#1 Rule: Keep Your Appointmets

When things get tough, well meaning people say, "Don't worry Deb. It is just a bump in the road."  I appreciate these comments and I am thankful that people care enough about me to lift me up and push me forward.  Lately these bumps feel more like mountains and all I want is for them to go away. 

I write about having a Mental Illness for one reason.  OK, I have two reasons.  The first is that I have hopes that maybe my blog will find someone that is struggling to survive and I can be of some help. For the first time in my life I feel emotionally stable.  Yes, I have the dips that maybe dip a little more than the normal person.  The dips are manageable and aren't too deep where I can't find my way out.

I would have to say that my second reason is these two basic questions that I ask myself, “How can I teach a person what it is like to have a  Mental Illness and how can I dispel the myths that hover over a person who has the Mental Illness if I don't talk about it?"  For these two reasons, I write my story.

I write the term Mental Illness loosely.  Actually, I hate the word Mental Illness.  I would prefer to use the term Mental Health Challenge because I challenge my mental health to not defeat me.  I am winning.  I use the term Mental Illness because that is what people are used to hearing. 

It is said that  you can't go around, under or over a bump in the road that represents your current situation.  I have learned that you have to go through it.  I would rather go around it.  I hate confrontation because it makes me symptomatic.  My current situation is that I don't like my therapist.  When I first came to the clinic she was assigned to me and I knew that it wasn't a good match.  I wasn't happy and I asked for a new person to talk to about my hopes, fears and dreams.  I was transferred to Jason and he was the best therapist I have ever had!  He was there for me, he listened and he never judged.  He moved out of Rochester and I was devastated.  It took me so many years to find a good one.  I was placed with my original therapist. 

I told her that I wasn't happy and she said that we had to make it work.  I don't show up for appointments.  I either oversleep or I just happen to forget.  Just like Sam, I am not compliant when I am not happy.  I don't mean to forget or oversleep but somehow it always happens. 

I say that the #1 rule for me is to keep my appointments.  I have learned the hard way that if, for whatever reason, I end up in the Psych ED and they call my therapist, it would be in my best interest if they said that I was compliant.  This is the definition of compliant: 1: ready or disposed to comply: submissive 2: conforming to requirements.  To me this means that you don't have to like it but you have to do it. 

Recently I was going over my calendar dates on my phone and I realized that I missed an appointment with my Psychiatrist.  So much was happening with Sam that I forgot to check my phone.  I panicked because he told me that I would not receive my meds if I forgot to show and discuss how I was dealing with all of my issues.  I missed my slot of alloted time because I had decided to work and I chose money over my pills.  I had to fight to get my meds and I promised that I would never decide to do something else besides checking in so my meds could be filled.

I was scared as I drove to the clinic.  I was going to give it my best shot to get another appointment with the Psychiatrist.  I figured that while I was there I would ask the clinic how I could change therapists.  I walked up to the reception desk ready to make my speech.  She looked it up and my time with the Psychiatrist wasn't until the 31st.  I was elated that this was one more thing that I didn't have to deal with.  I asked about changing therapists and they said that I had to talk with her directly.  I feel disspointment because now I have to deal with the one thing I hate the most which is confrontation.  I decided to make the appointment and be a big girl and hope that the therapist will let me be and make the change.  I went home with two little white cards that proved that I wanted to be seen and that I wanted help.

These two little cards became a saving grace because that afternoon CPS came knocking on my door.  Someone as an issue with me and has made false allegations for whatever reason.  I knew that if the worker called the therapist, she would become aware that I was non compliant.  When the CPS worker asked me about therapy I showed her the two cards with my alloted time.  She now knows that I am compliant and that might be the one thing that saves my behind.

I have learned my lesson.  KEEP MY APPOINTMENTS.  End of discussion.

