Preoccupied...for the moment

First thing this morning (and barely awake) I drove the 75 miles to meet with a social worker.  I wanted to plead my son's case.  Because the first test they gave him was inconclusive, I still had a chance to work some "mama magic" and hopefully defer any other diagnosis.  My gut tells me that this brilliant child of mine just needs time to work this all out in his head.  He has had to deal with too much stress in the past year.  And, recently saw his entire reality crack when he realized that his Dad was not who he thought he was.  He had held his father up on a pedestal that was completely unreal. And it is easy to be king of a child's world when you only see them for a weekend here and there.  Especially your own child, your son, who WANTS to see the best and can be easily manipulated to look the other way.  When his Dad began visiting him here, at our home, with me as a buffer, he began to see the way things really were and he couldnt deal with the reality.  I know that eventually he can work all of this out but I worry that putting him in a marathon when he is barely standing on his own will break him.
I pled my case and then spent a half hour with Seth.  He wants to put in his written notice that he is requesting a hearing and I asked him to give it a few more days.  He earned full privileges today and can walk around the campus, go to the gym and eat in the dining hall.  This bit of freedom should help him, especially when he needs time to himself.  But after speaking to him, I knew that there was so much more bothering him.
He told me a story about a little girl today.  She had a melt down on the unit and began to cry, to beg the nurses to let her leave. Seth told me that she kept sobbing and saying "I promise to be good, please let me go home. I promise if you let me go home I'll never be bad again. Please, please let me go home to my mommy. I swear, I promise, I won't be bad."  I could see her, in my mind's eye and my heart broke for this child.  Another little boy was running from the nurses and they tried to catch him.  He ran by Seth shrieking down the hall and they eventually caught him. "I think they tazed him" Seth said to me.
"I am sure they probably gave him a shot and that calmed him down quickly" I responded. And I hope that is true but my mother told me that they CAN use tasers if they have to.  On children? I really hope that is not the case.
I asked Seth if he was able to help any of the other children but he said no, he cannot relate to them at all. The social worker told me he hangs back, sits on the couch or in a chair in the corner.  He is not trying to relate to the other kids. I don't think he knows how.  He said it is utter chaos and he sits and tries to handle himself as best he can.  To bear it, he said.  He is just trying to get through it.

So, tonight, I tried to beg off the "move and groove" night at the elementary school.  I felt so drained, so completely exhausted and quite simply just ill after my visit today.  But my eight year old wanted to go so badly and her friends were going to be there.  I can't neglect the other kids and make this any worse for them and as it is, my patience is not functioning the way it normally does.  I am abrupt and distant and trying to be strong for all of us. I'm really not tolerating frustration.  So, we got dressed and grabbed a slice of pizza and I immersed myself in line dancing with Sage and Bella, and their friends. Sage requires a great deal of hands on help to stay focused and I helped her with the games, which involved many steps. Ian had to come to the school an hour early for the rehearsal for the school play, in which he has a lead. Looking at the clock, I knew I had to race outside and wait for Seth to call.  Riley also wanted to speak to Seth.  We hustled to the auditorium so that I could arrange a ride home for Ian and then ran to the car where Riley tried to reach Seth on the cell phone.

When I returned home, there was a text from someone who was at Move and Groove night at the school.  Apparently, she had been talking to one of the girls and I abruptly took my daughters hand and left.  I felt terrible. I did not notice that they were interacting...and I wouldn't be rude to anyone in that way. It is never "me" to be impolite to people.  The last year has been hard and not everyone has understood some of my choices.  Not everyone understands that I am forgetful because of the Subclavian Steal Syndrome, or that the reason my ex husband stays here a night or two a month is because it's the best way for me to supervise his time with Seth.  I feel judged on all sides...and now I am appearing rude to people I would never be rude to.  Aside from this blog, which I hope will reach other parents going through this with their own child, I'm not broadcasting how difficult this entire situation has been for us.  Tonight, I was so preoccupied with thoughts of what was happening seventy five miles away on a locked unit that I may as well have been alone in that room full of a hundred children and their parents.  My heart was elsewhere.  I was seeing children crying, begging for their mothers.  I was seeing little boys race down long hallways only to be restrained when they finally hit a dead end.  And I was seeing Seth, in my mind's eye trying to stay solid, stoic, and sane in the most difficult situation he has ever faced.

