Ringing the New Year

As we get ready to ring in the new year, I want to end on a positive note. My sister and I have agreed to end all contact for the time-being. I view this as a good thing. It has been difficult to have any type of conversation without it being stressful for both of us. We will leave the reporting up to the Behavioral Psychology team. My reports on Colin will be more sparse for now.

I am committed to becoming an active force in helping others with Misophonia / 4-S.  A discussion in one of my Misophonia Support Groups on FaceBook led to the idea of a special shopping site that would benefit the Misophonia Association. The idea would be to sell t-shirts and wristbands for awareness and have other products such as books, sound generators and headphones that are highly recommended by the "experts" (misophonia sufferers and professionals that treat this disorder).This will be my project, to make this a reality.

As hard as this journey has been, I have been blessed to have found so many kindred spirits through my online support groups. I also have been lifted up by words of support from fellow bloggers. The biggest award goes to my sister, who against her better judgement stepped up to the plate when it seemed we were out of options. For this I will be forever grateful.

I am hopeful that I will come out the other side a stronger and better person. In the words of Gloria Gaynor, "I will survive"!

To all I wish a Happy, Healthy and Prosperous New Year! 


As always.....We are a work-in-progress!

Quick Update

As I was finishing up my last post, my sister called. No surprise, Colin did not react well upon seeing the stocking and gifts. He gave his candy to his cousins and loaded up his gifts into a car to go back.

I have hit my limit for the rest of the year. It sucks not knowing what the next few months will hold. I just can't see how our son will be ready to reconcile any time soon. There is an invisible ticking clock over our heads. The ticking is getting progressively louder and more annoying.

Right now I feel so screwed. Our lives are complicated by trying to figure out the best type of insurance to purchase that will cover our doctors and the psychological care our son will need. We are ready to look at new homes that will be better suited to our family's needs and I am not seeing any promising options yet. We don't even know whether our son will be ready to come back to us by the end of the school year. Just for giggles, I looked into the cost of boarding school. We might as well flush Colin's college fund down the toilet. Boarding school tuition rivals that of an Ivy League college. We really don't have the resources to do this.

There is no clear path.

I have asked my sister to go back to communicating by email. At night. And only if urgent. It took me half a day to calm down yesterday. I felt like driving across town to have a knock-down drag-out fight with my son. I know this would not be productive. The best thing for everyone is to have a bit of a communications black out for the rest of the year. The tensions are getting high and I have two other boys to worry about.

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

Silent Night

This year Christmas did not seem the same in our house. As the boys have been getting older, we have cut back on the amount of presents. Sometimes less is more. This year this was not the case; less really was less. The holiday seemed a bit hollow and much quieter with one less boy and a lot less joy.

On Tuesday, the day before Christmas, my eldest drove out with me to my sister's house to drop a few things off for Colin. We filled his stocking with candy,  an envelope with holiday money from the grandparents and a video game that Colin had asked his aunt for a while back. We also dropped off a gift to Colin from another aunt (a personalized blanket from Land's End) as well as something for my sister and her family, even though they do not celebrate Christmas. (a late Hannukah / early New Year's gift).

We met my sister at the end of her driveway, to avoid upsetting Colin. Their family dog was out. He trotted out to the half-way point and stopped at an invisible line, refusing to come any closer, even when being called by my sister. This was out of character for the pup. Colin has been bonding with the dog over the last couple of months. It was as if his canine friend was avoiding us out of loyalty to his new family member.

So far we have not heard anything but are prepared that our gifts will be rejected. The video game is currently not playable as the X-Box has been removed from Colin's room. He has been steadfast in his refusal to participate in any type of therapy, no matter how small.

Status Report

I had a conversation with my sister before we came out. Colin seems to be doing fine as long as he is not pressed about his issues. He has been trying to help a bit around the house and will socialize when family friends come to visit. I have been relieved to hear that Colin has been well-behaved and acting relatively "normal" around others. A college-aged neighbor thought he was adorable. He loves slightly-older women and knows how to turn on the charm.

Earlier this week, he asked his aunt if he could go for a haircut. My sister obliged and they stopped to take pictures on the way. Due to melting snow and heavy rains, a nearby dam has been overflowing. Colin filled up his memory card. It will be interesting to see if he will use his laptop from home to download his cache.

While waiting his turn with the barber, his aunt took him to the nearby pet shop to look at the puppies. It seems like our son is now interested in getting a dog. I've been warned that Colin may be coming home with a "friend". As long as the friend is well-behaved and comes from a shelter, I am fine with this.

At this point, there is no indication that our son will be ready to come home.....


We are a work-in-progress.

No News Isn't Always Good News

I called my sister this morning to find out how yesterday's session went with "the observer" (the cognitive behavioral psychologist intern). I knew that the meetings were going to get more intense and push Colin more.

It was not unexpected to hear that things did not go well. Aunt P is now involved in the meetings. The idea is to start to have Colin earn his privileges by completing small assignments. He needs to address his issues and start to open up.

The first order of business was to clear up the matter of length of stay. Colin was under the impression that he would be at his new home until he was 18. Aunt P informed him that he would be returning home after the school year. Colin was not happy and said that he would rather be put in foster care and will not go back to his parents.