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 Am Not Crazy

Cancer is a b*&@#.  There is really no other way to put it.  Not only do you have to suffer through treatments, you have to rise above the lasting results.  Bad things will happen and people will say, "Well, at least you are cancer free."  This is all good and I know that I should be thankful every single day that I am not dealing with chemo, radiation, psych appointments, therapy appointments and on and on.  I just happened to have a problem with my feet and I could not rise above the anguish that the side effect of chemo had caused me.

There is a side effect of Chemo called Neuropathy.  I have always had a pins and needle feeling in my feet.  I never mentioned it to my Oncologist because it wasn't a quality of life issue. Once in a great while I would wake up in the middle of the night with this unbearable feeling in my feet.  It is hard to describe the feeling that I get that wakes me up and makes me feel like I could go crazy if it continues.  I think of fingernails scratching on a chalkboard.  I would say that if my feet had a voice they would be screaming.  My body scrunches up and I yell as I am pounding on my mattress wanting it to stop.  I get out of bed and pound my feet on the floor. 

That all changed this past week.  For some reason my nerves in my feet decided that they would scream at me until I thought I would lose it.  Every night Sam would wake up when he heard me yelp and he would rub my feet.  Mina would hear me cry because her room is above mine.  After seven days I decided that enough was enough and I went looking for help.

Because I am not financially sound I have to go to a clinic.  They informed me that they could not see me until the following week.  I told them that I could not wait.  The world is filled with people who can't afford good quality care.  I am just another one of those folks who are faceless and nameless.  I finally landed in the ER. 

I can just imagine what a mess I was with no shower.  Perception is everything and I probably failed miserably on giving them the impression that I was a well put together individual.  I told them my symptoms and they did this idiotic test by lightly brushing my feet asking me if I could feel it.  I'm thinking, "Of course I can feel it.  If I couldn't feel that I would be falling down you idiot."  I told them that it was at night when I felt the nerve endings shooting up through my body.  They told me they couldn't help me.

Being at the end of my rope I started crying.  I was begging them to help me.  Before I knew it they told me that I had to talk to a psychologist and they wheeled me around the corner.  I'm thinking, "What the hell!  It isn't my head!  It is my feet!" 

The psychologist sits down and in a very condescending manner asked me in a Mr. Rogers voice, "Do you know why you are here?"  I'm looking at him probably with a stunned expression and I said, "I came to the ER because I am having problems with my feet."  He went on and on saying that I wasn't giving the right impression.  I tuned out after that and I told him I wanted to leave and go home.  He told me that he had to make some phone calls.  He walked away raising his hand as if to dismiss me and said to the four security guards that I was not free to go.  I just sat there and said to the guards, "I only wanted help for my feet."  I laugh now because I probably said I wanted help for my feet over 100 times. 

He came back and told me that he found out that I had cancelled my therapy appointments and that made me noncompliant.  I had to explain that my therapist was not a good match for me and I was frustrated because the clinic will not help me find a therapist that fits my needs.  I wanted to smack the guy. 

I feel like such an idiot because I guess the hospital put me under a Mental Hygiene Arrest. They never told me.  They just wheeled me around a corner and told me I was not free to leave.  Memories flood through me as I recall women who have told me that their husbands had admitted them to the psych ward and they didn't have a voice.  I recall stories on how they had lost custody of their children because of the cruel treatment they had received.  I was experiencing something out of my control and it made me feel sick.  I just sat there realizing that I also had no voice.

I had given the psychologist Mina's phone number so that she could say that I wasn't a threat to myself or to others.  He came back and said that he was waiting for her to call back.  I frantically called my Mom with no luck.  I called my good friend and he talked with her.  She later told me that she just said that I was the most well put together individual in spite of the many things that I have to deal with on a day to day basis.  Mina had finally called the guy and she informed him that she indeed had heard me crying because of my discomfort of my feet.

