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.

Acceptance

Yesterday, I was told that our insurance won't pay for a long term stay for my son. An entire team of doctors sat at a table with us attempting to explain the unexplained   He needs long term treatment. This is not something acute, they said, when I attempted in my own mind to explain that perhaps he just got so stressed out that he crashed...but would be ok, eventually. They said that this was just the blossoming of a bigger illness.  This was not a one time break.  They need more time to really define the diagnosis.  It could be a bipolar illness, with aspects of a thought disorder. OR, it could be a thought disorder like schizophrenia with manic aspects.

My mind didnt want to accept that.  We have a capacity to choose, to change...to heal.  I have NEVER thought anything impossible.  

I went to the hospital to see him last night and I listened to him talk about suicide.  It is almost a religion to him.  He feels that it's part of his destiny.  Sometimes, he said, God gives someone cancer and they die.  It is meant to happen at that time, and we miss them but understand that this is natural.  But, he said, perhaps God gave him a mental illness AS his way to die.  He thinks it's the same thing as cancer or even a car accident. Just another way for the soul to depart.  The end game is the same.  I could argue til I'm blue in the face and talk myself in circles but since he believes this is just one more way to go and no different than any other way we could die...he cannot be convinced.

While visiting, they brought me papers and asked me to sign for the transfer.  I couldnt sign in front of him, as he sat there begging me to find a way out.  He is an active teenaged boy who has been confined for seventeen days now.  He has gained eleven pounds and spends too much time looking out windows, longing for the outside.  Since the insurance is not settled and we won't know until Monday how this is going to be paid for, I did not sign the papers.

If I am going to get the bill for this, I can't pay.  And yet, I fear for him. I want him with me more than anything in the world.  I want to bring him home and convince him that he has a long life ahead of him in which he can research all these big questions, he can talk to all kinds of quantum physicists and ask all the questions he wants. He can talk to gurus and swami's and ministers and teachers.  He is obsessed with the bigger picture. Spirituality, metaphysics. Quantum physics.  I want him to learn and to grow...but rationally.  I want him alive.  If he says that he is a 4 on a suicidal scale of 1-10...I certainly won't risk forty percent.

As I was leaving, I passed another mother sitting in the hallway surrounded by bags that contained her daughters belongings. She said, "Are you ok"? and I as I put my hands up to say "I don't know", she said "because I'm not".  I understood completely and we spoke for a few moments about our children.  I tried to offer her hope.  Her daughter has an eating disorder and is cutting. Her daughter had refused to visit with her.  I told her that my son had been at that point and it was very common.  I gave her my name, my phone number, my facebook information.  I hope she reaches out.  It would be good to talk to someone who knows exactly what this feels like.  Mother's don't like to feel helpless where their children are concerned. 

I want to micro manage. I want control. I want to MOTHER him back to health. I want to believe this is temporary. I want to believe that he is just so smart, so totally brilliant that he found himself researching philosophy and spirituality and religion and physics and just became confused and overwhelmed.

He isnt alone in his beliefs. Many of his beliefs are shared by millions. It is the direction he is taking these beliefs that cause the problem.

All I could do was hug him, give him a few new outfits that were bought by a dear family friend who cares for him, and ask him to read and exercise when he can...and not to give up hope.  He wanted me to take him with me. And if I could, I would run with him to the ends of the world and FIND the key to all of  this.

If these doctors, all of them, all their tests...all their combined expertise...tell me that this is only the beginning and that there is no end in sight, not now...perhaps not ever...then I need to center myself and prepare for the long haul.

I will accept what I must accept. I will seek to understand the things I cant change.

I will love him and love him and love him....

But I'm not sure that I can ever accept that there is no hope.  God works in ways we can't begin to understand.  I must believe in our capacity to heal.

