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.

Will the struggles ever end?

I have spent the last few days ecstatic because my seventeen year old daughter now has her own car.  The endless trips back and forth to the umpteen million things that she does have ceased to exist.  I was trying to take a few days to relish in my freedom and get some much needed rest.  I was just about asleep at 2:00 in the afternoon when the phone rings, "This is the Vice-Principal and Sam has been kicked off the bus."

"What!  Ok, what happened?"

"He got on the bus and had a meltdown and the bus driver told him to get off the bus.  He is sitting here with us."

I am not very proud to say that I started yelling.  That is how I deal with disappointments.  High pitched angry words came out of my mouth saying that I refused to pick him up and they were to call the transportation department and get a bus out there immediately.  A return phone call informed me that the transportation refused to send out another bus. 

This would not have been a big deal if Sam went to our school district.  Sam has an hour long bus ride to and from school every day because they have the expertise to handle his needs.  I also have the sixty minute round trip car rides to drop off medications, CSE meetings, team meetings and all the times I pick him up to take him to appointments.  My gas bill is in the hundreds for a month worth of driving.

The phone call woke me up to my reality.  I told the school that I had to help Mina get her car inspected at 3:30 and I would arrive after that.  I informed them that this was the best I could do. 

I called my local advocacy center and asked what my rights were.  I still don't really know.  What would have happened if I didn't have a car?  Would I lose a job if I was working?  Would Child Protective Services be called or even the police if I refused to pick him up?  I will always pick him up but I am sure that there have been the parents that have been so worn out that they refuse to bail out their child.  I had to laugh when the Vice-Principal asked me if there was someone I could call.  No, there is nobody.  It is just me.

I call out to Mina because it is time to go to get her car inspected.  She follows me to the Inspection Garage and I leave to pick up Sam.  On the way the CSE Chair calls me.  For anyone that doesn't know, the CSE Chair basically is the CEO of your child's education.  Again I start yelling.  I am screaming away my anger on how my district can't handle my child.  My frustrations spew out like a volcanic eruption.  The result of my tantrum was me gulping for air as the sobs took over.  The CSE Chair wanted to meet the next day to make sure that I was going to be ok.  I was invited to lunch.

I arrived at the school with my forlorn face with a group of people wondering what my reaction was going to be.  I sit down next to Sam and he tells his story about how he was teased in the morning and he was scared to get on the bus to go home.  I explain to him that he is getting older and it is now time for him to work on his reactions to his peers.  I can't remember what my exact words were but I did my best to explain that I could only do so much and it was his turn to regulate his emotions.  A light bulb went off as I realize that I was sitting next to my adolescent child compared to the younger child I had always thought him to be.  There is so much work to do with his private counselor that he visits every other week.  I feel overwhelmed.

Sam and I leave and head out to his Music Therapy appointment.  I get him something to eat while the conversation continues that there will be consequences if I have to drive out again to get him.  The Music Therapy lesson went well as Sam processed the events that occurred in the last seven hours. Together we all make a plan that the stars earned if he does well for the rest of the week on the bus will be toward knew goggles to replace his old ones that broke. He is in full agreement as we head home.

I spent the night replaying everything in my head over and over.  I feel remorse as I recall my angry words.  E-mails are sent with my apologies and a note saying that I know that it was not the school’s fault.  Thoughts revolve over the main theme of me having to stop going over the top with my reactions.  Isn't that what I am trying to teach Sam?  I make a plan that when I see my therapist I will ask her to enroll me into the Dialectical Behavior Therapy program.  I have to learn how to do better.

The next day I meet the CSE Chair for lunch.  I apologize for using her for a punching bag.  I admit that I have issues around the time when Sam was kicked out of the district.  Further explanation described my hurts surrounding the time when three people were pinning Sam to the floor waiting for the police to make a mental hygiene arrest.  Sam was six years old and in first grade.  He spent sixteen days in the hospital and he still recalls that event as the time he was bad.  There is no explaining to him that he is not bad.  He just won't accept the words saying it was not his fault.  My heart aches as I wait for the day when his light bulb will go off with the realization that he is a good kid.