During this entire fiasco in the psych hall of the Emergency Department a guy walks by and asks if I am being helped.  I said that I wasn't and I was having problems with my feet.  I mean really, I wanted to scream.  He did this test where he had something that looked like a letter opener and scraped my feet like he wanted to scrap off a layer of skin.  That feeling of hard pressure on my feet felt like a comfort like no other.  The only thing that makes the discomfort go away is pressure.  He scraped my hands and I told him that it hurt.  He said that I had Neuropathy and he prescribed Neurotin. 

At this point I was free to go and the guards magically disappeared.  That is when I realized that the guards were there for me.

Today I was ecstatic because I finally received help.  After the first dose of Neurotin I had finally had a good night of blissful sleep.  I was ready to continue on with my life.  That is until three o’clock this afternoon when CPS came knocking on my door.

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 The Feeling Comes Around Again

Sam has been having a tough time at school and his frustration comes out in all sorts of ways.  Sam and I were driving home from the Got Dreams Awards the other night and he bursts into tears saying that he doesn't want to go to school.  That night was supposed to be about Sam doing a good job and his frustrations from school robbed him on this good feeling and that hurts me.  All I can do is say, "I hear you and I am sorry."  The next morning he wakes up and cries because he has to get up and do the school thing again when the day before he arrives home from the bus sobbing because he had a hard time with another child and the bus driver turns up the music on the bus.  All I can do is say, "I hear you and I am sorry."

So how does this all effect me?  I too wake up in the morning with that awful feeling of dread.  I got that feeling again of a weight that makes it hard to walk, talk and function   I sit for thirty minutes and look at my house and feel overwhelmed.  I force myself out of the house to go to the gym and lift weights.  The feeling of people surrounding me makes me feel like I want to run.  I want to run home and hide.  I get through it.  I don't feel better but I know I did something for myself.

So what is next.  Oh yeah, the dishes.  I look at them and again feel that heavy weight.  This is the biggest misunderstanding of having a Mental Illness.  We are not lazy.  When I feel this way I don't have complete thoughts as I do a round robin walking around my house taking note of what needs to be done.  It takes all my strength to walk over to the sink and do the necessary steps.  1.  Put the dry dishes away.  2. Take out the dirty dishes and fill the sink with soapy water.  3.  Wash the dishes.  4.  Wipe the counters.  I keep telling myself, "You can do this."  I well up in tears and think, "For cripes sake, they are only dishes! Why are you crying?"

There are so many negative thoughts that live in my head that I have to ignore.

I finish the dishes with the hopes of getting a feeling of accomplishment.  The feeling never comes.  Instead I try to get over my thoughts of the night before.  I sat and listened to the keynote speaker at the Got Dreams Awards and I hear her say that if we not only listened to our kids when they are young.  Who is listening to Sam besides me?  I need people to listen that can really do something about Sam having a difficult time at school.  Who is going to be the one that changes the course of my son's life and well being?  Who is going to step in and say to Sam, "I am going to make it better."  The evening ended with me running into a guy who asked me if I am still working at Hillside?  "No", I replied, " I was working with a temp agency and the Peaceful Initiative Committee at Hillside and I am no longer called."  I walked away hearing his response, "That is too bad."  I was getting a lot out of my involvement and now it is gone.  A person with a Mental Illness is not lazy and we do want to work.

I start cleaning off the kitchen table and I sort through Sam's dittos from school.  I went to college and received my teaching certificate and I worked as a teacher.  I know that these dittos are ridiculous.  I dislike Sam's school all the more.  OK, what's next? Oh yeah my room. I try my best to make my bed to only lie in it a few minutes later to sleep and block out the world.  This is the part where I totally get Sam sleeping in school for avoidance.  He is communicating to the professionals that are there to help him, "I don't want to do this.  I am not happy."  It doesn't take a rocket scientist to figure that out.

My day ended with me feeling better around 5 pm.  This is how my illness works when I am not feeling well.  The mornings are scary, the early afternoons I have to fight to pull through.  The chains of the illness let go at night.  I can get things done.  Days like this is when I know that I am truly a survivor.