The next part of the session was to get Colin to start talking about why he is at his aunt's house. He pretty much shut things down early. He was not interested in "earning" his X-Box time or any other perks and left the room. My nephew came storming down in disbelief that the game system would be removed from Colin's room until he would start cooperating. A large part of Colin's free time is spent on this system.

The "observer" left early and said she would email a worksheet for Colin to complete. The X-Box was removed for now. The worksheet is a simple page for Colin to list noises that bother him. It should take a very short time to fill out. My sister told me she planned to give this to Colin after school and if he filled it out, she would put the system back.

My husband will speak with our psychologist tomorrow for a briefing. I decided to not tell him about today's conversation with my sister. He is very sensitive and each setback tears him apart. I'm sure the CBT will be able to relay the report in a less upsetting manner.

In another day, my middle son will meet with our psychologist. Thursday is also the day my sister's college freshman will be returning home for break. Hopefully this will bring some relief. It is hard to take things day by day without a clue what the future holds.

Time for bed and to put all of this to the back of my mind.


We are a work-in-progress!

Left Behind

Yesterday afternoon I received a phone call at work. The caller identified herself as the education liaison at the psychiatric hospital. She asked how Colin was doing. I didn't know how to answer and was a bit speechless at first. It has been two months since his stay. This was the first call from someone at the hospital asking about our son.

The reason for the call was to inform me that Colin had left a small book bag with two text books (Geometry and Science) and a Stephen King book (11/22/63) behind. We needed to come back to retrieve it.

I could feel resentment and disbelief bubble to the surface as I was flooded with memories that I had pushed to the back of my mind.

I politely let her know that we were less than satisfied at the treatment Colin received while in their care. I asked the educator if she had any input with the administrators and staff and told her I'd to be love to sit down with the director.  I have numerous concerns and feel they could benefit from parental feedback.

The communication gaps and lack of follow up is appalling, especially as I've been told by all of our doctors that we were at the best psychiatric facility in our city.

We will make arrangements to pick up the bag and the liaison will pass along my concerns and desire for a meeting. I would love to be able to help make a difference. It will be interesting if this if there is any follow up from the hospital....


We are a work-in-progress.

Changing of the Guard

Yesterday morning we awoke to 2 inches of fresh snow. Fluffy flakes covered our cars and the roads. This was easy to brush from our windshields yet caused some early morning traffic hazards. This was the day my sister had to go to a court hearing to have her legal guardianship of Colin approved.

My husband went to the court to attend the hearing. It was not necessary that he be there and he arrived on time. My sister was about 20 minutes late due to a traffic jam, despite leaving extra early. Fortunately almost everyone else was running late, including the judge.

My husband found the judge to be very sympathetic and the guardianship was approved.

The judge heaped praises upon Aunt P. We are very lucky to have her. Unfortunately right now, my sister does not feel so lucky or altruistic. Having an unpredictable, extra child is adding much stress to her life. She made a commitment and is following through but understandably has feelings of resentment toward the position she is in. There is nothing we can say or do that will help at this point. We all just need to get through the rest of the school year and hope Colin will be ready to come home.

While I am relieved that Colin seems to be doing relatively well at his aunt's house, I am concerned at the amount of work that needs to be done. No rages so far but he is far from the child he was a year ago. He has limited his wardrobe to a few pairs of shorts and short-sleeved polo shirts which he continues to wear despite below-freezing temperatures outdoors. We have been assured that many kids wear shorts through the winter and this is o.k. He also still has his odd quirks like sleeping on the floor and aversion to certain sights and sounds, as well as eschewing most of his belongings from home. Colin continues to be in denial and refuses to discuss his issues. His mantra seems to be "I'm fine."

We have to pick and choose our battles.

And there will be many....

We should get a report from the psychologist tomorrow. Next week we have an appointment for our 15 year old to see the therapist.

One day at a time. One battle at a time.

We are a work-in-progress!

No News

My sister called yesterday morning to report that there was no real news to report. The "observer" made her weekly visit on Monday. Colin seems to be in a holding pattern. He is neither progressing or regressing. My sister is a results-oriented person and is frustrated. I know how much worse things can get and am I am content for now.

I am trying not to look too far ahead. We will need to figure out what to do for Spring Break as Colin will be staying home. My sister and her family are going on vacation and it is far too risky to take Colin with them. She feels guilty. I keep telling her that we will figure something out and not to worry. I would be fearful that our son would ruin an expensive family trip. He does not do well in hotel rooms and would most-likely be triggered.

My husband has a meeting with the psychologist tomorrow. I need to make up a list of questions and concerns. My biggest concern is to figure out how we can start to reconcile with our son. I'd like to be able to be in the same room with him without a rage. For that matter, I'd love to be able to be in the same house without him going into hiding.

We do not understand why Colin continues his refusal to be in the same space as my husband and I. It is even more puzzling at his shunning of his brothers. I am so tired of the constant suspicions that our son must have suffered some sort of abuse. It is hard to fathom the only explanation we have: he is furious that we would not "stay out of his business" and had him hospitalized. I wish he would realize that his attack on his father is what prompted the stay at the psych hospital. He clearly has no idea of how bad his rages were.

The time apart has been healing for me. I am finally sleeping and eating regular meals. I still visit my online support groups several times a day. I scan for helpful information and try to jump into discussions when I have something to contribute. Every day I play back the past several years in my mind like a newsreel, scanning for missed signs. There is nothing that could have prepared us for the hellish summer and wild ride we are on.

