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.
Thursday, October 10, 2013
Tuesday, October 8, 2013
Going Post-al
Post to Parent Group Monday, Oct. 7. 4:33 p.m.
Looks like we got lucky; Neurologist appointment has been bumped up to this Thursday. Psychiatrist appointment is Friday. This is shaping up to be an action-packed week!
Monday, October 7, 2013
Sunday, October 6, 2013
Tired of Waiting
I've never been a patient person and I am tired of this miso-waiting game. We have 11 more days until Colin's neurologist appointment. We are still waiting for the call from Children's Hospital Behavioral Health Center to schedule a visit (psych research?).
Friday morning, I ended up leaving a voice mail for the person our pediatrician told us was going to call. My husband had to spend the day helping his mother fix things around her house. My in-laws live 90 minutes from us and my father-in-law has dementia. I was at work all day and did not want to miss her call. Unfortunately no word yet, therefore I have no details about what the interest is in our son.
Since my husband would not be home on time to pick up Colin after cross country practice, I had the "pleasure" of doing so. The older boys were upstairs, hanging out in their rooms when we arrived home. Colin made a sandwich and took a plate of food into the basement to watch t.v. and unwind. While he was chilling out, I heard his phone ring. I wasn't able to find it in time and checked to see who called. It was the same long-distance number of a telemarketer who called my phone earlier in the day.
As I was scrolling through his calls, I was immediately alarmed. His contacts consisted of swear words for each of us. My number was under "Mother F*cker" and his brothers and father also had swear words for their listings. Our house phone was under "Hell". To top it all off, the banner that flashed across his screen stated " I hate my b*tch Dad". Using profanity is against house rules.
I flipped out. He uses this phone to call us for rides, only to be abusive the whole ride home. I know this is the misophonia talking but I had enough. I marched down the basement stairs, ignoring demands of staying away and confronted my son. I screamed at the top of my lungs so that I would be heard through the headphones and threats my son was issuing. This is the only way to get his attention. I hate that it has come to this.
I stood my ground and refused to leave. I followed my son throughout the house. I had a message to get through to him. I will not be disrespected.The advice of "Please do not punish him for the reaction to miso. Normal naughty behavior yes punish." stuck in my head. It is hard to know anymore where the miso ends and the bad behavior begins. I filed this under "Bad Behavior".
Hubs was not as upset as I was but agreed this was unacceptable. He attributed the poor phone choice to being angry and bored. We've taken away all the other electronics and this is what he is left with other than his school books when he is in the "B & B". Dad reprogrammed the phone as Colin was fast asleep by the time he came home at 7:00 p.m.
Saturday was a whirl of activity. Colin and his oldest brother had cross country meets and my middle son had a quiz team tournament.
Mid-day I had one of my former employees bring her two boys over to pick up an old boy's bike, a tag-along attachment for an adult bicycle, and a few other hand-me-down books and toys. She was forewarned about Colin who stayed in the basement and refused to come up to visit. My eldest son was home and helped watch the boys on our play set until he had to leave for his lifeguard job. This was the highlight of my day.
Other than taking a shower and coming up for food and bathroom breaks Colin spent the bulk of the day in the basement. Once again he had fallen asleep early, this time on the rug between the coffee table and the television. It was pitch black down there and we needed a flashlight to see where he was. Our miso-son looked comfortable so we him alone.
I fell asleep watching Saturday Night Live with my 15 year old middle-son and woke up at the end of the show. Unable to sleep, I decided to write this post. It is now 3:30 a.m. Sunday morning and I am finally ready to get some shut-eye. At this point Colin is still in the basement.
Good night or should I say Good Morning?
We are a work-in-progress.
Friday morning, I ended up leaving a voice mail for the person our pediatrician told us was going to call. My husband had to spend the day helping his mother fix things around her house. My in-laws live 90 minutes from us and my father-in-law has dementia. I was at work all day and did not want to miss her call. Unfortunately no word yet, therefore I have no details about what the interest is in our son.
