Thursday, June 15, 2017

The state of the world.

I really am struggling these days not because of my personal life which is in the best shape its been in years. but the violence and hostility between people that we are seeing on a daily basis these days really have me feeling worn out. I am trying to rationalize all this in my mind but every day that becomes more difficult. It can be so exhausting when you are so hyper-sensitive as I am and you can literally feel the fear and hostility that is spreading like a disease around the world.
_Sean

Saturday, April 22, 2017

Epilogue: New Hope

"I know there's an Answer, I know now but I had to find it by myself"-Wilson, Love, Sachen, The Beach Boys Pet Sounds
I had started entering the world of online dating about a year before I met the CAP-G Producer. After the falling out  I doubled my efforts and for months I had a few close calls but no real success. It was obvious most Neurotypical Girls were not interested in me and I did not disclose my diagnosis on the dating profiles. I did disclose my diagnosis to the CAP-G Producer but that obviously  did not work out. I had definitely decided that if I were to have a significant other, I would prefer a fellow Aspie, This was no easy task since the diagnosis is relatively rare in Females. In desperation I tried a site called Aspieology dedicated to Neurodivergent relationships. At first I couldn't find anyone near me so I sat on it for a few months. A few months later around the holidays I spotted a profile of a girl my age who lived not real close, but close enough that I thought it could be realistic. Her description seemed to indicate that she had very similar interests to mine.I sent her a message, she replied back and we messaged each other frequently over the next few weeks. She said that she wanted to wait until March before meeting me around her birthday, coincidentally my Birthday is also in March. I agreed considering I waited this long a few more months would be fine.
By February we had exchanged phone-numbers and from my first phone conversation with her I felt completely at ease and realized that I did not have to maintain the "Normal" façade that I had with the CAP-G Producer. By Early March we had decided that we would meet to see Beauty and the Beast (starring my former celebrity crush Emma Watson) at a theater near her. Around the same time I got a friend request on Facebook from a name I did not recognize so I deleted it. a few days later  I got a comment on one of my drumming-based youtube videos from the same guy I had not heard of before. He asked if I wanted to jam with him. I jumped at the opportunity. I found out he was the leader of a band called "Lonely at the Top" and wanted me to audition for the drummer slot. I had done auditions with bands before but none had worked out. I ended up going to his house where he already had a drum kit set up for me. We played a bunch of songs that we both liked together. after jamming for a bit I started to tell him about the downward spiral my life had taken recently. He asked me if I was Asperger's and told me  just by coincidence he was too. Things really clicked and I asked him if we could next rehearse at my house so I could use my drum kit. He agreed. Over the next few weeks I met my other bandmates and things have been going great since then and we have gigs coming up.
On the Sunday after my Birthday I finally met up with the girl I had been in contact with.
I also met her sister and her fiancé. After having a quick dinner, We browsed the Barnes & Noble at the mall. We both loved reading and spent time browsing our particular interests and learning about each other. We watched  the movie and afterwards I told her that the night had been worth the wait.
I saw her again the following Sunday because my parents were having lunch with friends and the place was near where she lived. We ate lunch together and we talked more about our shared experience growing up on the spectrum and I realized that she was like the person I would like to be. Completely accepting and relatively at peace with myself. The kind of person I would have been if my negative experiences growing up had not beaten all the optimism and spirit out of me.
With the combination of my new band and my new Girlfriend I am as satisfied with my life in a way I have not been in a long time. As long as the lunatic in the White House doesn't do something Insane  As of right now the future is looking pretty bright and I am very thankful for that.

Sunday, October 16, 2016

Chapter 11-: Where to now?

“I’m just one too many mornings and a thousand miles behind.” –Bob Dylan

Since leaving Vanguard and losing so many people who meant so much to me, I have continued to try to live as best I can. I completed an Audio production course in College and with my Uncle John made my first big serious recording, a cover of the Beatles, “If I Fell.” On Thursday Nights for a long period of time I would sing several songs as part of my Uncle’s act at a local bar, and I have had several strong auditions for bands but nothing has yet fully clicked.  Still, I love playing the drums and I look for chances to sing whenever I can.  My love for music is very deep.

I somehow made the Dean’s List in College at one point, and I’ve made slow steady progress toward my associate degree.  Meanwhile, the job at the theater goes on and on, well past the point where I would have liked in fact. 

I had one return to the clinic; this time I went all paranoid and really was at wit’s end about the future of the government and the personal nature of the scriptwriting and Abnormal Psychology classes I was taking at the time, but mostly the misery I was feeling at falling further and further behind people my age.  Actually, my parents have told me that the docs think it was mostly drug interactions from a medication I had just begun taking for hypothyroidism. Whatever the cause, this time I was in the clinic for more than two weeks, and it’s a setback from which I’m still working to recover.

I went on hiatus from college and began again working with therapists to piece my life back together.  To add to these years of tragedy, my maternal grandfather took a fall on Easter Sunday 2014.  I heard about this when my father and I were in Nebraska for the funeral of my Uncle Ron, a farmer and tax lawyer who had died of bladder cancer on April 15 of all dates.  

When we returned from Nebraska, we did a charity walk in the area helping in the fight against bladder cancer, which helped me deal with that. But we also found that the damage to my grandfather was worse than I could have imagined.  He had suffered brain damage and was very seriously impaired that summer; in fact he never truly recovered.  My cousin Amanda was impressive with him, very brave given that she had lost her own father (my Uncle Don) and grandmother at a very young age and Pop Pop had been close to a father to her over the years.

One great thing is that Pop Pop, a Korean War veteran, had been honored by the town of West Caldwell as its parade marshall on Memorial Day 2013—fortunately before his terrible fall, although by less than a year.  I was very proud that day.

I resumed College in Fall 2014, scared but ultimately picking up my education where I had left off.  I felt further behind than ever, and I know it doesn’t really matter but I still felt like an old man among kids.

In June 2015 after a grueling Spring Semester, we had to put down my best friend in the world, my beloved dog Berkeley. He’d successfully fought off his illness the summer before but when the disease (ITP, a bleeding disorder) recurred, we had to let him go.

July 2015 brought a visit to California through the Utah canyons and on to Disneyland. While things did not go exactly as planned due to the weather it was mostly a happy trip.

However, only a few weeks later, on August 9, my Pop Pop passed away. Life’s changes were coming hard and fast and I was bearing up okay, even though not all that happy with my own state in life.

The following Wednesday was Pop Pop’s wake. Literally hundreds of people came to pay their respects but it was the following day’s funeral that touched me the most, as it seemed that the entire Township of West Caldwell New Jersey including the Police and Fire Departments literally pulled out all the stops to make sure my Grandfather’s funeral procession ran smoothly. I will never forget it.

I must admit that I am fatigued by the personal losses I have endured over the past few years. And I still feel the sting of worry about a world that seems to have gone crazy. The recent mass-shootings that have happened in the United States have brought out a number of critics talking supposed connections with Autism and this has left me absolutely devastated. These attacks on the autistic community seem unfair to me, but that’s a more complex topic than an epilogue can handle.

In the Fall of 2015 I returned to college for another year, took a karate class and a public speaking class. A few weeks into the semester was the Colleges Club Fair. I had been involved with Radio Club the previous year but gave up on it after one semester since it really did not interest me. I signed up for a club that looked interesting called CAP-G. I got an E-Mail telling me when they met. I went to their meeting place where I was told that if I had an interest in Television Production this was the place to be.