One day at a time.........I will now take a deep breath and start my day.


We are a work-in-progress!

Turkey Day

Wednesday night, my husband dropped my older two boys off at my sister's house after their high school swim team's alumni meet. I was a little apprehensive as my sister did not give Colin any advance notice. She rightfully felt that she did not have to run her decision by her new charge to invite her nephews to spend the night. One of our brothers and his wife came in town to visit for a few days. We wanted to have as much quality family time as possible.

Aunt P agreed to take the responsibility for making sure our boys were returned home. We were hoping to have a drama-free holiday.

No News Is Good News

We had warned our boys ahead of time that their brother would most-likely avoid them. Colin had told the "observer" (CBT Intern) that he would not eat at the table with his brothers. It made sense that he might not want to interact with them. We maintained "radio silence" and enjoyed a quiet day to ourselves. I made a turkey feast for two and we lounged around the house being mostly unproductive and resisted the urge to call Aunt P to check in.

Around 9:00 p.m. my brother and sister-in-law came by with our two boys. They had just seen the new Hunger Games movie "Catching Fire".  We had a chance to finally get our report.

As Good As It Gets

As expected, Colin avoided his brothers over the 24 hour period and stuck mostly to his room. The only incident was when he released the birds (my sister's two Macaws). Although the birds are allowed to be taken out of their cages, Colin is supposed to ask first, especially when company is over. He tried to play innocent but he was reprimanded as it was obvious he did this to get back at his brother. My middle-son is afraid of the birds and had agitated Colin by his persistence to make contact when it was clear his baby brother did not want to speak with him.

The rest of the time was incident-free as Colin was allowed to stay in his room. He also stayed home by himself while everyone else went to the movies. For now, this is as good as it gets. There have been no rages. Colin has been polite when speaking with his visiting Aunt & Uncle. It took a bit for him to warm up. As long as the conversation steers clear of his issues, Colin was happy to show off his photography and converse with my brother and his wife.

Fall-out

My middle-son, weakened by a cold, is still a bit sensitive to being shunned by his brother. I noticed a post on his FaceBook page that I have asked him to delete:

I don't know why I keep trying with him. I always have faith that he will change but he never will I guess. I just want to thank him for ruining thanksgiving, as well as my weekend.

I explained that he shouldn't be airing family problems to hundreds of friends on FaceBook and that his remarks could be misinterpreted. Only a few of our family friends are aware of our issues and would understand who "he" is. I have also suggested that my husband try to take our 15 year old to an appointment with our Psychologist. Even though these appointments are mostly used for updates, I think it would be helpful to have our middle-son involved in some of the sessions.

My sister-in-law feels a bit sad that she and my brother have not been able to make any progress with Colin so far. I think that being able to have positive interactions with family members is a gift and IS progress. We all just need to lower our expectations. She will try to take him swimming today if they can find a swimsuit he will wear.

Colin has become a sensitive topic for discussion and we have to be careful not to let this ruin our holidays. My eldest seems to have the best attitude, he came into the visit with realistic expectations and made sure to enjoy his meal and time with family. It has been mentioned that his detachment may not be healthy and there could be below-the-surface issues  that need to be addressed.

Rest-assured, my husband and I will strive to get the needed counseling for the whole family.

All in good time......

We are a work-in-progess!

Effects on the Family

I came home last night to find my husband in my middle-son's room consoling him. Apparently the stress of a recent illness, his older brother picking on him and the loss of his younger brother has worn our son down. This blog has been mostly focused on my youngest son to track his journey with his Miso / Sound Processing Disorder (and any other issues that may be going on). Colin's disorder has had a profound affect on the whole family.

Colin used to be close to his brother (our 15 year old middle-son). They had shared a room until the ceiling fan had become an issue. As Colin's disorder became progressively worse, his relationship with our family became more strained. The last time the two boys were together at my sister's house, my 15 year old noticed that his brother seemed to be detached and a bit indifferent toward him. Now Colin has cut off contact as he thinks his brother is a spy for us. It is understandable that our middle-son is feeling a loss and is a bit depressed. He misses his brother and worries that Colin will never be the same.

My husband is also a bit sensitive and emotional when thinking about our six-month roller coaster. The future is so uncertain. Even though our child is alive and thriving at his aunt's house, we have suffered a loss. We are helpless bystanders that love Colin but are currently shut out. Both my husband and I have lost weight and had many sleepless nights. I need to filter my reports to hubs as he is not at the same stage as me right now.

I had been losing around a lb per week and the weight-loss has finally slowed to about a 13 - 14 lb. drop. I have lost my sweet-tooth as well as my appetite. This is most-likely temporary and the side-effect I don't mind so much. I am now back in my skinny jeans! I have been trying to get some distance from a situation I am powerless over. I have been trying to limit my contact with my sister and let her call or email me. When I start to get upset or stressed, I recite the Serenity Prayer in my mind. I can relate a little to Colin's detachment toward us. I've had to do the same in order to cope.

As far as my eldest son, I am a bit dismayed at his lack of compassion and concern. My almost-17 year old does not feel a connection to his youngest brother and claims he noticed when Colin was around the age of 3, he was "different". When asked to explain "different", my eldest used words like weird, strange and never knew what his brother was thinking. I feel mixed emotions. I am relieved that my eldest seems to be unaffected but sad that there is no real bond.

