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

What are they thinking?

I really hope this post makes sense.  I welcome anyone to add comments because maybe I am missing something.  Currently I am dumbfounded on why the Director of Special Education would hand me an educational article that apparently is "ground breaking".  For me, there is nothing groundbreaking about the research that she handed me.

I have been doing anything possible to help Sam feel comfortable in any educational setting.  I also have been working overtime to educate anyone, in multiple schools he has attended, about how he learns and what is needed for Sam to believe in himself to become educationally successful.  My degree is in Education and I was certified K-12 in Biology and Earth Science.  I was trained to be an Elementary School Teacher.  I taught in Seattle, Washington and I was trained in restraints and I have experienced what it is like to restrain a child and sit with them in a Time Out room that was no bigger than a closet.  It is crazy when I think about it.  I believe that my higher power was training me for the life that Sam and I are living now. Something pushes me all the time to share our experiences.

I quit teaching for two reasons.  Okay, maybe three reasons.  First, the teachers that I met didn't really have nice things to say about kids in the lounge.  I finally had to each lunch in my room and I was thought of as an outcast.  It was just another arena where I did not fit in.  Second, a kid pulled a knife on me and I was two months pregnant with Mina.  Third, and most important, I believed in alternative education for kids to feel success, therefore, they want to learn more.  The administration didn't believe in alterntive ways of learning.  I say the third is most important because I didn't feel that the child with the knife would hurt me.  It was however, the last day I taught in any classroom.

The article was titled "Mind-Sets and Equitable Education".  The first paragraph says, "Much talk about equity in education is about bricks and mortar-about having equal facilities and equal resources."  The definition of Equitable is 1: having or exhibiting equity: dealing fairly and equally with all concerned.  Most people know what equitable means but when it comes to our kids in special education  fair doesn't mean equal.  There is an IEP to be individualized to the child's needs.

I am reading the article and it talks about that a teacher and/or student can believe that the students IQ is fixed meaning "They may have a fixed mind set"  I just sit in disbelief that it is ground breaking information that it is difficult to "capture the beliefs that administrators, teachers, and students hold-beliefs that can have a striking impact on student's achievement."  What?  Really?  You don't say.  Geez, I sat at that school and I knew what their beliefs were about Sam.  They believed that he was mentally unstable and he perceived things.  They also didn't know what the triggers were. I know that they didn't believe in Sam, they didn't do their homework and they were lazy.  That is a little harsh but that is my belief in their ability to understand and to educate my son.  I have heard educators say, "What does the parent expect, the child is mentally retarded, this is as good as it gets."

It keeps rolling around in my head on how the Special Ed Director was all smiles handing me this article saying, "I want you to read this."  For what reason?  I am not the one that believes that my child's IQ is fixed.  Nothing in life is fixed.  Nothing.  It further says, "Recent research has shown that students' mind-sets have a direct influence on their grades and that teaching students to have a growth mind-set raises their grades and achievement test scores significantly."  It continues to say, "In addition, studies demonstrate that having a growth mind-set is especially important for students who are laboring under a negative stereotype about their abilities." 

I know that anyone reading Sam's reports will have a "fixed mind-set" that Sam "can't" instead of thinking that he can grow and learn in a caring environment.  Sam's reports say that he is cognitively disabled and mispercieves his environment and all of this negative crap which will make it difficult to see Sam's potential.  How can you not have a "fixed mind-set" that he can't learn.  It says so in all of the reports.  I am working overtime trying to change wording so educators will have some belief in Sam's abilities to learn.

I further read and everything that they researched is common sense?  Or is it?  When a college student is learning about how to teach students it would be my hope that they are learning that you don't stereotype kids.  I think of  my experience of alternative teaching and it brings me to today's educational world where the blame is placed on New York State Curriculum that makes it impossible to instill in a child that they can learn.  For me it is all ridiculous.  Give Sam a safe place to learn and fill his day with people who believe in him.

While reading I sit in amazement that it is new knowledge that when students were praised for their effort their performance continued to rise.  I can say that one of the points the writer was making that it is beneficial to praise for effort instead of praising intelligence.  On the flip side it would be destructive to communicate to a child that they were not smart.  During my student teaching when I made an alternative learning curriculum for a specific child, the teacher looked at me and said, "Why bother, he is mentally retarded."  True story.  I made the lesson for him and he completed the entire task.  Today I listen to Sam telling me that he is not intelligent enough to be successful.  We have intelligent discussions about it.  Maybe the Director of Special Education wanted to make it my responsible to change Sam's "mind-set."  No it isn't.  The education team has to meet me and Sam half way.

