Am I Autistic?

Well no, I am not Autistic but I do have a diagnosis of Bipolar.  So why am I thinking about this?  I was planning on attending an event and I became very sad because I was afraid to go because I felt like I had nothing to talk about.

As many of you are probably aware, failure to develop peer relationships appropriate to developmental level is one of the requirements that are kids, and adults, must have in order to have a diagnosis of Autism.  Many people who have been diagnosed with Bipolar Disorder also suffer from Social Anxiety Disorder.  Is this one in the same?

When it comes to conversing with people, I am a meat and potatoes kind of talker.  I lack in the ability to talk fluff.  Sometimes I stand around and listen to people talk about their new furniture or their recent trip to the Bahamas.  That is all good but my life doesn’t fit in the category of husband, having a steady job, owning a home and being invited to parties on a Friday or Saturday night.  I grew up watching my parents being invited to parties and reciprocating with their own gallant affairs.  I sincerely thought that my life would be having my kids grow up with aromas of good food and electric conversations.  I know that I am not alone and that there are unimaginable amounts of people that have unbelievable amounts of challenges.  It bothers me when I am sitting alone in my house and the feeling of lonliness creeps in. 

There have been times when my memories of my childhood keep me company.  Back in the day we could drink at 18.  We started at 16.  My friends and I would buy beer, or have someone else do it, and we would roll the beer cans down the theatre while watching a movie. We used to drive for hours on the back country roads singing songs.  I chuckle as I remember walking up the stream plastered and getting to the cow field only to have a cow come up to me and sniff me.  I literally peed my pants.  All I could see was the Olean Times Herald announcing that, “Girl from Franklinville was killed by a cow.” 

The parties were legendary and even then I had a hard time staying for the entire scheduled event.  The joke was, “It is 10 O’clock, time for Deb to have a glass of milk and go home!”  I don’t know why I craved milk.  I guess I was low on Calcium.  And then there were my parties.  The halls in our high school would ring with, “Party at Pierces!”  I felt more in control when it was my environment with all my familiar surroundings.

So where was I, oh yeah, Autism.   I have read that people on the Spectrum are more comfortable communicating with people over the internet.  Machines feel more compatible than people.  I definitely feel the same way.  I never imagined that Sam’s photography would open the door to be communicating with so many awesome individuals with the same interests. Writing this blog is freeing and lets me connect with the outside world.   I get to think, process and put down what I want to say.  The best part is the conversations that I am having with my friends from back home.  Twenty five plus years doesn’t stand in the way of solid friends that were always there for me.

One of the biggest misconceptions that people have about Autism is that people don’t want to connect with others.  I have read multiple books where people discuss how they want the opportunities to thrive in the social world.  The problem is that they just don’t know how.  Again, I struggle everyday with feelings of inadequacy as I am swarmed with multiple people as I network for a successful life for Sam.  Sam is the reason why I put myself out there and will continually put myself out there no matter how uncomfortable I become.  It is not all bad but sometimes I do find myself going home and having a good cry.

I do have friends that I absolutely cherish.  The night I was supposed to go to the event a friend called me and we talked for a very long time.  She is also a meat and potatoes kind of talker.  Once in a while I also meet with others where the conversations are delightful.  I could not survive without the support of these individuals that find the time for me.  The little things that others do for me can hold me for a long time.

As a side note, I did go to Maine to see my sister and her family.  It was one of the best trips I have every taken. 

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.

 

Being Scared

Being a Breast Cancer Survivor I am always worried that the cancer will come back.  It is just the nature of the beast.  I have talked with some people that just assume that it will come back.  I suffer from severe hot flashes from the medicine that I take to lower the chances that the cancer will come back.  Because my body temperature feels 10 degrees above normal, I have a pair of pajamas that I wear and the top doesn't fully cover my scar.  My scar is huge and it is hard to miss. Trying to stay positive I have told myself that my scar is a mark of survival.  It represents my strength and my ability to persevere.  My scar is my new beauty.