Breaking My Silence and Checking In

 

I broke my protocol last night and called my sister. She was on her way home with take-out and sounded relaxed. I told her about her 15 year-old nephew's sadness to see if she was able to talk to Colin. I hate to see my boys' relationships suffer like this. Aunt P said that she didn't think it was advisable for her to broach the topic with Colin and we will have to wait and see what happens at Thanksgiving.

In his last visit with the "observer", the topic of Thanksgiving came up. Colin mentioned that he would not eat with his brothers and would stay in his room. (This is a bit better than needing to leave the house if my husband and I come over. ) The observer will try to have Colin come to her office soon and warned him that she will start to ask harder questions and he may not like her so much after that.

Other than some issues over clothing, and a few visible triggers such as a reaction to windshield wipers, Colin seems to be doing well. He does not seem to care about making friends and still has some odd behavior like sleeping on the floor and talking to himself in the bathroom. Aunt P did finally carefully ask him if he heard voices, to which he laughed. Colin explained that he was "singing". His aunt told him that it sounded more like talking. He just shrugged it off.

I could tell that my sister is making a concerted effort to stay calm and not argue with me. I have been doing the same. She does still want to push my buttons on the topic of "Misophonia". I have been careful not to mention the "M"- word and avoid putting labels on my son's condition. When I feel she is starting to diagnose, I do ask her not to do this. My sister will immediately accuse me of holding strong to my belief of "Misophonia".

I have to remind her of my concerns. The truth is, it doesn't matter what the exact name is for Colin's condition, I am worried about misdiagnosis. We need to focus on cause and effect and be cautious about treatment. My son, like many other children in my Parent Support Group, displays symptoms across many disorders. This does not necessarily put him in a neat or several neat little boxes. Treating the wrong disorders could prove harmful.

For example, sometimes Exposure Therapy is used to treat certain disorders like Sensory Processing Disorder or Anxiety or PTSD. From what I have read and heard in my support groups, repeated exposure can worsen triggers in Miso / 4-S. Hence the caution on why we should not rush to judgement and be cautious in treatments.

Mistreatment 

 

I am concerned that when my son was hospitalized we further damaged our relationship by following the advice of the Social Worker and the Psychiatrist. We were told to continue our visits and get in our son's face everyday even though we wanted to stay away. We were told they wanted to be able to correct his behavior. This did not happen. Unless getting our son to trigger, only to be injected with Haldol and other drugs to calm him was considered "corrective". The only results of Hospitalization that I can see is that it cemented our son's hatred of us. He now holds us responsible for his stint at the Psych Ward and has told the observer that we are telling everyone that he is crazy. I am very bitter about being misled. We have wasted so much money for no positive results.

The truth we learned the hard way about Psychiatric Hospitals is that unless a child is dangerous to himself or others, medication and treatment can not be forced. At a price tag of $3,500 a day (before any adjustments), this is not a good option if you are not part of "the 1%" who can easily afford this.

For now, we will continue to take things day by day. We will consider each day without a rage or bad event to be a gift. I am still very grateful for where we are. Things could be much worse. I bought a turkey and the ingredients for a Thanksgiving feast for two. My husband and I will have a quiet dinner at home.

I will pray for a Hannukah/Thanksgiving miracle that my boys will reconcile. I will give thanks for what we have.

We are a work-in-progress!

Lessons Learned - Tips For Parents

 Post to Parent Support Group, Sunday Nov. 24

Tips for Parents that are at the Beginning of their journey:

We are now approaching the 6 month mark of our journey with Miso / 4-S and thought I'd share some suggestions.

1. Start with a trip to an Audiologist. We did this to rule out Hyperacusis/ Recruitment. Our son's hearing turned out fine but the audiologist referred us to a Cognitive Behavioral Psychologist as she suspected Misophonia. She was very concerned because he was 12 years old. At the onset of puberty, the combination of hormones and rapid brain development can help create the perfect storm. We were warned to get help immediately as triggers can migrate/ expand very quickly at this age. Sadly she was correct in her assessment.

2. Create a list / timeline of triggers and a list of goals / objectives for treatment. If you are dealing with rages, try to get a video of one. Also take a video tour of your home to give doctors a snapshot of the home environment. As our son's triggers were mostly mechanical, it was helpful to point out the problem areas in our house. When doing so, try to be brief and to the point. Also include any school/teacher reports that will shine a light on your child's behavior at school.

3. Avoid self-diagnosis of your child. As Misophonia / 4-S is not yet a medically recognized diagnosis, MD's can be put off. You don't have to accept every diagnosis that you are given and are free to get 2nd and 3rd opinions. Stick to the facts; this is what bothers my child and this is what happens.

4. Visit with a Cognitive Behavioral Psychologist. - This is the stage we got derailed as my son was adamant in not wanting to be analyzed by a Psychologist of Psychiatrist. We forced the visits and as a result our son started having trust issues. I now know that the child needs to have some sense of control. Honesty is the best policy. Trickery or lies will destroy your relationship. Treatment can not be forced.

When the Psychologist confirmed the audiologist's assessment, we were told that our son has Misophonia and there is no cure. The best he could do is teach coping skills.

This was not an option for us as our son refused to admit that there was anything wrong and would not speak with the doctor.