In conclusion, it was one of the most ridiculous studies I have read. It is common sense to see human potential in all who enter any educational setting.  This is what I do with Sam's photography.  I send the message to him that he can learn.  I agree that I do say he is smart but I also tell him that he can do it when things get difficult. I also don't back down and I give the encouragement needed to finish the task at hand.  As a result, Sam's enjoys his success after the task at hand is completed.  This is not new information to be celebrated.  I will definitely bring this article to my next CSE meeting and ask them, "What is your "fixed mind-set" about my child.?  I am sure that they will all say that there is room for growth.  My response will be this, "Put it in all his reports.  Rewrite the reports so a stranger reading it will believe in Sam's potential.  Put it into their minds that there is potential for significant growth."

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

It Isn't Rocket Science

It is 10:00 on a Friday night and I am writing.  That fact alone tells the story of my social life.  It is non-existent.  I met up with an old friend the other day and we hung out at a coffee shop and went to a movie.  It was of the opposite sex and we had plans to meet later in the week.  He called me and I said, "Hey look, I am so sorry but the school meeting didn't go well.  I can't drag you into this mess and you don't deserve to hang out with someone who is not happy."  He said, "Thanks" and that was that.

The Committee on Special Education meeting did not go well this week.  I have to laugh because I later sat and I cried and put all my thoughts on facebook which is really the social thing to do (I say kiddingly).  There is something I must clear up.  How I talk on facebook is not how I talk in meetings.  My social expression is my thoughts on how I really feel.  I act accordingly in  meetings with the laughter and the kidding around and all the stuff that makes me literally physically ill when it is finished.

My district is a very large district and there is no possible way that they can know each kid individually or can they?  Isn't that what the Committee on Special  Education is all about?  Isn't it a group effort to oversee a program that works?  I get that it is all about money.  I also get that it is about the big wig who is breathing down the Chair's neck.  I have visions of our Chair sitting in a meeting with their stats on who is placed and who isn't with the side remark, "So how is it going with Mr. Sam Maloney?" With the response, "We have a very involved parent who is making it difficult to place him."  I don't really know but I can say that the Chair looks really stressed in our meetings and I always tell him that they couldn't pay me a million dollars to do his job.

My thoughts drift to rocket science.  I was curious to know of the origin of the expression, "Well, it isn't rocket science" and this is what I found. It is an idiom that means. "This isn't all that advanced or hard to understand."  I also found this, "Rocket technology is thousands of years old.  It is Sulfur, saltpeter, and charcoal powder in a tube, which you light and retire.  A few tests and a little trigonometry will tell you where it will land.  A little calculus and some data on thrust and combustion rates and you can work out the acceleration and the trajectory and everything."

I am wondering if anyone knows where I am going with this?  It makes me chuckle because what I want to scream at these meetings is, "You have all of these tests.  You have all of this information and you still don't understand my child!"  I want to yell at the top of my lungs, "This isn't rocket science!"  Or is it?

Us parents know that our children with Autism come from a different operating system.  All the neurotypical workers out there, except for the ones with children diagnosed with Autism, don't live this life.  How many times have they been trained to watch the videos and read the books that are so thoughtfully produced by so many talented individuals who live this life as a Mac and not a PC.  How can you understand something if you don't live it?  How do these people come up with any answers to the questions of "What will work for this child."  More importantly, "What have we tried again and again that isn't working."  It isn't rocket science to know that if it doesn't work come up with a better equation for better outcomes.

Rocket technology is trigonometry and calculus.  I don't understand math but I do understand the concept of calculations.  You feed in the information to get the answer.  Isn't that what Behavior Specialists do?  What I got was a piece of paper slid across the table telling me how many behaviors he had.  I looked at the piece of paper and said, "What day, time and subjects did these behavior occur?  I was met with, "We don't know."  "You don't know!" is screaming in my head.  The next meeting they slid me the same sheet of paper with the same kind of skeleton information and I slid it back saying, "This is meaningless."  I also told them I was pulling Sam because of the abuse that he had endured while he was in their care.  Yes, I can be a little you know what.  And yes, I did enjoy the look of shock that clearly showed on their faces.

