I really don't know what to title this blog but it doesn't really matter. Right now the only thing I know is that Sam has to fail to get help.
Let me back up. During the 11/12 school year he was restrained and put in a 10x10 closet with someone probably putting their foot at the bottom of the door while he was trying to get out of his prison cell. The Behavior Plan was written up so that he was secluded in a larger room with the guy who restrained him for the rest of the day. I went into the school and said, "No, you can't do that." Lucky for me we had a behavior specialist who listened and tried to do the best that she could. They fired her at the end of the school year. Probably because she wanted to help the parents.
During the 12/13 school year Sam was restrained and put in that 10x10 closet until he wanted to harm himself. I am not joking when I say that I had visions of him taking off his shoelaces and hanging himself on the door. It has happened in this country more than once. I had Sam on suicide watch for months and he still can't sleep in his own room. I can stand on the mountain tops and scream that prisoners are treated better than our children and nobody will hear me. We had three formal investigations of abuse and nothing happened. I have a lawyer and she can't help. I have advocates that I have completely given up on. I have therapists that I am shutting the door on. I am finished. I am fed up. (This does not include the Music and Art Therapists. These are the people, and the only ones I have met this far that get it)
So what got me all in a tizzy? It was my conversation with the social worker from our Autism Unit. Again, having to back up. The leading researcher in our area is very connected in the country. She also knows her stuff. I met her at a Autism Speaks Walkathon Kickoff Dinner where Sam spoke about his photography and Autism. He was eleven years old at the time and I wrote him this speech that he read in front of everybody. The speech read, "I am Sam. My Mom tells me I have Autism. My Mom tells me that Autism is not who I am. I am Sam. I am a good person and I love to fish." He was so sticking cute when he read that speech. At the end of this speech, the doctor came up to Sam and asked if he had any pictures of fish. The doctor is petite and almost saw Sam eye to eye. I had never heard anyone talk to Sam the way she did that day. I framed two of his fish photos took it to the Autism Unit and gave them to her. They are hanging in her office.
This wonderful doctor had contacted me and asked if they could buy some of Sam's prints to put in their newly decorated hallway in the hospital. I was thrilled. I saw her at an Autism Treatment Conference and she asked me how things were going and I just sat and cried. She told me to make an appointment and I did.
On the day of the appointment a few weeks back I didn't take Sam and just made it a consult visit. I thought she was going to set Sam up with behavioral specialists who would come into the school but that isn't what she suggested. She said she wanted to make a referral for inpatient and the Kennedy Krieger Institute in Baltimore ,Maryland. I trust this woman completely and her and her social worker are the only two people I can trust. They are going to tell me how it is and I appreciate that. If I say but what about? They will say it won't happen because. The because is because the system is set up all wrong for our kids.
The doctor explained that our dual diagnosed kids are the ones that fall through the cracks. I have already figured this out. She says that in the Autism world the professionals talk too little (Picture Schedules and what not) and in the mental health world they talk too much. I have figured this out because when I go in there and make suggestions on how to combine the two they just look at me like I am from Mars.
I thought that the Kennedy Krieger Institute would be the answer to our prayers. It isn't. They would of taken him off his meds and start over. It is one of the leading institutes in this wonderful nation of ours that harm our kids and I felt like my prayers had been answered.
Today I found out that Sam has to fail at the next placement. New York State medicaid will not pay for an out of state placement unless we have exhausted the most restrictive environment in NY State. I also found out that I have to watch him fail. So if history repeats itself and they restrain him and put him in seclusion and he wants to harm himself, I have to pick him up at the hospital after they do a mental hygiene arrest. I don't know how many times I have to watch this happen but all I can do is sit back and watch things fall apart. If I want him to go to Kennedy Krieger I have to watch him fail.
Believe you me, I will be in their face if they hurt my child. There will be no prone restraints and they will call me and email by the end of the day. If Sam starts crying every night that he doesn't want to go to school and history repeats himself where he says that he wants to harm himself, I told the Autism Unit that I will be on the phone with them. After things fall apart the Autism Unit will step in and get him into Kennedy Krieger.
My job right now is to smile and tell Sam how wonderful the school will be even though a child was sent to Urgent Care after being put in a choke hold. I talked about it at the meeting and they said, "Well, that was in the group home." They are trained by the same people! I was trained in restraints and seclusions when I worked there and they are all trained in one room. The point that it was in the group home is mute and I tried to call him on it. The school representative at the meeting just looked away.
The only thing I am concentrating on is Sam's photography. I don't have any more money to send him to Hochstein for Music and Art Therapy. I am tapped out. Sam will be in day treatment and they will take over everything so all the outside services who prescribed his meds will be gone. I will be a the mercy of these people. There is also a chance that Sam will be successful. Only time will tell.
All I can do is smile and send Sam on a bus and tell him to have a nice day.
I am petrified.
Definition of Mental
1. a: of, relating to, or being intellectual as contrasted with overt physical activity.
2. a: of, relating to, or affected by a psychiatric disorder <mental patient>.
b: mentally disordered, mad, crazy.
I choose being an intellectual as my definition of being mental.
*The photo that I use for my background was taken by Sam. You can find more of Sam's work at https://www.facebook.com/SnapshotsBySamMaloney
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