I was so happy that I could relax, even for a few moments this evening, and watch my daughters prance around, with balloons stuffed in my bedtime boxers. Wiggling their big butts. Laughing. Being silly.  We watched American Idol and tried for just a bit to be a normal family. My father sent me a text telling me he loved me and reminding me that God is with me, every step of the way.  Carrying me when I cannot walk.  THIS is where my strength lies...in the faith of my parents and the laughter of my children.  It is really tough to keep up appearances and being in the moment, when you are missing one of your children, is a near impossibility.  But I have been reminded...and that is my task for the next few days.  Live in the now.  Enjoy the laughter when it exists.  Be kind to those around me and SEE them instead of looking through them.  I am glad for the lesson, even when the way it's presented to me is a challenge.

Everyday Invincible...and conquering my world one breath at a time.

Burning up the Phone Lines

After dropping my son at the hospital...as relieved as I felt after viewing pictures of the hospital that almost made the place look like Club Med...I threw up. I was in a terrible mood all afternoon and stayed in my room most of the afternoon. Just after I pulled myself together, he called to beg me to get him out. I could hear screaming and general chaos in the background. Suddenly, it became very clear to me why they do not let parents visit the unit.  Nobody would leave their child there if they knew how bad it could get.

Today, I began the day by calling the Mental Hygiene legal experts.  The news was not good. Four doctors recommended my son's transfer.  All of them worried that he was not ready...not safe.  And yet, he is nothing like the other children on the unit.  Most of them appear to be severely autistic.  Why are there no options for kids like MINE? If you cannot afford the thousands and thousands of dollars a private hospital charges...you are left with very little. The most I could do today was advocate on his behalf.  I called St.James, the local hospital he was transferred from.  I begged them to call Elmira and plead for privileges ..anything that would make it possible for him to get away from the chaos when he felt that he needed to.  They operate on a point system and because Seth has not been there more than a day, he has not earned enough points to go to the "fitness center" or even the dining hall.  He is stuck in an environment unlike anything he has ever seen.  They assured me that he was where he needed to be and told me how I could reassure him.  I don't think ANYthing I say will reassure him, certainly nothing less than "pack your bags, I'm coming to get you".
I finally was able to speak to his social worker. I told her to picture your All American boy.  Sports teams, AP classes, composes music on the piano, a wonderful big brother. The kind of kid that other parents WISH they had.  He's a fantastic, smart kid.  Right now, he has had his reality shattered and needs to get back on his feet but he is NOT out of his head disturbed.  I worry that this WILL make him disturbed! I worry about the affect just a few days in this place will have on him.  One thing is for sure...he will NEVER say another crazy thing in his life (hopefully) after being exposed to the worst of the worst.  Hopefully he will come out grateful for his life, his sanity, his family. His freedom.  But on the other hand...what if this scares him so much that when he really does need help he won't ask for it? What if he becomes afraid that telling the truth will result in him being locked in a nightmare?
I was up all night. So many scenarios went through my head.  Finally, I bought some Advil PM just to catch a bit of sleep. I think about him constantly.  I'm distracted or on the phone all the time and the younger kids have taken to yelling and fighting out of nowhere the minute they see me on the phone.  And therefore, it's very obvious to me that they resent all of the attention being focused on their older brother and need some on themselves.  It's very, very hard for me to be in the present when my mind is with him.  This afternoon, I did some online drawing classes with the girls and we all watched Survivor as a family and ate ice cream.  I think they really appreciated that time together.  I felt guilty for not calling Seth.  I felt like eating ice cream when he is eating bland food that is delivered to him on a hospital tray was a guilty pleasure.  And I replay so many t hings that have happened and try to learn from them, so I don't make the same mistakes with the other children.  Four doctors have told me there is no blame.  They have said to me over and over again that this is an organic, biological, chemical problem.  It does not take away the regret.
I told the Social Worker that I was worried for him and that someone there needed to be his advocate and make sure he knew where he could go when he needed to relax. They have prescribed him anti anxiety medication but he has never taken it and won't ask for it.  And he worries that if he DOES ask for it, that they will just write down that he was anxious and it will be another strike against him.  He needs to be here, with his family and his friends, with everyone who loves him.  And I know that they tell me I can't keep him safe and that this is for the best...but there has to be another way.
Tomorrow I am leaving at 8am and driving to the hospital to meet with the Social Worker. She seemed surprised that I was willing to come at any time, with a moments notice.  I have to wonder what she is used to dealing with. Wouldnt any mother drop everything to come, if it meant her child could be home sooner?  Am I that different from other parents that just accept what has happened and carry on with their lives? I feel like a piece of my SOUL is missing.  There is nothing I would not do to make him well and have him with us.  I am so grateful for the good in my child.  I'm grateful he is not one of the children screaming in the background when he calls me.  I'm so utterly and completely thankful he is not the little boy in the room next door who spends his day banging his head on the wall and I pray for those parents and for that little boy.  I'm proud that my son was not one of the kids stealing the keys from their teacher at the hospital today.  He has not lunged at anyone or tried to choke them.
I will pray for those who have to cope with such things...but pain and regret and loss are all relative and as grateful as I am for what I have, I feel this immense sense of loss and helplessness.  I have a beautiful boy and he is not with us tonight.  And I pray for him as well.

