight. I mentioned that it was late and not a good idea. I realize that he does not want to run into anyone he knows from his middle-school days. The stigma from his interrupted school year still hangs over his head.

Sunday afternoon, while I was mowing the back yard, Colin, Sumter and hubs came out back. I took a break and we all sat down. Dad decided to take Colin down to his high school so he could run the team's usual path. As we relaxed and chatted for a bit, my husband and I exchanged glances. Not a word needed to be uttered to know what the other was thinking. We were having a "normal" boring day. And we were ecstatic!

To top things off, we made plans to go out for a Sunday family dinner. The WHOLE family. After some deliberation we decided on a nearby restaurant. Colin and his middle brother wore sunglasses. For my 17 year old, he was making a fashion statement. As for Colin, I believe this was for protection, in case he ran into someone he used to know.

Dinner Confessional

The coast was clear with not one familiar face in the restaurant and dinner was relaxed. The boys bantered about. My middle son mentioned his upcoming trip with me to NYC. Just the two of us are going on a mini vacation to visit family, take in a couple of college visits and see a play that my nephew is in. To my surprise, Colin mentioned that he might want to go. His middle brother mentioned that it was too late, tickets were already purchased. I mentioned that we can take another trip with him.

Truth be told, this would have been a very bad idea. While I am encouraged that Colin was interested in going with us, I know he is not ready. Until he is able to openly talk about his sound issues, there is too much room for things to go terribly wrong.

However, we may be seeing baby-steps in the right direction. In the course of our dinner conversation, my middle-son mentioned that he is slightly OCD. He and his eldest brother got into a debate about this when Colin chimed in.

"You know." he piped up, " I was diagnosed with OCD". There then was a bit of silent hesitation and we all dropped the topic. This was the first time our son had mentioned something from his hospitalization. While he was never formally diagnosed with any disorder, this was one of many possibilities mentioned.

We are all being careful to avoid mentioning anything from "the year that is not to be spoken of". We don't want to spook Colin. I have found that if you focus on listening and not reacting, every now and again a snippet of information will slip out.

Baby-Steps....

As always we are a work-in-progress!

Friday, June 26, 2015

23andMe & Misophonia

A short time ago,  the evening of Thursday, Jun 11 to be exact, I was lounging on the couch, watching television when my husband walks into the room.

"Did you get my email?" he inquired.

When I asked for a little more information, he told me to just go read it. I begrudgingly went to my computer to retrieve his message, more than a little irritated that he could not just tell me.

When I pulled up the message in question, I about fell out of my chair. I could not believe what I was seeing:

If this email isn’t displaying correctly, view it in your browser.
23andMe

Sensitive to Certain Sounds?

The genetics behind the hatred of sound

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You are receiving this email because you are a customer of 23andMe.

 I was stunned. I was then told to read part two. I am pasting parts of it below. It is important to note that 23andMe would have no way of knowing our issues with our son. The significance is HUGE. The power of "Big Data" in the form of customer surveys makes a case for a significant percent of our population having this disorder. This may be the breakthrough that is needed to get researchers and the medical community to take notice.

And now, the rest of the story from 23andMe:

Sensitivity to the Sound of Chewing (Misophonia)

Are you annoyed by everyday noises such as the sound of other people chewing? You may have a mild case of misophonia: literally a "hatred of sound". Misophonia can be brought on by a variety of sounds made by other people including breathing, nail clipping, footsteps, and, most commonly, eating. About 20% of 23andMe customers describe themselves as "filled with rage" by the sound of other people chewing, suggesting that misophonia may be quite common. Furthermore, female 23andMe customers are almost 30% more likely to report this sensitivity than male customers. Unfortunately, misophonia has not been well studied by scientists and very little is known about its causes. An internal study at 23andMe, however, shows that genetics may play a role.

Keep in mind that:
  • This report describes study findings observed in groups of people. The findings may not be representative of you as an individual.
  • The genetic markers reported here are associated with normal variation and generally have very small effects on the trait.
  • Many factors besides those described here may influence this trait.



Genotype Genetic Result

GG Slightly higher odds of being sensitive to the sound of chewing..

AG Typical odds of being sensitive to the sound of chewing.

AA Slightly lower odds of being sensitive to the sound of chewing.


For More Information, See 23andMe June 4 Blog Post:
http://blog.23andme.com/23andme-research/something-to-chew-on/

Sunday, June 7, 2015

Happy "Gotcha Day"

Today is "Gotcha Day". It is the one year anniversary of getting our puppy and bringing our son back home. It was a nerve wracking experience, not unlike bringing a newborn baby home. We had just finished building the sound-proofed room in the basement. It was the start of Summer vacation. We had no idea how reintegration would go.

Would the changes to our house be enough? Could our son be able to live peacefully with us? Would he reestablish a relationship with his brothers?

Today is also my middle son's birthday. Last year was not a great one. All of our focus was on our youngest who not only got a new room but a puppy on his brother's birthday.

Birthday Celebration


Today we had so much to celebrate. We made a big deal over my 17 year-old's special day. After he came home from work, we went out to dinner. Then back home for cake and gifts.

Colin has seemed very interested lately in coming up with suggestions for gifts for his brothers. He's been asking what we were planning to give our eldest for high school graduation as well as showing an interest in what his middle brother was going to get for his birthday. When I asked what he thought we should do, a video game system was suggested for both. This is not a good idea for a soon-to-be college student but was duly noted for our middle-son.

The younger two wanted a certain game which is only out for the X-Box 1(newest X-Box). Hubs went all out & bought the new system with the game and an extra controller for the birthday boy. Middle-son was so excited we got big hugs. Colin was just as excited and surprised me with jumping in for a group hug. (the 1st in 2 years). He is upstairs now, in his brother's room helping set up the system. This is by far the happiest our house has been in a long time! 

Year-End Review


For the most part, Colin seems to be behaving like a fairly normal teen. The school year was fairly successful. Colin has been maintaining Honor Roll status and appears to be happy at his new school. He is famous for his study guides and has a group of friends he has been sharing study notes with.

My husband and I have been careful to limit our interactions with our son to allow Colin to initiate most conversation. He is most irritable in the mornings and I am careful not to make eye-contact and to steer clear of my son if possible. Since his return home, Colin has been able to control his reactions to former triggers so that it is hard to know what still bothers him. He is so good that his eldest brother thinks Colin is fine now.

Unfortunately I know that is not the case. Recently I had to pick Colin up from a volunteer gig and it started to rain. I heard a squeeking sound and looked in my rear view mirror to see what it might be. Turns out I left my back wipers on. I caught a glimpse of Colin with a towel over his head. I have not seen this behavior in the past year and am fairly sure this is his way to cope with the windshield wipers.

He also mutters under his breath. I recently caught a few swear words during a car trip. I am choosing to ignore this behavior. I have exceptionally good hearing and I believe this to be a coping mechanism.

As we begin this Summer break, we have much to be grateful for. Our boys seem to be getting along well. Colin will be taking a Summer gym course as well as a SAT-prep class. Cross country practice should be starting soon as well.

Fingers crossed for a routine Summer where Normal shall be celebrated at every chance.

As always, We are a Work-In-Progress.


Monday, May 11, 2015

Mother's Day Report

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

Play time


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

Shopping Trip


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

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

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

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

Other Tidbits


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

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

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


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

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

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

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