20 Jan 2009
He was born six weeks early. He wasn't breathing, the cord wrapped around his neck. I remember saying, " well at least he isn't crying". I didn't realize in my haze that it was a bad thing, and the doctor seemed shocked and said, "this isn't good.". Then suddenly he wailed, I hadn't even had time to feel dread and fear.
I didn't get to hold him though, they whisked him off to another room and took me to mine. The next thing I remember is them coming into my room and telling us he had a seizure and was being taken to a children's hospital. They brought him to my bed in an incubator and let me look at him before he was rushed away again.
He stayed in NICU for two weeks only. He had some trouble eating at first and had an ng tube. He was on oxygen and under the biliruben lights for his jaundice. And then he was coming home.
I was, as his doctor made me feel, the typical stupid new mother, worried about everything and wrong about everything.
I remember telling his doctor, "I don't think he really looks at us ever". The doctor saw nothing wrong though. I told him that though he was a cheerful baby and rarely cried, he didn't mimic and respond the way I'd expected him to. He was just as happy with me as he was with a complete stranger.
All of his physical milestones were lagging far behind. But he started saying words around age one.
He had a normal vocabulary for a child his age, until he was two years old.
Daddy used to take him for a lot of walks, and everyone always loved him, they all smiled and said hello. Then one day around age two, they went for a walk, no one replied when he said hello, it seemed that everyone was in a big hurry that day and didn't have time for him.
When daddy and son returned from their walk, there was something different, he was quiet.
We thought it would pass in a few hours, and then we thought, in a few days, but it didn't.
For nearly a year, our boy said nothing. If he wanted a drink, he would whiz the cup at you, if you talked to him he said nothing in return. The doctor pretty much thought we were crazy and at that point, I started feeling like maybe I was.
Nearly a year later, out of the blue, he started talking again. There were issues with certain letters and words, but it was as if he had never stopped talking that year. I remember asking him once why he hadn't talked. He replied that he was angry because nobody said hi on his walk. That floored us, we couldn't even imagine a child that age holding a year long grudge.
Now he is almost 3 years old, just a month or two shy of it. He still isn't walking unassisted. Around the house he will push the reclining chair from room to room so that he has something to hold onto while he walks. Yes, the reclining chair! Again the doctor acts like we are worrying for nothing, so we decide we must be.
Then one day we have a friend over for dinner. While we are in the kitchen making dinner, our son was making plans. The next thing we hear is the phone ringing. Daddy answers it and it's the man across the street, he is asking if we know where our son is. "Of course we do" answers daddy and the man says, " but do you see him right now?". We look around and there is no son. The man tells daddy, he is down the street with a police man and some old guy.
Daddy races down the street, but son doesn't want to return with him, he wants to go for a walk with the nice old man who found him.
Eventually the police hand our son over to us. We are in shock because the boy who wouldn't walk unassisted has unlocked three locks and gone down three flights of stairs and crossed the main street in town several times. On top of that, he had taken twenty dollars with him. He was going shopping!
Shortly after that we bought our first home. Our son was now between three and four. Things seem pretty normal for a little while. Other then the constant strep throat and coughs he was fine, we thought.
Then one day his half brother was there for a visit. He spent every other weekend with us.
I walked into the living room and saw my son standing at the bottom of the steps near the wall. He looked like he was listening and looked very concerned. I asked him what was wrong. He replied that his brother was stuck in there. I said, "stuck in where honey? ". "In the wall mommy", he replied. I told him no he isn't he is right upstairs. "No mommy, I can hear him in there calling for help". Then he told me he needed a hammer to break him out of there.
I called for daddy and he got my step-son and brought him into the room. "See, here is your brother, he's fine". Our son looks at him and puts his ear up to the wall. "No he isn't, I can hear him in there and we have to get him out now!" .
I don't remember how we distracted him from this notion at that time, but for the moment we did. It didn't last long though and we spent many months repeating the same scene.
