Life Without Regrets

30 11 2010

Ever since I was 17 when I walked out of an abusive foster home after my foster mother attempted to choke me, I made a pact with myself that I would never look back. I was now finally the captain of my fate and could decide my own destiny. Whatever the consequences, good or bad, they would be experiences from which to learn and grow.

As I was driving today, I realized that next year would be the 30th anniversary of that life-altering decision. Have I honored that commitment?

Everything that has happened along the way, all the way back to the time I was born, has made me the person I am today. I would not be human if I didn’t admit that it would have been nice to have gone through life without some of the horrendous situations, like the abuse I experienced as a child. But even those situations had positive side effects. Let me give you an example. If I had not been eventually abandoned by my mother, I would not have been placed in a foster home. Had I not been placed in the foster home, I would have never met my friend, Patty. If I never met my friend, Patty, I would have never met my future husband now of 18 years. Although you cannot imagine it at the time it is happening to you, good can come from evil. You can overcome tragic circumstances and have a happy and fulfilling life if you are willing to put in the hard work to change behaviors, stop the cycle of abuse, and commit to finding out what is “normal” when you’ve lived such a dysfunctional life. It truly is a matter of choice.

Having said that, there are a few things that still make my regret list:
1. Having come from a place in my heart of good intentions, my actions hurt a friend. Although she has forgiven me, I have not been able to forgive myself.
2. Helping someone I barely knew get home, a decision that had consequences I still deal with today even after therapy.
3. Hitting a few off-key notes at my vocal recital at Hamman Hall at Rice University. I know, it sounds like a silly one, but I never sang in public again.
4. Watching “Man of the Year” starring Robin Williams. I will never get that time back.

With the exception of that movie, the good news is that I still have time to fix the others.

The second part of living a life without regret is not having a long bucket list. While I have a variety of things I consider just “wishes”, there is only one item currently on my bucket list: I would like to go swimming with dolphins in the wild. After watching “The Cove” I could not in good conscience swim with dolphins in captivity, so I must venture to the open sea to fulfill this wish. I’ll have to remember to bring plenty of Dramamine.

None of us knows when our lives will be over. Live your life in the moment without regrets for the past. You cannot overly worry about the future either. If you find yourself saying, “if only” or “what if” too often every day, you cannot focus on the pleasures and sorrows of the here and now. Although I thought I knew this lesson well, having my son with severe autism (and other disabilities) only deepened my understanding of what that truly meant. In order to build a bridge to reach him, I had to be present with him. I would sometimes spend hours with him in our playroom we built just for him to make some sort of connection. There were times he appeared catatonic and would only briefly look up and around. I had to make myself his favorite toy in the room. I noticed that if I was looking up at the clock or worrying in my head about all the things I had to get done in the house, he would be less responsive to me. Somehow, he knew. There was no faking out this child. It took a long time, but we built that bridge. I repeated to him verbally quite often that if he felt that his world was safer for him that I was going to be totally 100% okay with that. I was not trying to fix him; I was sending him an invitation. He eventually RSVP’d a “yes” response.

Yes, he has challenges. Yes, life will not be easy for him as he ages. Yes, there have been many sacrifices that this diagnosis came with, including my health. He has been my greatest blessing and my life teacher. How many parents can say they still find magic in their kids making eye contact with them 15 years after they were born? How many parents pull their hair out during the teenage years when their children start rebelling, yet I would give my life just to have 24 hours to have a real conversation with him. I learned to never take anything for granted. To live my life as free as possible of regret one minute at a time.





Adam Lambert Forms Neural Connections

18 09 2010

I was a huge American Idol fan, doing blogs on Fox 26 Houston after each show, predicting during their first auditions that Adam Lambert and Danny Gokey would make it all the way to the final 5 in the competition.  With American Idol, one does not have to win in order to be successful; alternatively winning does not guarantee success.  Adam had left his mark on Season 8 and Idol could never measure up again.  The Idol tour did not include a Houston-area visit, and I could not get to Dallas because of Patrick. 

Anyone who has been following my blogs since 2007 there also knows of my intense battles with my son’s school district.  We decided to pull him out of the public school and put him in a costly private setting with an anticipated costly legal battle ahead.  The day we made this decision was the day tickets went on sale for Adam’s Houston concert.  My husband and I agreed that this was a sacrifice we would gladly make for the sake of our son.  All our financial resources were being put into the private placement and the legal process against the district.  It was a difficult choice because there were so few opportunities in our life for fun, fun away from the daily struggles of raising a child with multiple disabilities.  Every day I would visit the site and say, “But I want to go.”  However, when Patrick was coming home having made leaps in his developmental process and a calming of his behaviors, I knew we made the right choice.  There was still this longing in my soul to go see Adam perform. 

I decided to put it out there to the universe. If I was meant to have these tickets, they would somehow get to me.  I put a note on Facebook that if anyone heard of any contests being run that next week, to please let me know, because I was feeling lucky. 

A friend, knowing that I had one of the worst years of my life, seeing how much progress Patrick was making in his new school and wanting to do something out of genuine love, decided to play fairy godmother.  She did not know too much about Adam, but she was impressed with his interview on Oprah.  She wanted us to take Patrick. 

“Take Patrick.”  That was something I would have never considered before, especially during the last year when his behaviors increased because staff was not trained properly in the school district.  In 15 days at this private facility, Patrick had dramatically changed.  We really loved this idea.  The school was excited as well.

