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 24, 2013
Tuesday, October 22, 2013
Time's Up!
Today we had a meeting with the Social Worker and the Psychiatrist who are ready to move my son along. Not much visible progress has been made. Colin is polite and behaves but is still not opening up. He did write a welcome letter to his new roommate this weekend. He wanted to let the new patient know that he would not be sleeping in the room at night. Colin explained that he had problems with certain sounds and was more comfortable in a conference room at night and that it was nothing personal.We were impressed with our son's thoughfulness.
Colin is displaying what is referred to as "Magical Thinking". His preference is to go back home, avoid Mom & Dad, and live in the basement. He would go back to his school, get his own meals and find ways to avoid certain noises. In essence, he wants to pick up where he left off. A place that no longer exists. We will not allow our house to be run by a 12 year old boy with "Select Sound Sensitivities".
The psych hospital is a short-term facility and they need to move my son out. It is clear he can not live at home in his current state. I'm not sure if he will be able to go home with my sister, after Sunday's episode. I asked that my son be apprised of our meeting and see if they could get him to come.
Upon hearing that his parents were in a conference room, our son immediately became agitated. He marched over to the room, opened the door and exploded. He wanted us to get out and punched and kicked my husband before leaving to be escorted back to his room. The psychiatrist sat with him to have a chat. The more she probed and questioned, the more enraged he became. He ended up going into a full-on rage, that involved stripping off his clothes and yelling, "Get them out!" over and over, even when we were long-gone.
The nurses ended up injecting him with Haldol, Benedryl and another drug to calm him. Colin then quieted down, had dinner and went to sleep in his usual room, sleeping sitting up and resting his head on a cushioned chair. To this day, no one knows why he can't lay down.
I spoke at length with the psychiatrist to see if they were able to get our son to start his meds while sedated but he still refused. Despite his rage, they still want to release our son tomorrow. I spoke with our Cognitive Behavioral Psychologist and he will help advise and assemble a team to work with our son. Everyone is in agreement that Colin's best shot for now is at my sister's house. He will need to transfer to a new middle school that is near his new home. We have a lot to try to accomplish in a very short period of time.
I am praying that this transition works and that we can start some type of therapy soon. I am also hopeful that our son is able to settle into a new routine. My sister and her family will try not to pry into Colin's triggers and will not push taking meds for now. He just needs a comfortable, stable environment with parents who don't trigger him.
It is time for us to step aside and give our son a break. We hope in time, we can reconcile.
We are a work-in-progress.
Colin is displaying what is referred to as "Magical Thinking". His preference is to go back home, avoid Mom & Dad, and live in the basement. He would go back to his school, get his own meals and find ways to avoid certain noises. In essence, he wants to pick up where he left off. A place that no longer exists. We will not allow our house to be run by a 12 year old boy with "Select Sound Sensitivities".
The psych hospital is a short-term facility and they need to move my son out. It is clear he can not live at home in his current state. I'm not sure if he will be able to go home with my sister, after Sunday's episode. I asked that my son be apprised of our meeting and see if they could get him to come.
Upon hearing that his parents were in a conference room, our son immediately became agitated. He marched over to the room, opened the door and exploded. He wanted us to get out and punched and kicked my husband before leaving to be escorted back to his room. The psychiatrist sat with him to have a chat. The more she probed and questioned, the more enraged he became. He ended up going into a full-on rage, that involved stripping off his clothes and yelling, "Get them out!" over and over, even when we were long-gone.
The nurses ended up injecting him with Haldol, Benedryl and another drug to calm him. Colin then quieted down, had dinner and went to sleep in his usual room, sleeping sitting up and resting his head on a cushioned chair. To this day, no one knows why he can't lay down.
I spoke at length with the psychiatrist to see if they were able to get our son to start his meds while sedated but he still refused. Despite his rage, they still want to release our son tomorrow. I spoke with our Cognitive Behavioral Psychologist and he will help advise and assemble a team to work with our son. Everyone is in agreement that Colin's best shot for now is at my sister's house. He will need to transfer to a new middle school that is near his new home. We have a lot to try to accomplish in a very short period of time.