When we told the doctor, he told us your son is gifted with a great imagination, don't worry about it.But we were, we knew something wasn't right.
And then there were the days he would come running down the steps screaming that his floor was on fire and I'd race up only to find nothing wrong. Other days he would race down and tell me it was covered with water, again I run up thinking he must be right, only to find the floor bone dry.
So I thought maybe the sun warming the floor in areas made him think this, and I explained that to him over and over. But he insisted he didn't just see the water and fire, he felt it too.
Another day he rushed down in a panic, there was a man with long hair looking in his bedroom window.
I nearly freaked out, I thought someone was breaking in. I raced up the steps, but there was nothing there. I asked him to show me where the man was and he pointed to the upper panes of the window. His room was on the second floor, and there was no porch roof there, it was not possible that there had been a man there, but there was no convincing him otherwise.
So the days pass, the doctor dismisses every concern and we feel like idiots, what is wrong with us that we can't appreciate his great imagination.
We enroll him in head start because he is still having issues with certain words and letters and they say they can help. He is excited to go and I am excited too, finally some down time. The constant activity and imagination are a little tiring!
His first day home, he is angry and he's going to stuff someone in the garbage. He tells us he kissed a girl and they sent him to the principals office and he got in big trouble and he's so mad!
We find out that yes, he did kiss a little girl, like little boys do, but he didn't get sent to the principals office and wasn't in trouble. And so the days go, there is always someone to be furious with and always some drama that didn't really occur. He really did not stomp that boy and shove him in the can.
He is now five years old, and we have another son. Our second son is born premature by three and a half months.He spends three months in nicu and spends seven years fighting for his life. He is delayed and has cerebral palsy. It is sheer chaos and pain and our older son doesn't know how to deal.
It is around this time that we get a new doctor. He is also one of the doctors on our new son's team and we have grown to trust him, so we take our first born to his office.
He tells us that our son has adhd and puts him on Ritalin. The first day on the med and our son sits down and completes a puzzle! Something he had never been able to do before. We are relieved and thrilled, we know what's wrong and we can help him!
But it doesn't last long, all the crazy stories are still here and the Ritalin is causing him to lose so much weight.
Now we battle with one child fighting for his very life on a daily basis and one child hyperactive and with an imagination that frightens us.
It seems like the next few years pass in a week, yet last a lifetime. I'm not sure where the time went. He is now eight years old. We are getting used to his grand imagination and know that most stories are just that, stories, right? After all, even our new beloved doctor doesn't think anything is seriously wrong.
The doctor changes his medicine because he is getting to thin. He is now on adderall and it seems to be working well. He stops losing weight and the hyperactivity is in control, for the most part.
One day he returns from school and tells me this grand tale, his best friend was going to kill him, so he choked him on the playground.
I know immediately that something is very different this time. I call his teacher and she confirms that yes it did happen. I am furious, why on earth didn't you call me!? She tells me that they handled it and didn't see the need.
But the need is there and it is a desperate situation. Our son is acting paranoid and he is positive his best friend would have murdered him if he had not choked him first.
We call the doctor and he says stop the adderall! We do and the situation escalates. Our beautiful eight year old now wants to kill himself and is so paranoid that we keep him home from school a week. After a week and some visits with a psychiatrist they recommend taking him to Hershey Medical, so he can be put in a psych ward for evaluation.
He spends nearly two months there. He is paranoid and hallucinating, they try several meds before settling on zyprexa, and they tell us, he is bi-polar/schizo affective and aspergers.
We are devastated and yet happy that we have answers, finally.
After two months he comes home. We have a case worker from mental health/metal retardation agency. She started with us right before he was admitted to the hospital. She is our life line.
One day she is visiting us at home and our son runs downstairs, water is pouring in his room and falling on on his game controller and electrocuting him. Even now, we race upstairs, thinking it must be true, only to find it is not and there is no convincing him otherwise.
