“Why?” is the first question I get when people ask me about Max going into the hospital. But then they really don’t want to hear the answer.
We had noticed for years that there was something not quite right. Max was a wonderful, happy-go-lucky 3 and 4 year old. He loved meeting people especially young women. When I took him to the playground he would see a young mom, pick a flower and run to hand it to her. He would pretty much know everything about her before he moved on.
He was very good one on one but had a very difficult time with groups. He would hang on the edge and do his own thing instead of joining in. When he started kindergarten things were devastating for him. Not only was he in a classroom of 26 students but the bright neon lights and the clutter had a major effect on him. There was too much sensory input and he began acting up considerably. He had a wonderful teacher that worked with him, the special ed teacher, occupational therapist, and us to determine what he needed to survive. She put together a program of breaks, occupational therapy, and rewards to get him through the day which became his individualized education program (IEP). About that time he was diagnosed not only with sensory issues but also adhd and pdd/nos. He started receiving medication for these conditions. As a result of all of this he had a wonderful kindergarten year.
Things started going really bad in first grade. First month was fine but it then went down hill from there. The school refused to follow the IEP put in place the previous year. They insisted he was older now and things had changed. “Trust us,” they said, “we have been trained.”
And they kept saying this even though Max got worse and worse. When the school tried to physically prevent him from doing things such as continuing one subject when the class would move on to another he would become aggressive. To stop this he would be restrained by 4 teachers and was suspended several times. Max was 6 years old and small for his age and my wife who is small as well has always managed to calm him without extra help.
Max’s pediatrician suggested we take him to be evaluated for a med change. Though he was very experienced with helping kids with adhd and sensory issues the doctor believed that Max may have other issues. He pointed us to a specific hospital and told us to bring our son to the emergency room because the psychiatric department was connected to it and they would be able to do an evaluation right there. The idea was to get passed the 6 months to a year waiting period it now takes to schedule psych exams.
The day after Christmas when Max was 6 we took him to the hospital. It was a Thursday. As with all emergency rooms we had to wait, and wait, and wait. We were finally seen by a psychiatrist who was more interested in letting us know what bad parents we were than checking Max out.
A short time after she left a nurse came in and started talking to us about our situation. He told us that it was going to take a lot longer than a couple of hours to diagnose Max’s condition. He suggested we admit him to the hospital’s psych wing for a week to determine what was going on. He made the place sound very wonderful. Great staff, a lot of kids Max’s age, schooling and playtime every day while the doctors examined him.
When would he need to go in? We were informed it would have to be right now, there was a bed available and he could go right up but if we waited another child would get the bed. This was not something we had planned for, when Max was initially diagnosed we had taken him to Boston over a three day period and he always came home at night.
When we both did a gut check my wife and I were very bothered by this. While the nurse went off to see if we were covered by our insurance we started making our own phone calls. We called Max’s pediatrician, who was out of the country at the time, he didn’t like the idea but thought it was the best thing for him.
We called a family member who is a social worker. She hated the idea but thought it was the best thing for Max. We talked to a child advocate friend of ours who was also against the idea but again, she thought it was best for Max. And we even called my wife’s therapist who had worked with Max a little bit and she had the same reaction.
As a result we agreed that it was best. Then the nurse came back to let us know we were covered by our insurance. Okay, he’s going. I asked for directions to the ward which it turns out is in another town. Nope that’s not the way it works, to get into the ward he would have be taken by ambulance.
Max and his mother were loaded up in the ambulance, and with me in my car behind, off we went. It was dark and I almost lost them a couple of times, or it may have been because of all the water on my face at the time.
When we got there, we had to go through two sets of locked doors. On one door was taped a sign that read “watch out for elopements”. I thought that was curious but found out several days later that an “elopement’ is when one of the children escapes from the ward.
We were given a tour and saw only one other child, besides Max, a teenager. Where were the others? The children had checked out for the day to be with their parents since it was the day after Christmas, they would be back later on we were told.
Max loved the idea of an overnight, he had never been away from home and we left after signing all the papers and promising we would see him on Friday.
We are only supposed to be able to see Max between 6 pm and 8 pm. When we asked about this on Friday night they told us they could be flexible. Well I sure hope so; there were still no kids there. Max tells us that he plays with the one teenager. We stayed the two hours; we read to him and had dinner with him. This became the routine for the rest of the time he was there.
What also became part of the routine were the hysterics when we got there, begging to come home while we were there, and hysterics when we left. While we were at home we would get constant phone calls from Max begging us to come see him. There never were any kids his age the whole time he was there but more and more teenagers showed up. There was violence and a lot of foul mouths. It was not a safe place for him.
On Monday I told them I wanted him out. I did not like what was happening with him there. And as far as I could see there wasn’t much evaluation going on, no medication changes, nothing! The doctors tried to reassure me they were working hard to help him and this was the best way to do it. No, he’s coming home!!! They then showed me a line in the contract that says that once a request like mine is made the doctors can take three days to decide whether they will let him come home.
And Max would still have hysterics as he watched us through the window go home at night. And the staff kept telling us this was normal. And his Mom and I knew in our hearts that this wasn’t right and we wanted him out.
On Thursday they informed us we could take him home on Friday. We got him! Their diagnosis? Same as what we had before. Medications? Made some changes. Recommendations? None!
And the results? This happy-go-lucky kid was now quiet, moody, and had very high separation anxiety. He didn’t like to play. His medications still weren’t right either. Since then he has never picked a flower for a girl in the playground.
To add insult to injury it turns out our insurance didn’t cover the hospitalization and a month later the bills started coming in.
Today, a year and a half later, Max is 8. If you ask him what the best memory he has of the last 8 years it is when they let him turn on the juke box in that hospital. What is his worst memory? Being there!!