I was immediately enlisted as a Graphics operator for the school Newscast and felt encouraged by the producer, a strong-willed young woman with black hair who seemed really passionate about her work. A few weeks later we had a practice day where I was trained how to operate a teleprompter which I was initially terrible at, but the producer was very patient and showed me how to work it and I slowly got the hang of it. After a few more weeks writing stories for the School’s Newscast, The producer E-Mailed me saying that she liked my writing and wanted me to assist her with the editing of the scripts for the show. I was overjoyed and for the rest of the semester we edited script after script together. Following the end of the semester came Christmas 2015. While celebrating the holiday with my family at my Uncle Garrett’s House, I suddenly started wishing the producer was there; soon after I realized I was in love.  

In late January I returned to College for the Spring Semester. I continued to help edit the scripts with the producer as the weeks went by I started thinking out what I would say to her to let her know how I felt about her, I spent weeks practicing to ask her out on the last recording day of the semester. When that day came I asked her if we could meet down the Jersey Shore, she agreed but I did not frame it as a date since I was so nervous about how she would react. A week later for the end of semester screening was my final chance I helped her set up the food for the attending students. I tried to continue to plan our meeting at the shore to which she seemed receptive. I realized I had to say something after the screening during the screening I contemplated what I would say to her.

About halfway through the screening I decided to keep it casual so I just thanked her for everything she had done for me over the previous two semesters and we hugged. I thought things would be all right. We would meet at the shore and I would tell her how I felt. Things went fine until a few nights later just on a whim I visited her Facebook page and discovered that she had started a relationship with someone else who she had been seeing for some time, unbeknownst to me.  I was extremely angry with myself for failing to tell her how I felt. I spent the next few weeks heartbroken until I was snapped out of my misery by my Grandmothers declining health. She had been fighting cancer in the year that had elapsed since my Grandfathers death and it was beginning to take its toll.

On Memorial Day Weekend there was a monument dedication in front of the West Caldwell Fire House in honor of my Grandfather who was a volunteer firefighter for the township. Mom Mom was unable to make it to the ceremony. By the following Tuesday, she was taken to the hospital; I visited her on Thursday and she was already non-responsive. My cousin Amanda played religious songs but was overwhelmed by the emotions they brought on and had to leave the room. On Friday I went home and on Saturday Morning my Grandmother passed away.  Her funeral was as well-attended, like Pop Pop’s, with everyone in the town saying goodbye.  She is now with Pop Pop, and my brother and I are now without grandparents.
Throughout the Summer of 2016, I tried to go on  living despite the fact that I felt that I had my heart ripped out. The Summer was very difficult and painful especially  while visiting the Jersey Shore where it seemed everything reminded me of the Producer. I contemplated suicide several times but never acted on those feelings. In September of 2016, I very reluctantly returned to College. Thankfully, the Producer was no longer there as she had graduated in May, but I could not bring myself to be involved with CAP-G again and I deliberately did everything possible  to avoid contact with them even shunning a friend who wanted to start a band with me. It hurt THAT much.
I took an acting class and a Scriptwriting Class where I was writing a comedy about a failed Presidential candidate who started his own 24-hour news network as a satire of the Presidential Campaign of Donald Trump whom I (and most other Americans) assumed would lose. To say Election Day 2016 was a traumatic experience would be an understatement. I truly thought this would be the end. However, as the Holidays approached a faint light stated to appear in the vast darkness consuming my soul.

MC

How to sum up the experience of bringing Sean this far?

Lorry and I have always looked at friends and other parents who have children who are as disadvantaged as or more severely disadvantaged than Sean, and had mixed feelings. Unlike us, most of these parents are pretty much resigned to their children staying with them forever and to celebrating their children’s accomplishments whether large or small.  Some of these children, particularly those with Downs Syndrome, come across as highly positive and very happy; most try and succeed at doing what they can do as best as they can.

On the other hand, we have seen many marriages broken by children with differences, and are now seeing young adults we knew as children entering the world with highly varying levels of competence and confidence.  Some are still trying to piece their lives together; some have given up entirely and some are already gone.  To be sure, there are numerous successes out there so hope is not too difficult a commodity.  Right now, we see our future with Sean as yet to be written, there’s no question that our “take it day by day” philosophy is taking on water.  Neither we nor Sean seem sure of where this is all headed, and age and time are catching up to all of us very quickly.

From the onset of our Autism experience, Lorry and I were told that Sean’s “syndrome” would place tremendous stress on the family, greatly affect the life of Sean’s brother Kevin, and affect Sean’s view of the world throughout his entire life.  All of that has proven to be quite true.  And the struggle continues—a highly worthwhile struggle but a struggle nonetheless.  

For Sean, the future is a scarier place than ever.  He does not understand how these eccentricities in his personality have left him—one of the smartest people he knows, in his opinion (and I don’t disagree)—so far behind everyone else in terms of friendship, love, academic accomplishment.  He doesn’t get that people can find success at their own time and place and worries himself into a frenzy 24-7.

This non-stop worrying has taken all joy out of the world for Sean.  He is an excellent drummer and it offers him some escape, but is only a short-term diversion.  He has a great interest in politics but has lost all ability to enjoy the humor in the foibles in politicians and has no perspective that says he can make a difference. Sean never did have much use for the culture and feels more and more alienated from it.  He’s bright but distracted and absolutely sure that mathematics was invented merely to sabotage his ultimate happiness.

Worse many of the things that once gave him joy have either disappeared or been distorted by the realization that imperfect human forces can be at work even in the strongest organizations. He has trouble getting past even the most minor transgressions and certainly the major ones.  In Sean’s life, he has felt betrayed by the government, the Catholic Church, the Walt Disney Company, Autism Speaks, major league baseball, maybe even Santa Claus.  Other than the government and maybe the post-scandal Catholic Church, this is not a typical list of America’s most hated.  Most people get past such disappointments, but these are eternal wounds to someone like Sean and it can be hell to even try to change his mind.

So what’s the bottom line for a parent of an outside thinker?  Being still in a bit of a predicament with Sean and his road to the future, I don’t claim to be an expert.  But here are a few thoughts that seem paramount to pass on:

  1.  Don’t blame yourself—It’s not unusual to have second thoughts when something goes wrong with your child, and it’s certainly a nonstop second-guess once that child is grown.  (Part of the difference is that the grown child second guesses along with you.)  But if your intentions were good, and you provided the best help and guidance you could, you eventually have to let go of feeling responsible.  Maybe you think you provided less than ideal guidance; relied too much or too little on the Church and other social organizations; feel you could have helped more with job-seeking or counseling.  Perhaps worst of all you question the choices of prescription drug treatments that happened on your watch.  The bottom line though is that your child must ultimately save him or herself.  You can only do so much when your child goes in directions you can’t understand.
  2. Don’t give up on your child—obviously humans are difficult and complex, and without the clues to figure out their fellow humans, outside thinking children face difficulties that probably will last a lifetime.  It’s important to monitor their progress—giving space as possible but always taking time to smooth over any misunderstandings or episodes of panic or depression that might occur.  But refer to point 1, don’t beat yourself up when you don’t have a magic button.
  3. Get all the help you can—Right now, mental health is not all that easy to come by in the US, and the best help can be quite expensive.  But there are programs out there to help and it’s your job to find them.  Not just financial help like medical programs and SSI, but life skills programs, job-seeking programs, programs in colleges that provide aides for children.  Most important, counseling programs, although these get more and more difficult to find as your child ages.  But it’s imperative that you keep an eye on your child’s emotional stability.
  4. Love, love, love—No matter what approach you take to your child, the most important thing to remember is that they are yours and deserve your support and respect.  Most of these children have a lot to give once their gifts are identified, but with the process being more arduous it’s vital that they feel loved and respected at home.  Like many couples, my wife and I have taken very different approaches to Sean’s upbringing.  I lament that I didn’t instill more disciplined thought into Sean, though I’m still not sure how well he would have responded as no one else among his many advisors was able to create discipline in him.  I’d settle for his being disciplined enough to know that he can do math.  My wife on the other hand has challenged him constantly; Sean owes her credit for all of his successes in life.  But the key is respect.  It’s vital to respect these children as having tremendous possibilities and potential, because they are definitely going to come to points where they won’t believe you.
  5. Live your own life—It’s only natural to get so frustrated that you begin to share with your child the hopelessness of a single moment, but you’ve got to fight that emotion in yourself.  You need to live as positive and social a life as you want; modeling that type of independence and confidence.  When your child is depressed or out of sorts, you can’t join in on the sadness—it’s bad for you and models helplessness to your child.  If you don’t feel emotionally stable, you need to get help yourself; otherwise, you’re not capable of working with your child.