Chaos Rules the Day

It was the kind of dream that feels real. I heard my alarm ringtone sounding off, Mr.Bean trying to sing me awake. But it was ringing in my dream too and apparently I was not ready to let go. I was in a theatre with a friend I have not seen in years. She was very important in my life and we were together watching a film. She invited me back to her hotel to sleep, which felt like home since at one time she saved my life as a teenager and let me live in her home. I kept reaching into my Casey Was Here bag and hitting snooze when it rang.
After stopping the alarm from interfering with my reunion five times, my eyes popped open. That really WAS Mr.Bean trying to wake me up! Shit! I looked at the clock and lept from the bed. My joints were screaming at me to slow down but it was 7:24 and the bus would arrive at 7:35. Eleven minutes. I hit the floor bellowing.
"Wake up, everybody get their boots on the ground! We slept in. Make it in ten minutes and I'll ...take you to DISNEY WORLD!"
Maybe it wasnt Disney World...maybe it was just a cupcake.
But I didnt feel like driving. Today is an important day. Thanks to Seth's help yesterday, I feel almost ready for this day. Today my father is coming and we are having a birthday party and fathers day celebration. This means the world to me because it is the very FIRST time I will celebrate my Dad's birthday. Or Fathers Day. I grew up without my birth father. The first time I met him, I was twelve and he was signing adoption papers. When I was old enough to do so, I sought him out and we have an unbelievably rich relationship. He is a constant support. This year I got my first birthday card (two actually, because he could not decide on which he liked best), my first Valentines Day card and my first care package with an actual chocolate Easter Bunny. I am planning on cooking for him for the very first time. Watching him blow out his candles. Watching him smile when he gets the shirt covered in my kids handprints. I'm so excited.
But THIS was not the way to start out such an auspicious day.
Flying into the kitchen, I reheated day old coffee for Seth. He can't go into finals without caffeine. I'm thinking about yesterday and how I woke up to Seth putting Sage in the tub, a FRESH cup of coffee and laundry tumbling in the dryer. Paybacks are a bitch. And I thought my karma was repaid when I took him lunch at school yesterday. Back to reality!
Isabella is ready in five minutes. God love that child and her sense of responsibility. The maturity I see in her every day now. She is combing her own hair and out the door in minutes. Even Sage is throwing on clothes. Now I know her secret...and no more twenty minute arguments just to put on a sock. She can do it when she feels like doing it. Seth and Ian are moving slowly. I'm screaming Ian's name when I realize he is standing right next to me. But I don't have time to pull my hair out. As Ian lectures me about an argument that took place yesterday, I look frantically for Seth's Boston Red Sox hat. He is not going to leave the house without it. At least he won't have to find his backpack. He left it at school yesterday. Not a good sign when he has finals today. But that is going to just be what it is and I can't fix it now. All I can do is pour caffeine down his throat and hope for the best.
Riley is quiet, but quick. He is already outside screaming that he can see the bus. Because I don't have time to find Sage's Justin Bieber messenger bag, I throw a fruit roll up in the laptop bag. And she is out the door. I don't have even a second to throw kisses and laugh at Riley for carrying his socks in his hand onto the bus.
It is obvious that Seth and Ian won't make it. Ian is still following me and ranting about yesterday's drama. I bribed them to clean the house while I shopped. Apparently, Seth told the other boys that they would still get their reward as long as HE got the work done. I'm not going to argue this with Ian but I need to make this a life lesson for him. Who knows what Seth's motives were (and the entire thing was probably a misunderstanding anyhow...but that is beside the point since Ian does not understand simple misunderstandings) and whatever they were, the fact was that I was very clear about what I wanted when I left the house. Seth doesnt get to change the rules. If I say clean...then clean you must. Anyone could try to take advantage of Ian. Perhaps Seth just wanted to screw them out of a snack. I doubt it, but in life people will try to find gain in your loss. Ian is going to have to learn to do what he knows is right despite what people around him say. I won't argue with him because he knew what he was told to do and chose to not do it. And I don't care what the circumstances were. Knowing Ian, he will be still talking about this when he is thirty. In the end, he helped me empty the dish washer and put groceries away and he got his reward. I hope he will let this go because now I have to throw on some shorts and drive them to school. That is when I realize that Riley left without taking his pill.
I don't even know what is up or down anymore. I fill a to-go cup with coffee for myself and race to the car. My dreads are looking like sideshow Bob and my make up is smeared. As the boys fight over whether or not Seth can wear a hat that Ian never wears, I leave to sit in the car. I can see Ian race out the front door to claim shot gun. I hope that Seth will choose to not make a big deal out of this.
My phone is going off and as I pull out, I see that Riley is begging for his own reward. Apparently he had clean clothes in his bag and was able to change his shirt on the bus. He wants me to bring take out to school. Seth is being quiet in the back, not argueing with Ian over the front seat and showing the kind of maturity that I see more often lately...but not often enough to make life simple. I hand him the phone so he can text Riley and tell him NO. I could explain my busy day a hundred times to Riley and he will only get louder and begin to text in all capital letters.
I am worried about finals. Ian tells me that he can't understand half the formulas he needs to pass today and he won't pass without a good grade on that exam. Seth says that he is having trouble in math too. Because I understand completely having failed my math regents three times, I pass him my coffee and let him finish it off.
The next ten minutes were spent rushing around the school, combing the cafeteria and finally having Riley paged.
Riley has his meds, Seth has his coffee, Ian is wearing a clean shirt and the other kids made my day and got on the bus with a minimum of threats of retribution.
And now I'm seeing bats.
It's time to brew a fresh pot of coffee and try to remember how to breathe.