I am praying that this transition works and that we can start some type of therapy soon. I am also hopeful that our son is able to settle into a new routine. My sister and her family will try not to pry into Colin's triggers and will not push taking meds for now. He just needs a comfortable, stable environment with parents who don't trigger him.
It is time for us to step aside and give our son a break. We hope in time, we can reconcile.
We are a work-in-progress.
Monday, October 21, 2013
Choices
This weekend we were told to continue to visit and to make sure we were "in our son's face". The social worker told us that if we stayed away, our son would think that we did not care about him. She also wanted us to push buttons. If my son would react or rage, they would be able to correct the behavior.
My husband & I took turns. Friday he went for a visit. Not much happened, other than my son avoiding him, telling Dad that he hates him and to get away. I went on Saturday for family dinner night. My husband had to take the other boys to a swim meet, so I went alone.
My strategy was to keep my son out of his room and into the general population. I spent the majority of my time in his pod, watching the game. I did manage to agitate him due to the fact he could not escape into his room. Colin only ran into his room twice. Once to get his headphones, which I was surprised at since he hasn't used them in view of the other kids. The other time he came back was to grab some good behavior coupons to redeem for ice cream and jello. Both times he told me he hated me and for me to leave as he scurried by.
I looked out into the main room and saw a little boy trying on Colin's headphones. Colin slipped into the seclusion room to eat his treats. As I stood outside the door and looked into the window, he would occasionally come to the window with an angry face and mouth the words of hate and to go away. The little boy came up with the headphones. I asked if those were Colin's and he gave them to me and said he was holding them for my son. I gave them to the front desk receptionist to hold. She ended up locking them up.
Sunday I came back with my sister. I wanted to see how he would react to his aunt. I gave her permission to "take off the handcuffs" I had previously put on her to not ask about his issues. I told her she had free-range over the conversation. I tried with no luck to get hold of the weekend psychiatrist to get some guidance. Unfortunately she did not call back and was not available when we arrived. We were on our own.
I typed a letter before coming and gave 2 copies to the desk. It was to be reviewed by a psychiatrist and hopefully read to Colin if it was o.k. I have no idea what to say anymore. I decided to speak from the heart.
Meantime, my sister was able to sit down with Colin. I had the front desk be my eyes. He smiled when he saw her and they walked over to a hallway and sat down. I peer around the corner to see my sister talking animatedly and with hand gestures. My son caught my glance and shut the double doors so I couldn't see them.
Apparently the more she pressed about why he was there and his triggers, the more he pulled away. He told her he was fine. She disagreed and started to ask about individual triggers, like his reactions to lawn mowers. That was enough for Colin and he got up and went back to his room. I had her follow him and I went 20 paces behind them. After being trapped in his room and unable to close his door, (his roommate kept opening it), Colin went into a rage and kept screaming "Get them away!" "Make them go away!" "Get them outta here!!!!"
The nurse had us leave and she went to attend to him. Our work was done, we got a reaction.
It took a while before we could meet with the psychiatrist on call. She apologized and told me she had to check Colin's file. She could not believe we were told to agitate him without being in a controlled setting with a social worker and team. But sure enough the social worker had noted that we were to "push buttons".
It took Colin 45 minutes to calm down after we left. He was fine the rest of the night, other than no one knew where his headphones were. I told them they must still be locked up.
Monday morning at 6:00 a.m., I had a nice chat with a night nurse with whom my son has rapport. She is very worried about him. He still won't take meds and seems to be out of touch with reality. He mentioned a few times that I hate him and want to kill him. He also has unrealistic expectations as to where and how he is going to live.
He wants to go home and back to his school but wants nothing to do with his parents. When told living in the basement, avoiding your parents and getting your own meals are not an option, he said he would just stay at the hospital. He was told that is not possible and he will have to leave soon. He then mentioned living on the streets and was told that he was not equipped to do that. He then mentioned that he could live with his aunt. I was relieved that that option might not be off the table but really concerned that after a week, no real progress has been made.
It wasn't until the end of the day until my husband finally was able to get in touch with the Social Worker. He ran into her as he went in to the floor to check on my son. She told him we are next on their list and could meet tomorrow (Tuesday morning) with the managing psychiatrist. I can not meet until the afternoon, so we will see whether this can happen or if my husband will need to go alone.
