Wednesday, October 30, 2013

Colin Goes To School

Post to Parent Support Group - Tuesday, 10/29/13
Colin Update: So far so good. My sister was able to enroll my son in his new school. Colin was taken for a tour and able to meet the principal. Tomorrow is his first day.

He seems to be sleeping better at his aunt's house and has not shown any signs of triggering. He wears his headphones at night when alone in his new room but not usually in the presence of others.

The weird part is today, when the lawn crew was arriving, my sister warned Colin and asked if he needed to leave the house with her to go on an errand.(Lawn mowers had recently become one of his worst triggers at our house.) He said he'd be o.k. and would go to the basement if necessary. When the hum of the mowers was audible, Colin had gone to the kitchen to get an ice cream sandwich and did not seem at all disturbed.

Could getting rest and eating ice cream in the presence of a trigger help keep it at bay? Did the advance warning help? Perhaps a different setting helped? Clearly this new setting is agreeing with him. I am hopeful.
Melinda: My miso is definitely much worse when I am tired and/or stressed out. Rest and ice cream could potentially be very helpful in reducing sensitivity.  
Me: Ice cream is my kind of medicine!
Teresa: Great news! Happy for you and your family. 
Lisa: All of the above can help. My daughter is much less reactive when in a situation where she is happy......and wearing earplugs and her Bose headphones. But recently in a situation where she was enjoying herself, she was able to tolerate someone who was coughing....normally her biggest trigger where she would want to hit the person. But she didn't want to leave the situation. So positive experience was able to override her normal response to a trigger. Glad to her the update on your son. What a tough road our kids have to navigate through life....when life itself is hard enough.
Dr. J: Change of scenery appears to be significant here and in other instances, takes a while to build up new triggers  

My husband delivered the last piece of paper (birth certificate) to my sister yesterday morning. They met at a breakfast place so not to upset our son. Aunt P told Colin that she was going to meet his dad. There was no reaction. Our son knows that his aunt will be meeting and speaking with us but that he does not have to.

Colin visited his new school with his aunt at 1:00 p.m. to get formally registered and for a tour. The only glitch so far is that Colin is taking French which is not offered in middle school. He will have to take the bus in the morning with his cousin to the high school. Fortunately there are a few 8th graders that do this. Another oddity in the eyes of my sister is that Colin prefers to pack a lunch rather than buy one at school like his cousin. Our son told his aunt that he can make his own lunch and has done this at his house. Lunch meat and sandwich bread has been bought. 

Next on the list is new school clothes. We have sent a pile of Colin's clothing to his new home but our son is very reluctant to wear them. He seems to reject things that we have bought for him. Aunt P offered to take Colin clothes shopping and we told her to give us the receipts so we can reimburse her.

Colin seems to be sleeping well and adapting to his new home. My sister is afraid they will spoil him and teach our son bad behavior. My nephew has the latest version of Grand Theft Auto and has been letting Colin play this game which I find horrific. I am oddly o.k. with this. 

Everyone is a bit on edge as to when and what might trigger an attack. So far there has been none. Colin only seems to wear his headphones at night and in the privacy of his room. The curious event was mentioned in the above post to my parent support group. We were all surprised at the lack of a visible response to the lawn crew at my sister's house. 

Is he holding it in to appear "normal"? Was ice cream used as a coping mechanism? Does a new home make the difference?  Will there be a build up of new triggers?

Only time will tell.

We are a work-in-progress! 

Tuesday, October 29, 2013

The Talk

Sunday night my sister took Colin for a walk. She broached the dreaded topic of transferring to a new school. Our son was still under the impression that he was going to go back home and take up where he left off. He thought he could live in our house, avoid his parents and go back to school.

His Aunt P. made it clear that this was not possible, nor was she going to drive three hours a day to get him to and from his old school. I doubt he'd survive the daily car rides anyways, especially when the heater or windshield wipers needed to be used.

She explained that his options were to live with her or go to a group home and advised our son to choose wisely. He would not have the cushy environment in foster-care or a group home. Aunt P also mentioned that she needed to get guardianship rights. Colin asked her if that meant he was going to live with her until he was 18. Aunt P paused and said "Maybe". She had a quiet inner freak-out. No one is prepared for the long-term prospects.