The long drive to admissions

I am following the ambulance. The ambulance has chains under it and I can hear them clanking on the highway as we passed cars and drive over the speed limit on our way to the hospital. Everything is a crystal clear focus, church bells ringing in town, bright green lights, bright red lights to give me a little bit of time to try to see him in the window of the ambulance. They brought him out tied to a stretcher and I wanted to reach out and feel his fore head for fever. It seems so odd to see him on the stretcher that way. The ambulance is red with yellow stripes on the back and it says advanced life support. I'm trying to think of this is saving his life. It isn't easy when I want so badly to bring him home.
I have a child who is autistic and somehow I always pictured this sort of journey with him. Yet we have been so strong and we've avoided this the entire way with him.
Passing the airport I see a plane land and think of his plan to be a NAVY pilot. Passing the mall I want to buy him a new EXPRESS sweater .
So so hard.

Soccer socks and AXE

Seth called from the hospital and needed his gym clothes and shoes from the boys locker room at school. At first I panicked. It's the only thing he has asked for. He has gained eleven pounds in 20 days and knowing this new hospital has a fitness center has him sounding almost chipper. A little hope goes a long way.
I called him and he guided me through heretofore forbidden territory. The locker room smelled like sweat, socks and AXE. Luckily I found what he needed.
But even this success brings tears to my eyes. These are his track shoes and track season starts this week. Instead of running with his team, he is taking his shoes to a hospital. I'm emptying his locker, but not for a bus ride to State Finals... It is a sad, lost feeling.
I'm so happy to accomplish this one thing. Anything I can do to mother him gives me joy. I am not sure how I will be a strong support to him when he is so far but tonight, thankfully I was here at school for my other child's rehearsal and can do this for him.
I am still dreading the drive tomorrow. Even though I signed the paper for his transfer, for some reason (because he is a minor) it is still considered an involuntary admission. I hope like hell he won't be there long.

