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!