Since my husband would not be home on time to pick up Colin after cross country practice, I had the "pleasure" of doing so. The older boys were upstairs, hanging out in their rooms when we arrived home. Colin made a sandwich and took a plate of food into the basement to watch t.v. and unwind. While he was chilling out, I heard his phone ring. I wasn't able to find it in time and checked to see who called. It was the same long-distance number of a telemarketer who called my phone earlier in the day.
As I was scrolling through his calls, I was immediately alarmed. His contacts consisted of swear words for each of us. My number was under "Mother F*cker" and his brothers and father also had swear words for their listings. Our house phone was under "Hell". To top it all off, the banner that flashed across his screen stated " I hate my b*tch Dad". Using profanity is against house rules.
I flipped out. He uses this phone to call us for rides, only to be abusive the whole ride home. I know this is the misophonia talking but I had enough. I marched down the basement stairs, ignoring demands of staying away and confronted my son. I screamed at the top of my lungs so that I would be heard through the headphones and threats my son was issuing. This is the only way to get his attention. I hate that it has come to this.
I stood my ground and refused to leave. I followed my son throughout the house. I had a message to get through to him. I will not be disrespected.The advice of "Please do not punish him for the reaction to miso. Normal naughty behavior yes punish." stuck in my head. It is hard to know anymore where the miso ends and the bad behavior begins. I filed this under "Bad Behavior".
Hubs was not as upset as I was but agreed this was unacceptable. He attributed the poor phone choice to being angry and bored. We've taken away all the other electronics and this is what he is left with other than his school books when he is in the "B & B". Dad reprogrammed the phone as Colin was fast asleep by the time he came home at 7:00 p.m.
A New Resting Place?
Friday night was the first night, Colin slept in the basement. When hubs went to check on him, our son was kneeling on the area rug with his head on the sofa. At least he looked comfortable. He slept the whole night down there only to be rudely awakened in the morning by the flush of the toilet. I forgot that the sounds of water rushing through the pipes are much louder in the basement. And thus another triggered start to the day.Saturday was a whirl of activity. Colin and his oldest brother had cross country meets and my middle son had a quiz team tournament.
Mid-day I had one of my former employees bring her two boys over to pick up an old boy's bike, a tag-along attachment for an adult bicycle, and a few other hand-me-down books and toys. She was forewarned about Colin who stayed in the basement and refused to come up to visit. My eldest son was home and helped watch the boys on our play set until he had to leave for his lifeguard job. This was the highlight of my day.
Other than taking a shower and coming up for food and bathroom breaks Colin spent the bulk of the day in the basement. Once again he had fallen asleep early, this time on the rug between the coffee table and the television. It was pitch black down there and we needed a flashlight to see where he was. Our miso-son looked comfortable so we him alone.
I fell asleep watching Saturday Night Live with my 15 year old middle-son and woke up at the end of the show. Unable to sleep, I decided to write this post. It is now 3:30 a.m. Sunday morning and I am finally ready to get some shut-eye. At this point Colin is still in the basement.
Good night or should I say Good Morning?
We are a work-in-progress.
Friday, October 4, 2013
Still Standing and Hanging In
Yesterday afternoon I came home to find my husband on the phone with our pediatrician. The doctor was returning a call hubs put in about antibiotics. Colin recently had a blood test to see if he had any signs of the strep virus that causes Pandas. While the test results came back negative, we were wondering if there were any other bacteria that could be causing my son's condition and if antibiotics would help.
Our doctor replied no, however, he had some news. He reported back that there is interest in our case. There is a researcher (psychiatrist?) at Children's Hospital that wants to see our son. Her assistant should be contacting us to set up an appointment.
I wish I had a chance to speak with our doctor, so I could get the information first-hand. Things get lost in translation. It does appear that our pediatrician has been talking to Psychiatric department heads at both Ohio State and Children's Hospital. We know that there are other cases of Misophonia in our area but not sure the extent. From what I can tell from my support groups, Colin is a pretty severe case and a bit unusual. I've been pleasantly surprised at how supportive our pediatrician has been.
This was the one bright spot in our day.
The morning did not go so well. Colin was more triggered than usual for the 1 mile ride and kicked Dad's car door before heading into school. There was no cross country practice after school so he was picked up at 3:30. Hubs got to enjoy raging all the way home that continued for some time. When I called from work to get the evening plan, I could hear yelling in the background.
