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.