5. Home and School Observations - A trained observer would go incognito to observe your child at school. Home visits may also be in order.

If autism is suspected, there is a good chance that the school system will pay for this.

Due to our missteps, we did not do this at our home and my son's old school. However, once he started to live across town at my sister's house, we were able to do this. We have applied to make my sister our son's legal guardian. It made sense to our son when he was told he would have to be observed to make sure he was doing o.k. in his new environment. We are using a CBT Intern that is part of our Psychologist's team. The strategy is to let our son drive the process. After the observation period is over, our child will be asked about what he wants. The team will try to help him get there. (we are hoping that eventual reconciliation with his parents will be part of this).

6. Treatment - This is the tricky part. There is no proven treatment at this point. A psychologist will teach coping skills and not much else. We wanted to try Neurofeedback and found a provider through this referral site
(http://directory.eeginfo.com/), but you can not make someone do this.

7. Psychiatrists - with openings for new patients are hard to find. It takes months (or longer) to get in to see one unless your child is suicidal or will likely harm someone else. They are key if you need to have your child medicated. If your child will not take medication (such as a SSRI or GABA) then they are not a good use of resources. Same with hospitalization. Our experience was a complete waste of time and thousands of $$$$$.

8. Most importantly, make sure you have a support system. Groups like this as well as a team of family, friends and professionals are key.

Stay strong!

Third-Hand Report

My husband met with our Cognitive Behavioral Psychologist yesterday to get an update on our son. The doctor is leaving for vacation and we wanted to get a report before Thanksgiving. I am in my busy season at work so hubs went alone.

Although Colin has had another round of observations at his new school and at his new home, the report from this week is not yet filed. We are encouraged by last week's report. The observer is a CBT intern that is finishing up her PhD. She is young, petite and seems to have a good rapport with Colin. He seems to have opened up more than we had expected.

During the home visit, Colin gave The Observer a tour of his new home and was able to point out sounds that bother him. It seems that the trigger noises at home are minimal and Colin can cope by either avoidance or in the knowledge that they are only temporary and will be over in a moment.

He also appears to be coping well at school so far. Colin mentioned vending machine noises as an annoyance. When there are noises that bother him in the class, he asks for a hall pass and escapes to the bathroom. We are not sure how often that happens.

The biggest issue so far seems to be our son displaying "rigid thinking". This was observed in Geometry when the teacher was trying to help Colin solve a problem. He was resistant to the teacher's method and initially wanted to stick to his way. This is a minor blip and not a big deal at this point.

Where the "rigid thinking" appears to be problematic is pertaining to Mom and Dad. He holds us responsible for putting him in the hospital. Colin does not acknowledge any personal blame.

He seems relatively happy and well-adjusted with his new life. Reconciliation is not in the cards for now. My husband and I will stay home for Thanksgiving to avoid upsetting Colin. This is a small price to pay for stability. We have much to be thankful for.

We are a work-in-progress!

Gaming the System

Saturday afternoon, our 15 year old middle son had an idea. If we could upgrade to an X-Box Gold Membership at $60 a year, he could play video games such as Halo remotely with Colin. How could we refuse?

Our boys made arrangements after Colin was assured that Mom & Dad were not involved. The boys could communicate via headsets as they played. My middle-son started to ask his brother about school but was shut-down as Colin was afraid that his parents were behind that question. His brother was genuinely concerned. We had nothing to do with their conversation. The rest of their time was spent strictly on the game.

After an hour, it was time for Saturday Night Live and the boys agreed to play again the next day.

Sunday afternoon, the brothers met again online for another hour of gaming. All seemed to be going well until Colin abruptly seemed to be agitated. He broke off the game and said he didn't want to talk to his brother.

Middle-son called the house to speak with Aunt P. She went to check on Colin and he had retreated to his bathroom. This can be the prelude to a rage. Although he has yet to have a full-on rage at his new home, Aunt P was warned to give Colin his space when he retreats to his bathroom. She thanked her nephew for the warning and that was the last we have heard.

I am still following the adage, "No news is good news" and will continue to stay in the background, out of the way.

We are a work-in-progress!

No News Is Good News?

I have not heard anything about Colin since Tuesday morning. The last I heard is that Colin was to drop French and be put into a STEM (science ) class. He now should be able to sleep later and not have to take the early bus to the High School. This should help lower everyone's stress levels.

One of the hardest aspects of this "Sound Sensitivity" disorder, is all of the uncertainty. What will set Colin off? What is going on in his head? Will he learn to cope? How can he be helped? Will we be able to reconcile? Why, Why, WHY?!!!  It is important to take things day by day.

It is also very stressful having to answer the same questions over and over. Everyone wants to weigh-in and help. Sometimes it can feel like we are being judged as parents and constantly "second guessed". Now my sister has this added stress to her life. It is hard for us to have a conversation without getting into heated discussions. We have reversed roles. She is now the parent of our child and we sit helplessly by the sidelines wanting to help. This is not something she signed up for but has stepped up to the plate as our options were pretty grim. For this we will be eternally grateful.

For the time being, I am backing away and letting my sister contact me with any updates or issues. I will maintain "radio silence" and learn to let go. This is my busy season at work which is helping keep my mind otherwise occupied. It does not do anyone any favors by continuing to worry.