About a month ago I was walking by a mirror.  I had to step back to get a closer look.  "Hmm, has my scar changed?"  I yell for Mina, "Mina, I think my scar has changed.  It looks all puckery and it is all blotchy!" Nobody in my house goes up or down the stairs to talk so she yells back, "Yeah, I noticed that the other day!"

"Why didn't you say anything?"

"I didn't want you to worry," was her response.

Too late.  I am worried.

I take a closer look.  My thoughts turn to, "This is hideous."  Trying to remind myself that this isn't positive self talk, I really couldn't come up with anything better.  I feel sad because I don't see myself being intimate with another person because I don't feel attractive.  I shake it off and move on with my day. 

During this time Mina was busy with Marching Band and Volleyball which left me with trying to organize my time so that maybe I could possibly do something for myself.  I have to be honest and say that I was getting angry as to why I am the only one that has to take care of everything.  I became so busy that my house was a mess and the water pump wasn't working.  The landlord had to come over which resulted in a letter telling me that I better clean up the house.  "I AM DOING MY BEST AND THAT IS THE BEST I CAN DO," is screaming in my head. 

During this time I sent an email to a friend telling her my concerns to find out that I sent the message to over 900 people from the Autism Parent Message Board.  OOPS, my bad.  I told all of my friends on facebook and a dear friend told me that I now have over 900 people that are praying for me.  Another friend offered to take me to my appointment. Gotta love facebook.

With raising a child with Autism, my life will never slow down.  The added pressure of all the extra activities was getting to me.  Marching Band and Volleyball ended and I got a reprieve.  Don't get me wrong, I love my daughter's activities and I wouldn't change a thing.  For a short period of time it just got to be a little too much.

During this reprieve, I picked up the house and called the Oncologist.  I told them about the change and I was hoping they would say something like, "Probably no big deal but we want to check it out anyway."  Instead I heard, "We want you to come in and have and ultrasound and a mammogram."

Why am I so afraid?  Maybe because I have no clue how I could go through that awful experience again.  I know that if the cancer returns I will have a double Mastectomy.  The two things that I liked most about myself were my boobs and my hair.  Both will be gone. Yes my hair will grow back.  The boobs will not.

I am fortunate that I live near a YMCA that has an incredible Live Strong Program.  It is an exercise program for individuals going through cancer treatments.  I was part of this program three years ago.  I stopped by the director's office and told him my worries.  "Well," he said, "Don't worry until you have something to worry about." 

I am also fortunate to be part of a group of woman called "The Brown Baggers".  We meet for lunch on Fridays and different topics are discussed.  I had the opportunity to voice my concerns with all the ladies chiming in saying they would be there to take me to my appointment.

I am no longer alone.

I am a big snoop and I found my daughter's college essay.  Her words are a reminder that for every bad there is an opposite good.  I would like to share the last paragraph. 

Slowly my mother’s hair began to grow back but she still wasn’t getting any better. It came to the point where I never thought that she would be happy again. Then one day I came home to her cleaning the entire house and I knew that she was finally going to be okay. My family is now part of a new society filled with other survivors, opening my eyes to how powerful cancer can be. Most importantly though, it has showed me how limited it really is. Our house is now filled with pink ribbons, which are no longer reminders of the sickness but a symbol of our strength. My mother going through cancer has made me a braver person but it has also changed my perspective on life. I have overcome the fear of death itself and can focus on what really matters in life. I have the courage that I didn’t have before to take the challenges that life gives me and to make the best of them.  My mother has been in remission for three years now and I cherish every moment I have with her.

I am one blessed Mom.

Definition of Mental

1.a: of, relating to, or being intellectual as contrasted with overt physical activity.

2.a: of, relating to, or affected by a psychiatric disorder <mental patient>.

b: mentally disordered, mad, crazy.

I choose being an intellectual as my definition of being mental.

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

 

The Senior Game

You are my sunshine, my favorite sunshine.  You make me happy when skies are grey.  You’ll never know Dear how much I love you.  You are my sweet Mina girl.