I guess the difficult thing is that you don’t know when or if the breakthrough will occur. Speaking strictly for my situation, I sometimes fear for my mortality not because of me but for Sean.  This is a problem as both of us age.  But I don’t have a family business to place him in; can’t find love for him (that’s a difficult proposition for most “normal” people in any case), and can’t assure him that he’ll end up successful in the way he wants to succeed. 


But I still have hope that there will be a breakthrough moment—that Sean will come to terms with this imperfect world and make the contributions I know he can.  While he’s not the whole family, he’s a vital, essential cog.  And we’re ready to celebrate his success.

Friday, October 14, 2016

Chapter 10-What happened?

“There are places I remember all my life though some have changed, some forever not for better, some have gone and some remain. -Lennon/McCartney

In Mid-August 2010 I suddenly realized that there were people my age and younger who were already living by themselves, halfway through College and higher up on the social ladder than I was. My years of trying to escape adulthood had caught up with me and the reality of my situation sunk in.

I realized that when I started doing part-time college it would be too little, too late. It dawned on me that I should have started taking classes sooner. It was a devastating realization and I was very upset with myself for not realizing it sooner. I realized that I was a pathetic 20-year-old living off my parents, with only a part-time job and Social Security. I could not yet drive and had wasted precious years of my life. I felt completely hopeless and wanted it to end.

Eventually toward the end of August I finally obtained a learners permit after several attempts. I returned to Vanguard in September of 2010 for my final post-grad year, once again working at USLI on Wednesdays, but on Mondays I would be working at a Boscov’s Department store at a local mall. On Tuesdays and Thursdays, I would go to Community College to take a preparatory Reading Class. However, I would be forced to wait for a long time afterward since my Mother had to pick me up since I could not drive. That meant 3 long hours of nothing trying to find a place to sit down and read or just contemplate the complete mess I had made out of my life. It was humiliating hanging around the campus, I felt like an old man surrounded by the other students despite probably being only 2 or so years older than most of them. It felt like eons. My decision to delay adulthood had backfired.

Soon, I stopped caring about my daily routines. I started a self-imposed diet partly to lose weight and partly to starve myself to death. I would still eat occasionally just to make sure people did not suspect. The bright spot of my life continued to be my job at USLI where I found stability while the world around me seemed to be crumbling. My visits to my Aunt’s cubicle and the brand new Coke Machine in her building were the highlight of my USLI days.

In December 2010 I had a complete emotional breakdown that sent me to the emergency room for fear that I would commit suicide, I managed to regain my composure to survive the holidays but peace did not last long.

In late January 2011, I had an early morning appointment with my psychiatrist, and the whole family went. I was exhausted after the appointment and wanted to go home but my parents insisted on going to a restaurant for Breakfast. The place was crowded and I did not want to wait. We eventually left but not before my mother and brother made spiteful comments about my contrary ways.  I was tired of this. My life had succumbed to a point, which I felt was no longer livable. I ran out onto the busy street, but my father pulled me back before I could finish the act.

At that moment I was furious, I had wanted to die and had been prevented from doing so. I sat on the sidewalk and told my parents that I wanted to die. They proceeded to call the police. The next thing I knew I was in the back of an ambulance and being taken to an ER where a cop said that he understood my problem because someone he knew had Asperger’s as well. To be perfectly honest, though, my diagnosis had not been on my mind at the time.  But I guess it did contribute to my overall feeling at the time.

I took inventory.  My lack of social skills made it difficult to successfully manage certain aspects that were bothering me at the time, especially my desperate longing for a romantic relationship--although I felt at the time that it was my failure to grasp a moment that had already passed that had landed me in this situation.

Next thing I know I am in a hospital bed for most of the day. Two of my uncles showed up to visit. Later that night I was committed to a local clinic. To say I had a horrible time there would be an understatement. My only condolence was a fellow patient who helped me get through the nightmare. After I got out, after only a few days, I was relieved; however, my situation had not changed. I still could not drive alone and there was still no dream girl waiting for me on my release.

Things were about to get worse; I found out that my Aunt Peggy, the one who worked at USLI with me, had been diagnosed with cancer and was going through rounds of chemotherapy. I was quite upset but felt assured that her cancer was found early and was manageable. On my 21st Birthday I went to dinner with my immediate family, as well as My grandmother, my cousin and USLI co-worker Adam, and my Aunt Peggy and her husband Uncle Joe. On the car ride back to my Grandmothers House my Aunt was talking about how she was going to fight the cancer and try not to let it kill her., I was afraid after hearing this.

When the 2010-2011 school year ended, I originally planned to seek a return to USLI as an official intern next year since I could no longer go through the Vanguard Program. However, as my aunt took a leave of absence and just got sicker and sicker throughout the summer of 2011 it became apparent to me that I would rather not go back there because of the conflicted emotions that her absence would entail. So I never properly tried to see if I could have worked longer for USLI though I desperately had wanted to.  But it was too difficult to be there when my aunt wasn’t any longer.

In early July, my Cousin Ellen got married. And in September we found out that my Aunt Peggy would soon be a Grandmother. Meanwhile, I was at a crossroads. I did not know what to do with my life. I considered going into film so I did a communications course I soon changed my mind but continued through the course and passed.  I tried to do a theatre course in Spring 2012 but that did not turn out all that well. Then the world stopped.

I awoke one morning in March 2012 to hear that my Aunt Peggy did not have long to live. To make matters worse, my cousin Ellen’s baby was on the way and there was a chance that my aunt would not survive to see her grandson. It would be a race to the finish, a horrible, horrible race.

On my 22nd birthday my grandmother was discharged from the hospital, having been there for a short time for reasons I didn’t quite understand.  I don’t think it was let on to me how sick she was; she was so mentally sharp and quite a good person to talk to.

In the meantime I had reluctantly created a Facebook account to keep in contact with my Vanguard friends. I asked Sean Gould if he could help me write a song for my Aunt, which we started working on. Two days later my Grandmother fell in her house and was brought to a nearby hospital on life support. The prognosis was grim.  I visited her a day later. She could not talk but I know she heard me as I said goodbye.

Meanwhile my college life went on. . I was having a terrible time in my theater class but doing relatively well in my History Class.  After class on Monday, two days after my grandmother had fallen, my parents had me watch her house while they went to the hospital. She died that afternoon as a priest was giving last rites. She died quickly and peacefully, with her children at her side.

The next week was of course spent having my Grandmothers wake and funeral. Then came the most difficult part: tearing apart and trying to sell my Grandparents’ house a place where I had been spending significant time since I was an infant. It was a rather bitter experience watching a huge chunk of your childhood disappear before your eyes.

Late on a Saturday night (actually early on a Sunday morning) in May 2012, on my parent’s 23rd wedding anniversary, my Aunt Peggy died of cancer. Her death came less than an hour after the birth of her Grandson Steven. She had made it to the birth of her grandson but never saw him in person.