We have less than 2 weeks until Thanksgiving. We have no idea what will happen by then. I will just be thankful for today and assume that "No news is good news".

We are a work-in-progress.

This is Hard

This has been a hard and stressful journey for all of us; one of the most scary rides of our lives. There are no playbooks, no hard and fast rules and unfortunately no turning back. If someone told me six months ago about what my life would be like now, I'd laugh and think they were insane. The challenges we face are no laughing matter.

We've had to put my sister and her family in a very stressful position that they did not sign up for. I hate that we have had to dump our child on someone else. It is so hard to watch helplessly from a distance as my child struggles. I want to help but the best I can do is back away. I will need to learn to control my stress and let others take over.

There are so many things we would do differently given the chance.

Au Revoir to French Class

Yesterday was the day the guidance counselor was to tell Colin he needed to drop French. He got a "D" on his test Friday. The class is for High School credit and will go on his permanent record if he continues. We all thought Colin would listen to the counselor and be o.k. with switching to a STEM class. He was not and thought he could turn things around. He challenged the scores and wanted to speak with his aunt.

While my sister was not expecting this to happen, she made a strong case why Colin could not continue.This was not the same class that he was getting an "A" in at his old school. He was offered help in the form of tutors and extra work and refused the help. Colin blew the chances he was given and needed to face the consequences.

He finally said o.k. and seemed to reluctantly accept his fate. His aunt then took him to Wendy's and his mood brightened. Chicken tenders and a Frosty are a go-to treat for our family when on the run.

Aunt P was also able to talk to Colin about expectations in the future. She explained her role and set some boundaries. I am proud of how she handled things and hope that she finally feels more at ease and in control.

Word from the Observer

So far it seems like Colin is transitioning well in school (other than in French). He is engaged in the classes that were observed and seems to be interacting with other students as well as the teachers. Colin also seems to be thriving in his new home.

He is still very angry at his parents and is not interested in returning home or seeing us. In Colin's eyes we are to blame for his hospitalization and this is an unforgivable offense.

Thanksgiving Plans

As the wounds are still raw, unless there are any changes in attitude, my husband and I will stay home for Thanksgiving. We need to pick and chooses our battles and this is not an important one to push. We don't want to rock the boat.

My brother has offered to help shuttle our two older boys and I think we will take him up on the offer. I would still like my son to stay connected with his siblings.

I'm not sure what the future holds but am mindful of our Behavioral Psychologist's advice to not look too far ahead. 


We are a work-in-progress!

Breakfast with My Sister

I took my 15 year old out for a visit with his brother this morning. We picked up a dozen donuts at Tim Horton's on the way. The plan was to drop off my middle-son and to pick up my sister and take her out to breakfast.

Aunt P & I went to a local eatery and enjoyed a breakfast of Eggs Benedict as we caught up. I wanted to make sure my sister knew that we were grateful for her help. I also wanted to make sure we were on the same page about Colin.

While I want to help in any way we can, I don't want to interfere with her parenting. I made it clear that she needs to make the decisions for Colin and only needs to give me the important details. I suggested that if there are issues that she does not want my opinion on, she can choose not to tell me. We have different priorities and parenting styles and I want to avoid arguing with her. I also suggested that we start communicating more by email to avoid unproductive and lengthy conversations. She agreed with me.

On the way back home, we stopped at the grocery store so that she could pick up bread, cheese, lunch meats and other items for Colin. This gave me a chance to pay for them. I went with the flow and let Aunt P pick out brands we don't normally buy at home. My sister thought it was best not to purchase the same things he was used to at home as these would be reminders of his old life which she would not normally buy.

Crossed Wires

My sister phoned home after we left the grocery store to alert the boys we were coming back. She asked my middle-son if he was ready to go home. They were in the middle of a video game and he wanted to stay a bit longer. She then told him to ask Colin if it would be o.k. if I came inside to wait. The idea was for me to hang out with my sister in another part of the house until my 15 year old was ready to leave. Colin said yes.

When we reached the house, my nephew came rushing to the door. Apparently they tried to call back. Colin had not understood the question and did not want me to set foot into the house. He stormed off and went into hiding. I called out to my 15 year old and told him we needed to leave. NOW!
As we were ready to drive off, Colin was found hiding in the master bathroom. I had sent his brother back in to say goodbye but it was too late; he was now labeled "persona non grata".

There was also an angry exchange that took place between Aunt P and Colin. He was mad that I was out to visit and got my "foot in the door". He saw the groceries and protested that he would not use the lunch items as he knew I bought them. Aunt P fired back that she originally wanted him to buy his lunches at school, that she picked out the groceries and defended her position where I was concerned. She ended up retreating to another part of the house to cool down. I hope my son realizes that he has pushed his aunt to her limits and is smart enough to back down.

While I am grateful that the boys had two hours together, we now realize that we have some unresolved issues for Thanksgiving. We are not sure what will happen but it looks like it is too soon for my husband and I to be under the same roof as Colin. We have two weeks to work it out.....


We are a work-in-progress!

Control

So far the last few days have been Rage-Free. My sister thought about posting a daily sign counting the Triggered-Attack Free Days like they do for accidents in factories. There have been only a few noticeable signs of noise-issues and they were met with minor reactions such as avoidance (leaving the room), asking to turn off the offending item (wipers or car  heater) or to please hurry (driving in the rain).