My daughter informs me of the Volleyball Senior Game night so I can put it in my schedule. I get a warm fuzzy feeling while I mark this much awaited event.

Mina’s Senior year will be filled with what I call, “the rights of passage”.  We have already finished her Senior photos.  That day when her photos were shot, the air was filled with whispers of hope and promises of good things to come.  I relish in these events and when she is off to college, I will hold these memories close to my heart.

The big day arrives and I check in with Mina as to what time I need to be at the game.  She informs me to be there at 5:30.  The day is filled with working out and trying to clean and running Sam to where he needs to be.  At 4:30 we arrive at Hochstein for Sam to work with his Therapist.  I run into a Mom who often crosses my path making me think that there has to be some reason why we meet in so many different places.  I want to stay and visit but Sam and his Therapist come out of the Music Lab.  I look at the clock and panic, “I would love to stay and chat but I am late!’

I head home driving way to fast.  I am kicking myself for not being ready.  My negative thoughts start reverberating on how I never learn to better manage my time.  My train of thinking changes tracks to, “Mina does not deserve for me to be late.”  Actually this thought was screaming in my head.

I drop off Sam at the house where his respite worker was waiting.  I rush into the house, get changed and slab on makeup.  The negative thoughts continue, “If only you were organized.”  I run out the door while looking back saying, “See you later!”

I hop into the van and arrive at the school at 5:33.  I run to the doors of the school.   My pounding footsteps are in time with my chant, “I can’t miss this!  I can’t miss this!”  I continue running down the hall feeling the dryness in the back of my throat.  A million thoughts go round and round.  Memories flood through the gates of being bullied by the Moms at the old low-income apartment complex.  The pain resurfaces of having to leave Mina in the care of others while I escaped to the playground to keep Sam and me safe.  Mina had to experience the nightmare of her friends losing their parents because the ones that were supposed to take care of their children chose drugs instead.  It was Mina who got the Renter’s Guide and networked with her friends to find the place that we have now. 

I walk into the Gym to bypass the parents to sit with Mina.  I climb up the bleachers and sit with my daughter and her friends.

"Mom what are you doing here?  Why aren’t you sitting with the other parents?” 

 "I want to sit here with you,” I lovingly reply.

I open the program and read what Mina wrote.

Mina, defensive specialist, is hoping to attend Philadelphia University for Architecture.  In her free time, she enjoys designing/sewing clothes and being part of the Color Guard.  She loves all music - except country!  One of her favorite memories was dancing at last year’s team bonding party and OF COURSE beating Hilton!  Her inspiration comes from her Mom who has showed her the strength and determination necessary to always achieve greatness.

“Oh Mina, this really makes my day.  Thank you,” I say while fighting tears.

“Your Mom is so nice,” her friends respond in their beautiful sing-song voices.

I get my fill of the kids.  I say my goodbyes and sit with the parents.  I am not at many games and I had a lovely chat with a husband and wife.  We laughed as they were telling me that they saw me run into the school.  I sat and became frustrated because I thought my camera broke.  I was pushing every button to discover that I had the screen off.  I asked the husband if he would take pictures for me as I hear, “We would like to introduce our first Senior, Mina Bellare and her Mom.”  Crap, I give the guy the camera and walk over to Mina.  The announcer reads Mina’s incredible message as we both walked out onto the floor.  Mina and I listen as her friend reads her well wishes while we all had tears in our eyes.  We had our picture taken and I go and sit back down to wait for the game to begin.  I watch as Mina starts in the game.  The excitement builds as I see her hit the ball over the net.  “Woo Hoo!  Way to go Mina!” 

I made it and I wasn’t late.

Bragging rights:

Mina with her freinds before the game:

The moment we had been waiting for:

Mina's Senior poster:

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.

 

Would I change the diagnosis?