*I wrote this a couple of days ago when I was having such a difficult time of it.  I feel much better now.  A very dear friend spent some time listening to me and it made all the difference in the world.  He made the choice to not walk away.  This is the ebb and flow of my illness.  It is what it is.  Now I have to get back to work helping Sam.  


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.

Teaching Self Advocacy

Sam and I are driving home from his Music Therapy session and he tells me that one of the men from school threw him into the time-out room and he landed on his behind.  His statement wasn't emotionally filled, it was more of a statement of just the facts.  The last comment of "he isn't supposed to do that" was what hit me the hardest.  Don't we teach our children that we aren't supposed to break the rules?  More importantly, doesn't research tell us that our kids with Autism don't lie?

The next day Sam shows his social worker at Easter Seals how the man didn't throw him in the room but opened the door once Sam was in the room and pushed him to the ground.  What is a Mom to do?  The phone calls start the next morning as I try to find people to help me.  I talk to people that say that the school needs to take care of it.  Conversations fill the air with other Moms telling their stories of how their kids are mistreated.  There are Moms that even tell me that I should bug my child with a wire to record actual events at the school.  I am tempted.

This is what I hear Sam say.

Two days later I am driving with Sam and he changes his story.  He tells me that he doesn't remember what happened.  My ears perk up and my instincts start churning with a feeling that doesn't feel right. The next day I start asking him questions and he informs me that the Principal sat down with him and told him that what he is saying about the man pushing him is not true.  I send an email to the principal with a cc: to the superintendent of the school.  She emails me back saying that she had never talked with Sam.  Sam sticks by his story.

People ask me, "Does Sam ever lie?"  The answer is no.  There has been a few times that I recall where he tries to tell a white lie but it never really works out.  He has to tell the truth.

All of this hurts.  I will be sitting trying to be rational and pain will well up until I double over in tears.  My inner child is screaming as I stuff my face with food until I get that feeling of getting an internal hug.  Sam seems to be OK but I really don't know.  I talk with Sam about maybe moving going to a new school and he asks me, "What happens if it is worse?"  This doesn't sound like a kid who is telling stories.

For now all I can do is talk about the pain.  I know that there is a huge hole in the school system for our kids. Our kids with Autism understand the world differently than our neurotypical selves.  We learn how their sensory systems and wiring of their brains make decoding the world and our rules so difficult. Haven't we heard how Temple Grandin says that she feels like an alien visiting our planet?

The school sticks by their conviction that if Sam gets out of control that he is isolated from his peers.  I am taught that our kids behaviors are a way to communicate their needs. I am also taught that if something doesn't work you go back and try something different.  It doesn't seem fair to place all the responsibility on an eleven year old child that needs support to learn how to follow their rules.

For now I will tell the school that I no longer support their behavior plan.  I will advocate for Sam to start having a voice and for him to be able to tell the school how he feels.  I will teach Sam that he is important.  I will show Sam through my example that it is important to be heard.


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.


*Mina made me the cover for my kindle.

*The photo that I use for my background was taken by Sam.

My Kindle

Sam and I are on SSI and SSD and I can’t afford many of the luxuries that others may be able to afford.  Getting assistance is a hard thing to admit because of the guilt associated with the thoughts of people saying, “You are the reason why our country is a mess!  Get a job!”  How do you say to a prospective employer, “Hi, my name is Debra and I have a mental illness and my son has Autism?”  That isn’t really what I would say but how do I keep a job when I am always asking for time off?  Any mom out there that has a child with Autism understands what I am saying. 

I have spent the last eleven years researching for my book and I started my blog to get my written word out there.  There are countless times when I stand in front of the many binders filled with research and feelings of defeat wash over me.  How will I find anything?  I can sit for hours as I scan in papers and try to figure out what name I can file it under in my e-book so it can be retrievable.

What I am leading up to was my desire to buy a Kindle.  I saved all of my family reimbursement money to buy one.  I am an avid reader and I wanted one place to keep all of my research. I can now add my kindle to the list of my wordly possessions that include my car, computer, TV, phone and Sam's camera. It is really all I need.