Aunt P then asked what he was going to tell the kids at his new school about his transfer. She suggested that he tell them he moved in with his Aunt because he couldn't get along with his parents.Colin said he would just say he moved.

"What are you going to tell friends when you bring them home to your Aunt's house?"

Colin replied that he doesn't have friends come over the house. He just isn't that kid. My sister was shocked. That is not what she is used to with her two boys. (Her eldest is a college freshman who is away at school). She has the house where everyone wants to come and hang out.

We were concerned how Colin would take the news. He seemed to be "o.k." and "fine" and didn't say much else.

Monday morning (yesterday morning) I called to see how things were going. I heard a cheerful "Hello" and then a click before I could say anything. I realized my son had answered and then hung up. My sister called back a few minutes later. She had a friend who had been storing some furniture at her house. They were moving it out of the house and Aunt P asked Colin to answer the phone. He told her that her sister called. Colin did the same thing a few hours later, when his dad called. This time there was no "Hello". Just silence and a click.
That afternoon my husband met me at my office to get some papers signed and notarized. He then met my sister downtown at the County Courthouse. We now have the guardianship process underway. Hopefully Colin will be able to start school in the next day or so.
That evening I was able to get a report. Colin has been sleeping on an area rug the last few nights on his back and wearing his headphones. This is an improvement from trying to sleep sitting up. I am glad he seems to be getting sleep.

He also has been helpful around the house. He made his cousin's bed and helped pick up a bit. My sister is afraid that won't last long and that his cousin will teach him bad behavior. At this point, I don't care. I am so glad Colin seems to be thriving. I am relieved at how the transition is going so far and will not be able to relax until the new school is underway.

My sister offered to write reports for the blog. She also wants to supply links to his new school administrators so they better understand the situation. I think both are great ideas but am doubtful they would have the time or interest to read what is becoming a lengthy book. I did express concern about being careful about who she shares information with. We are worried if any classmates know about Colin's select sound sensitivities, we will all be in big trouble.

 I'm hoping for a good day today!

We are a work-in-progress!

Sunday, October 27, 2013

Sunday Morning Recon

I called my sister late this morning to get a quick update. She and her husband left Colin yesterday afternoon and evening with his (almost) 16 year old cousin to go to an OSU game where they were hosting a tailgate party. My nephew was still sleeping when I called, but Colin was already up, had breakfast and was back in his room.

When my sister and brother-in-law came back at 1:30 a.m., Colin was asleep in his room with the t.v. on. My sister turned off the t.v. and lights and went to bed. He seemed to be in a decent mood this morning but there was no report from his still sleeping "babysitter". Colin had offered to help his aunt and uncle clean up their party van later today after they had a chance to recover from the night before. I was grateful that our son is trying to be helpful around the house.

We are all concerned how Colin will take the news that he will have to transfer to a new school. When I spoke to my sister yesterday, my son was talking about dressing like Sheldon Cooper from Big Bang Theory to go Trick-or-Treating and seemed a bit confused when he was told he'd be at his current home for Halloween. He still was under the impression that he'd be back home and at his school by then. My sister gently mentioned that this was not likely.

In order to remove any doubt about where we stood, I had my sister put me on hold and approach my son. She told him I was on the phone and wanted to know if he would like his laptop to be able to play YuGiOh online with his brothers or to have his 15 year old brother visit today. Colin was a bit taken aback and said that he thought I wasn't going to call the house. His aunt explained that I'm still her sister and that she will still talk to his mother but he doesn't have to. Colin said that he did not want his laptop or to see his brother, nor did he want to speak with me.  

This will make the "talk" go a bit easier. There is no way this boy is ready to come home.

The next step is to hire an attorney to guide us through the guardianship process. We want to be careful not to take any steps that would be hard to undo. We also want to make sure we do not cause my sister and her family to have any financial liability for our son.

For now, our son is being left alone to chill out. We are all being careful to not put too much on him at once. After being witness to the effects of being triggered, my sister is proceeding with a healthy caution. The talk can wait until later today. Tomorrow we will take steps to get the school transfer moving along.

