What To Do During a Meltdown.

I am not feeling very positive today and I wanted to name this post What Not To Do During A Meltdown but I will be kind and do my best to give helpful information as it pertains to my specific child.

1.  If you see a child hurting, a parent (or guardian) is hurting right beside them.  As a parent I don't know how to distance myself from the pain I see on my child's face.  I don't know if I ever will.  I always see pain when Sam is melting down.

2.  If you are not raising a child on the spectrum you do not know how I feel.  If you feel compelled to say something it is helpful to say, "I am sorry, I do not know what you are going through."  I can't explain how helpful this is.  There is nothing worse than talking about my child and a 20 year old says, "Yeah, I can relate." If you work with our children and you don't have a child on the spectrum please say, "I wish I could relate, but I can't."  You can even say, "I am sorry, I wish I had more understanding of what you are going through."

My favorite posts from one of Sam's fans said this.  I am paraphrasing, "I would yell and say walk a mile in my shoes and then throw my shoes at them."  Ha!  I find that hysterical.  I am sure the person throwing the shoes didn't think it was funny.  After the fact, I think it is a creative response.

3.  If anyone feels compelled to say something derogatory to a parent during a meltdown I can almost 100% guarantee that the parent will not be kind to that person.  We have been through so much and the child?  I can't imagine.  I am not diagnosed with Autism.  I do have an understanding of growing up with a Mental Illness. Growing up with an undiagnosed Mental Illness was painful for me.  I get a little bit of it.

I keep on writing what not to do because we live in a negative society.  I will try to do better.

4.  If a person is in a managerial position and that person has to over see the meltdown, please either sit on the floor or sit in a chair.  If you can't find a chair, find someone to find you a chair.  Standing over the person having the meltdown doesn't help even if you are a few feet a way.  It would be my perfect world if a person sat down and placed their hands in their lap in a non threatening manner.  A child with Autism might not understand it but the parent does.  Standing with your hands behind your back or across your chest doesn't help at all.

5.  If anyone feels compelled to help, be prepared to sit down next to the person and be prepared to not say a word.  Just sitting next to a person or sitting off center helps.  Do not speak.  Please say nothing.  If a person wants to help and they just don't have 20 minutes to spare to sit and say nothing, walk away.
It is very helpful when people are not helpful.

6.  If Sam is having a meltdown in a crowded room and he perceives that a group of people are giving him a hard time, I pull up a chair to block his vision.  I remove the stimulus.

7.  I do my best to never talk during a meltdown.  I sit and I wait.  Talking during a meltdown doesn't help.  Trying to reason doesn't help. Yelling doesn't help.

8.  Never say, "My sister's son has Autism so I understand."  No you don't.  Never say, "My neighbor has Autism so I understand."  No you don't.  The only time I don't take offense is when someone says, "My neighbor's son has Autism and I see how difficult times can be for her/him."  You can always say that you can see the pain and you feel bad for that pain.  Never, ever say that you understand if you are not raising a child with Autism.  A person just might get a pair of shoes thrown at them.  It is a trigger for us parents.  Trust me.

9.  If you are driving in a car and a child is having a meltdown, pull over and sit and wait.  I do this all the time.  I have had cops pull over and ask if I needed help.  I always say, "nope, I just don't want to get in an accident"  If you have the parent in the car with you, sit and be quiet.

10.  The meltdown isn't bad parenting.  I would love to have more understanding.

11.  Never say walking past a meltdown, "Been there, done that!"  That is not helpful.

I can't think of anything else right now.  Please feel free to add your own list.  There might be something that I am forgetting.

Debra Pierce Bellare, Sam's Mom.

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

Being BiPolar

How do you spell BiPolar?  Or is it just Bipolar?  It doesn't really matter how you spell it or what part you capitalize.  Well, maybe to those that have to be grammatically correct and I am not one of those people.

I don't want anyone to feel sorry for me, but I do want people to understand how difficult it is.  Pick yourself up by the bootstraps?  Doesn't work.  The numbness sets in, the inability to take a shower kicks in and the unbelievable sadness sets in.  I take a shower, I put one foot in front of the other and I take care of Sam.  I do it while I hurt.

I love my two children with everything I have.  One has left the nest and we all know it is better for all of us because of Autism.  It is killing me.  It feels like a knife in my heart.  I get it but it doesn't stop the tears.  Autism isn't easy for any of us but we live with it and I, at the helm of the house, have to do what I can with it.  