I am so very frustrated on the lack of clear communications and the lack of progress.
We are a work-in-progress.
My husband & I took turns. Friday he went for a visit. Not much happened, other than my son avoiding him, telling Dad that he hates him and to get away. I went on Saturday for family dinner night. My husband had to take the other boys to a swim meet, so I went alone.
My strategy was to keep my son out of his room and into the general population. I spent the majority of my time in his pod, watching the game. I did manage to agitate him due to the fact he could not escape into his room. Colin only ran into his room twice. Once to get his headphones, which I was surprised at since he hasn't used them in view of the other kids. The other time he came back was to grab some good behavior coupons to redeem for ice cream and jello. Both times he told me he hated me and for me to leave as he scurried by.
I looked out into the main room and saw a little boy trying on Colin's headphones. Colin slipped into the seclusion room to eat his treats. As I stood outside the door and looked into the window, he would occasionally come to the window with an angry face and mouth the words of hate and to go away. The little boy came up with the headphones. I asked if those were Colin's and he gave them to me and said he was holding them for my son. I gave them to the front desk receptionist to hold. She ended up locking them up.
Sunday I came back with my sister. I wanted to see how he would react to his aunt. I gave her permission to "take off the handcuffs" I had previously put on her to not ask about his issues. I told her she had free-range over the conversation. I tried with no luck to get hold of the weekend psychiatrist to get some guidance. Unfortunately she did not call back and was not available when we arrived. We were on our own.
I typed a letter before coming and gave 2 copies to the desk. It was to be reviewed by a psychiatrist and hopefully read to Colin if it was o.k. I have no idea what to say anymore. I decided to speak from the heart.
Dear Colin,
I love you and miss how things used to
be. I hate to see what has happened to the bright, loving son who was
a joy to be with. We used to be so close.
I feel a whole range of emotions right
now. I am scared, angry, tired, sad and my heart hurts. I have lost
weight and am not sleeping well. I have a hard time not thinking
about you every minute of every day. I hate what we all have become.
We all have choices and need to take
responsibility for them. You did not choose to have a neurological
issue where certain sounds can “trigger” anguish and rage.
However, you have the power to choose how you deal with this
disorder. Right now you are letting it take over and win.
Your father and I have decisions that
we make as parents. We don't always know the right choices but please
know we come from a place of love. We did not choose to have you
hospitalized. YOU made that choice by your behavior.
You are not the only one that is
angry. I resent the fact that we have tried so very hard to help
you and you won't let us. We tried to make things easier for you at
home and you screamed and yelled and shut us out. The more we tried,
the more hateful and disrespectful you became. The whole family had
to walk on eggshells to not trigger you. All of our lives have been
disrupted by your select sound sensitivities.
This is so UNFAIR.
I am extremely frustrated by the fact
that we think you can be helped but you refuse to accept help. You
need to retrain your brain on how these sounds are being processed.
This is not easy but I know you are a smart boy and can do this if
you want to. There are so many people who want to help you but you
keep shutting them down.
Why would anyone choose to live like
this?
We all have choices to make. We can not
go back to the way things were when you left. You need to live in our
world. If you can not be in the same room as your parents and be able
to politely and respectfully speak with them, how do you expect to
live at home?
We can no longer tolerate being ordered
about and cursed at. We can not live with someone who wishes to see
us dead and hates us. Why should we?
You have some big choices to make. Do
you want to continue to live the way you are? Do you want to get
better? Do you want to let a stupid, unfortunate neurological
disorder take over your life and take you down? Only you have the
power to defeat this. Together we can overcome.
The
choice is yours!
Love,
Mom
(editor's note: This letter was never read as it was a bit too much. At least the psychiatrist and social worker know how I feel.)
(editor's note: This letter was never read as it was a bit too much. At least the psychiatrist and social worker know how I feel.)
Meantime, my sister was able to sit down with Colin. I had the front desk be my eyes. He smiled when he saw her and they walked over to a hallway and sat down. I peer around the corner to see my sister talking animatedly and with hand gestures. My son caught my glance and shut the double doors so I couldn't see them.