Almost the entire staff who worked with her at USLI came to her wake.  It was one of the most painful days I can ever remember. I began again contemplating returning to work at USLI as an official intern but my heart was uncertain due to the emotional ramifications that would entail with my Aunt gone. I think she would have been alright with me trying to hook on at USLI, but I never really gave it a strong chance.  It’s become a matter of some regret for me, as the world has been a difficult place for me ever since.

MC

There’s almost too much to handle in this particular chapter.  These were very bleak years for our family, with so much going on and very little of it palatable.  Not to complain, though, because every family must deal with death and illness at some point.  But these were tough life lessons, especially the death of my sister at the age I am as I write this. I think Sean handled the details on these losses pretty well.

The most alarming thing about this chapter was Sean’s behavior after his realization that time was not on his side.  Until his mad dash into the street, I really had no idea that he was capable of such an act.  I am quite confident it was not an act of premeditation—it’s not like he left a note or something.  This was some comfort, but there’s no doubt that a car was ready to strike him and it was only a monster dose of adrenaline that helped me bring him back to the sidewalk to begin his first days of true despair. After that I didn’t deal with the incident very well, though I learned long ago from my strong grandparents and parents that one must move on.

The “jaywalking” incident was never shared with his grandparents, though most of Sean’s uncles and aunts were aware of the incident and were invaluable in bringing him back from the precipice.  No question though that it was devastating.   I don’t know that I realized until that moment that love might not be enough—that Sean might not figure out how to succeed in this world.  This had been something I did not want to know.  I had realized the path to success would be a slow, day-at-a-time but I didn’t know that that path could come to a sudden, crashing end.  Thankfully, for Sean and for the driver of that car, that crashing end did not come that day.

You feel pretty defeated when you first see your child in a mental rehabilitation clinic, though my emotional devastation was somewhat relieved that Sean seemed to come back just a little bit stronger from being scared in this way. 

Sean was a fairly stoic and concerned participant in the mourning for and burial of my mother and sister.  It was like he had a gear for that, that family was the one thing of which he had full understanding.  Given the circumstances and the personal setback my sister’s illness represented for Sean, he seemed to be a better, stronger person for a little while.

Nevertheless, the breakfast incident was a serious setback, and the clock kept ticking and Sean fell further behind.  I don’t much care about the pace at which Sean will learn to thrive, but he sure does. 

Even though Sean recovered from his first clinic stay fairly well, I think he surprised himself by pulling through it at all.  He seemed more and more fearful of adult life the more he realized he needed to enter it.  The child had become a man and his affectations were not all that cute anymore—they were seriously problematic.

As for me, there is nothing quite so bittersweet as realizing you saved your child from serious injury or death, while he tells you from time to time that he resents you for it.  Regardless of his feeling this at times, though, I’m grateful for every moment of Sean’s life and there’s no way I will ever be swayed from that feeling.  Because where there’s life, there’s hope, and that was the feeling I needed to have at this tough time of my life.




Wednesday, October 12, 2016

Chapter 9-In Business


“Now these memories come back to haunt me; they haunt me like a curse.  Is a dream a lie if it don’t come true or is it something worse?” –“The River,” Bruce Springsteen

During Summer 2008, it felt like a whole new world was within my grasp. I felt a sense of accomplishment for my graduation yet was relieved that I still had some sort of program at Vanguard to keep me grounded with my past.  I don’t think it would have been comfortable me at that time to be suddenly thrown into a future I was not comfortable with. That summer, my parents had a pool and hot tub installed in our backyard so it was a fun and relaxing summer as well.

Sadly, when I returned as a post-grad in the Fall 2008, I immediately felt like I had not graduated at all; to me the classes seemed identical to what they had been previously—and with the exact same teacher. However, my moment to shine came on Tuesday and Wednesdays, the day of my direct vocational training.  I would join a few other students who would go to work at United States Liability Insurance Group (USLI), which coincidentally was where my Aunt Peggy was an actuary; her son and my cousin Adam also worked at USLI. I was working as an Underwriting Assistant in the Liquor Department which I thought was interesting because I was only 18 at the time. But the job description did not involve drinking.)

My workday usually consisted of stamping papers and signing them which I could do at an especially fast rate. I felt great pride in that, but the highlight of the day was lunch. Lunch was free for employees and for us (this was a feature of being a Berkshire Hathaway company, the group owned by multibillionaire Warren Buffett, the oracle of Omaha.)  Every day I would always get the exact same sandwich  with the exact same specifications. (Italian Hoagie with only Ham, Cheese, Oil and Oregano.) Toward the end of the year I could just look at the food workers and they knew exactly what I wanted. It made me feel like I belonged. 

On Tuesday we had a crew of Vanguard workers that included several friends of mine, including Dylan. The one strange thing about Dylan though is he would go to lunch with the other members of his department rather than with the rest of us. I was confused and hurt initially but I got used to it.

On Wednesday Vanguard sent a somewhat different crew, which included my friend Sean Gould. Sean and I had known each other since I had started at Vanguard but we really did not know each other that well until we started talking about music on a trip to New York back in 2007. Once we started working at USLI together we quickly became best friends. I introduced him to the world of Brian Wilson and the Beach Boys. (Brian had released his solo album “That Lucky Old Sun” on the first day of school that year.) . I lent Sean the book “Catch a Wave” which I had purchased in Brian’s home town of Hawthorne California back in 2006 and many of my Brian Wilson-based DVDs.

He was and is a rather brilliant songwriter and guitarist and one day he had myself, Dylan and a few others singing the background harmonies to Wouldn’t It Be Nice during lunch.

During the Fall of 2008 I learned that we were in a global economic meltdown and I found out that the reason was because of the American system being ruled by something called Capitalism, which to me finally explained what I did not like about corporate America.  I had always detested money, which I considered to be nothing more than pieces of paper, and I felt that money was an obstacle to success and understanding. I always wished we had a different economic system.  

My value system, which is derived from Dicken’s A Christmas Carol and anything else that represents the antithesis of the Ayn Rand-based laissez-fare form capitalism practiced in corporate America. The Presidential election was heating up and not being a fan of the Clintons or of any Republican candidate, I had learned about and supported Barack Obama since the early primaries. I saw Sarah Palin as a complete joke and before it was from the McCain/Palin campaign that I kept hearing all these bullshit attacks regarding socialism, redistributing wealth, etc. The McCain campaign was relentless at throwing all this BS around, and I didn’t quite see why their attack on this candidate who spouted “CHANGE” had any validity given that people were suffering economically anyway.

However somewhere in the middle of this ugly campaign, I found a few rays of hope.  The Philadelphia Phillies were in the playoffs and there was a new Star Wars Television show called “The Clone Wars.”  Unlike the team that made the playoffs the year before, these Phillies would go on to the World Series, playing the Tampa Bay Rays, who had only a year earlier been the Devil Rays.  They got the devil out and became the Rays of hope.  But the Phillies of my beloved grandpop (probably plotting things from above at this point?) were keen on dashing that hope.

The Phillies split two games in Tampa Bay, then took their first two games in Philadelphia to take a 3-1 lead into Game 5. Game 5 was one of the most bizarre things I have ever seen. (I was watching via television since we no longer had Season Tickets). The game started on Monday night, and they got 5 sloppy innings in before it was rained out; Philadelphia fans assumed that the game would be called and the Phillies, ahead at the time (well, sort of; you’ll have to look it up) would be world champions. Baseball changed its rules on the fly that night and declared that the game would be played from the point at which the rain had stopped it two nights later.