For now I will stop writing because it just hurts.  It is time to think about happier events.  Christmas is coming and there is much to be thankful for.  Thank you for reading my stories.

The next time that Sam has a sever anxiety attach and gets kicked off the bus, the district is responsible for getting another bus to pick him up.  This is the promise that was made to me by my son's CSE Chair.

Will the struggles ever end?  No, but without struggles there would not be estatic joy with the successes. 


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 Best Kind of Different

I started this blog because I love to write.  I have great fun writing and saying words such as serendipity and luminous.

I also have words that I dislike.  I think of the word through.  It looks all jagged and rough to me.  Unfortunately, this word is in the title of my other blog.  I am weird like that.

As much as I love to write, it is equaled by my love of the written word by others.  There are countless hours that I spend reading while waiting for appointments or sitting at a play place.  During the summer Sam fishes for hours and books keep me company.  Memoirs are my favorite and I devour them.  Human behavior fascinates me.  My favorite subject is Autism.

On my last trip to the library I was appalled by the lack of books about Autism. 

"We are changing and updating our inventory to stay current," was the response I got while asking where all the books went.

My thoughts ranged from "What?" to "No! You can't do that!"  How are we going to learn about Autism as a culture if you throw out the history?  I think of the very famous book, The Siege, written by a Mom educating the masses of what Autism is.  The Siege is the book that educated me on the term "refrigerator mother".  In 1949 Leo Kanner, who wrote about Autism, was calling attention to what he saw as a lack of parental warmth and attachment to their children diagnosed with Autism.  Apparently he thought the fault was on the mother.  I can only hope that history doesn't repeat itself.  Totally bummed I settled on two books.

The first book is Cowboy & Wills: A Love Story by Monica Holloway.  It is a true story about a boy and his dog.  The writer eloquently wrote where the words pressed me forward to read more.  I finished the book in one day.  I can't critique this book because I don't want to spoil the experience of reading it.  I can say that it is one of the best books on Autism that I have read. 

The next book is The Best Kind of Different written by Shonda Schelling.  The book was at first a disappointment.  The Schillings are a baseball family with a bank account in the millions.  My initial thought while reading was that I can't relate to wealth.  My OCD tendencies will not let me quit reading a book because of an obsessive fear that I might miss something so I continued reading.  

I stopped dead when she received her son's diagnosis with the Doctor advising her to not put the diagnosis in the school file.  I just couldn't believe that a professional would say that.  I have chosen to educate my son about his Autism and he doesn't feel any different.  He accepts his diagnosis as part of himself.  I remember the time when Mina, Sam and I were walking and I was talking about her being a neurotypical teen. She asked me what it was and told her that it means she doesn't have Autism.  My statement was immediatly followed by Sam's cheerful response, "I have Autism!" 

I read on to learn that the writer chose to educate her son on what Autism was and how to adapt to the diagnosis.  I know parents that choose to not tell their child about their Autism diagnosis and that is ok.  All of the reading that I have done by writers diagnosed with Autism say that they are happy that they know of their diagnosis.  This is the reason why I told Sam.  There is nothing wrong with having an Autism diagnosis is my philosophy.

The confusing part to me was her words, " A diagnosis of straight Autism had seemed off.  The profile of kids with Asperger’s fit Grant perfectly."  She talked about the inability to understand social cues and sensory issues.  She continued talking about wandering and being fearless.  The list goes on with my thoughts drifting to, "That's my kid and he isn't diagnosed with Asperger’s."  My understanding of Aspergers is an early acquisition of language and a high IQ with all the other things that go along with an Autism Spectrum Disorder.  I have read that some want to get rid of Aspergers, PDD, NOS, Autism and have everything under Autism Spectrum Disorder.  It is all very confusing and professionals that I have met say that the Asperger population will lose out on much needed assistance because they will have too high of an IQ.  Some say that they are changing the criteria to save money.  I don't really know.  I just wonder if a millionaire raises money for Asperger's does the money go to the rest of the population of people diagnosed with an Autism Spectrum Disorder?  I probably think too much.