We are a work-in-progress.

Friday, October 25, 2013

Making the Transition

After a rocky start yesterday when it came time to leave the psych hospital,  Colin has settled into his new home. I spoke with my sister last night as well as this morning when she had chances to sneak away. Everyone has been a bit on edge to see how the transition would go. I compared this to bringing home a new baby and my sister agreed.

When he arrived last evening, Colin noticed the great lengths his aunt went to insure his comfort. He remarked that she went to a lot of trouble, told her it wasn't necessary and made sure to thank her. He seems to like his new room and settled in. Colin found a soft child's flip foam chair to sleep on and fell asleep with the t.v. on. The bedroom has a Murphy Bed which currently is up into the wall and will be brought down if Colin decides he would like to sleep in a bed.

He also has been spending a lot of time playing video games both with and without his cousin. One of the things my sister found interesting is that the gaming system in Colin's room had a noticeable fan noise (which can be a trigger and why he stopped using his own laptop). Our son wore his headphones but didn't seem to mind the sound. When asked if the noise was a problem, he said he was o.k.

It was clear that the joy of playing a game that he was interested in, was worth the discomfort.

Starting to Plan for the Next Few Steps

Today we had a meeting with the Cognitive Behavioral Psychologist. My sister pulled into the parking lot of the Behavioral Health Center the same time my husband and I did. We had a chance to chat for a few minutes before our appointment. She had brought Colin's workbooks where I was told he had mentioned some of the sounds that bug him and admitted to getting angry and yelling at his parents.

I was hoping to gather some insights as well as see what progress had been made. What I learned is that we have a young man who is very angry at his parents and felt we put him there to punish him. My sister and I could not help but laugh at what was written on the covers of each book.

One book had the following written in pencil across the cover: 
For pages 2 - 10, I am not going to answer them. I am a healthy boy and I can deal with myself, and I can try to deal with my parents. I am fine, and I just want to go home.
P.S.  - I think my parents put me here just to punish me. They are much more insane and mentally challenged than any person in this building.
The other book had the following message:
For mental suicidal sociopaths who are not the very fine, normal, and ok me that this very adolescent and immature book proclaims I am not.

In my son's defense, the book did seem a bit childish for a teen or preteen.  The only revealing pages were:  

These are the things that bug me. The center of the page had a round face with six oval shapes to write in answers.
Colin wrote the following: AC, Misc. noises, Refrigerator, Waterheater, Fan


These are some of the reasons I came to the hospital:
I am perfectly healthy and capable of going home. But I came here because, I guess, I totally hate my parents and I scream at them alot.

The rest of the book was used to mostly state that he was fine. For example on the page for different ways kids deal with stress (play sports, listen to music, watch tv or play video games...)  he was to circle the ones he wanted to try.  Instead he wrote: "I am fine in every possible way. The person who gave me this book obviously does not know that."

From what I can see, we have a young man who is pissed-off at his parents and is not yet ready to admit any problems. I don't see that Colin's time at the hospital has changed much other than perhaps deepening his hatred toward his parents. I am now acutely aware of the deficiencies in our mental health care system. I don't even want to think about how much this adventure in futility has cost us.

In our hour-long meeting with the psychologist, we discussed some of our current concerns such as how to talk to Colin, setting realistic boundaries such as times to settle in for the night and morning routine, and preparation for starting a new school. We will have to sign over guardianship rights to my sister.

It is important to not get too far ahead of ourselves and take it one day at a time. Baby steps.... for a 12 year old baby.

We are a work-in-progress!