When the game finally resumed we were huddled around the TV to see if it was possible that our team really could be World Champions. Brad Lidge struck out Eric Hinske and the celebration began. On Halloween my father and Cousin Nolan went to the victory parade without me, having just two tickets to go to the in-stadium celebration. I was rather upset about that but whatever. It was a fun ride; plus, I loved my job at USLI, and also in October I started working at a local movie theater.

USLI was completely cool.  I would visit my aunt’s desk after lunch on a daily basis, and I had a great working relationship with my mentor. It was the happiest I had been in years. Sean Gould and I were having great lunch discussions; in fact, the only downside was that my friendship with Dylan seemed to be slowly evaporating, He was talking about wanting to leave Vanguard and we had lost the rapport we had the previous year. 

In November 2008 I voted in my first Presidential election for Barack Obama. Two months later, on Obama’s first inauguration day, I was at work, but my mentor let me stay at lunch longer to hear his presidential inauguration speech, in which he mentioned the evils of fascism and Communism, I guess to quell the suspicion of his “socialist tendencies.” However, the die had been cast by the McCain campaign and still seemed central to the talk about what would happen in his presidency.

You would think that this concession to the conservative wing would have helped Obama at least have a chance at a peaceful start to his presidency, but I could see that that was pie in the sky, The racist factions that had been in hiding since the late 60s were back with a vengeance, not at all comfortable that our president’s heritage was half Kenyan. He was accused of being a Muslim (not a crime but not true—and a reflection of remaining American anger over 911); of not being born in the USA, and a number of other things that seemed to me to be very random and may or may not have been racist. 

My father had told me partisanship had been on a steady rise since the days of Watergate long before I was born and that this was made worse by the introduction of new television outlets with points of view, made possible by cable television’s expanded channel universe.  And sure enough I became aware of Fox TV hack Glenn Beck with his paranoid ranting and John Birch Society Conspiracy Theories that led to the very right wing Tea Party, supposedly a reaction to the financial crisis that had started in 2008, but suspiciously timed right at the dawn of the Obama presidency. I didn’t think it possible that the political world was about to become even more divisive than the Bush or Clinton years. I tried to phase out the crap as much as I could but still you could feel the us vs. them mentality that had swept the nation. My interest in politics was really a hatred for it, and that was a tough polarity that would cause me trouble for many more years afterward.

After my first year working at USLI ended I went into the summer of 2009 relatively well, we toured Penn State and other Colleges in the state for my Brother Kevin.
It should have occurred to me at that time to start thinking about going to college part-time but it did not occur to me at that time.

In September of 2009 I returned to Vanguard only this time I was out of the regular classrooms (mostly and in what is called the “Career Center” On Mondays I now worked for the Human Resources Department at a retirement home. My mentors were relatively friendly.

Tuesdays and Wednesdays I returned to USLI initially working in a regional department but later moved to a different one then I passed the insurance knowledge test in February of 2010 things were going quite smoothly but then I found out my friend Dylan was having problems again. A friend of mine told me he was leaving Vanguard, and when it was revealed to him that I knew about this he was very angry with me and with the person who told me. The last time I saw him he was walking away with an angry expression, He was reportedly just as cold to the other students as well. The fact that I was never properly able to say goodbye is a deep regret.

Next thing I know I ended up moving to occupy his old job at USLI, which I held for the rest of the year. As the year ended I realized that the Career Center on non-work days was boring as hell. I knew that I should start Community College part-time next year. In the early Summer of 2010 things progressed smoothly. I helped my mother with the gardening and was very optimistic.

In late July we took a road trip all the way out to Iowa to attend my Cousin Ryan’s wedding. I always feel old and that I’m falling behind when my cousins get married or have kids, the fact that Ryan is about 18 years my senior notwithstanding. We visited Cleveland and the Rock and Roll Hall of Fame on the way out to Iowa as well as a theme park with which I found little enchantment, maybe the first time I ever could say that. On the way back we spent some good time visiting Chicago for five days.  Coincidentally the Phillies were in town playing the Cubs at Wrigley Field, which my father had always wanted to see.  Bonus on that night was that Phillies ace Roy Halladay was pitching.  But it was a hot night and he gave up a ridiculous amount of runs and the Phils lost.  They’d win the division that year for a fourth straight year on the way to six titles in a row.  But they did not win another World Series and with the World Series in their pocket already, I didn’t have anywhere near the same passion for them.  This might have been the last time I really cared about sports at all.

When we got home things were generally going all right I applied to my local community college and was accepted.  Then in mid-August I suddenly had a realization that sent me to the depths of despair.  I was sure that all my dreams for the future were completely gone.

MC

This period for Lorry and I was the one soundtracked to the much ballyhooed hit “The Theme from 60 Minutes.”  The clock was ticking and it was deafening.  All the hope that came from Sean’s terrific graduation year was tempered by the realization that he was now in the last days of Vanguard, just delaying the real world life we so hoped he would begin making a transition to.

We very much liked how comfortable he was at USLI; on a few occasions I would even meet him at lunch and would talk to his mentors as well as my sister.  He really did seem at home, developing a curious devotion to Warren Buffett and his group, Buffett being a billionaire whom saw as having a real social conscience despite his obvious talent for capitalism.

Sean was also becoming a sponge for political views, mostly liberal political views.  Not particularly radical really, Sean is too peace-loving for real revolution.  But he absorbed the views of people like Jon Stewart and Michael Moore to a point where even I, a bleeding heart for sure, had to rein him in just a little bit.  But at least at that point he could laugh at the absurdity of politics; eventually it would wear him down and there was little left but anger.  And fear.  And so it remains to this day.

It wasn’t that Sean was without his successes.  He was becoming a terrific drummer and singer, had earned a black belt in karate, and was still an active force in his school.  But you could see all these good things slowly being killed by Sean’s nervous nature, his fear of basic human interaction, his loss of interest in things like sports (though he maintained an unhealthily avid interest in all things Disney, And he had reached an age where we could only prop him up so much.  He had to learn to be on his own.  This was a hard lesson for all of us.

Sean had always been very reliant on the idea that his dreams would one day come true, but I think he thought there was more magic involved than work.  But as the thought reared its head that his dreams were dying, and personal successes were fewer and further between, Sean’s energy was devoted more and more to the practice of hoping and less and less to the practice of acting.


For Lorry and I, Sean’s discomfort with so much of the world was a sobering thing in a period that was in some ways quite comfortable for us, but also marked by significant tragedy.  And as Sean continued on to the end of his Vanguard days in a far less stable emotional state, tragedy was truly on the horizon.

Sunday, October 9, 2016

Chapter 8: The Amazing Turn-Around

Now the sun's coming up, I'm riding with Lady Luck, freeway cars and trucks,
Stars beginning to fade, and I lead the parade   Tom Waits


In one moment at the end of the camp I hated, I instantly became a more empathetic and caring person. I also began to realize that I was not “one of them,” that I was my own person.  I learned to empathize with them but I knew that I had my own potential and that I needed to evolve into a much different person from the confused self-hating monster that I had become.  And I wanted to do this without surrendering my essence from my childhood. I realized that I had had an Epiphany and vowed to move forward with a whole new outlook. The next few weeks went by with me recording drum and vocal tracks for my album with my Music Teacher on Guitar including a heartfelt version of Pink Floyd’s “Wish You Were Here” testifying to how much I missed my family and friends. I spent a lot of the time on the computer for the next few weeks looking at pictures of the removal of the EPCOT Arm and Wand next to Spaceship Earth (told ya,) which was exciting.

I finally came home from camp in mid-July. My cousin Nolan had driven in from Nebraska looking for a job (and to be a stand-up comedian) in Philadelphia and was living with my paternal grandparents, which turned out to be a really good thing considering my grandpop’s Parkinson’s Disease, which by now he had been fighting for years, was starting to take its toll on him.