Apparently the more she pressed about why he was there and his triggers, the more he pulled away. He told her he was fine. She disagreed and started to ask about individual triggers, like his reactions to lawn mowers. That was enough for Colin and he got up and went back to his room. I had her follow him and I went 20 paces behind them. After being trapped in his room and unable to close his door, (his roommate kept opening it), Colin went into a rage and kept screaming "Get them away!" "Make them go away!" "Get them outta here!!!!"
The nurse had us leave and she went to attend to him. Our work was done, we got a reaction.
It took a while before we could meet with the psychiatrist on call. She apologized and told me she had to check Colin's file. She could not believe we were told to agitate him without being in a controlled setting with a social worker and team. But sure enough the social worker had noted that we were to "push buttons".
It took Colin 45 minutes to calm down after we left. He was fine the rest of the night, other than no one knew where his headphones were. I told them they must still be locked up.
Monday morning at 6:00 a.m., I had a nice chat with a night nurse with whom my son has rapport. She is very worried about him. He still won't take meds and seems to be out of touch with reality. He mentioned a few times that I hate him and want to kill him. He also has unrealistic expectations as to where and how he is going to live.
He wants to go home and back to his school but wants nothing to do with his parents. When told living in the basement, avoiding your parents and getting your own meals are not an option, he said he would just stay at the hospital. He was told that is not possible and he will have to leave soon. He then mentioned living on the streets and was told that he was not equipped to do that. He then mentioned that he could live with his aunt. I was relieved that that option might not be off the table but really concerned that after a week, no real progress has been made.
It wasn't until the end of the day until my husband finally was able to get in touch with the Social Worker. He ran into her as he went in to the floor to check on my son. She told him we are next on their list and could meet tomorrow (Tuesday morning) with the managing psychiatrist. I can not meet until the afternoon, so we will see whether this can happen or if my husband will need to go alone.
I am so very frustrated on the lack of clear communications and the lack of progress.
We are a work-in-progress.
Friday, October 18, 2013
10 Minute Visit
Thursday:
Colin is going on day 4 tomorrow at the psych hospital with minimal progress. He is very stubborn and has only opened up a little bit. His version of why he is there: Sounds are merely an annoyance and he is in there because he screams at his parents to get back at them. Our crime is not leaving him alone and taking him to doctors against his will. He raged and refused to get dressed for the trip to the Neurologist and Psychiatrist merely to embarrass us.
Our son is very angry and hates us right now. Thursday, we were supposed to have a meeting with the social worker and my son. Instead he stayed in his room. He was supposed to write out a plan. Instead it was a Hate List. He basically said he hates us, will never love us again and doesn't trust us. He doesn't care if he costs us lots of money and will stay there for a year. (not possible, this is a short-term facility).
As we don't have Mental Health insurance, there is concern by the social worker and psychiatrist in getting our son out soon. Together we decided that my husband & I need to be able to spend time in the same room as my son. Later that day we were to come back for 10 minutes of togetherness. We didn't have to talk, but he needed to be in the same room. I even wrote a note.
My husband & I thought there would be a nurse facilitating but instead we were left on our own. We found our son holed-up in his bathroom trying to keep us out. He left his room and we followed. I turned into a game of follow the leader. The only intervention was the nurse finally blocking a doorway so he was stuck between his room and the hallway. No interaction other than ripping up my note and trying to push us out of his room. The nurse was a bit sympathetic and I told her that this does not count as 10 minutes. My husband left a message for the social worker to let her know we are disappointed on how things went.
At over $3,000 a day, they can not get my son to take meds, he is polite with the nurses and staff but keeps mainly to himself. His roommate needs music to sleep so my son has been sleeping in different conference rooms (sitting up with his head on a chair) and last night the isolation room. If he is sent home right now, not much will change. The Behavioral Psych, who we originally went to see, knows our social worker and our hospital Psychiatrist and has indicated to them he would be willing to work with our son.
Right now I feel angry towards my son and don't want him back in our home if he will continue to be disrespectful and unable to politely communicate with us. (I'm o.k. if he doesn't like us for now). We will no longer continue to enable his bad behavior. I have approached my sister about taking my son in (she would) but she lives 40 minutes from us.
