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.

Equality

I sit at my computer and cry.  I am whipped.  I am so tired that I can hardly move.  The only part of my body that will move is my fingers.  My thoughts never stop whirling so I do the only thing I can.  I type.

While I type I am listening to the recording, "All representatives are assisting other customers.  Please hold the line.  Your call is very important to us."  I am on hold with the Social Security Administration and I can't leave my phone to do other things.  I have been on hold for 30 minutes.  In reality it doesn't matter anyway because I am losing my will to do the things that need to get done.  I pat myself on the back for at least getting one thing done and that is this particular call is so I don't lose my benefits.  I might be holding all day.

So while I sit and listen to the taped message over and over and over, my mind wanders to the subject of equality.  What is equality really?  It can be said that we all want to be treated as equals.  It doesn't matter of sex, creed, religion, choice of who you want to marry or equal pay.  My mind wonders to the thought of equality for those with disabilities.

Today is the 23rd Anniversary of the American with Disabilities Act.  The ADA was signed into law by President Bush "to eliminate discrimination against citizens with disabilities in the areas of employment, transportation, telecommunications and public accommodations."  The underlying theme to me is the act of treating people as equals.  My heart sinks because the missing word in this law is education.  Where are the civil rights for our kids who are in the school system?  I say this because every time Sam was restrained and put in a seclusion room I tried to call the Center for Disability Rights and was told, "I am sorry, we can't help you."

This entire train of thought started while watching the movie Lincoln and I listened to the words during this particular scene of the film, "Do we choose to be born?  Are we fitted into the times we are born into?"  My brain starts churning as I continue to hear, "Have you ever heard of Euclid's Axions and Common Notions?  Euclid said that it is the self evident truth that things which are equal to the same thing are equal to each other.  We became with equality, it is the origin that is balance, that is fairness, that is justice."

I don't know much about Euclid but I guess his discovery is very important.  In reality I have no clue what I am talking about.  I don't know anything about mathematics, mechanics or anything related to engineering.  What perked my ears was, "things which are equal to the same thing are equal to each other."  It is self evident that the film was making the point that Lincoln thought that all races were equal.

Again, I think of Sam with his disability.  He was born into this world with the American right to be treated equal.  But is he really being treated as an equal and an equal to who?  We are all different.  Am I asking for him to be treated equally in the education setting?  Well, if he was truly an equal he would have to be treated equal which means he wouldn't get the services that he receives.  When he turns 21 I am going to fight as hard as I can for him to receive a job coach.  Do all people receive job coaches?  Obviously, no they don't.

Lincoln fought to abolish slavery.  The film was successful in humanizing a man who wanted equality.  The people who sat and protested for the Civil Rights Law were the same kind of thinkers as Lincoln.  I am the same thinker as these folks.  For me it isn't about equality.  It is about civil rights and we all have them.  My son has them.  I will make sure that his civil rights are enforced whether it is written somewhere or not.  I have so much to learn and maybe someone knows where it says that my child has civil rights to be treated fairly in the education system.  Restraints and Seclusions and the use of brute force is not fair.

I had one more thought about equality.  Sam and I live in the United States of America which is the melting pot of all cultures.  Individuals diagnosed with Autism are forming their own culture.  If you think about it, this makes sense because one in 150 are diagnosed with Autism.  That is a lot of folks who are trying to be treated fairly.  This is not only a United States issue, it is a world issue.  How many times does the Autism Culture say that Autism is like a Mac compared to a PC.  It is a different operating system.  It is Temple Grandin who coined the phrase, "Different not less."

I conclude with the question of equality.  How can Sam be an equal if he is different?  It is Sam's civil rights that I am concerned about.

In fairness I will say that the equality that I will fight for is for Sam to be treated equally as in equal pay, equal rights as in the right to vote, ect.

In the film, Lincoln asked if we are fitted into the times we are born into.  I sure do hope so.  It is my fight for my son to have civil rights and equal rights in the classroom.  He has an equal right to be treated justly and fairly among all the other children in the education system.

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.

The East vs. The West

I grew up in what would of been considered the "Upper Middle Class".  Today, I am definitely in the "Lower Poverty Class" if a "Class" system really existed which it doesn't. The "Class" system just exists in our minds and it is how we still classify people.  We even classify people as "White Trash" which really isn't nice just because a person is poor.

With that being said, I live in a city that is divided by the Genessee River.  There is the East Side and the West Side.  Think of the West Side Story and that is our city, especially in the Autism Community.