Shonda writes about her strategies of raising her son.  She used the 0 to 5 reaction scale with five being a call to 911.  If her son was screaming she would ask him to rate his response.  I thought that was interesting.  She also talked about the "social consequence map"  where there are four columns (1) my action, (2) how I felt, (3) how others felt, and (4) consequences.  I really think that her ideas in the book could be useful for Sam.

The last part of her book she describes her depression.  She was totally honest on how she dealt with her frustration of raising her son while not knowing that an illness was attacking her ability to cope.  I am now a fan of Shonda Schilling.  Not only is she a fighter for Autism, she is a fighter for Mental Health.  She is my kind of lady.  Besides, I am in full agreement that my son, diagnosed with a Autism Spectrum Disorder like her son, is the best kind of different.

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.

Total Relief

I woke up today with the realization that my oncologist appointment had finally arrived.  I was scheduled for a mammogram and ultrasound to check out my scar that had drastically changed in the last four months.  In the last few days my Bipolar had swung me in a downslide and I was patiently waiting for life to give me a break.

I got dressed, treated myself to McDonalds and went to my appointment.  I arrived at Strong Hospital at 10:00.  I walked the familiar path to the Wilmont Cancer Center.  I checked in and waited.                  

"Ms. Bellare?"

"Yes?"

"Come with me."

I followed the girl to the dressing room as she continued saying her practiced speech while she put on the hospital bracelet, "This is your gown. Did you put deodorant on today?"  Darn.  I took the wipes and got ready.

I could go on an on about getting squeezed and all that but it really isn't that bad.  No big deal.  The technicians took four pictures total and told me to wait while the radiologist looked at the pictures.  I knew that if he wanted more pictures I was in trouble. 

"Ms. Bellare, you are all set.  I will show you to the ultrasound room."  So far so good.  I sat on the ultrasound table and read my book.  This really nice woman came in and explained the procedure.  Again, no big deal.  I couldn't look at the ultrasound screen because it all looked like lumps to me.  She left the room to talk to the radiologist and came back, "You are all set.  The radiologist said that if you are concerned about the blotches on the scar you can go see a dermatologist."  My reply as I smile, "That’s ok.  Nobody is going to see it anyway."

Next on my list was my Autism support group.  I was a few minutes late so I sat down during introductions.  I got to tell everybody that my daughter was accepted to Philadelphia University.  I continued with the success of my son on the bus.  I was all smiles as I talked about Sam's photography.  I was very chatty and I continued with my story of how Sam came home yesterday to talk about how much he likes his assistive tech device at school.  I never mentioned that I have been desperately trying to get my medications filled for the past few days.  It wasn't necessary.

After the group was finished I was off to see the Psychiatrist.  I knew I was in for an earful because I cancelled my last appointment because I chose to work.  I had waited all day yesterday to hear from the Psychiatrist.  Hour after hour passed until 3:00 when I answered the phone to hear the Psychiatrist tell me he refused to fill my prescription.  I immediately called my General Practitioner and the nurse explained to me that she was doubtful that she would fill it.

I was yelling at this point with the nurse trying to stay calm, "I don't appreciate you yelling at me."

"I'm not yelling!  I am pleading with you please someone has got to help me!"

I hung up and called back the psychiatrist office to yell at the receptionist.  He put me on hold.  A woman came on the line, "Hello, this is the Doctor's receptionist.  He can see you at 3:00 tomorrow."  Not my proudest moment.