I took a break from reading to learn how to knit.  It sounds silly but I met a wonderful woman who was willing to teach me.  I wanted to learn how to make throws to donate to women that are going through Breast Cancer.  I remember the cold making a home in my body as the chemo meds dripped through my veins.  I traded reading for knitting as I sat with Sam through all of his appointments and times when I am the only one to supervise his activities.  I needed a break from all of the words that danced around in my head.

I am now able to knit so it is time to get back to my research.  I want to read A Thorn In My Pocket by Temple Grandin's Mom, Eustacia Cutler.  I am having a hard time spending the money for my first book so I downloaded the free prologue.   I started reading and it was clear to me why I took a break from the written word.  This book is going to be painful to read. 

What got me was how she talks about Temple’s siblings and their request to not be mentioned in the book. My question was answered of why Temple Grandin never mentions her siblings.  It is my wish that they know that their sacrifice has helped the entire world better understand what Autism is. 

Ms. Cutler continues to talk about the holes in her life and I totally get it.  My first mental breakdown was when Mina was six months old.  I had gone off my meds to protect her during my pregnancy and the Bipolar and Post Partum Depression got a hold of me.  I separated from my marriage and moved into my parent’s home.  I was unable to take care of myself or Mina.  The only thing I remember of Mina‘s first years of life was her first birthday.  Images flash in my head of family guiding her to open up the presents as I sat on the couch unable to hold her or help her.  This is a painful memory as I put up my self protective shield so the guilt doesn’t get me. 

I try not to think of what my life’s experience has done to Mina's psyche.  I can only think of good things as she lives her life and how she works so hard to get what she needs.  She is a part of the many siblings that get what having a disability means as she stands up for others that are unable to stand up for themselves.  I marvel at her ability to shine against diversity.  I was unable to buy her clothes so she learned how to sew and designs clothes of her own.  I love her beyond belief and am going to miss her when she graduates to the next frontier of her new life. She is my rock that keeps me grounded as life’s twists and turns shake me from the unpredictability of living life with Sam’s and my disability.   Mina is nothing short of amazing and I thank her for letting me share my thoughts of raising an incredible daughter. 

I am only on the first page of the prologue and already I am itching to write.  As I read tears streamed down as all of the memories started breaking down my protective wall.  This is going to be a tough one. 

Sincerely,

Debra Pierce Bellare

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.


*Mina made me the cover for my kindle.

*The photo that I use for my background was taken by Sam.

My New Normal

I was having a conversation with a good friend and he was talking about how I talk down about myself at times. I look at him with the response, “What?  I am happy.  What do I say?”

What I talk about is my hair before cancer.  I have to be honest, the two things I loved most about myself was my hair and the other part of my body that became disfigured because of cancer.  I look at my scar that is about four inches long and I sometimes long for the days when I felt beautiful. 

What I tell others is that beauty is on the inside and not the outside.  I really truly believe this but somehow I have a hard time turning this advice around to myself.  All the years of abuse and being told I am not good enough are difficult things to erase from my self talk. 

As I talk to my friend about my past life before cancer I really think about how I feel about looking different after cancer.  My life before cancer was filled with dangerous relationships and self harming.  I used my beauty to attract dangerous people because I needed fast self affirmation that I was good enough for someone.  Being Bipolar meant that I loved fast and hard. For the most part that feeling of love was mostly lust and a wish to be loved.  How I was before cancer really got me nowhere.

I believe in divine intervention as everything stopped when I crumbled after chemo.  I get to start fresh after hitting rock bottom like I have never hit bottom before.  It took me two years to crawl out of that evil hole that tried to wrap its roots around me.  I would sit in group week after week with my dark hoodie wrapped around my head while tears were shed as I would talk about my wish to get better. 