After I recovered from Cancer I was isolated and alone in my family's world of Autism which included Sam, Mina and me.  I desperately wanted friends.  I joined my Autism group which consisted of women and I drove to the East Side of the city to do my part in the fight for Autism.  It didn't matter what the fight was about, I wanted to be there to be part of it all.  It didn't matter what committee I needed to be in and  I was there ready. I was there ready until I finally realized that I wasn't an East Side Mom of Autism.  I wasn't in the Sorority.

It most likely sounds like I am moaning and groaning.  I imagine people shouting into their computer screen, "Get over it Woman!"  It boils down to one thing.  I got hurt.  I tried and tried and tried again to put myself out there and I finally had to quit.  My son is going through a situation that no child should go through with the restraints and seclusions and the help isn't there.  It devastated me that I asked a woman to attend an IEP meeting to be told, in not so many words, that it wasn't part of her job description.  It wasn't what she said exactly but I got the point.  My problem was that I asked her as a friend.  I am a Westsider, she is not my friend.

I think the funniest memory I have that cracks me up is what someone once said to me at a meeting.  To set the story up I must explain that all my money goes into my kids.  When you only get so much you do what you can.  I don't have a lot of nice things to wear and I tend to wear the same thing over and over again because I don't spend the money on myself.  I remember the woman standing next to me sneering saying, "Your clothes, you need to do something about your pants."  Ha!  I wish my pants were my biggest worry.  There was one other time that a woman brought an entire bowl of raspberries and blackberries to a meeting and I just stared at that bowl thinking, "Wow, that must of cost a lot of money." They were delicious by the way.  I have dreams of being able to afford them to sprinkle some sugar on them and taste the goodness.  I will always remember that bowl of yummy fruit.

So why am I talking about these woman?  I just desperately need to get it off my chest or it might just kill me in a literal way.  Stress is a killer and I have already fought depression and cancer and won.  I also think that maybe people would have a better understanding of how Autism isn't just for the rich.  It is difficult to listen to people talk about the therapies they paid for and the education they paid for and the gluten free food that they paid for.  I can't afford any of that.  It is even worse to sit and listen about their vacations to whatever resort they are spending time at.  I am not talking about any particular person, I am talking about anyone that is more fortunate than me and my family.  I wish I could be happy for the more fortunate ones.  Sometimes I feel this stabbing pain in my chest where my heart hurts so bad because I can't do more for Sam..  I selfishly say that it hurts me even more to know that I am not in the "in" Autism group.

Here is the clincher.  I have the deepest respect for these woman.  What they do is amazing.  What they fight for is admirable.  They spend hours upon hours doing what they do and they do it well.  We all are walking in the same line.  The lines just happen to be parallel on opposite sides of the city.

Another difference is that they are educators and I am an activist.  I get angry and I let people know in the nicest way possible.  I am not afraid to carry signs and walk on the street corner.  I am not too sure if I could yell into a bullhorn but I could stop and talk to people on the street and hand out flyers.  I would be good at that.  I start groups on facebook and I invite everyone in my Autism Community and I post whatever I can with responses from my fellow activist from California, Ohio, New York City and even Canada.  I have seen e-cards that say that "In my Autism world all of my friends are in a computer."  I just wish I had more in my backyard that would stand on my street corner with me.  My New York City friend will, she has already informed me and I think that is the coolest gesture anyone has ever made on my behalf.  I will stand on any street corner with her yelling into our bull horns to stop the abuse.

Why is all of this on my mind?  My son goes to the Autism Camp on the East Side.  Sam was given a scholarship.  The Autism Camp is probably one of the best Autism Camps in the world.  It is an inclusion setting and Sam thrives from amazing workers that expertly run the Autism side of the camp.  I have these woman to thank for that too.  I just wish I was part of their Sorority.  It is difficult to pick up my child and stand side by side with another person with a glass wall between us having nothing to say.  It makes me sad.

Do I have friends?  You betcha!  I have the best kind of friends that I am extremely thankful for.  I am thinking that I just need to get over myself.

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.

Missing the Meds

This post really isn't about what I went through but what I am going through right now.  This post is about what all Mental Health clients go through.  Just like everything else, it is the system that is broken not the individual people in it.  Well, not all people.

For the past two and a half years, since recovering from the debilitating depression after cancer, I have fought to get a new counselor at my clinic.  When I first arrived at the clinic over 7 years ago I was struggling.  I wasn't comfortable with the person I was sitting across from and when I asked for a new one I was assigned to Jason.  Making a long story a little bit shorter, I was diagnosed with cancer at the same time he was leaving the clinic.  They put me back with the original counselor.