What is it now?  1 out of 50 families live with Autism?  That is one out of 50 families who are set up to have family walk away, loss of friends, loss of jobs, or some of us with BiPolar, the loss of our kids.  I have almost lost my kids three times in my life and I am worried sick that someone, basically Sam's Dad, will try again.  I am even running the risk by talking about it and well, I will cross that bridge when I get the court papers.  I have had CPS at my house around 10 times in the last year.  I have to tell my son that when he confides in someone that maybe the bathtub isn't as clean as he would like it that he has to keep his mouth shut.  (My bathtub is so stained and I can't get the stains out)

Sam has been out of school for about 34 school weeks.  I need to understand why people can't see his talents and what he is capable of.  I don't understand why my Autism Community hasn't rallied behind my son.  Sam has almost 4,000 people on his facebook page: Snapshots by Sam Maloney and the people in the box are more supportive than the ones who I actually want to support Sam.  

It is lonely sitting in my house alone while I hear the cold whip of the wind.  I know I need to get to the gym and I know I need to eat better because of having past cancer.  I will try better tomorrow.  

I know who are the people who care about me outside of my computer.  It is very difficult to be around someone who is sad.  I wouldn't want to be around me at the moment.  I have plans for Sam and myself around getting out and being social and for that I am grateful.  The not so healthy part is that I do everything for Sam.  There is nothing that I do for me.  What I want to do cost money and I don't have it.  Knitting circles cost money and going to the movie cost money.  Even to read a book from the library because I have to pay that fine because of lost books because of poor organizational skills.

The problem at the moment is that I don't feel safe.  I don't feel safe from Sam's Dad, our workers and everyone we come in contact with professionally.  I have to keep my mouth shut and for us that live with a mental health challenge, it is not healthy for us.  We all live in fear that our children will be taken away from us if we speak up that we don't feel so hot.   It doesn't matter what anyone else says because we know because we have lived it.

What would I say to someone who thought, well you better take her kids?  I would say that they are only making matters worse.  I love my son with everything that I have.  I work endless hours making sure he has what he needs.  I make phone calls after phone calls if I don't have something and I work tirelessly to make sure he gets it.  Nobody, and I mean nobody can take care of him the way I do, even when I am sad and I hurt.  

Please don't call CPS if you think that I should be investigated.  I say this to any of my professionals who read this or fall upon it.  The only thing our worker did was hurt me.  People can tell me until they are blue in the face that it is their job as a mandated reporter.  People who are in my home know how well I take care of my children and if there is a problem I take care of it.  The worker was cruel and I never want to see her again and when I do see her I will say hello and walk away.  Apparently she didn't really want to work with us.

Now I wait for the upswing.  It is BiPolar, or is it Bipolar, after all.

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

I LOVE YOU, I Hate You

You would think that after twenty years of psychotherapy that I would get how my behavior inpacts what happens to me.  I have't "gotten it" yet.  I am still trying.

There is such a thing as "I love you, I hate you syndrome".  It is real and I know it is.  After a series of events, where I "perceive" whatever is happening at the time, I get angry and I feel the pressure building in side of me.  It isn't after one event or two or even three.  It is around the fourth or fifth event where I can't control my inner turmoil and I explode.

This is what I found from a website called "Ask a Biploar".

Sounds familiar.  I watch my son with these same issues of perceiving the world differently.

So how do I correct this?  I don't know the answer.  I attend my therapy appointments and it isn't enough.  I can enroll in Diabelicctal Behavior Therapy and do my best to have things fall off like water beads from a oiled iron skillet. That is a real skill that is taught in DBT.

I have a difficult time writing this because it feels like I am having a downright bitch fest.  "You did this to me!"  Well, no, I reacted to your way of living because I didn't like how I felt at that moment.  There is a huge difference from reacting to your environment instead of saying, "you made me angry."  Becoming angry was my choice.

"I love you, I hate you" is real for me.  It doesn't have to be a boy friend, girlfirend relationship.  It can be with potential friends.  I am so screwed up that I don't know how to be friends with someone.  The fact that I can write that I don't know how to be friends with someone hurts me.  Twenty years of psychotherapy and I feel I haven't learned a thing.  I do know that I am a better person than I was.  BiPolar and it's ugliness made a mess out of my life and I am still picking up the pieces.

I worry about what I write but I still write.  It is important to me to share what this life is like with BiPolar.  Not enough material is written about this devestating illness.  There is not enough mental health services for us and there is not enough understanding.  I could go back and apologize to those that I have violently pushed out of my life with my words but I won't do that.  I should of walked away at the first sign of turmoil. I had the signs and I still pushed forward.