Rocket Technology is also about "a few tests with these calculations to tell you where the rocket will land."  All of these tests that we give our kids are given so we can get them to land on their feet when they are 21 to lead productive lives.  The tests can include IQ, Auditory processing, Sensory Integration Evaluations, to name a few.  Sam's tests were ignored and now they are outdated.  They were not looked at and Sam is floating out in space at the moment with no place to land.

So in conclusion, I guess figuring out our kids, for the professionals is rocket science.  I guess calculating our kids needs is an arcane science which by definition is, "an adjective known or understood by very few; mysterious; secret; obscure; esoteric.  This is a shame.  Maybe the professionals should listen more to us parents.  To us, figuring out our kids is not, for the purpose of this discussion, rocket science.

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.

Maslow's Hierarchy of Needs

What can I say when this actually says it all?  So what is my point that I am trying to make?  It is simple, make my son feel safe and he will be able to function in a classroom.

I wish the discussion could end at Maslows Hierarchy of Needs because it doesn't feel to me that some people can actually grasp this concept in our nation's classrooms.  This is because in our nation's classrooms and especially in our special education classrooms it is all about power.  It is "Do as I say and I won't hurt you."  I will also add that there are amazing teachers and amazing special ed teachers.  For the sake of this discussion, this does not include them.

I am basing this, my own discussion, on what I see on various groups on facebook.  I am hit time and time again with images of bruises on our kids.  I sit and read in horror on how our kids can be electrocuted to behave. I believe that the only school that uses "aversion shock therapy" is the Judge Rotenberg Center in Massachusetts.  It shouldn't be used anywhere.
  

This is how it works.  The kids wear a backpack and it holds the equipment to shock the kid.  This particular kid in this photo has two holsters that also hold the equipment to shock the kid.  I am not going to go on and on about this practice but to actually have the equipment on their body the entire time they are awake and having to walk around knowing that this equipment on their body can harm them?  What must these children think of themselves?  I really don't know what else to say.  I wish I could come up with something clever but I can't.

My thoughts drift to Sam as an example of the American child with a disability.  You can't lump all children together in any category but my point is this, what does my child and every child think of themselves?  Do they feel valued?  Do they feel good about themselves?  Do they know that they are or could be contributing members of society?

I have too many examples of where Sam feels he is not good enough, he doesn't feel smart and he doesn't feel important.  That is a shame.  

I repeat this over and over again.  The national average of kids dying per year in the United States of America is six children.  I watched the life drain out my son's eyes after being restrained and put in the seclusion room time and time again.  He was voicing that he wanted to harm himself.  He actually tried to harm himself. Obviously, me repeating that time and time again isn't going to make much of a difference for our kids.  The only thing that I can do is educate.  

Why am I talking about this?  It is because I sat in my son's pediatrician's office today stating my case that I needed a letter stating that the use of restraints and the use of seclusion closets is not in the best interest of my child.  I scratch my head on how it says in his IEP that he can be restrained and put in a seclusion closet for up to twenty minutes.  I did not OK that.  I would never OK that.  I want it out of his IEP and I don't want it in any behavior plan and I don't know how to get it removed.  The problem lies in that the pediatrician saw Sam kick a chair when we were talking about how I needed the letter.  I asked Sam if he was OK if we talked about it and he said yes and clearly that was not a wise decision.  I made a separate appointment without Sam and the doctor said to me, "Well, I am wondering if they are afraid what will happen."  Ummm, give the kid hands on, multi-sensory work that caters to his interest and think outside the box.  I am a broken record when it comes to how you should teach Sam. Not one single person, except for the idiot Boy Scout Troop leader (sorry he was a boob) is afraid of Sam.  

Give Sam food, water, shelter and a safe place to learn that caters to his needs.  If he has that maybe, I will say most likely, he will feel a sense of belonging, his self esteem will rise and he will begin to have self-actualization where he believes in himself.  It must be true.  I say this because if it wasn't true, Maslow's Hierarchy of Needs would not be so well known and would not be used in the extent that it is used to teach others what is needed to be successful.  I am sure our special ed teachers have heard about it.   

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.