So today I stood in front of the receptionist.  "I am sorry I yelled at you."  He shrugged.  "No. Seriously I am really sorry.  Please accept my apology."  He shrugged.  "Please I'm begging you.  I will not forgive myself unless you forgive me."  His reply, "I really appreciate that."  Good enough for me.

I sat down to wait for the inevitable.  "Ms. Bellare?"  I walked down the hall with the Psychiatrist.

"So Ms. Bellare, What is more important?  Money or your drugs to keep you well?"  I just looked at him.  Are you kidding me?  What kind of question is that?  The answer is both.  How do you choose? 

I sat in his office and told him about my life while thinking that this guy saw me every month for two years while I was in a semi-catatonic state trying to get well from a debilitating bout of depression after my cancer treatment.  He has seen me climb out of the depths of hell to become a functioning person in society.  All I wanted was for him to give me some credit for trying to work.  I didn't get the credit.  I make an appointment for six months with the reminder that next time he will not be so kind.  I quietly answered, "Got it.  I promise."

My day rounded out with Mina and I looking at a car for her to get around..  Mina and I stood out in the freezing cold while I was trying to end the conversation.  I didn't care.  For now, I am cancer free.

The best part?  I GOT MY MEDS!

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.

What Now?

I made the decision a couple of weeks ago to go to work instead of seeing my Psychiatrist.  Now I have no meds so what do I do now?  Common sense would tell you to go see the Psychiatrist.  Well, I did that and was told, "I'm sorry, the next available appointment is in January."  While sitting there feeling totally helpless I asked, "I need meds, can I get them?"  The response I got was, "We will give this to the Doctor."  That was two days ago.

I went to the pharmacy to ask if Sam's meds were ready and there I was told, "I'm sorry, we are still waiting for the Doctor to contact us, maybe you should call them tomorrow."  What the heck!  I told the doctor four days ago that Sam needed his meds and they told me to contact the pharmacists to have the pharmacy contact them.  I did that!  I want to scream, "Are you serious!" Now Sam is out of his meds.  I asked the pharmacy if my meds were ready to be told no.  I walked away feeling totally crushed.  Is there anybody who cares about my family's well being? 

I have been in a downward spiral for a couple of days now.  This latest news was just too much.  I walked away from the Wegman's pharmacy in tears.  All the woman could do was say, "I'm sorry."  It is not her fault.  It is mine. 

I needed ice cream for Sam.  He wanted his night time snack.  A woman's cart was in the way and I tearfully said, "Umm, I need to get some ice cream."  Feeling totally awkward in my tears I went to get his other favorite snack of pistachios.  I ran into a marching band mom who is a breast cancer survivor.  She looked at me and I totally collapsed into her arms.  I just sobbed and wailed, "I can't do this!"  She asked me what was wrong and I explained that I just felt like I didn't have any strength left.  We talked about breast cancer and I told her about my worries and how I had an oncology appointment coming up.  We talked about depression and how people don't want to be involved with someone that just isn't feeling well.  I won't have any friends coming over to my house saying, "What can we do?" 

Why am I talking about this?  I am all about education and why not educate in the midst of feeling like I can't take another step.  I think about the guy that pushed the woman into the tracks in NYC while trying desperately to find help.  I think of people shouting, "I need help!" only to get none.  Does this really happen?  Yes it does, I read about it all the time.  After a tragedy the first response is, "What could we have done to prevent this?"

I am not going to go on a shooting spree or any other seemingly ridiculous way to shout to the world that I am hurting.  I will just wake up in the morning full of fear to work as hard as I can to get through the day.  That is how my depression works.  How does one describe what this fear feels like?  All I can say that it is debilitating.  I tearfully talk myself into getting dressed and getting outside.  That is what I did this morning.  I made it and now it is night.  Yes, I fell apart in the store and yes, I am afraid to go to bed in fear of what I will feel like tomorrow.  Again, this is how my depression plays out. 