I can't fix things after I explode and I have to live with my reactions and that should be enough to teach me a lesson.  I was talking to a friend, a real one that puts up with me, and she said that when she listens to me she sees a hamster going round and round.  Yeah, I can see that.  I make the same mistakes over and over.  Things calm down in my life and when they reve up I again make the same mistakes over and over.  Hell has no furry for those that come across my path when life feels unbearable.

One of the stories that I would like to share is my love afair with Johnathon.  I met Johnathon when I was 20 years old.  I will never forget it.  I was with a "potential" friend in a bar when I first saw him.  He walked through a cloud of smoke and he was just there standing and it was love at first site.  It wasn't a healthy relationship and I still kept going.  What hurts is that I was so messed up that I used my "potential" friend to get to him.  I didn't get to keep anyone in that group of folks.  It is difficult to write how I wasn't able to cope with a group dynamic.  During our last phone call I couldn't speak.  No words would come out of my mouth.  For years we would go on and off again becasue I couldn't communicate my needs.  He hung up and changed his phone number.  It was that day that I called a therapist and it was a start to finding out that I was BiPolar.  I have him to thank.

"The phrase “I hate you, don’t leave me” was made popular by a book on the subject of something called Borderline Personality Disorder (BPD), although those with Bipolar Disorder (BP) can also show this pattern. Essentially it is what it says… and we’ll add to more of that here. The world of someone with BPD or BP if full of conflict and trying to handle a world not necessarily perceived the same as someone without these issues.

Out of State Care

Driving 348 miles, I arrived at my destination just under 6 hours. Pulling to the curb I asked a valet attendant where the nearest parking garage was located and he most likely saw my discomfort and fear and parked the car for me.  Thinking, "well this might not be so bad." I walked into the building where I was to meet possible future caregivers of my child.

Thinking back on this experience I realize that I have a responsibility to not slam these caregivers but to also share our story.  It is a combination that can anger some and evoke responses from many.  Everybody has their story.  Our story begins the day we are born and it ends the day that we die.  Of course it all depends on what story I want to tell whether it is domestic violence, mental health difficulties or Autism and the list goes on and on. 

Today my story is the continual saga of Sam's experience with school. 

Walking onto the unit I noticed that the patients were non verbal. To many this environment would imply that the population would be low functioning, kids of all ages, who are diagnosed with Autism. I am not a fan of the two word phrase, low functioning.  I am not a fan of the two word phrase, high functioning either. I don't believe that it is a fair use of language.  But our use of this particular language continues and it will fairly describe the feelings that this environment evoked in me.  

I toured the facility and I continued to ask myself, "Why am I here?" and fully knowing the answer, "I am trying to find some people to listen to us and to hear my cry, "Can you please help me by writing some professional reports to adequately describe my child so people will listen."  My focus was to find support so the school environment would give my child an adequate education.

I had received a call from intake asking me if I was able to make the 6 hour drive and it just so happened that she called a few hours after a disturbing phone call.  The speech pathologist had called a few hours before explaining to me that she is recommending that services be stopped due to non compliance from my child.  Tears streaming down my face I volunteered to the intake coordinator that yes, I was a mess.  I meant that I was a mess at that particular hour of day.  I am not a mess all the way around, 24 hours a day. Again, it was my misuse of language.  You would think I would learn.  One more lesson that my use of language which makes it apparently clear to me if I, a non autistic adult, missuses language, that my child, diagnosed with severe expressive, receptive and pragmatic language, does indeed need the services. 

They asked me, "Can you see your son here?" and I thought, "No." It had nothing to do with the clientele.  It had to do with my conversation with the caregivers.  I know they are educated and I know they think that they are correct in their learning of how to handle scientific situations but it all comes down to this, "nobody knows how to take better care of my son than me."  No parent should feel less than or wrong for placing their child into the care of others if they feel it is the right choice for their child.  Nobody, and I mean nobody, is allowed to make me feel that I am a "less than parent."  

It all boiled down to one thing.  I knew that the emphasis would be about me.  She said one thing to me that sealed the deal.  It is this moment, when I think back, on where the red flags started waving in the hospital breeze of ambiance that made me want to run out the door.  It was the intake coordinator saying these few words, "Well you said you were a mess."  Experience has showed me that the focus would of been on me not the school.  

And of course if this had not been the case, I wouldn't of been able to provide my child with this opportunity because of the all mighty dollar.

My conclusion is easy for me to understand.  Never talk about myself and never assume that  people are out there who will stand up against an institution governed by people that are making rules where I, and my child, don't have a voice.  

It is sad and controversial.  It is also a conversation that I am willing to have with others.  I am not afraid.  My child is amazing, talented, kind and extremely intelligent.  It is my job to get him to a place of self sufficiency.  Sam and I will conquer this world together.