Today I think of my cancer as a rebirth.  Today I am better than I have ever been before.  I am working with my new normal.  I will learn how to look at my scar as a sign of survival because as of now I am four years cancer free and I am able to function outside in society.  I am victorious as I fight for my son and his ability to learn positive affirmations about himself.  I have a beautiful daughter who is about to go out in that big open world.   For the first time, I am not lonely and I don’t lust for that self affirmation from somebody else.

It is now time to work on myself.  I need to look at myself and say that I am beautiful.  I have to fake it until I make it.  Because of my dangerous behavior, I lost the friends that I had before cancer.  I look forward to letting the new friendships grow that I now have.  I will not jump into a relationship for self affirmation.  I will wait for the day when I meet that friend and after time realize that it could be more.  I will learn how to love myself first. 

*Sam took this photo for breast cancer awareness.



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.

Restraints, Time-Outs and Suspension

48 hours ago I was making dinner while I ask Sam the million dollar question, "How was your day?"  The response was, "I didn't have a good day."  "What happened?"  "I don't want to talk about it."  I can only imagine what happened and I felt assured that I would read in the notebook later where I would find my answers. 

I have a bad habit of looking in his backpack in the morning 10 minutes before the bus arrives.  I can handle difficult news better in the morning because I have all day to process.  Sam having homework hasn't happened yet so I don't really have a specific reason to check out his bag at night. 

I am making macaroni and cheese for my vegetarian daughter as the phone rings.  It is the Vice-Principal from the school telling me that Sam was put in a restraint.  She apologized for not calling sooner but a young man had set fire to his house and one of the victims was once a student at Sam's school.  I was doing my best to hold back the tears because nobody likes the news when a restraint has happened.  Also, the news of the tragedy wasn't sitting well with me.

I know that the restraint was followed by a time out in the Time Out room.  So if you don't know, a Time Out room is a little closet that has nothing on the walls with a big door with a tiny window that is covered with a dark film.  I know this because once I snuck up to the second floor, went in the Time Out room and closed the door and stood there.  I had visions of my son screaming wanting to get out of this room.  As a parent I am not allowed into my child's classroom for whatever reason so that is why I took advantage of the time when nobody was looking.  The room is basically a cell.

The next day I am scurrying around trying to get something done because the time is drawing near when I have to drive the 30 minutes to pick up Sam from his school.  He had an appointment with his counselor.  I arrive at the school with his 1:1 telling me that he did well at ISI.  "What is ISI?" is my question.  "In school suspension."  "What!" is how the conversation unfolded.

The next few minutes I am angry as hell.  Why didn't anyone tell me?  The phone call yesterday never revealed that he was going to spend the day away from his peers.  He was alone with his 1:1 all day.  I told the office staff to have the Vice-Principal call me as soon as possible.  The phone call never came.  While in the car I looked for a report that documented the events that led to the suspension.  I found nothing.

I did get a chance to talk with his teacher while I was waiting for his counseling appointment.  Something happened in OT and he was put in a restraint.  I am fuzzy on the events because he was possibly put in a second restraint after lunch.  His teacher went into the Time Out room where Sam started kicking her and trying to slam the door.  I was sitting in the lobby at the counselor’s office with tears streaming down my face.  She continued talking about how Sam has regressed in the last couple of weeks with symptoms of agitation and needing to be constantly praised.  I already knew that he was sleeping a lot in school.  Sam became angry because he slept during his turn at the computer for free time and after lunch he had to choose another activity.  Why didn’t anyone tell me of his regression?

So what do I do now?  I am still waiting for the phone call from the Vice-Principal and 24 hours has passed.  I understand that they are busy with everything that happened with that terrible tragedy.  It is hard to digest why a 15 year old boy would set fire to his house.  This tragedy is specifically the reason why I am frustrated with the school.  What does Sam have to do before extra supports are put in place?  Extra supports should have been in place before Sam had a blow up.  The school saw the regression.  I just don't get it.

Maybe I will get that phone call soon.



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.