Our 15 year old had a wake to go to for the friend who had died suddenly last weekend and piano lessons afterwards. Colin decided to skip swimming due to an ear ache (wax or water ?). I used my middle-son as a middle-man to communicate for me. I needed to know if I could get Colin to a doctor or nurse to have his ear looked at. I was told no, it was probably wax.
Shortly after my husband and 15 year old left the house, the lawn crew came to our next door neighbor. This is the source of our worst rages. No room in our house can shield our son from the sound. We quickly escaped the area in my mini van. Colin wanted to go to the movies but I went to Dairy Queen instead. He refused to leave the car and did not want anything. I bought a Blizzard on the off-chance he would eat it and some ice cream for myself.
I endured death threats and curses all the way home. My husband would be horrified that I responded with questions such as how & where?(it's going to be a surprise!) and threatened to take my miso-son with me when told to "die in a hole". I don't think Colin really hears me during his rages.
Colin spent the rest of the evening watching t.v. in the dark basement. He likes to chill out alone and with the lights out. Eventually he came upstairs to his "B&B". We need to figure a way to install a hidden camera in that bathroom. I'd love to know what goes on.
The last few nights when I opened the door a crack to turn off the lights, he was not lying on the floor. It would appear he was standing up, leaning against the counter. I have no idea if he is trying to sleep standing up or if he is getting any sleep at all. Tonight (3 a.m.) , shortly after I turned out the lights, they came back on. I so want to go in and see what is happening but that is a huge risk for the rest of the family. I would almost certainly trigger a screaming rage and the other boys need their sleep. I am baffled as to how Colin can seem to function as well as he does at school.
At this point we are barely holding it together. We have a son who can not talk to us or even be in the same room. He will not eat food we have either prepared or touched (take out). He eats huddled at a corner of the kitchen counter. From the moment he enters the house, he strips to his underwear, puts on his headphones and wraps himself in his blanket. This is our new-normal.
Help can not come fast enough.
We are a work-in-progress!!!!!!
Our doctor replied no, however, he had some news. He reported back that there is interest in our case. There is a researcher (psychiatrist?) at Children's Hospital that wants to see our son. Her assistant should be contacting us to set up an appointment.
I wish I had a chance to speak with our doctor, so I could get the information first-hand. Things get lost in translation. It does appear that our pediatrician has been talking to Psychiatric department heads at both Ohio State and Children's Hospital. We know that there are other cases of Misophonia in our area but not sure the extent. From what I can tell from my support groups, Colin is a pretty severe case and a bit unusual. I've been pleasantly surprised at how supportive our pediatrician has been.
This was the one bright spot in our day.
Cloudy with a Chance of Rages
The morning did not go so well. Colin was more triggered than usual for the 1 mile ride and kicked Dad's car door before heading into school. There was no cross country practice after school so he was picked up at 3:30. Hubs got to enjoy raging all the way home that continued for some time. When I called from work to get the evening plan, I could hear yelling in the background.
Our 15 year old had a wake to go to for the friend who had died suddenly last weekend and piano lessons afterwards. Colin decided to skip swimming due to an ear ache (wax or water ?). I used my middle-son as a middle-man to communicate for me. I needed to know if I could get Colin to a doctor or nurse to have his ear looked at. I was told no, it was probably wax.
Shortly after my husband and 15 year old left the house, the lawn crew came to our next door neighbor. This is the source of our worst rages. No room in our house can shield our son from the sound. We quickly escaped the area in my mini van. Colin wanted to go to the movies but I went to Dairy Queen instead. He refused to leave the car and did not want anything. I bought a Blizzard on the off-chance he would eat it and some ice cream for myself.
I endured death threats and curses all the way home. My husband would be horrified that I responded with questions such as how & where?(it's going to be a surprise!) and threatened to take my miso-son with me when told to "die in a hole". I don't think Colin really hears me during his rages.
Colin spent the rest of the evening watching t.v. in the dark basement. He likes to chill out alone and with the lights out. Eventually he came upstairs to his "B&B". We need to figure a way to install a hidden camera in that bathroom. I'd love to know what goes on.