I leave you with this.  It is a message from a talented photographer:

Everyone communicates differently.  The main thing for Sam is communicating in alternative ways than what some people might traditionally expect.  Everyone has a purpose in this world.  Sam is here to create art and teach others with his condition that anything can be achieved.  Some of the most successful people like Einstein, Steve Jobs, Leonardo Di Caprio and John Lennon didn't even finish high school but found their way.

I couldn't of said it better myself.  And again, no parent should feel less than for making agonizing decisions on what is best for their child.  It doesn't matter what the decision is.  It just doesn't matter.

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.

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

My Heart Hurts

When something happens to one of our Autism kids we talk about it.  We all talk about and it doesn't matter where on this globe called Earth we live.  Autism is a global issue, it is also a Rochester, NY issue and it is where I currently live.

Thanks to Social Media all of this despairing information is available to all of us to share.  The latest news was an injury sustained by a child while in a Group Home at our own Hillside Family of Agencies.  I say the name out loud because the news is already out and the Group Home wasn't named but Hillside was so I am not ashamed to vocally say what agency it was.  I am not ashamed because the school district wants to send my son to a school run by Hillside.

What happened to this child happens to children every day in our country.  I won't go in a play by play but basically he was put in a choke hold and sustained substantial bruising.  What makes this so very difficult for me is that I worked for Hillside.  I worked on their Peaceful Community Initiative to lower the number of restraints in their vast land of services.  I was also trained at Hillside which included training to place children in restraints and seclusion rooms.  I feel sick on how slow the restraints are made with non disregulated people.  They try to have the person come at you full force but face it, there are no real life scenarios happening.  People would look at me with fear in their eyes saying, "I don't want to do this."  They practiced the restraints anyway.  They needed a job, they needed the money.  I sat thinking on how much improvement is needed in the training.  That was the reason why I was there.  My job was to tell Hillside what I thought of the training.  My words didn't mean anything.  I was probably too controversial.  I have to live by my standards and I have to keep it real.  That training sucked.

It is called Hillside Family of Agencies.  Family of Agencies?   Family to who?  Think about it....Family...of...Agencies.  It is a group of people who work for Hillside and it is their family of workers that they are talking about.  I don't know if I need to apologize but this is how I feel about it.  I have been involved with schools for the past 7 years that don't want anything to do with me or my family.  It is what they believe, what they think Sam needs and it is their policies that they abide by.  It is their rules that they stand up for.

Am I angry?  I am so angry I can hardly function.  My mind is stuck on how to help Sam.  It angers me that my advocate from the leading advocacy agency told me that the placement wasn't appropriate.  It was this same advocate that said in the school meeting "Hillside, I have never visited Hillside.  I would love to visit Hillside."   What?  Are you kidding me?  She told me no to Hillside.  She said to me, "That is not an appropriate placement.  You ask them what the definition of insanity is and then you wait for their reply.  You get the power back in your corner."  I can't find the words to express how that feels.  I felt duped.  I am powerless.  Or am I?  That is one thing that I haven't figured out yet.

What is the definition of insanity.  We all know what it is.  It is doing the same thing over and over again without different results.  My son needs a multi-sensory approach to education.  It says so in his IEP.  It was the school district that sat me down and said that they can't force any placement to do what my son needs. Why not?  IT IS IN HIS IEP!  It is also written that they can restrain him and put him in a seclusion room for 20 minutes.  I know that they won't follow the need for a multi sensory approach but they will follow the IEP to restrain him.  Restraining him is a far more easy approach than providing the appropriate approach to his educational needs.  Nobody can tell me otherwise.  I have had too much experience with school personnel that think they are above me.  No, I am in charge.  I make the decisions for Sam.

This is the end all of end alls, I work for my son.  I don't work for Hillside.  People say that you have to be accommodating and disgustingly nice in these meetings.  I don't have to be nice when I write.  I don't have to say that I have to conform to fit their standards.  I don't have to and I won't.  This is my son that I am fighting for.  I am controversial and I keep it real.  I want my son safe.  I don't want to place him in an institution that is known for not involving the parents.  It is a known fact.  It said so in the article.  This particular institution would not comment on the apparent abuse of this child.  I am not surprised.

I have to face facts, I am running on fear.  I am also doing this alone.  I am scared out of my mind.  They don't have a placement for Sam.  Hillside is for families that don't have any alternatives.  It is with a heavy heart that they place kids in their care and non of them do it lightly.   We have a place for Sam.  He is wait listed.  We will wait.

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