Thursday, October 24, 2013


 Post to Parent Support Group - Thursday, Oct. 24
Today is the day my son will be released from the Psych hospital. I'm not sure how much progress has been made. He is still refusing medication. He will be going home with my sister and her family. She lives 40 minutes from us. Colin will need to go to a new school. We will try to have therapists visit him at his new home. I am hoping that they are presented as "well-check visits" and that the word "therapy" is avoided at all costs. My son will be in a really nice home that is MUCH better than ours. I am praying for a relatively smooth transition. Stay tuned.....
Jaimie:  I am sorry he didn't make much progress. I hope you will remember that this isn't about your sister being better or having a nicer home. You are his trigger because you are closest to him. I know this from personal, firsthand experience. They may become triggers as well once he lets his guard down. Either way, your family remains in my thoughts daily
Me: Thanks, Jaimee! I agree. I am just so very grateful to have the support system that we have of friends and family. Not everyone has this.
Lisa: I was speaking to our NFB practitioner just yesterday and spoke about you and your husband and what you are doing for your son. I credit you both and want you to know that it is with utter gratitude I watch. My daughter does not have nearly as severe a situation but all of our kids have difficulties they must live with on a daily basis. It is situations like yours that I must believe will be the ones that cause the medical community to really investigate and hopefully come up with more and better solutions. I have to say - the pill solution is not one I embrace in the slightest. I love NFB, CBT a better diet and am now wanting to check into the hypnosis since someone on here mentioned success with that... But will wait until we have done at least 80 sessions of NFB (we haven't even done 40 yet but are close to 30 and there is definitely improvement in how she handles herself even if she doesn't see it.  
Me: I am hoping with time my son will do NFB. I have a person who is on hold for that piece. Sometimes medication is a temporary, necessary evil. The missing piece for us is a child that is willing to accept help. Thanks for your support!
Lisa: My daughter has been reluctant to accept or embrace the tools I am providing her - fortunately she responds to the - "if you do not use the headphones/sound generators/control yourself and make requests politely then you can suffer as YOU DO HAVE A CHOICE how you handle this". She may not have a choice about being born this way and having to deal with it but she has a choice how she deals with it and to me that is the best preparation I can provide her to live as full a life as possible and not be completely isolated or severely limited in her choices as an adult. Fingers crossed for us and prayers being said for your family on a regular basis.
Lorna: You must have an amazing sister . I hope your boy finds some peace there, for as long as he can . Thinking of you. 
Kristina: How does he feel about going there? New school? 
Lesli: Will he see you yet?
Me: I got off the phone a little bit ago with the hospital. The launch went off with just a hiccup. My son kept flip-flopping about going and holed up in his bathroom. He was worried about going to a new school. The social worker talked him down and made our son realize he was in control. When he realized no one was going to forcibly remove him, he got ready and went out with a smile and waved goodbye. Colin was told that we will remain out of the picture unless he wants to see us. I can now breathe! I owe such a debt of gratitude to my sister and her family! I think he will be so spoiled there that he may not ever want to go home. I'm oddly o.k. with that.  

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.

Monday, October 21, 2013


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.

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!



(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


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.


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
Update on my son:
We went to visit my son last night and took along his 15 year old brother. My son was glad to see his brother but did not want to visit with me or my husband. I'm feeling much better about the Psych Hospital (other than the cost). There is structure during the day and the kids attend classes.

Apparently my 1st goal for treatment is a tall order. I wanted my son to admit he has a problem and accept his disorder. I am told Acceptance is not a short-term goal. My 15 year old has a hard time seeing his brother due to not knowing how to answer his baby brother about when he is coming home.

We met with the Psychiatrist who will be managing my son's treatment. She suggested a combo of drugs. We decided to have her start Colin on Neurontin. That should have been started last night after we left (if my son will take his pill).
She also wants to add a SSRI (Prozac) in a day or so.

Does anyone have the experience of combining a GABA with an SSRI?
We have a long road ahead but hopefully our son will be able to take his medication and soften his stance toward Mom & Dad. 

I'll be back tonight!

We are a work-in-progress!

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.

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

How Our Son Scored a Trip to the Hospital

  Post to Parent Support Group - Saturday, October 12
Results from Yesterday's Psychiatric Evaluation: After Thursday's trip to the Neurologist, our son was even more agitated in being forced into a trip to the Psychiatrist and went completely off the rails. After a 15-20 minute torturous car ride, he was completely raged. As with Thursday's appointment, I left my husband and son in the car and went inside to register and request a private room so not to disturb the other patients.