There is no place at the regular school for him at this point so he is sent to Anthracite behavioral school. There he is supported by teachers and doctors who know how to deal with these things.
He comes home one day and tells me stories of how the teacher hurt another child. She had the child in tears and was hitting him. How do I believe him, how do I not believe him? I call the school and find out that this student was being tickled by the teacher and laughing. My son had totally misinterpreted the scene. They make big charts for him with faces and labels on it so they can teach him what facial expressions mean. He has a hard time grasping it and it takes years of work.
Time passes, it never really changes, it just repeats the same scenes over and over.
At the same time I am dealing with our second son. Therapy and illness, charts, feeding tubes, seizures and life/death situations on a daily basis.
Our first son is amazing with him though. He is so wise and so filled with love and compassion, not just for his little brother, but for all. I remember the year after he was born and we are sitting down to thanksgiving dinner. Just daddy, mommy, and son; little brother is in the hospital, again. We decide we will each say what we are thankful for and it's his turn. His face is bright, his smile stretched ear to ear and he announces, " I am thankful for my little brother, he's going to teach the world what it means to be special". He is so wise and wonderful!
Wise and wonderful, loving, sweet, compassionate, kind, that is my son. He is an amazing child, he touches people where ever he goes.Everyone loves him and I guess because of this, we kind of just figure that his issues will pass and life will be normal and good at some point.
I am jumping around here some as things come back to me and I can't recall the correct time frame, I'm sure.
One thing that stands out in my mind is his recall, he could be nine years old, but recall perfectly something that happened when he was two years old. He was tested during his long hospital stay and found to be far above average for his age, his math skills were near ninth grade level!
I remember too the strange habits he picked up from video games. He loved sonic the hedge hog and adopted his way of running. He would pump up his little arms and kick his legs back, throw his arms straight back and run. He thought it made him go faster and today at age 17, sometimes, he still thinks that and we catch him running that way again.
Another thing I remember his is loose association. He came home from a walk one day excited that he had seen a cat that looked just like ours, the only thing was that our cat was black, and the one he saw was white. I told him that they were both cats but complete opposites because of the colors, he couldn't grasp that, they were both cats, so they looked identical! He has trouble too remember people's faces and names. It takes him years to associate a name with a face, though he is getting better at that as he ages.
And as he ages, the monsters start to make an appearance. It's hard for me to even remember when they started visiting us at this point, so many episodes, so much time has passed.
They were infrequent at first. They were mild. They could be controlled. He would get in a rage but it was more of a silent rage, filled with anger and loathing, seething, seeping out through the cracks. But a gentle word, the reminder of who he was and that he didn't want to be the monster, would usually subdue it. I was doing everything right they told me, but it felt all wrong.
How many years has this been going on? When did that monster first show it's fangs and why can't I remember that?
I remember once he came into the house looking scared to death. I asked what was wrong. He told me that you couldn't go out after six pm. I said why not? He said because the teens were out there and they had backpacks. In the backpacks are knives and he knows they want to hurt him.
Teens would not have backpacks at that hour for any other reason. He had to hide behind cars on his walk home from his friends.
Then he peers out the window and sees an old man, hurry! lock the doors! He's coming here to kill me!
My heart breaks, I die a little more inside every time he comes home with one of these stories, every time he walks down from his room sure that he has heard or seen something.
It is so scary, these things aren't one dimensional, they encompass all of his senses. He feels them, smells them, tastes them, hears them, they are his world. How do you not go mad in a world like that? How do you contain the monster in that world? How do you not let out your rage and fear, how do you not let it consume you?
I think he was thirteen, maybe younger that first time. He was so mad at me and I don't even know why. I guess I didn't let him do something he wanted to do. So he plotted. He was going to make a mechanical dog and it was going to be programmed to kill me. If that didn't work he would get his friends to help him kill me.
read part two-