Lately I have had this question sitting in my mind.  If my Higher Power came to me and told me that I could choose to take away Sam’s diagnosis, would I do it?  The stipulation would be that my new friends that I have made in the Autism Community would have no memory of me.  As a trade off, Sam would have no memory of the challenges that he struggled with daily.  My Higher Power, with a last minute thought, would promise me that Sam would have every opportunity that his sister has had.  Sam would experience the world as a neurotypical.

The reason why I am thinking about this is because Temple Grandin’s words that she would not change her diagnosis echo in my head.  Her message is clear.  In today’s society people like Albert Einstein would most likely be diagnosed with Autism.  He did not speak until he was three and he was socially aloof.  Temple Grandin speaks about how if Autism didn’t exist, people like Einstein wouldn’t have made there mark on society that shapes who we are today.

I don’t worry about my friends losing their memory of me because they will know no difference.  Besides, while being undiagnosed with Bi-Polar, I have lost friends before.

I think of my past friends as trying to accept me as a dysfunctional erratic person.  My friends had to come to the fact that, for their sanity, they had to let me go.  I live with the shame of my past while giving myself permission to realize that it wasn’t my fault.  It is nobody’s fault.  If I could talk to them today I would say how sorry I was and I hope that they are healthy and happy.  One of my things that I hold near and dear to my heart is my friend telling me, “We will always have our memories.” 

So if I so choose, I go on living with the memories of my new good friends.  I will have the remembrance of being too tired and leaning over to a friend explaining that I couldn’t make it through the conference, with her leaning back saying, “Yes you can.”  I would miss the lengthy discussions of what we know is best for our children.  I would have to look for new ways to stretch my intellectual mind because my friends and I no longer would discuss what we want for our kids and how to get out there and get it. 

So my Higher Power continues, “If you change the diagnosis, I must warn you that Sam’s Sensory Integration disorder will be gone.  Sam’s acute ability to see will diminish and the photographs that he has taken will disintegrate.” 

I would remember walking with Sam taking pictures while constantly being surprised how good they are.  I will follow my passion for photography and find the beauty on my own.  I would be on the sidelines of every game and every concert with my camera in tow.  I would join the booster clubs and be in the background while Sam knew that I was there for him without me having to lead the way.

I could selfishly take away the diagnosis and think of what I could do with the extra time on my hands.  I would no longer be driving Sam around for hours at a time.  Music Therapy and appointments with Doctors and Therapists would be nonexistent.   Upstate New York Families for Effective Autism Treatment’s (UNYFEAT) Electronic Kids Club and Science Club would fade away while Sam was making friends on his own.  I would have to say goodbye to conferences and speaker series and the networking that builds more friendships.  I would essentially be giving up my life and starting a new one.

So, would I change the diagnosis?  Why yes, yes I would.

Now I move forward because I know that this will never happen.  I can and will keep my new friends.  I will be there for them as I know they will be there for me.  I will continue to foster Sam’s interests, to find what works and make it happen.  I will drive for hours while making sure he makes all of his appointments.  That is just how us Moms do it.

I was driving home with Sam from Electronics Kids Club one night and he asked for his camera.  He takes the camera and starts taking pictures of the traffic without the flash on. 

He shows me pictures, “Look Mom, doesn’t that look like fireworks?” 

“Why yes it does look like fireworks.”

A moment passes, “Look Mom doesn’t that look like the lights in the arctic circle?”

“You mean the Aurora Borealis?"

I’m stunned at the response, “Yes that is what I mean."

Sam starts experimenting with the camera and starts moving it in a circular motion while taking the picture.

These are the kind of conversations that I would miss the most.

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.

Surviving

My daughter was off of school today and this morning she walks into my room and flops on the bed.  I smile because this is my favorite activity of hers and it makes me feel loved.  I strike up a conversation with her explaining that I was not happy with my last post for the blog.  I read it to her and she says, “Mom, you are not talking about the meaning of life.  You are talking too much about Sam.”  Her constructive criticism is greatly appreciated and it got me thinking, “What is a blog?”  I am new to this venue and for me it is about educating others in a meaningful way without boring them to tears.  I have high hopes of readers making it to the end and walking away with some knowledge of the struggles that I face.  Maybe I can make a difference.