The sad part is that before this summer when we discovered his miso, he was a great child and gave us no problems.
_____________________________________
Friday Morning:
This morning I called my son's nurse on duty. Apparently after we left last night, the nurse we thought was being passive went into Colin's room and told him he was being a brat. He was surprised at being scolded.
Our son is still refusing medication and the staff is still encouraging and challenging his views and actions. It is a slow process.
I was planning to stay away until my son was more conciliatory but was convinced otherwise by a call from the social worker this afternoon. She wants us to keep visiting and to make sure we are in our son's face. He needs to know he is not in control anymore. The social worker also asked for my sister's contact information in case we need her to take Colin in.
On a more positive note: My husband spent some time on the phone with the insurance company. Some of the bills may be coded with P.D.D which is Autism. If Colin is on the spectrum, the insurance company has to cover up to $35,700. That would certainly ease the burden.
Stay tuned.......
We are a work-in-progress!
Wednesday, October 16, 2013
There Goes The College Fund
Monday Night we got the call that a bed had opened up at the Psychiatric Hospital. A series of calls from nurses and social workers followed. Somewhere in between the flurry, my husband called the insurance company to report the hospitalization. It is a requirement that any hospital stay must be reported by the end of the 3rd day or there would be penalties.
Shock One: We do not have coverage for Mental Health Issues (any disorder listed in the Psychiatric Diagnostic & Statistical Manual of Mental Disorders) After we meet our $2500 deductible, the max payout is $3000.
Shock Two: After a 3 day stay in a hospital room, our first impression of the Psych hospital was shocking. Housed on a college campus, the unit is in an older building. The sleeping rooms have concrete walls with mattresses on the floor and looked dirty and in disarray.
I immediately noticed the blowing noise from the air ducts and panicked. This place was full of things that could trigger my son with no escape. What the hell were we doing to him?
Shock Three: Our only meeting with our new Psychiatrist was Friday when our son was sent directly to the hospital, no evaluation needed. There was much chaos during our discussions that were frequently interrupted by EMT's, nurses, and staff trying to arrange transport for our son who we could hear screaming in the background. While we thought the psychiatrist outlined what was to happen over the next few days, we had the distinct impression that she would be managing our son's treatment while he was hospitalized.
You can imagine our horror when finding out that none of the staff that night knew our new doc and we were given a different name of who would be our son's psychiatrist while in the Psych Hospital.
What followed next was a nightmare of trying to clear up our confusion and having to fill out a mountain of paperwork. We decided to keep our son for the night as midnight was approaching but made sure we had the option to pull him out the next day.
By the time we left it was after 2:00 a.m.
We were so ready to get home, only to find ourselves stuck in the parking garage! I put the parking garage ticket in my purse with my cell phone and it may have demagnetized it. We pushed the call button for help. It took another 20 minutes or so until the supervisor came to let us out.
We stopped for gas, as my car was running on empty and got to bed around 3:00 a.m.
I was finally able to shed some tears as I tried to settle in for a few hours of sleep. I'd been warned that this process would be unbearable and tried to prepare. It was so heartbreaking to only be able to see my son from a distance so as to not agitate him. He looked so cute in his scrubs. I wanted to hug him but knew I could not.
_________________________________________________
After only a few hours of sleep, I went to work My husband's job was to sort things out and meet with the social worker. I spoke at length with our Behavioral Psychologist that we currently use for consultation purposes. He calmed my fears and let me know that Colin was at the best possible place for treatment.
Our Psychiatrist (from Friday) called and spoke with my husband to apologize and clear things up. She called me later that afternoon. I was able to explain how things looked from our perspective and how the lack of clear communication effected us. It was apparent that there was much miscommunication. I think we were able to clear the air and I was feeling a bit better.
Last night we took our 15 year old to see his brother. What a difference a day makes. Seeing the place during visiting hours gave us a much different feel. We also had a chance to meet his Psychiatrist who will be managing our son's treatment there. We like her.
Post to Parent Group, Wednesday, Oct. 16
Shock One: We do not have coverage for Mental Health Issues (any disorder listed in the Psychiatric Diagnostic & Statistical Manual of Mental Disorders) After we meet our $2500 deductible, the max payout is $3000.