The last few nights when I opened the door a crack to turn off the lights, he was not lying on the floor. It would appear he was standing up, leaning against the counter. I have no idea if he is trying to sleep standing up or if he is getting any sleep at all. Tonight (3 a.m.) , shortly after I turned out the lights, they came back on. I so want to go in and see what is happening but that is a huge risk for the rest of the family. I would almost certainly trigger a screaming rage and the other boys need their sleep. I am baffled as to how Colin can seem to function as well as he does at school.
At this point we are barely holding it together. We have a son who can not talk to us or even be in the same room. He will not eat food we have either prepared or touched (take out). He eats huddled at a corner of the kitchen counter. From the moment he enters the house, he strips to his underwear, puts on his headphones and wraps himself in his blanket. This is our new-normal.
Help can not come fast enough.
We are a work-in-progress!!!!!!
Thursday, October 3, 2013
Misophonia Potpourri
Yesterday was a mixed bag of Miso. In the morning my son was only slightly triggered. Colin will usually retreat to a corner of the kitchen when his brothers wake up. He will turn off the refrigerator and eat his breakfast. These days he usually eats at the kitchen counter.
I walked in to find my son with his back to me eating string cheese and drinking a Boost nutritional shake, while packing his lunch. He will not allow us to prepare food for him these days. In a relatively calm voice my son pleaded with me, "Mom, would you PLEASE leave?"
I promptly turned heel and left the kitchen. I decided to take this as a small victory and posted this to my parent's group. A few short months ago, I never would have dreamed that the word "Please" and the absence of threats and swearing would be a good morning. A few short months ago a day never went by without my son telling me he loved me. Several times. Those days are now a thing of the past.
I checked in with my husband mid-morning to see how the ride to school went. Colin had entered the Miata before it was started (he usually waits) and removed his headphones for the ride. He held out until they were approaching the school to unleash his string of "I hate you"s and other unpleasantries. Again we filed that under #progress.
The night before (Tuesday Night), Colin had a cross country meet where he shaved a second off his time for a personal best. We also allowed him to rest/sleep for several hours in my mini van that was parked in our driveway. I'm sure the exercise and rest helped.
Yesterday afternoon, we had the new garage door installed. Hubs cleaned out and organized the garage so that we could park one car inside. The thought would be that Colin would be safer, especially during the winter months, hanging out in a car that is sheltered inside a warm garage.
Last night, after swim practice, Colin wanted to rest in my mini-van before coming in the house. Dad decided to test out the new door and pulled the van into the garage. Within seconds, our son was howling. The car was backed out and parked into the driveway. Perhaps claustrophobia set in? Maybe the smell of WD-40 the installers used?
Another perfectly good idea was shot to hell. At least we needed the new garage door. Back to the drawing board.......
We are a work-in-progress!
I walked in to find my son with his back to me eating string cheese and drinking a Boost nutritional shake, while packing his lunch. He will not allow us to prepare food for him these days. In a relatively calm voice my son pleaded with me, "Mom, would you PLEASE leave?"
I promptly turned heel and left the kitchen. I decided to take this as a small victory and posted this to my parent's group. A few short months ago, I never would have dreamed that the word "Please" and the absence of threats and swearing would be a good morning. A few short months ago a day never went by without my son telling me he loved me. Several times. Those days are now a thing of the past.
I checked in with my husband mid-morning to see how the ride to school went. Colin had entered the Miata before it was started (he usually waits) and removed his headphones for the ride. He held out until they were approaching the school to unleash his string of "I hate you"s and other unpleasantries. Again we filed that under #progress.
The night before (Tuesday Night), Colin had a cross country meet where he shaved a second off his time for a personal best. We also allowed him to rest/sleep for several hours in my mini van that was parked in our driveway. I'm sure the exercise and rest helped.
Another Dashed Hope
Yesterday afternoon, we had the new garage door installed. Hubs cleaned out and organized the garage so that we could park one car inside. The thought would be that Colin would be safer, especially during the winter months, hanging out in a car that is sheltered inside a warm garage.
