Tuesday, December 31, 2013

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!

Friday, December 27, 2013

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!!!!!!!!

Thursday, December 26, 2013

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.

Tuesday, December 17, 2013

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!

Friday, December 13, 2013

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.

Wednesday, December 11, 2013

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!

Wednesday, December 4, 2013

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!