Shock Two: After a 3 day stay in a hospital room, our first impression of the Psych hospital was shocking. Housed on a college campus, the unit is in an older building. The sleeping rooms have concrete walls with mattresses on the floor and looked dirty and in disarray.
I immediately noticed the blowing noise from the air ducts and panicked. This place was full of things that could trigger my son with no escape. What the hell were we doing to him?
Shock Three: Our only meeting with our new Psychiatrist was Friday when our son was sent directly to the hospital, no evaluation needed. There was much chaos during our discussions that were frequently interrupted by EMT's, nurses, and staff trying to arrange transport for our son who we could hear screaming in the background. While we thought the psychiatrist outlined what was to happen over the next few days, we had the distinct impression that she would be managing our son's treatment while he was hospitalized.
You can imagine our horror when finding out that none of the staff that night knew our new doc and we were given a different name of who would be our son's psychiatrist while in the Psych Hospital.
What followed next was a nightmare of trying to clear up our confusion and having to fill out a mountain of paperwork. We decided to keep our son for the night as midnight was approaching but made sure we had the option to pull him out the next day.
By the time we left it was after 2:00 a.m.
We were so ready to get home, only to find ourselves stuck in the parking garage! I put the parking garage ticket in my purse with my cell phone and it may have demagnetized it. We pushed the call button for help. It took another 20 minutes or so until the supervisor came to let us out.
We stopped for gas, as my car was running on empty and got to bed around 3:00 a.m.
I was finally able to shed some tears as I tried to settle in for a few hours of sleep. I'd been warned that this process would be unbearable and tried to prepare. It was so heartbreaking to only be able to see my son from a distance so as to not agitate him. He looked so cute in his scrubs. I wanted to hug him but knew I could not.
_________________________________________________
Tuesday - Coming to Terms
After only a few hours of sleep, I went to work My husband's job was to sort things out and meet with the social worker. I spoke at length with our Behavioral Psychologist that we currently use for consultation purposes. He calmed my fears and let me know that Colin was at the best possible place for treatment.
Our Psychiatrist (from Friday) called and spoke with my husband to apologize and clear things up. She called me later that afternoon. I was able to explain how things looked from our perspective and how the lack of clear communication effected us. It was apparent that there was much miscommunication. I think we were able to clear the air and I was feeling a bit better.
Last night we took our 15 year old to see his brother. What a difference a day makes. Seeing the place during visiting hours gave us a much different feel. We also had a chance to meet his Psychiatrist who will be managing our son's treatment there. We like her.
Post to Parent Group, Wednesday, Oct. 16
Sunday, October 13, 2013
The "C" Word
Colin is doing better today. Yesterday after he was restrained and drugged, he was able to calm down and drift in and out of sleep. He was so triggered, it took 2 doses of Haldol to sedate him. After pinpointing the trigger to the air system, the staff was able to close the air vents in my son's room.
Later that day, after removing his leg restraints and passing his "interviews" the staff took off his arm restraints and let him move about the room. He was also given his headphones back. Colin is dressed in a purple hospital gown to signify "Flight Risk" as he did admit to a fantasy of walking down the hall to a waiting car that would take him home.
I spoke with the on-call psychiatrist last night after she had a chance to speak with Colin. He was a bit more forthcoming with information as to why he was there but is still in denial that there is anything wrong with him. He admitted to getting mad and yelling at his parents for taking him against his will to doctors over the past few months. He also may have admitted to some sounds bothering him but did not get into detail. I was able to fill in the blanks. The psychiatrist offered to give our son Prozac to help calm his brain. I told her unless he was agitated, I would prefer to wait until he is seen by his psychiatrist or unless she conferred with our new doctor if she felt an SSRI drug was needed.
I spoke with my brother yesterday and asked about his kids. His oldest is living in NYC and trying to break into acting. I was told my nephew keeps safe when out at night by acting crazy. People fear "Crazy"; even thugs! There is such a stigma that is attached to having a mental health issue, even when there is a neurological-based origin. Crazy is unpredictable and we fear what we don't know.
We have banned the "C" word from being used in our household.
