Thursday, October 30, 2014

Important Research that Needs Our Support

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

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

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

Last night I received an email from her:

“I am afraid for my grandson because he will be considered a behavior problem instead of a child who "feels" the world differently.”—Grandma Nancy 
Dear Bonnie,
After the publication of our brain imaging study showing clearly different brain connectivity for children with sensory processing differences (SPD), we began receiving an outpouring of support from families and friends of children and adults with sensory differences. The words of encouragement were moving and invigorating for our entire team who is working to understand the genetics, brain connectivity, cognitive and behavioral challenges, and most especially treatment for our affected kids. After hundreds of emails and over 50,000 hits to the UCSF article describing our first publication, we realized it was time to reach out and see if we could find grass roots financial support for our work. The research is expensive and as you know, the medical and funding community is just beginning to embrace the need for research in this field.

So, as October is national Sensory Awareness Month, we are kicking off a crowdfunding campaign to raise money for UCSF’s sensory processing research program.

I desperately need your help in spreading the word. If everyone who read the first article gave $25 dollars, we would have enough resources to forever change the way we care for children with sensory differences.  Here is the link to the crowdfunding site: 

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

Yours truly,

Elysa Marco, MD
University of California, San Francisco
Associate Professor of Neurology, Psychiatry and Pediatrics

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

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

Monday, October 27, 2014

Relatively Good Weekend / Making Progress

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

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

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

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

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

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

Saturday Errands

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

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

Saturday Night Out with Family

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

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

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

Sunday House Hunt

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

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

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

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

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

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

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

Optimistic Observations

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

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

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

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

Thursday, October 23, 2014

Miso Mysteries

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

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

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

One Mystery Solved

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

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

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

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


As always...

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

Sunday, October 19, 2014

Almost Normal

To some people, normal is boring, like it's a bad thing but in my world, I think boring is good. This past weekend was as good as it gets.

For most of the week, I've been ignoring Colin due to his constant "Kill Her" mode with the dog. I've been struggling how to deal with his Jeckyll and Hyde behavior. One minute he is sending messages that the dog wants to kill me and the next he will ask a question in a normal manner of speaking. I mentioned on Monday that I would answer his question (something pertaining to "The Voice" that was on the t.v. at the time) but after that I was not going to talk to him as long as he continued to use the dog to send hateful messages. I find it irritating that I am the one who is responsible for the majority of Sumter's care, only to be told the dog hates me. I love the pup but he adds a bit of stress to my workdays.

Later in the week, I whipped out my cellphone to record some of Colin's sing-songy killer-dog messages at breakfast. His reaction was quite interesting. He snapped into "normal" mode and asked what I was going to record.

I am beginning to wonder if my phone has magic powers. The bad behavior is only done in private. My son does not want to risk the outside world seeing his disrespect. I was not able to get him "on-camera" with his schtick but had fun trying!

As Good As It Gets

Saturday afternoon Colin and his eldest brother had their final cross-county meet. My eldest achieved his personal best time of his high school career and Colin had his 2nd best time of the year. As usual we brought Sumter along, as he has a calming effect on our son and has become a team mascot. Later that night, Dad picked up some pizzas to celebrate and we had a quiet night at home.

This morning we went to Bob Evan's for Sunday breakfast. I reveled in the "normal-ness" of the outing. When we got  home I decided to push my luck and see if Colin wanted to go to the dog park with Sumter and me. I was a bit surprised that he decided to come along. He brought his camera and seemed to enjoy taking photos and videos of the dogs at play.

Colin spent the rest of the afternoon in the family room, watching videos on his computer, listening through headphones. He has been spending more time upstairs. Some of this may have to do with better internet reception than in the basement but I will take this as a sign of progress.

At dinnertime, Colin fed Sumter and then took him outside to play in the backyard. He raked leaves into a pile for his pup to jump and play in. I am glad he was able to take a break from his laptop and get some fresh air.

Basking in the Mundane

Tonight as I am doing laundry, I decided to post an update to celebrate "Normal". While the messages of "Kill" have not completely gone away, they were kept at a minimum for the weekend. It helps to lay low and avoid contact.

I think I may need to write a book about "Detachment Parenting"...

Right after I publish my "Stress Diet" (I've lost around 20 lbs this past year and am down to my high school weight).

As always....

We are a work-in-progress!

Thursday, October 9, 2014

Bit by Bit

Colin seems to be making progress, bit by bit. He seems to have a better handle on school and there has been a slight uptick in his grades. Colin had another PR (personal record) at the cross country meet this past weekend, shaving almost 2 minutes off of his time. He started the season with a 32 minute 5K and he is now down to a more respectable 23min 18 sec. and has moved up from one of the last runners to the middle of the pack. His coach noted that a combination of new shoes, consistently attending practices and that our son is finally listening his coaches seems to be paying off.

 Friday Night Lights

Colin has been attending his school's Friday Night football games regularly. Usually he goes with his 16 year old brother, although they go their separate ways once they are dropped off. This past weekend he went to an away game by himself. Dad dropped Colin off and picked him up when the game was over.  Colin apparently has some boys that he sits with and seems to enjoy these outings. We are impressed at his school spirit and efforts toward socialization. Even Aunt "P" has been impressed!

Kill Her, Kill Her Now!

Colin still shows little or no reaction to former triggers and the only real bad behavior is shown only to my husband and myself. We have limited conversations unless our son needs something or joins a discussion we are having with our other boys.

Just over a year ago, my son would tell me non-stop that he loved me. It was a bit excessive and we were concerned. Now the messages of love are replaced with our son using the dog to communicate such "niceties" as "Kill Her (Him) Now",  "Sumpter wants to kill you and eat you",  "Vicious puppy wants to kill people" and dozens more variations. It almost seems like an automatic Tourettes-like  reaction and we wonder how much is anger and how much might be in response to a trigger. I am sure there is some jealousy over how much time I spend with the dog as his care falls mostly in my lap.

As annoying as this behavior is, all I have to do is remember where we were a year ago and it doesn't seem all that bad.

Permission to move the Fridge

One of the issues we have with the puppy is that he is a notorious counter and table surfer and will steal food every chance he gets. When we eat, he needs to be crated. Sumter's crate is in the spot where our refrigerator used to be.

A few days ago, Colin mentioned to me that we should move the fridge back into the house and put the crate in another room. I was surprised and asked why. He thought if Sumter couldn't see us eat, he wouldn't bark and want to get out of his crate. I didn't answer and shrugged. I'd love to know what sounds still bother our son and how he is able to cope but I know better than to ask him.

There are so many questions I'd love to have answers for but I realize it will take time.

All in good time. As always, we are a work-in-progress!