We had yet another rather successful weekend.
Saturday afternoon, I packed up Colin, the dog and Eldest and headed out. We dropped Eldest off at his job and then ventured on to my sister's house. I wanted to get some pool time as well as drop off a bucket of tomatoes from the garden.
After we dropped eldest off, Colin asked politely if I could turn the radio off. Eldest likes to listen to the radio and will take control of the stations. Colin has a healthy respect for his brother and is reluctant to give any signs of being bothered. His eldest brother is convinced that Colin is fine now. Unfortunately I know better. At least Colin seems able to cope.
I looked for any other signs of distress during the car ride but found none. The trip and visit went smoothly. I got to visit with my sister and her swimming pool and Colin spent most of his time with his cousin playing video games.
Sunday was another family day. We spent time with my husband's family. Colin went with his eldest brother early so that they could swim with their cousins at a club. My husband and I went later to his sister's house for dinner and some time with our visiting relatives.
Another great day. Colin seems to be more comfortable with family gatherings and appeared to have a great time!
Yesterday morning I heard another segment on NPR while driving the pup to daycare. I am really excited that my theory about complex video games may have some merit!
As always....We are a work-in-progress!
This story is about video games to help with neurological disorders applying for FDA approval.
From Wikipedia, the free encyclopedia: Misophonia, literally “hatred of sound”,[1] is believed[2] to be a neurological disorder characterized by negative experiences (anger, flight, hatred, disgust) triggered by specific sounds. This Blog chronicles our adventures with my youngest son who suffers from this disorder.
Tuesday, August 18, 2015
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!
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!
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!
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!
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!
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:
For More Information, See 23andMe June 4 Blog Post:
http://blog.23andme.com/23andme-research/something-to-chew-on/
"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:
| ||||||||||||||||||||||||||||||||||||||||||||||||||||
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.
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!
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.
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.
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