In August my maternal grandparents took the whole family on a cruise to Bermuda for their 50th Wedding Anniversary. On the streets of Bermuda, I was almost killed by a car (since Bermuda is a British Territory People drive on the opposite side of the street and the streets are VERY narrow.)   We had a good time otherwise for the most part, though I was strangely distressed by premonitions regarding my paternal grandfather’s health. These fears were realized on our return to the US; on the first day back, we discovered that Grandpop had taken a fall and was in the hospital. What’s more, our dog Berkeley, staying with my Uncle Lee and Aunt Suzanne while we were cruising, had not gotten along very nicely with them or their two dogs of their own. 

So all in all, not a great summer for me, but I entered the School Year of 2007-08 vowing to keep the promises I had made that summer: to be more open and friendly to people who respected me, to treat those with troubles with respect and empathy, and to simply ignore rather than get angry at people who bothered or ridiculed me. Faculty and other students noticed the change; in fact, the students noticed so much that before the year would end, I was elected President of the Senior Class of 2008.

In October 2007, I met and befriended a somewhat eccentric classmate with very long hair (let’s call him Dylan, again to protect his identity by not using his real name). Dylan wore a dog collar around his neck for reasons I couldn’t really understand. During my first conversation with him, He told me he had Asperger’s Syndrome, and on hearing this I was both excited and relieved.  I knew logically that I was not the only person in the world who had Asperger’s, but no one had explicitly told me this out loud before. Since it was a Special Ed School, it was obvious that other Aspies were in the school and I think my parents told me about it.  But I had never shared my status with classmates before, and certainly no one had actually told me point-blank that he was in the same boat.  Dylan and I became friends and he revealed later that he was actually French Canadian; he would frequently have conversations with me in French which left me dumbfounded (so I guess it’s a stretch to call them “conversations.”).

As time went on it slowly became apparent that many other students I had already known had a similar diagnosis.  As I opened up about my diagnosis with them they shared their diagnosis with me, which was such a relief because I no longer felt so alone in the world.

So I went into 2008 on a roll, as happy as I’d been in quite a while.  However in February, after being in and out of hospitals and homes for seven months my Grandpop lost his battle against Parkinson’s disease and died with my parents, aunts and uncles all around him. The weekend of his funeral felt like one long day, with all my paternal family from Pennsylvania, New York, New Jersey, Nebraska and Colorado in attendance, as well as most of the maternal side of the family and a surprisingly large number of old friends and neighbors of my Grandmom whom I had never met.

As the family convened at my Grandmother’s house the Friday Night after Grandpop’s death it was a rather surreal experience. Saturday night we held the wake, which I strangely found to actually be one of the most up-beat events imaginable even with my Grandfather’s prepared corpse in the room.  Because it was tough at the end, this event felt more of a celebration of his life than a mourning of his death. Sunday was the day of the funeral It was a very bittersweet occasion, I still have never really cried over my Grandfather’s death because I knew he was suffering and really was never the same since his Parkinson’s came into play. It was his time and we all knew it.

Still, the man who had shaped a good chunk of who I was had died, and there was certainly an empty place in my life. After the funeral, the family again convened at my Grandmother’s house. My cousin Nolan, brother Kevin and I took my Cousin Anne’s two sons to the local playground and watched them play for a while. Nolan seemed to enjoy giving them really bad advice. It was clear that the family would go on.  As the first two of the next generation, and I knew that they and all the subsequent Great-Grandchildren, some since born and more yet to come, would see that Grandpop’s legacy would endure.

When the dust cleared from the funeral, the spring of 2008 went pretty well at school leading up to our Senior trip to Walt Disney World!  Needless to say, this was a highly anticipated part of the year for me.

We spent our first day in the Magic Kingdom, which went very well, I got to ride the newly renovated Haunted Mansion, which is my favorite Magic Kingdom Attraction. The second day was Disney’s Animal Kingdom in the Morning and EPCOT in the afternoon and evening. This is an insane tactic, as I believe EPCOT cannot be done in less than a full day if that. I’d like to say I made the best of the situation, but the teaching staff chaperones were not spared my opinion. 

Still, I was thrilled to see EPCOT again. Spaceship Earth looked incredible without the Mickey wand and seemed much bigger.  We did Mission Space, Test Track and I went on a wild goose chase to find the temporary EPCOT 25th Anniversary Gallery, which drove my teachers nuts. Once I found it, I browsed a bit, then instead of going to the Land Pavilion and riding Soarin’ as I requested, we went to World Showcase for dinner. Since no one in the senior class wanted to sample the international cuisine, we ended up eating in the American Pavilion, which only sells Fast Food rather than regional American Dishes. I was furious, and this was getting very difficult.

The teachers decided that they wanted to see the concert at the America Gardens Theater, then eat at the Moroccan Pavilion. We students just sat around on the tile fountain, as they spent their adult time. We eventually made our way around World Showcase Lagoon back into Future World; by the time we exited World Showcase the torches around the Lagoon and pre-show music for Reflections of Earth was playing. Soon we got to the Land Pavilion most of us rode Soarin’; but when we got out, we discovered that the girl who did not ride Soarin’ got lost in the Land Pavilion. At that point, I was completely furious and I fear out of control.

By the time we found our classmate and went back into World Showcase, my favorite show in the world was already halfway through. We watched the ending from a bizarre vantage point and when the show ended the same girl got lost again. Despite all of this upheaval, I still tried to enjoy the music and the Heaven on Earth that is walking out of Epcot with the theme from Tapestry of Nations playing. We all sat down on a planter in Innoventions Plaza as a teacher went to find our stray classmate, and I was singing joyfully the Tapestry of Nations theme. A teacher confronted me and accused me of not caring about the missing student since I was singing and enjoying myself. I had an emotional breakdown and cried all the way till we were on the Transport Bus.

The next day was Blizzard Beach (a day that we could have used for EPCOT, mind you.) I stupidly forgot to wear Suntan lotion and was broiled by the Florida sun.  We went to a medieval times Dinner Show that evening

Friday was spent at Universal Orlando; Saturday was a half day at Disney’s Hollywood Studios, where we went on Tower of Terror and headed to the Rock’n Roller Coaster, which happened to break down while we were in line.  I suggested to the group we could squeeze in 2 rides in the time it would for them to fix the coaster, but only I left the line. Unfortunately (for me at least) the coaster started working again soon after I left, and once again I was furious.

We then went to the Little Mermaid Show when I wanted to try the brand new “Midway Mania” ride; luckily after we saw the show we did get to be one of the first to ride the Midway Mania attraction, which officially was not open yet. We hurried to the Great Movie Ride, then had lunch.  We were then told we could not ride Star Tours because there was no time left. And this time I was LIVID. I left WDW in bitterness and came home unfulfilled. I couldn’t deal with being in the place where dreams come true and things going so very wrong.

Things began to bear up as I prepared for my High School Graduation.  As class president, I was expected to give a speech, and with help from a teacher I wrote a speech detailing my struggles and successes through my school career.

The night of my Graduation was surreal. I gave my speech, and the then-Ms. Pennsylvania said a few words but she told me it was difficult to follow my speech.  I was very pleased that so many people complimented me on what I had to say and that so many of my aunts and uncles, and my maternal grandparents were able to attend and see me speak. . The rest of the ceremony went on without incident, but this would not be the end of my Vanguard experience.  I would continue to attend Vanguard for 3 more years as a post-grad in the vocational training program.  I still had a ways to go, but it seemed at that ceremony that within one year I had gone from the pits of hell to the top of the mountain.