The Impossible

I really Tried to find a way to get out of signing the papers for my son's transfer this morning. I called legal help lines and mental hygiene and the county health department. I sent emails, one especially long email to his primary therapist asking for him to seek some kind of least restrictive setting. I promised a kind of true vigilance that I've never even thought about before. I envisioned myself sleeping outside of Seth's bedroom door at night to keep him safe.
And I spoke to other family members to see you how they felt about me keeping him at home. He had promised me, even sworn that he was not suicidal and even his brothers were upset with me for being scared to have him home. I believed him to a certain extent, enough to have him home. I believed I could keep him safe. It was obvious that his judgment was still impaired but suicidal he was not. I am not blind or deaf or dumb and I can see that his thoughts are disordered and his judgment is impaired. But I want to do my job and keep him safe. I don't want to trust him to strangers. I am his mother and I doubt that anyone knows him as well as I do. I just want to love him and make him well.
And there are three definite criteria involved for a child to be committed to a state institution. My son was not suicidal, is not a danger to himself or others, and there really were no true safety issues that I could think of, at least that I could not resolve quickly if I had to.
Mostly, it was hurting me to see him running around looking out windows, a hamster running through tunnels hoping for an exit. It hurt to see him confined. It hurt to see him begging for freedom and know that it was not up to me anymore.
Finally the hospital called and told me to come in for a meeting at 2:30 PM. His father would Attend the meeting through speaker phone. His doctor would attend as with his therapist and I hope my son would be there also. I had to pick up the girls from school to take them to a doctors appointment and they had to wait in the waiting room While I had the meeting.
Just before I left the house I received an important phone call from my mom. My brother is being re-deployed to Afghanistan. He is having a quick wedding before he ships out and it's very important that my son be allowed to attend this wedding.
My only thought was of missing him. I kept thinking if how i wanted him home with me again. I just want everything back to normal. I want to keep my own child safe and hold him in my arms. I don't want to trust him to the state. And I feel like I know him better than anyone else.
I would have to persuade the doctors that Seth could be safe at home. But I was told on the phone that if they truly wanted to hospitalize him they could call the hotline and report me for not doing my job as his mother. I can't allow that to ever happen, i have to protect all of my children not just my eldest.
The kids on the unit wanted a pizza party with Seth before he left. I stopped at Pizza Hut with my girls and bought two pizzas and dessert for the kids up on the unit. They were so happy to receive it and their smiles and their hugs were so good to see. I told my son i loved him and I asked him what he wanted me to do. he told me he had met with the doctors and that they had convinced him this was not something we could fight. He had resolved in his mind that this was what would happen and wanted me to sign the papers. He thought anything would be better than the boredom and loneliness he had been feeling, many times the only kid on the unit. I had stayed up all night wanting this out of my hands and after the meeting with the doctors I knew finally that it was out of my hands for good. His main concern was his education. He is falling behind in school and it was going to take a lot to catch up. Apparently at the state hospital they have full-time school and staff that can help him catch up. He will be allowed to walk and exercise and play at the bowling alley and the gym.
I have hired some people to help me redecorate his room while he is gone. He has a new computer from grandma and a new bedroom set coming and we are going to make it a nice safe retreat for him when he returns. I don't know when that will be and that scares me.
I have adjusted my mind and let go of expectations. Have gone to the confusion and the grieving although the grief is still there and I'm not sure when it will end. And i am ready to put 1 foot in front of the other and move forward . I am ready to love that child just as he is and i will never stop loving him.
Tomorrow at 8:00 AM i have to be at the hospital and I will follow the ambulance to Elmira state psychiatric hospital. It is a trip I do not want to make. I wish this was a dream. It's a nightmare tinged with love. And hope. And great trepidation. I wonder if I'll sleep tonight. I wonder if I can rest by mind. All I really wanted was to drive him to the hospital myself, to have one last ride with him before this journey begins, to stop at a fast food restaurant in buy him a big mac and soda. The normal things. The things I missed most these two weeks. I wanted to blast the music in the car and left with him just one more time before he enters the place that we really don't nothing about. I have the worst decisions of this place although I'm sure by everyone that it's really quite nice. It may be nice but its a jail filled with doctors and nurses and they're not his mother and will not hold him when he cries and they will not comfort him or give him spiritual advice or smile at his jokes like we do.
Finally he is taking a journey that I can't go with him on, his first real journey alone. I can love him behind the scenes but I cannot make him well. Love will not move this mountain although I hope in time it will tunnel through it.
I know that I am not alone and that there are many parents in the same confusing situation. My prayers and my thoughts and my heart go with them tonight and I share this with them. For them. So they know they're not alone. It's very hard to not feel alone. It's very easy to be consumed by stress. I have four other children that need me and I have to be the strong one. And I am.