Control

It was mentioned that Colin seems to have control over his triggers and that he might be using his rage to manipulate. While I agree that some of his reactions were due to anger at his parents, control is not easy. The new environment and the fact that Colin is not yet comfortable in showing his rage may account for some of the lack of attacks. He also is in a home that is much less full of the triggers that he faced in our home. I had to point out that we all have some "Control" over our actions.  I drew the analogy that my sister has control over her stress and anger and this is a choice. Not so easy is it? Control over emotions is hard.

One of the challenges my sister and her family face is to set reasonable boundaries as to how much control Colin is allowed to have. It is important that our son not run their house (this is the trap we fell into). There was a battle over wearing the same clothes (that he slept in) a third day in a row even though they were a bit dirty. (he wore them Sunday, Monday & Tuesday) Colin won that battle with some help from his Uncle. Another issue was Colin calling from school to inform Aunt P that he was staying after school for a Science club and that he needed to be picked up at 4:15. This was done in our house as we live less than a mile from school.Colin could walk home if he couldn't get a ride. His Aunt made it clear that he is to ask in advance next time and that she is not his chauffeur to boss around as she is not always free to do this.

There is also an issue of clear communications. Colin will answer most questions with " I am fine " even when this does not make sense, such as "Do you want Pot Roast for dinner?" They are pressing him to answer with a "yes" or a "no" and are finding out that "I am fine " usually means "No". Another common response from Colin is "OK. Thank You" which is believed to be the equivalent of "screw you"- quote from Aunt P:

 Me : "Colin it is 6:55 and you are not dressed you are going to miss the bus!" -- Colin "Oh I can get dressed fast. "  Me : "Ok well do it"-- Colin " Ok Thank you"

While Colin comes across as being polite, there is an underlying defiance that is being detected.

Trip to the Department Store

Shopping on Tuesday night was frustrating. My sister took Colin and her son to Kohl's. I can't help but wonder if my mother was looking down from the Heavens and smiling. This had to be some kind of Karmic payback from childhood when my sister was a nightmare to shop with. When Aunt P tried to help him in the dressing room, Colin used a defiant and irritated tone to ask "Is this my decision or yours?" When his cousin went to check  a little later, Colin was overheard muttering in the dressing room, "Stop asking me" with tears in his eyes. His poor cousin had to ask his mom if Colin was Schizophrenic.

Call from the Guidance Counselor

My sister called me yesterday to tell me about a call from Colin's new guidance counselor. She was reviewing the Ohio Achievement Test he took last year for 7th grade (8th grade math). She noticed on Math, he scored in the 94th percentile which is quite good. Upon further inspection, it appeared that he had left a section of simple multiplication problems unanswered. The rest of the test he scored 100%. The burning question is why he skipped the easiest section of the exam? Was this out of defiance or A.D.D.? Was he upset that he did not have a calculator or felt these questions were insulting to his intelligence? Was this an honest mistake due to an oversight or not enough time?

Today is the day that Colin will need to drop French. He may be allowed to take the test today which the teacher is sure he will fail. It is clear that while some classes at his old school put him ahead, French is not one of those. Colin had a solid "A" in his old class but in this new High School French Class, he appears to be hopelessly behind. The school wants to replace French with a STEM class.
I am hoping that issue is handled well by my son.

Gratitude

One of the hardest things for me to do is to let go of my son. We are no longer in control here. I hate that I have to burden my sister this way. Aunt P is realizing that she will have to learn to have Patience in spades. This is not her strong suite and realizes

"Maybe I have been given this burden as a way to expand my chronic lack of patience." 

I may not always sound grateful for this huge task we have dumped on my sister and her family but I will be forever in their debt. I also pray I will never have to return the favor. This has been a gut-wrenching journey for all.

We are a work-in-progress!

Cracks are Starting to Show

I spoke with my sister this morning. She was a bit agitated and frustrated with Colin. We are encountering some bumps in the transition.

The guidance counselor had contacted Aunt P about difficulties in French. Colin is behind and the French teacher thinks it will be difficult to catch up. It was recommended that he drop the class and be put in another enrichment class.

On the other hand, Colin is way ahead in Honors Geometry. It appears his old school had taught many of the concepts last year. There is discussion is letting Colin test out and perhaps bump him ahead in math. My sister, my husband and I all think this is a bad idea and could potentially hurt Colin next year. We are afraid he might miss information critical to his success in high school.

No surprise, Colin has other ideas. He thinks he can catch up in French and wants to skip ahead in math. He has a bit of an ego and thinks he is smart enough to handle both issues on his own. We are concerned about his emotional maturity.

Colin is also becoming more obstinate in getting dressed for school as well. He fell asleep in the polo shirt and shorts he wore on Monday and refused to change clothes this morning. Aunt P was angry he would not change but Uncle B told my sister to let it go. (I agree with Uncle B, sometimes you have to pick and choose your battles) He wants to hold his Aunt to her original suggestion about shopping for new clothes and does not want to wear his old clothes from home.

Aunt P has a policy of being honest and may be a little too honest with Colin. She made sure he knew that any new clothes would be paid for by his parents and pointed out that the polo he has been wearing is from home. She also mentioned that he is using his camera which was purchased by Mom and Dad. She is fuming and had to resist the instinct to "beat the kid".