MC

Yes I do share Sean’s feeling that his year of 2007-2008 was mostly positive.  He said that was because of our misguided decision to send him away to camp. But I prefer to think of it as an inspired decision as it turned out.  It was a difficult decision to send him away, having spent nearly every home hour trying to keep him happy and somewhat on task; we kind of knew it wouldn’t be easy for him.  The counselors actually advised against our checking in on him or even sending nearby relatives to do so, but we thought every day about how hard this must be for him.  But if it took that experience to open his eyes about how to respect other kids, then more power to the experience. 

And to digress in a minor way: Sean did come home having had an incredible musical experience and he has since attacked his drumming and singing with renewed interest and passion, not to mention obvious talent. Music is a tough way to make a living and working his way into any business was obviously years away for Sean. Still he has made some opportunities for himself in this area and hopefully someday an opportunity will work out better for him, as he has an obvious love for both of his musical skills.

Anyway it was very important that Sean chose this year to thrive, given the heartbreaking illness and death of my father, who had been so important to Sean and even more important to me.  I was worried about how Sean would react to such a huge life event and he came through the mourning period with flying colors, although I would have liked to have found this out many years later.  I know that I miss my dad every day, and suspect that Sean does as well. But using a title from the “Reflections of Earth” music he loves so much he realized “We Go On.”  And that spring and summer he went on with great authority, closing out a school career (not counting college) that was as high-action a ride as anything that his beloved Disney had imagineered.

How exactly to sum up Sean’s school experience, with all its incredible highs and lows? There was nothing easy about the whole deal, right from the word go.  So much time as wasted trying to find the magic button, and I’m not sure we ever really did.  Even the best school for Sean, which we believe we ultimately found in Vanguard, was not sufficiently adaptive to reverse some of Sean’s more frustrating misadaptations to a world he did not see as sufficiently logical.

The dichotomy of the experience hit us hard at the end of the school year, being very embarrassed (though not at all surprised) that Sean’s overly emotional attachment to Disney entertainment had made him so difficult for the brave Vanguard chaperones of Senior Trip 2008. But Sean and teachers were able to fight through it all and in June 2008, we were incredibly proud of our president of the senior class, and his very moving speech at the graduation ceremony.  Pride all around as Sean entered adulthood, but fear as well.

It was hard to see all the tumult that marked the Vanguard years and know in your heart that while this was the safest place for him and the place where he might best learn, it was nothing like the world he was entering. In the world of work and enterprise, you have to struggle and interact with people who had not been specially chosen to live in Sean’s environment, as was the case at Vanguard.  As sincerely as Vanguard teachers try to bring their charges into a life-ready state, the very nature of the school coddles them to some degree.  We knew Sean wasn’t really ready for the world of work nor even for the self-initiating world of college.  He was soft, soft in the best and worst senses of the word, a true innocent who expected nothing but the best from people and withdrew completely when anyone would disappoint him.  Not exactly the mark of an ambitious fellow.

We felt fortunate that the Vanguard experience would last till Sean was 21, and hoped that the years of vocational training and college preparation would take root now that he had so greatly built his confidence in his senior year.  But there were more twists and turns ahead than we could have imagined.


Friday, October 7, 2016

Chapter 7, Heartbreak & Self Discovery


 “She made me feel so bad, she made my heart feel sad, she made my days go wrong and made my nights so long, you got to keep in mind love is here today and it’s gone tomorrow. It’s here and gone so fast.”
From Here Today by Brian Wilson and Tony Asher, The Beach Boys’ Pet Sounds

On the last day of school, “Catherine” told me that she did not want to leave her current boyfriend, who had not taken well to the news that she was planning to dump him for me.  She said had re-thought her decision to go out with me.

I felt completely heartbroken and had an emotional collapse, so I left school early that day. My condolence and companion through the summer of 2005 was the music of Brian Wilson and the Beach Boys. Brian Wilson had become my musical hero due to his amazing music, history of mental illness and triumphant recovery, and his 2004 completion of the legendary 1967 SMiLE album, which had been abandoned halfway to completion for reasons that have filled numerous books and documentaries about Wilson and the Beach Boys. I consumed all the material I could find, and in August 2005 I got to see Brian Wilson and his amazing band perform the finished SMiLE album live.

When school started again in Fall 2005, I still saw Catherine frequently, and tried to re-kindle our feelings for each other.  But it was no use.  As time wore on, she seemed to be becoming more and more like a total valley girl, which I hated. Soon, I wondered what I saw in her to begin with. Other than this attempt to overcome the pain of the previous year, the 2005-06 School Year was pretty much uneventful, which for me was something of a triumph.

In Summer 2006, I convinced my parents to take the family to Anaheim, California, to visit Disneyland for the tail end of its 50th Anniversary Celebration. I’d really wanted to go, and my parents agreed to make it part of a larger California trip. It turned out I didn’t mind at all. I absolutely loved the trip—all of it. As for the Disneyland Park, some of its attractions were actually better than their WDW counterparts, especially in the Magic Kingdom. Unfortunately, Disney’s California Adventure was an overall disappointment at the time, though it had some positives.  Overall, though, the Disneyland Magic Kingdom was much more dynamic than its Florida counterpart, with several rides having been significantly upgraded—such as Space Mountain, Splash Mountain, and even It’s a Small World.

I enjoyed the balance of things we did in California, which included Hollywood and the Universal Studios in Los Angeles, and in San Diego, Seaworld and the world-famous San Diego Zoo, which hosted the cover photo shoot for Pet Sounds, almost surely my favorite album of all time.  We also went to a ballgame in Petco Park in San Diego that was memorable for more than the fans’ treatment of the visiting Barry Bonds during what might have been the coldest baseball game I ever attended, even though it had been a 90 degree day when we left our Coronado hotel that evening.  Who would have thought that the cold of an August night game in San Diego could trump the cold of a wet and drizzly early April game in Philadelphia?

My parents wisely began and ended the trip with days in Disneyland, mostly so they wouldn’t be miserable while doing San Diego and Hollywood.  At the end of the trip, we were staying at a hotel in Hawthorne, California, childhood home of my musical heroes. In a bookstore there, I purchased an autographed copy of a recent Brian Wilson biography by Peter Ames Carlin. In it, I found the address of the Wilson Brothers childhood home and insisted we go there, which we did.  While the home is no longer there it is now home to a large historic landmark monument paying tribute to the Beach Boys and the Wilson family. Afterward, it was the drive to LAX and the end of our California Adventure. I spent the night reading the Brian Wilson book on an airplane flight across the country back to our home in Pennsylvania.  It was a satisfying trip and the only sad thing was to think it had all come to an end.

By contrast, the 2006-7 School Year was once again not very memorable. Again, that might be a good thing as I was beginning to feel very comfortable with Vanguard and the staff and students there. So there was really only one memory of note and it was a home one.

In early February 2007 at a birthday party for my young next-door neighbor, her father and mine were discussing the infamous rumors about how to synch Pink Floyd’s Dark Side of the Moon with the classic movie The Wizard of Oz.  On internet advice we all watched and the adults got quite a kick out of how many coincidental things happened on even the second and third spins around the album—too many coincidences to be coincidental, my father said.  I had great fun, but as I listened over and over, I found myself completely blown away by the album and became a huge Pink Floyd fan, diving deep into their material much as I had done with Elton John and the Beach Boys before them.

 In May 2007 I was told that there was a camp in upstate New York for disabled children that wanted me and that had a music program that I would love because it would help bring my singing and drumming to a new level.  I was skeptical, of course, because of my previous camp experience.  What’s more, unlike previous summer camps I’d known, this one was an away from home sleepover camp that would last 3 weeks, I was apprehensive about going since every Summer Camp or indeed program for kids with disabilities I had been placed in before had been a complete disaster. What’s more, due to the negative experiences of being affiliated with “disabled children” had caused me I now strongly disliked and made fun of severely Autistic and Mentally Retarded People, I saw them as freaks and I had spent much of the previous 7 years trying to be free of any affiliation from them because of the negative perception that entailed.