Last night, after swim practice, Colin wanted to rest in my mini-van before coming in the house. Dad decided to test out the new door and pulled the van into the garage. Within seconds, our son was howling. The car was backed out and parked into the driveway. Perhaps claustrophobia set in? Maybe the smell of WD-40 the installers used?
Another perfectly good idea was shot to hell. At least we needed the new garage door. Back to the drawing board.......
We are a work-in-progress!
Tuesday, October 1, 2013
Perspective
I just got back from my evening walk. Nothing like a warm, breezy, Fall evening to gather your thoughts and put life into proper perspective. The last few days have given me plenty to think about. Colin has pretty much crossed over to the dark side of Misophonia where my husband and I are concerned.The hate for us is constant now.
Our miso-son still has frequent trigger-induced rages but they are mostly leveling out. He seems to be able to watch t.v. in the basement during prime-time for our neighbors to mow their lawns and is not as triggered as he first was.
The most troubling part of the Misophonia is that at times my child seems a bit feral when he scurries into the kitchen to gather snacks and take them back to his lair. Colin also has become a bit lawless. Saturday night he pulled an all-nighter, watching t.v. in the basement. I tried to get him to turn off the tv and come upstairs to his sleeping area but he refused. My husband came down and asked me to let our son alone so everyone else could sleep. I reluctantly complied.
Sunday evening my middle-son burst into our room to tell us he had just received bad news. A girl he was friends with in elementary school had suddenly died after a short illness. That was very sad to hear and shifted my view of our situation. I have been mourning the loss of our child as we knew him. This loss is most-likely temporary and I am determined to get that sweet boy back. Sadly there is a set of parents who have suffered a real loss. One that is permanent. I can't imagine the pain they are going through. Things could be so much worse for us.
Monday night, Colin continued his bad behavior. He refuses to eat food that his Dad prepares for him. Lately when Colin fetches his food, he has been leaving a mess. He has been ripping the labels off his Boost bottles, shredding them and leaving them in a pile. I have been feeling like we have been too accommodating
and our son has been mistaking our kindness for weakness. I decided to open up a can of worms and pose the question to one of my FaceBook groups:
While I had been hoping to get the viewpoint of a Miso-sufferer, I seemed to get more parental advice. Much of which confirmed what I had been told about not even most people with Misophonia understand the few of us with extreme cases.
One comment in particular stood out and was what I was looking for:
For me, speaking as a person who suffers and remembering back to when I was a child. I think talk of punishment and seeing psychologists, and having wires hooked up to the kids head is terrifying for him.
Please do not punish him for the reaction to miso. Normal naughty behavior yes punish. The anger and frustration he feels with miso can't be helped.
If I was in your position I would see the psychologist on your own with out him. Don't for now involve him. I think what you have on your hands is a scared child, who doesn't quite understand what is wrong with him, add hormones and you have a big melting pot of trouble.
Find out how to get him on board then start seeing about treating him.
Another comment that made sense:
It's not the machine or the person it's the sound. Btw I was 12 when my dad died. He may well blame you if that's the case. If you're that mad you have to take it out on something until you learn how to deal with it differently.
Lately it has been hard to separate the bad behavior from the Miso, but last night a spanking was in order. Colin was given a few warnings to clean up his mess or he would face the consequences. When he refused to pick up his mess, Dad gave him a spanking. I wasn't sure if this really made any difference. Our son still was defiant and hubs cleaned up the mess.
Turns out that today when Colin tore the label off his drink, it was not shredded and was thrown away. Score one for discipline.
My husband emailed two trusted teachers that are somewhat aware of our situation to see how things are going at school. One of the teachers is a much beloved Science teacher who has taught all of my boys and the other is a History teacher and track coach. Both were shocked to hear Colin is struggling at home. Our son actively participates in class discussions, seems happy and gets along with others. He is showing no signs of duress.
We were equally shocked and relieved to hear this.
We have an appointment set up with a neurologist two weeks from now. We also have our new garage door scheduled to be installed tomorrow. I am looking forward to being able to park my van in the garage and turning it into an evening retreat for Colin when he needs to escape the sounds of the household.