They just so happened to have an empty waiting room, off the main entrance. I had to help wrangle and my husband carried my son inside, who was just wearing underwear, (same procedure as the day before). While in the waiting room, my son was screaming and punching at his Dad and was the most physically combative to date.

His behavior triggered an automatic trip to the Hospital. There was no room at the Psych ward so he was taken to the Children's Hospital E.R. As there were no hospital ambulances available, 911 was called and there was a team of people involved to insure safe transport. This was not a quick process and my husband and I were ushered into the Psychiatrist's office.

In between handling frequent interruptions from staff and then the squad, we had a chance to speak with the Doctor. She is young (30's?) and had a nice manner. Within the first few minutes of meeting her she was very somber and said she had to tell us something that no parent wants to hear. "Your son is going to have to be hospitalized."

I may have surprised her with throwing my hands into the air like I was at a church revival and enthusiastically agreed. This had to happen.


We were at the ER until close to midnight before my son was admitted into a hospital room.

While in the ER exam room, my son was assigned a constant companion, Doug. After our son was completely calm, he conversed with Doug, played cards and when the new companion came, he was watching TV. My husband and I tried to stay out of sight as to not trigger our son further.

We were visited by an ER doctor, a couple of nurses, and a social worker. The doctor was young, blonde and pretty. She seemed to get the most information out of our son. He was evasive as to why he was there, did answer some questions and did indicate a dislike/hate of his parents but didn't explain why. From what the ER doctor could tell our son does not wish to harm himself or others but would be o.k. if harm came to his parents. While everyone seemed impressed with how intelligent our son is, there was concern with how he was deflecting and avoiding questions he did not want to answer(manipulative behavior).

He is now in a cancer ward (that's where they could find a room) and will remain until a room opens up at the Psych Hospital. At this point our son is being babysat until he is to receive psychiatric treatment.

We went to bed around 1:00 ish and were woken up by the phone at 3:00 a.m.. My husband answered, "Hello....Hello.... Colin?" and our son merely said, "Dad, can you come get me?" Dad explained that he couldn't and then spoke briefly to the nurse who let our son use the phone.

This morning, at 8:00 we received a call that our son was "agitated" (standing in the corner crying to make it stop) and was asked for permission to administer Haldol to calm him. We had been prepped for this yesterday by the Psychiatrist and gave permission. I told the nurse that I believe the air conditioning/HVAC system is what is triggering him. I'm not sure what they can do.

I have asked for the nurse to call back when our son is stabilized.

I just got off the phone with the nurse. She was only on duty at 8:00 this morning but it appears our son was "agitated" since 3:00 this morning, around the time of the phone call. From what I can tell our son has not eaten much and had been on his feet from the time he was admitted until he was drugged and put into bed. He is now sleeping and is restrained. They did shut off the vents and I made sure the nurse knew all of his triggers and what to watch for. I told her that I'd like to be updated on how long he sleeps, what he eats and what drugs he is given.

My 15 year old is at a quiz tournament and 16 year old and husband are at a cross country meet. The plan is to take turns being on call so that we can each get some
work done.

I'll update when I know more.
snippets of  parent support group discussion / comments I made

Thanks, everyone for your prayers and support. My son needed to be hospitalized and I am relieved this has finally happened. It will be a long process. So far I do like our psychiatrist. She has clearly outlined during our meeting what to expect. My son 1st needs to learn how to manage (behavior & coping therapy) and not take his family hostage. Drugs will be needed for now. He will be taught using a system of frequent rewards. Once he gets to a point, we will learn how to work with our son. While Neurofeedback is not something the doctor uses, she is not opposed down the line. She acknowledges that NFB is harmless at worst and biofeedback also has had some benefits. I left her with my copy of Sound Rage as she seemed interested in learning more about Misophonia . It doesn't matter what name we give my son's condition according to the doctor and I tend to agree. For now, I will not look too far ahead. We need to get him stable enough to come home.

Also for those of you who may be in our position down the line, the doctor was very impressed with our documentation. I would suggest taking a video of a triggered-attack as well as a video tour of your home environment. We also provided a timeline of events, email reports from teachers, & pertinent pictures. We also listed our goals and concerns for treatment. Doing your homework helps!