Today was a tough day for me.  Actually I have been struggling for the past 2 weeks. 

When symptoms of being lethargic and insomnia hit, I panic.  I get angry because I don’t want this illness that often time sets roadblocks to my happiness.  At these times I find it difficult to be positive and creative. 

I start my day with a good conversation with my daughter but it is not enough to overpower the negative.  I make it to the gym and skip weightlifting because I don’t have the energy to lift them.  Instead I swim.  I try to stop my thoughts but the tapes filled with words crash in my head.  I paddle back and forth in the pool while thinking that these are the times that I lose my friends.  Invading thoughts of sitting in a Court of Law fighting for custody of my child give me no relief. Why do these memories haunt me when I am not feeling well?  I just don’t know.

Mental Health statitistics state that that 70% to 80% of Parents with Psychiatric Disabilities lose custody of their children.  There is the Safe Families Act that really does not protect families at all.  Children are taken away because they are not the “good enough parent”. These are things that I am trying to find the courage to talk about without completely falling apart.  I am just not ready.

After my swim I go in the shower, pull the curtain and quietly sob. I close my eyes tight while my shoulders heave.  I regain my strength, get dressed and hurry home to make my lunch.  I am in a rush to go to The Breast Cancer Coalition of Rochester to join my fellow Brown Baggers.  My need to sit and just stare at the wall is overpowered by the need to thank a friend for her support.

I make my lunch, hop in my car and stop at the corner gas station to feed my daily addiction of caffeine.  I have been stopping at this particular station for three years now and I enjoy the familiar banter.

“Hi, how are you today?” followed by “Fine, and You?” are the customary greetings.  Today was different because I forgot my fork for lunch. 

I get my beverage and put it on the counter, “I am going to a luncheon and I forgot my fork and now I have to go home and get it and I am late.”

“Well, we have one.  Would you like one?”

“Sure, that would be great!” I reply as I chuckle doing my best to fake that today I am carefree with no worries.

“Are you going to a school luncheon?”

“No, I am going to the Breast Cancer Coalition of Rochester where every Friday we meet for lunch.  The facilitator asks a question and we all sit and answer the question while we eat.”  I am very proud to be a three year cancer survivor so I add that in for extra benefit.

The mechanics eyes light up, “My wife is a six year cancer survivor.  I don’t think she knows about that.  I will have to tell her.”

“Please do”, I reply. “She would be a welcome addition.”

I hop in my car with a good feeling that maybe today I did make a difference in somebody's life.  Maybe this is the start of an upswing. 

My fellow Brown Baggers are the best bunch of gals around.  We laugh and we cry.  These woman know that I have a Mental Health diagnsois and that I am raising a son with Autism. This is a place where I am free to talk about whatever I want.

This was today’s Brown Bag Question:

This month espeicaly, there is a lot of language around those with a diagnosis of breast cancer.  Survivor, Warrior, Thriver.  How do you feel about these words?  Do you identify with any word in particular?  If not, how would you like people to refer to you and why? 

My reply, “Today I am a survivor of my thoughts.”

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.

Steve Jobs

This past Thursday was a day like any other week day.  I get up, get the kids to school and run around like a chicken until they get home.  There are phone calls to make, letters to write and photos to upload while I try to wash dishes.   I spend part of my day getting back to people on facebook finding a common theme on people’s posts.  I read, “Steve Jobs, founder of Apple, dies of Pancreatic Cancer, Age 56.”   My initial thought was, “Shoot, this guy died of cancer.  When is my cancer going to return.”  It is not a question but a statement. 

I spent some minutes thinking and my thoughts drift, “Shoot, who is going to take his place and will they be able to help our kids with Autism.” 

Sam has an interest in photography.  In my eyes this makes Sam like any other mainstream kid who has activities that they find interesting.  Being his Mom I have to say that his pictures are aesthetically pleasing.  He works every Tuesday on a Mac with his Music Therapist either creating music or editing his photos.  His life is an open ended question where we will continually work toward a positive future. 