Tomorrow I will call the Psychiatrist and if he won't help me I will call my General Practioner.  If my General Practitioner won't help me I will go to the Emergency Room.  If they won't help me I will be out of luck.  I feel like a child who has made a bad choice.  I shouldn't have chose money over drugs to keep me well. 

I will be alright because I always make it.  I will smile when people say hello.  I will somehow get my medication so the depression will not dip to the point where I will be admitted into the local R-Wing.  I will wait for the upswing even though it feels like it won't arrive.  I will be ok.

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.

 

Should I be tested for drugs?

I have seen a few posts on facebook stating that people on welfare are drug abusers.  Is this true?  I found an interesting article that states that in the first round of testing in Florida it was found that two percent of the welfare population tested positive for drugs.

I am not a political person and I could go on and on about how our country wastes money on this and that.  I am just not in the mood for people to get mad at me.  Because of my disability it is hard enough to make and keep friends as it is.  My diagnosis coupled with Sam's doesn't really lead to an active social life. I often talk about isolation because I do my best to keep it real. 

Sam and I are recipients of SSI and SSD.  I am also a recipient of food stamps.  My family gets a grand total of $70 a month for a family of three. The total number of dollars that we receive a month just does not cover the amount of money I spend on additional therapies and special autism clubs for Sam.  People in our community have been so generous in scholarships so Sam can attend these special functions.  It is a full time job to find the money so Sam can benefit along side the families that can afford it. 

There are times when Sam gets extremely angry because there isn't enough food to eat.  I can only get food shelf assistance every three months.  There is a missionary near us that is helpful but then I get the phone calls where I need to take time away to stay on the phone with a volunteer to pray.  Prayer is good but sometimes not helpful when I am driving to the next appointment for Sam.  I graciously stay on the phone and say thank you and hang up.   

I don't like being on assistance at all.  It is a very hard life to have.  The paper work alone is mind numbing.  On my desk is a 10 page report to fill out to get assistance for Sam to have an Ipad.  This report has now been sitting on my table for over a week.  I am trying so desperately hard to become organized so I can think straight.  I look at it and cry.  I am not eligible to get a case manager because they say I am too high functioning.  I don't feel very high functioning at the moment.

I have a part-time job where sometimes I work 3-6 hours a week.  I had an opportunity to go to a five day training to learn about Therapeutic Crisis Intervention.  I made it through four days.  It was a fantastic training for the first 3 days.  By the fourth day exhaustion set in and my social anxiety went through the roof.  This training wasn't mandatory so on the fifth day I didn't go in to work.  I literally couldn't do it.  I am still down and out with the fact that I couldn't make it.  By the fifth day I was paralyzed. 

The next question is, "Do I make money while I work?"  I have to factor in that with work the food stamps will go down.  I am on section 8 and my rent increased with every dollar I report.  With SSI half of my paycheck will go to them after I have earned $85 for that month.  Where is the benefit of working?

Still being on the subject of work, I have a work incentive counselor.  That is one more appointment I must keep to find out where the assistance is to help me and my family.  This is just more paperwork.  I have to take the time to go down to Social Security Office to report my earnings.  I have to fill out more paperwork for food stamps.  Excluding my Work Incentive Counselor, these people that work at these establishments are not the nicest people that I have encountered.

One last question, "I am a single mom and if I had a full time job, where would I find the time for my appointments and Sam's?"  These appointments are made on their schedule, not mine.  I had a therapist that I loved and he left leaving me with a counselor that doesn't match my personality.  I have tried multiple times to change this person and the clinic just won't let me.  I missed my last appointment with the Psychiatrist because I chose to work.  I now have no meds and no appointment to get any.

I hope this sheds some light on how I don't have a Cadillac and eating steak for dinner every night.  My house isn't filled with drug deals and plotting on how I can fool the government.  My house is filled with me doing my best to provide for my family.  I don't have a problem with the drug test, I have a problem with people thinking I don't deserve the assistance.

Sorry for the depressing post.  It is just where I am at.

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.

 

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.