I was so sick when the change was made that I didn't fight it.  The years past, I got better and I was sitting across a person who made me angry.  There is a rule in our clinic that you have to arrive 10 minutes early to be seen.  She would make me wait 20 minutes past the appointment time and my blood would boil.  My time is very important to me.  I advocated for myself and asked for a new counselor.  I was met with, "Well, the entire team would have to meet to discuss it" and "there is no guarantee you will like the new counselor".  I am thinking that the chances of liking the new counselor compared to her would be very high.  I pride myself on being a nice person but I just didn't like her, at all.

I stopped going to my appointments.  It was a stupid thing to do.  I could of sworn that the psychiatrist said I could just make an appointment with him to get my medications.  I was wrong and they kicked me out.  They were kind enough to give me one more appointment with the psychiatrist who just took over my own assigned psychiatrist.  He looks at my list of medications and says, "You don't have to be on Lamictal and Seroquel at the same time.  The studies show that there are long term side effects with the Seroquel."  Sam's prescriber has told me this and we are reducing the Seroquel for Sam.  I didn't make the connection that I might be true for me also.

Again, trying my best to make a long story a little shorter, I fought for a new counselor so I could see this particular psychiatrist so I could lower my Seroquel.  That makes sense, right?  This guy told me something that made me very nervous and I wanted to change it so I would feel more comfortable about my medical situation.  I asked an advocate to go with me and at the time of the appointment and she was a little late.

What happened at this appointment floored me.  I sat down and there were two people,  the bad cop and the good cop.  The bad cop asked me why I didn't like my counselor.  What was I supposed to say?  I felt cornered and I asked to wait for my advocate.  I tried to talk and all that came out was, "I don't like her."
"Why don't you like her?"  What was I supposed to say, "Ummm, because I think she is a b@#%."  That was the entire problem really.  I didn't like her attitude.  I didn't like how she made me wait 30 minutes to see her.  I thought it was rude.  That was really what I should of said but I panicked and said, "I don't like the way she sits.  I don't like the way she talks."  I was going into fight or flight and I was becoming panic stricken and I was finding it hard to breath.  It was this exact moment that the advocate came in out of breath apologizing all over the place.  I got up, hugged her and told her how thankful I was that she was there.

After deliberating my wishes, the good cop said, "It seems to me that you have had to fight for everything you have ever had."  The good cop got me and I received a new counselor.  The deal was that if I missed one appointment I was out.  They also told me that I would have to get a couple of months of medications from my primary doctor.  I was also told that I wouldn't be able to see the same psychiatrist who said he would help me get off the Seroquel.

A couple of weeks passed and I talked with my primary doctor and she prescribed my medications.  I wasn't 100% positive on the dose of the one and I told her I would call her nurse.  I have a horrible time with procrastination and I forgot to call.

I have had two appointments with my new counselor and she said it would be months to see a new psychiatrist.  She also said that she isn't sure I need therapy. WHAT?  I don't need therapy?  UMMM, I am living this life with Autism and the stressors are enouth to kill.  Stress is a killer right?  Am I missing something?  I was talking and I was saying that I finally have friends and that makes me happy.  The counselor said that maybe I didn't need therapy and I could share my problems with my friends.  WHAT?  Share my problems with my friends?  What friend wants to be dumped on again and again.  True, my friends are phenomenal listeners but geez, really?  When I was sick all those years undiagnosed with Bipolar they got sick of me and dumped me.  I don't blame them.  Now that I am healthy aren't you supposed to get rid of the unhealthy ones who bring you down?  She also told me I didn't have Bipolar.  It was all normal stressors.  I have been hospitalized so many times from talking myself off my medications.  People with Bipolar are the most likely to take themselves off their medications.  It is a researched fact.

All I am thinking is, "Why am I staying here?"  There are many reasons why I will stay and it all resolves around my safety.  I was once admitted to an emergency room for restless leg syndrome and they put me in the psych ward.  This was about a year ago.  They called the counselor that I didn't like.  The one that I missed all of those appointments and they almost didn't let me out.  True story.  This situation also led me to be interrogated by Child Protective Service for three months.

This all leads me to today.  I procrastinated to call my primary about the other medication.  Procrastination is one of my goals that I want to work on with my therapist.  I woke up shaking, scared out of my mind, and I new that the Bipolar was kicking in because I have been off the one med for a couple of weeks.  I was just thinking yesterday that I was feeling great and maybe I didn't need it.  "Yeah, I don't have Biplar", I say sarcastically.

