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.
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!