My suggestion is to make sure she is calm when she is "being honest" and to allow Uncle B to intervene when she starts to lose her cool.

Giving Thanks

My sister decided to hold Thanksgiving at her house and my brother Mike and his wife will be driving in from Chicago. Our family is also invited. My husband is apprehensive and is inclined to decline the invitation. He doesn't want to upset Colin or ruin his holiday.

Colin most likely has overheard his Aunt talking about the dinner and asked about it. When told his parents and brothers were invited, he was upset. He was under the impression that we would not be coming to her house. His Aunt explained that she has a right to invite us over and that Colin was welcome to have dinner in his room. He would be safe from seeing us if he wanted to. We have a few weeks to let this settle in. If we do go to the dinner, we will try to keep the visit short.

Visit from the "Observer"

In other news, the CBT (psychologist) came to interview and observe Colin. My sister thought it went well. Colin was able to talk to her and agreed to go visit her at her office. He also was made aware that she was going to observe him at school but the other students would not know about it. He seemed fine.

I am praying that Colin can hold it together and not act out for his aunt like he did at home. I also pray that my sister can control her frustration and anger. This kid will require much patience and understanding. I hate that we are all walking on eggshells and hope we can continue to make progress.

We are a work-in-progress!

Photo Walk and Village People

 

Report From Family Friend Amy

Well...got to P's home around 4...and Colin and I took our cameras around the neighborhood and took pics for about 1 1/2 hrs! 

Then we came back and looked at our pics, and edited some, and traded emails...he wanted to of course show me all his thousands of pics...but I was not willing to go the long haul...so stopped that after a while..We had a good time. 

At one point, he got out his laptop and was showing me pics...his screen saver is you at work...and I did say "You know, she loves you alot"...and he said..."no"...and then asked me like ...so "how is it going'...obviously to change gears...I have some pics I will send you...we had fun. 

Hugs. 

He did say his aunt is "cool"!
_______________________________________________________________________

 

It Takes A Village  

 

My sister is blessed to have a nice group of friends and neighbors. I used to joke that we resembled the family in "The Middle" and my sister's neighborhood was similar to Wisteria Lane in "Desperate Housewives" ( without the murders and nefarious activities ). Their house tends to be a hub for gatherings and constant visitors. 

Aunt P has enlisted some of her neighbors to help be extra "eyes" to make sure Colin is doing o.k. at school, on the bus, and in the neighborhood. Our friend Amy, who shares a love of photography, and has the same camera as Colin, has offered to go on "photo walks" with him.

The first one, which took place yesterday (see report above) seems to have gone very well. Amy also emailed a bunch of photos she took. Colin looks happy and seems to be having fun. He also started to use his laptop that his dad dropped off the day before. This was one of the items from home he had rejected. Funny what a difference a day makes. He needs his computer to be able to view and process photos. 

As tough as this experience has been on all of us, I am encouraged that for now, we seem to be moving in the right direction. 

We are a work-in-progress.

Fresh Start

So far it looks like Colin is doing well. He has had a week in his new home and three days at his new school. It has been hard letting go, but as each day passes, I am a little more at ease. I've been checking in with my sister and getting updates.

Colin has been riding the school bus and seems to be fine with his new school. With the exception of French, he finds his classes easy so far. Overall, my son seems to be happy. Aunt P asked Colin if he was more comfortable at her house, and he replied that he was. Her house is much bigger than ours and the trigger-noises are not as noticeable. He likes having his own room with his own bathroom. It is also a nice bonus to have a new t.v. and a nice supply of video games. He is getting spoiled!

Colin still has a peculiar way of sleeping. He has either been sleeping kneeling and resting his head on a chair, or on the floor with a pillow and blankets. He wears his headphones and covers his head with the blanket. My sister tried to put the Murphy bed down, but Colin asked to have it put up again into the wall. He prefers to have the floor clear of a bed. It's been tempting to put a hidden camera in the room so Colin can be observed at night but the kid already has trust-issues. We don't want to damage his relationship with his aunt.

Last night he went trick-or-treating for Halloween by himself. He originally wanted to dress as Sheldon Cooper from Big Bang Theory. His dad went and bought a costume and took it out to the house while Colin was at school. Dad also took over a box of more clothes from home. The costume was rejected as this was from his parents. Colin ended up going dressed as a banana, using a borrowed getup from his cousin.

Our son chafes at some of his belongings from home. He has to be coaxed and prodded to wear his old clothes which he rejects as something his parents bought for him. There seems to be a selective aversion to the trappings of his old life. The new camera he received this year as a birthday present has been put to good use. He has been taking pictures of the dog and two birds that also reside at his new home. Tonight he is out taking photos with a family friend who shares his hobby and has the same camera. I'll hear from her later to see how it went.

I'll try to lay low and try not to call the house over the weekend. I need to back off and let my sister call me with any news. Monday afternoon, Colin will be visited by an "observer" (Behavioral Psychologist) to see how he is doing. I am anxious to see how this goes. I'm not sure yet what the frequency and lengths of visits will be. I also have to trust the CBT (Cognitive Behavioral Therapist) team know what they are doing. They are dealing with a very clever boy who is adverse to anything that will require him to open up about his sound sensitivities and parent issues.

We are a work-in-progress!

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! 

 

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 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.

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

and

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!