Still the musician who I talked to via phone sold me into going.

Right after the end of the 2006-2007 School Year , my family took me up to New York State, dropped me off at the camp and left. My fears were confirmed, it was mostly severely autistic and mentally retarded kids I would be rooming with for the next 3 and a half weeks.  While I brought LOTS of books and things, I felt trapped and on some days refused to eat.  The only condolence was my private meetings with the Music instructor twice a week, which I enjoyed immensely.

Eventually I got fed up and said to one of the retarded kids “You people should be in camps” meaning they should stay in this camp and be separated from society However in my anger, and in the reaction I got, it was obvious that the picture I was painting evoked Nazi Death Camps. I realized what I had done and saw the internal monster that had been rearing its head throughout my entire adolescence had become apparent. After that comment I stood on the basketball court deep in thought and I decided that enough was enough. The demons that had been building in me for the past 6 years needed to die. I let all my anger and resentment from the past subside and a new Sean Callaghan emerged from the darkness that had consumed him for years.

MC

As I mentioned following the last chapter, one of the main things Sean has fought against since starting to research his diagnosis is the notion that those with Asperger’s don’t feel empathy for other people. Ironic then that he became so angry at others whom he felt were lesser than him.  And he is true to his word, the camp experience did make him a lot more tolerant of others with disabilities, a little more understanding, a little less likely to blame them for his own problems.   But this whole period of Sean’s life was marked by a turbulence that could only have been seen in this era of instant communication.

In researching his condition, Sean discovered an online group of fellow Aspergites whose regular blogs heralded Asperger’s as the next advancement in the human mind. These groups portray themselves as victims of the “neurotypicals,” misunderstood and stigmatized by narrow bigots with no understanding of what it means to be as advanced as those with Asperger’s and so much closer to the truth of humanity.

I paraphrase of course.  Can’t possibly fault a group for trying to get to the bottom of their existence or their differences.  However, this type of online discourse has been very unsettling to Sean and I’m not sure he has yet to stop overreacting to perceived slights against his type.  I’ve argued many hours with Sean to take this type of talk with a heavy grain of salt, but only with partial success.

I think that Sean come to terms with the fact that having Asperger’s Syndome is not an automatic pass to enlightenment, though he still fights a good fight that it is an honorable mental condition that shouldn’t be “cured,” at least not in the traditional sense.  But this anger is palpable and does seem somewhat justified, even though I think there is some posturing going on that doesn’t fully seem in the best interests of those with Asperger’s.

Maybe it’s not my place to say but I think a large part of the problem creating this angry segment of the “autism spectrum” stems from a serious miscalculation being made by those trying to help address the problems of autism. It has long bothered me that the autism spectrum has grown to be catch-all for an increasing number of people with an ever-wider range of learning and social deficiencies.  In recent years, the use of the phrase “Asperger’s Syndrome” is being phased out in favor of high-functioning autism; so it’s been taken off the mythical “spectrum” and flat out become a form of autism.  This is not to say that it’s any type of insult to be autistic, but it’s one less chance to individualize or at least usefully classify people at different levels of the condition.

So there has grown a forceful internet community that has made Sean notably angry with groups like Autism Speaks and its depiction of autism with the use of puzzle pieces and talks of “curing” the condition..  Some of that anger is taken out on the severely disabled who put a nonfunctioning face on autism; there’s much evidence that Sean has put this unjustifiable anger aside toward the less fortunate, but it led to many a sharp rebuttal delivered by me to a very angry teenager.

Most protractedly, the internet advocates of “next-generation” thinking has instilled in Sean a fear that the Autism Speaks orgs of the world will fund science that a prenatal indicator of autistic behavior, and instead of helping solve the condition for the severely affected, it will pave the way for a type of abortive eugenics program through which people on the spectrum will be slowly phased out of society. Or what’s worse, a revisit to a program of eugenics like the one started in 1939 Nazi Germany, which extinguished thousands of lives and caused sterilization and other actions against other people with physical and/or mental disabilities, or at least what were considered unfavorable diagnoses. It was the precursor to the Holocaust.

Certainly one can’t preclude the possibility that this type of discrimination can’t rear its head in the world again.  In some places and to different levels, I’m quite sure it’s with us still, as are all injustices caused by human weakness. Even in the US, there is a considerable history of eugenics thought and even law. So what can one say in reassurance?

Primarily what would seem to be common sense about the instincts of most of mankind when it sees a problem to solve. Obviously the front lines in the fight against autism, or maybe we should say “fight for autistic people,” consist mostly of people whose intentions are purely good, no shortage of whom are parents of children on the spectrum.  Obviously they only want what’s best for their children and ascribe great importance to taking advantage whatever an organization like “Autism Speaks” can provide. Parenting of any autistic or Asperger’s child is difficult task, as I can certainly attest. It’s an intensive parenting experience, and through no one’s fault claims many a marriage as its victims.  Even the nonparents involved in the movement to help with autism are almost mostly pure and simple trying to help unlock, for example, the communication skills of the severely impaired autistic child, who might not be able to express a solid thought to his/her family that is clearly, fully understood with 100% confidence.

As for the idea that autistic people have special gifts to share, I don’t dispute that and give these “Pro-Aspie” groups their due in making those on the spectrum feel hopeful and significant.  I have seen much that is very refreshing about this special group whose blindness to social cues make them a little bit above average in rebellious --or let’s say just plain different—thought. Often, if one really thinks about what is said by someone on the “spectrum” it is eye-opening. 

The tendency I notice for autistic children finding their way is not to look at things in terms of how they’ve always been done but more in terms of how things should logically be done. In many cases, autistic thinkers don’t think of their “non-social” thoughts as expressing rebellion at all, but more a matter of common sense.  For example, when I thought about it, it made perfect sense to me that Sean didn’t want to write out the questions along with the answers to an exercise and was completely confused by getting reprimanded for not following this (to his mind) illogical request.  I don’t even remember now how I reconciled this, probably with a speech that he needed to do whatever the teacher said.

For further evidence that those on the autism spectrum who find ways to navigate society in spite of their “abnormalities” can undoubtedly become very successful, very creative thinkers, the Asperger’s sites very feely cite examples of great people who admit to or are thought to exhibit autistic tendencies, often fitting the Asperger’s model.  And there seems to be no shortage. From historical figures like Mozart or Einstein, to trailblazers known to be on the spectrum, like Temple Grandin, to such lauded current figures as Bill Gates, David Byrne, and Tim Burton, it’s an impressive list of forward looking people who fit the mold of the autistic.

The problem with these angry “next generation” sites, it seems to me, is the problem with all sites that deal with labels  It paints what is truly a wide range of personalities—a “ spectrum” if you will and generalizes about their superior worth. And it sets up as the enemy a rival group of “neurotypicals,” and I would argue that the sheer size of this group makes it more diverse than the even the autism spectrum could ever be.  I’ve met many “neurotypical” people over my years, and the one word very few of them would earn is “typical.”  Even those who follow very traditional or predictable lifestyles are very different when you get to really know them.

But I digress to some extent.  As time goes by I have grown a deep appreciation for both the joys and difficulties of autistic life, but since life itself can be very hard, life on the autism spectrum is absurdly hard.  So I disagree with the angry point of view regarding the “help” groups and their good intentions or lack thereof.

But for us this point of view took a deep hold on Sean and there was a period of time when nothing we could do would sit well with Sean, whether at the time or in looking back.