Choices

This weekend we were told to continue to visit and to make sure we were "in our son's face". The social worker told us that if we stayed away, our son would think that we did not care about him. She also wanted us to push buttons. If my son would react or rage, they would be able to correct the behavior.

My husband & I took turns. Friday he went for a visit. Not much happened, other than my son avoiding him, telling Dad that he hates him and to get away. I went on Saturday for family dinner night. My husband had to take the other boys to a swim meet, so I went alone.

My strategy was to keep my son out of his room and into the general population. I spent the majority of my time in his pod, watching the game. I did manage to agitate him due to the fact he could not escape into his room. Colin only ran into his room twice. Once to get his headphones, which I was surprised at since he hasn't used them in view of the other kids. The other time he came back was to grab some good behavior coupons to redeem for ice cream and jello. Both times he told me he hated me and for me to leave as he scurried by.

I looked out into the main room and saw a little boy trying on Colin's headphones. Colin slipped into the seclusion room to eat his treats. As I stood outside the door and looked into the window, he would occasionally come to the window with an angry face and mouth the words of hate and to go away. The little boy came up with the headphones. I asked if those were Colin's and he gave them to me and said he was holding them for my son. I gave them to the front desk receptionist to hold. She ended up locking them up.

Sunday I came back with my sister. I wanted to see how he would react to his aunt. I gave her permission to "take off the handcuffs" I had previously put on her to not ask about his issues. I told her she had free-range over the conversation. I tried with no luck to get hold of the weekend psychiatrist to get some guidance. Unfortunately she did not call back and was not available when we arrived. We were on our own.

I typed a letter before coming and gave 2 copies to the desk. It was to be reviewed by a psychiatrist and hopefully read to Colin if it was o.k. I have no idea what to say anymore. I decided to speak from the heart.

Dear Colin,

I love you and miss how things used to be. I hate to see what has happened to the bright, loving son who was a joy to be with. We used to be so close.

I feel a whole range of emotions right now. I am scared, angry, tired, sad and my heart hurts. I have lost weight and am not sleeping well. I have a hard time not thinking about you every minute of every day. I hate what we all have become.

We all have choices and need to take responsibility for them. You did not choose to have a neurological issue where certain sounds can “trigger” anguish and rage. However, you have the power to choose how you deal with this disorder. Right now you are letting it take over and win.

Your father and I have decisions that we make as parents. We don't always know the right choices but please know we come from a place of love. We did not choose to have you hospitalized. YOU made that choice by your behavior.

You are not the only one that is angry. I resent the fact that we have tried so very hard to help you and you won't let us. We tried to make things easier for you at home and you screamed and yelled and shut us out. The more we tried, the more hateful and disrespectful you became. The whole family had to walk on eggshells to not trigger you. All of our lives have been disrupted by your select sound sensitivities.

This is so UNFAIR.

I am extremely frustrated by the fact that we think you can be helped but you refuse to accept help. You need to retrain your brain on how these sounds are being processed. This is not easy but I know you are a smart boy and can do this if you want to. There are so many people who want to help you but you keep shutting them down.

Why would anyone choose to live like this?

We all have choices to make. We can not go back to the way things were when you left. You need to live in our world. If you can not be in the same room as your parents and be able to politely and respectfully speak with them, how do you expect to live at home?

We can no longer tolerate being ordered about and cursed at. We can not live with someone who wishes to see us dead and hates us. Why should we?

You have some big choices to make. Do you want to continue to live the way you are? Do you want to get better? Do you want to let a stupid, unfortunate neurological disorder take over your life and take you down? Only you have the power to defeat this. Together we can overcome.

The choice is yours!

Love,

Mom

(editor's note: This letter was never read as it was a bit too much. At least the psychiatrist and social worker know how I feel.)

Meantime, my sister was able to sit down with Colin. I had the front desk be my eyes. He smiled when he saw her and they walked over to a hallway and sat down. I peer around the corner to see my sister talking animatedly and with hand gestures. My son caught my glance and shut the double doors so I couldn't see them.

Apparently the more she pressed about why he was there and his triggers, the more he pulled away. He told her he was fine. She disagreed and started to ask about individual triggers, like his reactions to lawn mowers. That was enough for Colin and he got up and went back to his room. I had her follow him and I went 20 paces behind them. After being trapped in his room and unable to close his door, (his roommate kept opening it), Colin went into a rage and kept screaming "Get them away!" "Make them go away!" "Get them outta here!!!!"

The nurse had us leave and she went to attend to him. Our work was done, we got a reaction. 

It took a while before we could meet with the psychiatrist on call. She apologized and told me she had to check Colin's file. She could not believe we were told to agitate him without being in a controlled setting with a social worker and team. But sure enough the social worker had noted that we were to "push buttons".

It took Colin 45 minutes to calm down after we left. He was fine the rest of the night, other than no one knew where his headphones were. I told them they must still be locked up.

Monday morning at 6:00 a.m., I had a nice chat with a night nurse with whom my son has rapport. She is very worried about him. He still won't take meds and seems to be out of touch with reality. He mentioned a few times that I hate him and want to kill him. He also has unrealistic expectations as to where and how he is going to live.

He wants to go home and back to his school but wants nothing to do with his parents. When told living in the basement, avoiding your parents and getting your own meals are not an option, he said he would just stay at the hospital. He was told that is not possible and he will have to leave soon. He then mentioned living on the streets and was told that he was not equipped to do that. He then mentioned that he could live with his aunt. I was relieved that that option might not be off the table but really concerned that after a week, no real progress has been made.

It wasn't until the end of the day until my husband finally was able to get in touch with the Social Worker. He ran into her as he went in to the floor to check on my son. She told him we are next on their list and could meet tomorrow (Tuesday morning) with the managing psychiatrist. I can not meet until the afternoon, so we will see whether this can happen or if my husband will need to go alone.

I am so very frustrated on the lack of clear communications and the lack of progress.

We are a work-in-progress.