I called my primary doctor and talked to the nurse.  I told the nurse to tell the doctor how sorry I was that I procrastinated.  I asked her if she wouldn't mind if she could hurry because I wasn't feeling well.  I love my doctor.  I wish my doctor was my therapist.  Oh well.

I believe that the number one reason I should be allowed to continue to receive therapeutic services is to stay well.  If I am not well, there is almost a certain guarantee that I would loose Sam.  Having a psychiatric diagnosis is grounds for losing custody of your child.  I know because when Sam was little I sat in a court of Law fighting for my right to raise Sam.  I won.  I was also well at the time.

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.

When It Is Time To Bow Out

Groups are difficult for Sam.  This is one of our most recent experiences in a group activity...

"You can't tell me what to do!"   I am sitting a few feet away and my ears tune in.

"Don't look at me!"  Still sitting, my full attention is on Sam while he is shouting at some boys.  I sit with the woman who is taking my money for camping and she says nothing.

"Stop looking at me!"  Now everyone's ears are tuned in.

"It isn't funny!"  I look and nobody is laughing

"I can't stand this!"  I get up to intervene.

The first thing I did was sit in Sam's line of sight to block out the stimuli.  The most wonderful woman in the world is sitting next to me and she said to me, "Wow, why didn't I think of that."

The kids go to the front of the very big room and all Sam wanted to do was to go home.  We couldn't leave until the ending ceremony.  The leader of the group, who recently took over leadership, came up to me and said, "I am worried about camp because it is 16 campers to 5 adults."  Instantly I knew that he was implying, "We don't know what to do with Sam."

The stimulus was too much and other people's knowledge of Sam's disability was too little.  I sat there and knew that I had to pull Sam out of this group.

Just like the principal makes the school, the teacher makes the class and the leader makes the group.  It is nobody fault that the leader of the group, that recently resigned, was more aware of disabilities.  This is the thing,  the leadership went  from superb to good.  Again, nobody's fault.  In a matter of a few weeks Sam was voicing that he didn't want to attend.  He knew he wasn't accepted.  He told me that people didn't like him.

Memories crash in.  Because of my mental heath, I wasn't accepted when I was young and I certainly didn't fit in.  I remember as a little girl, a group of kids decided that in order to join the group you had to jump out of the tree.  Maybe that truly was the initiation or they knew I would be too afraid to jump out of the tree.  I had to go home.

Where do my memories and Sam's experience make any sense?   How do I know what really is reality?  All of these experiences, his and mine, are thrown into a whirlpool where thoughts, memories, experiences are all jumbled together in a chaotic mess.

My job is to protect Sam.  My job is also to allow him to experience life.  Sam was slamming his feet and covering his ears with this look on his face that clearly communicated to me that he was in physical pain.  Sensory integration is real and it hurts.  Anyone can read any autobiography from any person with Autism and they will tell their story of their sensory integration disorder.  I reiterate, it is a reality for our loved ones with Autism.

I sit with Sam and I continue to experience the crashing of thoughts and feel the pain of hurtful memories.  "You need to beat that child!"  and "If that was my child he would know who was boss!"  I can't shake the most hurtful memory, "You need to leave the store, you can't stay here."  Yes, my child was running frantically up and down the isles.  Yes, my child didn't have any shoes on.  All I wanted was for someone to help me grab my groceries so I could scoop up my child.   All I got was stares.  This all happened in one of leading grocery chains in the country.  While stroking Sam's arm to comfort him, I wonder if this is what people are thinking.

The end result was that I did pull my child from the group.  I also got a refund for the camp.  I will probably tell Sam that this group doesn't meet during the summer and it is a school year activity.  There is another group that Sam participates in that ends for the summer.  I am not entirely sure but he might not ask at all.  Sam is a "what are we doing right here and right now" kind of kid.  Sam lives in the moment.

I think of the positive.  I met the most wonderful woman that was a co-leader of the group.  I am thankful that I met her.  She adored Sam and Sam adored her.  Sam felt accepted.

So I leave with this thought.  Was it my responsibility to stay in this group to try to educate them about Autism?  I personally don't think so.  Was it my responsibility to keep Sam in the group to teach him about living while feeling extremely uncomfortable?  Maybe some would argue that I am not doing him any favors.  I really don't know the answers to these questions.  Sam is wired differently because of his Autism.  I am am doing my best to teach him that he is "different not less".

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.