I had prepped the nurses that we should limit phone calls home to once a day and that they should make sure he is not calling to get a ride. Once he was untethered, Colin stopped sleeping in the bed and has gone back to either standing or kneeling in the closet and using a shelf to rest his head. I was comforted by the fact he is using a pillow and seems to be getting some sleep but concerned he is not eating much. He seems to gravitate to the closet as this is the quietest place in the room. Colin was not happy to learn that he is not going home yet. I believe this to be the cause of lack of appetite and for the lack of interest in reading or doing anything.
I took my middle-son to visit early this afternoon for an hour. I stayed out of sight in the Family Lounge so as not to trigger Colin. My 15 year old still has a rapport with his brother. I was hoping a short visit might help lift his spirits and get our son to eat. Colin didn't want to watch t.v. but after a brief negotiation the boys played cards and ate some snacks. The visit went well. I was also encouraged that the hospital was able to schedule an MRI tomorrow for Colin.
I'm not sure when a bed will open up at the Psychiatric hospital but I hope it will be soon. I am anxious for treatment to start. It breaks my heart to think of my son languishing in a room, staring off into space and constantly asking about going home. I wish there was something I could do. Unfortunately it is best for me to stay away for now. This flies in the face of my duties as a mother. Parenting is full of hard choices. I need to stay strong.
We are a work-in-progress.
Later that day, after removing his leg restraints and passing his "interviews" the staff took off his arm restraints and let him move about the room. He was also given his headphones back. Colin is dressed in a purple hospital gown to signify "Flight Risk" as he did admit to a fantasy of walking down the hall to a waiting car that would take him home.
I spoke with the on-call psychiatrist last night after she had a chance to speak with Colin. He was a bit more forthcoming with information as to why he was there but is still in denial that there is anything wrong with him. He admitted to getting mad and yelling at his parents for taking him against his will to doctors over the past few months. He also may have admitted to some sounds bothering him but did not get into detail. I was able to fill in the blanks. The psychiatrist offered to give our son Prozac to help calm his brain. I told her unless he was agitated, I would prefer to wait until he is seen by his psychiatrist or unless she conferred with our new doctor if she felt an SSRI drug was needed.
C is for "Crazy"
Colin has mentioned on several occasions that he is "Not crazy" which I believe is the root of his denial. I can't imagine what must be going through his head. So many people can not understand how our son could appear so normal at school and in public that there is a misconception he could control his Misophonia. Control is an illusion. Fear is what keeps things in check. Fear of being called "Crazy".I spoke with my brother yesterday and asked about his kids. His oldest is living in NYC and trying to break into acting. I was told my nephew keeps safe when out at night by acting crazy. People fear "Crazy"; even thugs! There is such a stigma that is attached to having a mental health issue, even when there is a neurological-based origin. Crazy is unpredictable and we fear what we don't know.
We have banned the "C" word from being used in our household.
Preparing for the Extended Stay
I had prepped the nurses that we should limit phone calls home to once a day and that they should make sure he is not calling to get a ride. Once he was untethered, Colin stopped sleeping in the bed and has gone back to either standing or kneeling in the closet and using a shelf to rest his head. I was comforted by the fact he is using a pillow and seems to be getting some sleep but concerned he is not eating much. He seems to gravitate to the closet as this is the quietest place in the room. Colin was not happy to learn that he is not going home yet. I believe this to be the cause of lack of appetite and for the lack of interest in reading or doing anything.
I took my middle-son to visit early this afternoon for an hour. I stayed out of sight in the Family Lounge so as not to trigger Colin. My 15 year old still has a rapport with his brother. I was hoping a short visit might help lift his spirits and get our son to eat. Colin didn't want to watch t.v. but after a brief negotiation the boys played cards and ate some snacks. The visit went well. I was also encouraged that the hospital was able to schedule an MRI tomorrow for Colin.
I'm not sure when a bed will open up at the Psychiatric hospital but I hope it will be soon. I am anxious for treatment to start. It breaks my heart to think of my son languishing in a room, staring off into space and constantly asking about going home. I wish there was something I could do. Unfortunately it is best for me to stay away for now. This flies in the face of my duties as a mother. Parenting is full of hard choices. I need to stay strong.
We are a work-in-progress.
Saturday, October 12, 2013
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