Sam is not like the other mainstream kids with his inability to regulate himself and make his life predictable.  I worry about how he is going to make his schedule, take his medications and just be independent.  I am on a quest to get Sam an iPad and have it paid through Family Reimbursement.  He has an interest in computers and I am confident that his life will be better once we navigate and learn this wondrous piece of equipment.

With Apps like Time Timer, I can look  forward to the day where my conversations with Sam are not filled with, “Mom? How many more minutes until we….?”  My life as a talking clock can be replaced by more productive conversations.  Sam and I can be a team collaborating on what chores he will be responsible for without the aggravation of using a pen and paper.  The list is endless of possibilities to make Sam’s life better.

I spent much of my day learning who Steve Jobs was and how he has influenced others.  Creative posts revealed the sadness with his passing.  The Autism parent message board was filled with discussions on how to get an iPad.  Blogs were written with messages of gratitude on how the iPad has helped their children become more independent. 

Our story isn’t written yet on how the iPad has helped Sam.  Stay tuned.

Rest in peace Steve Jobs.  You will be missed.

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

"It is what I make of it"

I recently was sitting at Brockport University getting ready to hear Temple Grandin speak and a mom sitting next to me asks how old my son is.  I sit and think, “Is my son eleven or twelve years old?”  My mind continues to churn, “It is now October 2011 and May has already passed so he is eleven, right?”  I shake my head trying to figure it out.  Later, sitting at my desk, my thoughts drift back to Sam being a tween.  Sam is not home so I shout, “Hey Mina, is Sam eleven or twelve?”  She yells back, “twelve!”  Shoot, no that’s not right.  He will be thirteen next year.  NO!  I’m not ready!  Panic sets in and I put it aside.  The thought creeps back in again and this time Sam is home. I shout from my office because I am too lazy, or just too tired, to get up, “Sam how old are you?” Sam yells back, “eleven, why?” Relief washes over me, “No reason.”  This is a classic example how my bipolarian brain (yes I made that word up) blocks my thinking.  Am I forty-six years old or forty-seven?  Hmmm I can’t remember.

Having a growing child on the spectrum scares me.  I have to think that it probably scares most of us.  I have a hard time saying this out loud because I don’t want to scare the folks that have the little ones.  I don’t want anyone to think that there isn’t a bright and cheery future. “It is what I make of it” is my mantra. 

I have many thoughts surrounding having my young child grow up.  Puberty has officially set in with the future of a sweaty young man needing deodorant looming in the near future. I wonder if he will have school dances and friends to hang out with.

Reading about having a tween on the spectrum doesn’t alleviate my fears. I just finished Chantal Sicile-Kira’s book Adolescents on the Autism Spectrum.  Chantal talks about the education system and the lack of budget money.  She explains how schools spend a large chunk of money on the early years where there is the greatest, “Window of Opportunity”.  I know that the earlier the child receives services the better off that child will be. Does that mean that when a child is a teen and young adult the learning stops?  Are the windows closed and the doors locked?  I can’t even speak about the tracking system in our schools because honestly, I don’t understand it. 

My child is an important individual who deserves to receive the best supports possible. The teen years is when the neurotypical child learns social skills, determination skills, how to navigate systems independently and most importantly, to self advocate.  My thoughts turn to Mina who notified me that she doesn’t want any help on her college application essay because she wants to do it herself.   My child, being on the spectrum, needs to be taught all of these things.  Who is going to teach him?  The answer for me is all of the people that I choose to be on his team that work with him week after week.  The people that work with Sam independently from school are the ones that are going to have the greatest influence.  I don’t have a total negative opinion of Sam’s school; it is just that I have to fight so hard to push the education piece.  I hold on tight to my knowledge that human beings are life long learners.

I look forward to Sam’s future.  I don’t see it as a dismal place with no job and no friends.  There are programs like Project SEARCH that give our kids a fighting chance in the employment world.  I know in my heart that Sam will have a great life.

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.