I've also been getting a lot of support and advice from group members. I've been warned about the horrible side effects of SSRI drugs and advised to try going the Probiotic route. One mom offered to introduce her 11 year old son to Colin via FaceBook (too early for this but I will definitely keep them in mind when we are on more stable ground).
I don't know what I would do without my support groups. I feel so blessed.
We are a work-in-progress!
Our miso-son still has frequent trigger-induced rages but they are mostly leveling out. He seems to be able to watch t.v. in the basement during prime-time for our neighbors to mow their lawns and is not as triggered as he first was.
The most troubling part of the Misophonia is that at times my child seems a bit feral when he scurries into the kitchen to gather snacks and take them back to his lair. Colin also has become a bit lawless. Saturday night he pulled an all-nighter, watching t.v. in the basement. I tried to get him to turn off the tv and come upstairs to his sleeping area but he refused. My husband came down and asked me to let our son alone so everyone else could sleep. I reluctantly complied.
Tragedy and Loss
Sunday evening my middle-son burst into our room to tell us he had just received bad news. A girl he was friends with in elementary school had suddenly died after a short illness. That was very sad to hear and shifted my view of our situation. I have been mourning the loss of our child as we knew him. This loss is most-likely temporary and I am determined to get that sweet boy back. Sadly there is a set of parents who have suffered a real loss. One that is permanent. I can't imagine the pain they are going through. Things could be so much worse for us.
Where to Draw the Line
Monday night, Colin continued his bad behavior. He refuses to eat food that his Dad prepares for him. Lately when Colin fetches his food, he has been leaving a mess. He has been ripping the labels off his Boost bottles, shredding them and leaving them in a pile. I have been feeling like we have been too accommodating
and our son has been mistaking our kindness for weakness. I decided to open up a can of worms and pose the question to one of my FaceBook groups:
While I had been hoping to get the viewpoint of a Miso-sufferer, I seemed to get more parental advice. Much of which confirmed what I had been told about not even most people with Misophonia understand the few of us with extreme cases.
One comment in particular stood out and was what I was looking for:
For me, speaking as a person who suffers and remembering back to when I was a child. I think talk of punishment and seeing psychologists, and having wires hooked up to the kids head is terrifying for him.
Please do not punish him for the reaction to miso. Normal naughty behavior yes punish. The anger and frustration he feels with miso can't be helped.
If I was in your position I would see the psychologist on your own with out him. Don't for now involve him. I think what you have on your hands is a scared child, who doesn't quite understand what is wrong with him, add hormones and you have a big melting pot of trouble.
Find out how to get him on board then start seeing about treating him.
Another comment that made sense:
It's not the machine or the person it's the sound. Btw I was 12 when my dad died. He may well blame you if that's the case. If you're that mad you have to take it out on something until you learn how to deal with it differently.
Lately it has been hard to separate the bad behavior from the Miso, but last night a spanking was in order. Colin was given a few warnings to clean up his mess or he would face the consequences. When he refused to pick up his mess, Dad gave him a spanking. I wasn't sure if this really made any difference. Our son still was defiant and hubs cleaned up the mess.
Turns out that today when Colin tore the label off his drink, it was not shredded and was thrown away. Score one for discipline.
Word from the Front Lines
My husband emailed two trusted teachers that are somewhat aware of our situation to see how things are going at school. One of the teachers is a much beloved Science teacher who has taught all of my boys and the other is a History teacher and track coach. Both were shocked to hear Colin is struggling at home. Our son actively participates in class discussions, seems happy and gets along with others. He is showing no signs of duress.
We were equally shocked and relieved to hear this.
Other Developments
We have an appointment set up with a neurologist two weeks from now. We also have our new garage door scheduled to be installed tomorrow. I am looking forward to being able to park my van in the garage and turning it into an evening retreat for Colin when he needs to escape the sounds of the household.
I've also been getting a lot of support and advice from group members. I've been warned about the horrible side effects of SSRI drugs and advised to try going the Probiotic route. One mom offered to introduce her 11 year old son to Colin via FaceBook (too early for this but I will definitely keep them in mind when we are on more stable ground).
I don't know what I would do without my support groups. I feel so blessed.
We are a work-in-progress!
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