I Was Going To Make A Facebook Post But...

I was going to make a post but I decided against it. My daughter always says that her friends are interested in Sam's page but my posts are too long.  I did a presentation last week and I was telling my daughter about how I make speeches without notes and she says yeah, you don't need notes.  I think her point is that I never run out of things to say.

So I am blogging my post because I have too much on my mind.
Today Sam worked with one his workers for an hour at a playground and it isn't respite for me.  I have to stay.  This agency has a rule that the parent must be present always.  I emphasize the word always.  I couldn't even go around the corner to the store to get a soda.  I am not going to lie.  Sitting for an hour in my car is no fun.  So I was reading this book "The Whole Brain Child" that was recommended by Sam's Music Therapist.  It was talking about how you should empathize with your child if they have had a negative experience.  It also said that you should talk about it with your child.  I wanted to throw that book out the window.  First of all that book was written for the parent who are raising neurotypical kids.   They are talking about if they were in a car accident or some one time event. What about being dragged to a 10x10 closet every day.  I do talk about the restraints and seclusions with my child.  I never want him to think that these awful things that have happened to him is his fault.  I am told by the experts that I am part of the problem because I do talk about the restraints with my child.  Duh!  He already knows about them.  Am I just supposed to just sit and do nothing because somebody else thinks it isn't a big deal or it isn't healthy for Sam.  These professionals thave the "They get over it" mentality.  No they don't get over it. The parents don't get over it either.    I didn't throw the book out the window because it is a library book and I don't have the money to pay for it. If it was my own book I would of gotten out of my car and thrown it away while spitting on it.  No offense to Sam's Music Therapist.  I probably should finish the book and have a intellectual discussion about it but I am not in the mood. 

My whole point is this...the book wasn't written for a parent who has a child with Autism.  The book wasn't written for misunderstood children who have a dual diagnosis of Autism and a Mental Health diagnosis.  The book wasn't written on what to do when the parent is seen as part of the problem.  The book doesn't have any of the answers that I am searching for.

On the way home from working with this particular worker Sam said, "Yeah, I was kinda sad."

"Sam, why were you sad?"

"I forget."

"No, you didn't forget.  You can tell me anything."

"Because sometimes I have visions of people hurting me.  Like in my old school where the guy threw me and I almost hit the wall. I can't sleep at night.  I don't like going to sleep at night."

As Sam's parent I am not backing down and telling this new school that they can lay their hands on him.  Once they lay their hands on Sam, Sam is going to go into fight or flight.   

I feel sick.

So I keep doing what I am doing.  I am teaching Sam photography and we are starting really cool projects to show the world that Sam CAN.  To heck with the educational system.  If I get him to a place where he is safe and happy, we can do the fun stuff after school.  

People ask me, "So what makes you happy?"  It is simple what makes me happy.  Ask Sam to take your photo.  Tell Sam, "Wow, your photography is awesome."  It also makes me happy when someone asks me to donate one of Sam's prints.  This is where I do get a little snobish, or maybe not (not really sure).  I like it when people specifically ask for a print for their specific cause.  I am so unbelievably busy that I like it even more when they remind me when I have forgotten to get them the print.  I had one of my favorite ladies from our YMCA call me twice for the print.  I don't need a thank you.  I just want to know that you really want the print.  I had one experiences where I have donated and the woman didn't even look like she cared.  I never want to feel that way again.  It felt lonely.  I work too hard to feel lonely. 

As a side note, there are two organizations that never have to ask for a donation because they have become a part of who I am.  They know who they are.  

It also makes me happy when I get to hang out with Sam.  I don't care if he has the camera in his hands. He is a really cool kid.

So tonight I was thinking about my post and how I should have my tag line be "Thanks for sharing and caring" but that is corny.  I do appreciate Sam's fans sharing his facebook page.  I also appreciate their generosity and their well wishes to communicate to us how much they care about my son.  I am a fortunate Mom.  

Now all I have to do is to keep him safe and happy from 8am-2pm weekdays.

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

"He Has To Fail To Get Help"

This is a video of my son Sam's photography

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