The day of the concert, I called Hobby Center to see what their procedures were for carrying backpacks were (Patrick’s seizure medication in there), and if I needed a doctor’s note.  I also asked about photography policies.  I shared with Cori Stevenson at Hobby Center that I was 50% excited and 50% petrified because I just did not know what to expect with him and that we were planning for every contingency.  She gave us some information that we previously did not know:  Alison Iraheta was opening for Adam and would be on for 35 minutes starting at 8:00.  Then there would a 30-minute intermission.  Adam was scheduled to sing for about 75 minutes starting at about 9:05.  Based on that information, we planned to show up at 8:20 which would allow Patrick to hear Alison’s music from the muffled sounds of the lobby area so I could see how he might react. 

My friend came to the door with the tickets about 10 minutes later and I tried to hold it together, but when I saw she also included money for us to buy some mementos, I just lost it and cried that we had just had a bad year and ever since Patrick has been going to this school all these wonderful things have been happening in our lives.  

When we arrived at Hobby Center at 8:20, Cori came up to the door as we were getting our tickets out.  She informed me Karolina would be available to help us.  She instructed us on where the EMT was located should there be a need.  Karolina would also check in on us throughout the night.  They worked like a well-oiled machine.  We got up to the gallery level and Karolina was there to greet us.  Patrick wiggled into her heart as he does so many.  He was rocking back and forth to the music coming from the hall, so we were hopeful. 

This is Karolina

As the people filed out to go to the restroom and buy concert merchandise, we walked in and sat down in our wonderful seats.  Patrick just took it all in. 

Patrick takes it all in.

He loved the Hobby Center’s ceiling of stars. 

The ceiling at Hobby Center

The noise gradually became louder and louder, which was perfect to acclimatize him to the sound.  The crowd was filled with such wonderful diversity.  Love was palpable in the air, like the warmth and beauty of the sunrise. 

"Not sure about the screaming fans."

Everyone was standing up, so Patrick did, too.  Although he did have his hands on his ears, he was smiling, laughing and rocking back and forth (dancing!).  The roar of the crowd when Adam took the stage at this sold-out show was deafening.  Patrick was appropriately mimicking the crowd.  There were no bad seats at Hobby Center; our seats I felt were perfect for us. 

Adam appears onstage.

Adam Lambert in Houston

We checked him often to make sure he wasn’t having a seizure, especially during some of the laser lighting, which happened to be some of Patrick’s favorite parts. 

Patrick's favorite: The laser lights.

It wasn’t until Adam sang “Aftermath” that it all hit me and I found myself crying.  For 70 minutes, Patrick blended in with the crowd.  No one stared at him for being different.  No one even glanced his way.  I looked over at him and thought, “Wow, this is what it feels like to have a neurotypical kid!”  For those of you who have followed me over the years, you know that my first child, Matthew, died, so Patrick is my only living child.  I did not know what life without autism was until then.  It was one of life’s perfect moments and one I will always treasure.  It makes the difficult times with autism easier to manage.  It was such a gift. 

“Anytime anybody pulls you down, anytime anybody says you’re not allowed, just remember you are not alone, in the aftermath.” 

It summed up my first half of the year with the difficulties with the school district.  Although I sometimes felt alone on this journey, in the aftermath, I rediscovered that support.  

“Gonna tell you, you’ll be alright, in the aftermath.” 

And he was.  He was thriving, accomplishing more in 15 days there than 6 years in the school district. And we were having this perfect moment. 

He was very quiet on the drive home.  However, while rounding the corner of the street that led to our home, Patrick yelled out, “I’m home.”  I did some double-checking with Jeff that he heard that, too.  As we pulled in the driveway, he said it yet again.  One of the miracles that has occurred with Patrick is that he has become more verbal.  They send lists home every day of things they hear him say and our list at home is increasing as well. 

The week of Adam’s concert, Patrick was having an adjustment period as we were weaning him off his behavior medications.  He also had been dealing with a lot of change–the previous week, his father had gone away for a week on a family emergency, and his teacher was off on her honeymoon.  He was still doing well, but there was some lack of focus issues occurring. 

He had a fantastic day the day after the concert.  These were some of the comments that came home in his home log:

“He came in with a mission! 🙂  He charged straight to his cubby and even prompted ME to get the home log so he could put his backpack away.”  During his yoga, he demonstrated peer imitation of some movements.  He had much lower vocal stereotypy in the morning.  She also wrote, “Patrick was saying “hi” (vocally) to peers as they come out the jumper and were going back in.  Also dancing to music with his hands down.”  For the first time, he almost went into the jumper.  He motioned for his teacher to go first, but she insisted he had to go first and then she would follow.  He wasn’t quite ready to do that, but he was so close. 

I wrote back:  “Adam Lambert forms new brain connections.  I just LOVE this idea.”  We joked that maybe it should be a required field trip for all the kids next time he is in town if the concert had this kind of effect.  Knowing Adam, he would embrace having a bunch of kids with autism come visit him.  His message is about love, about being true to yourself, not being ashamed of it.  During the concert he talked about everything in your life needing to be connected by the love in your heart.  It was an all-inclusive love-fest that I highly recommend to everyone. 

I want to send my thanks to my friend for her amazing generosity, to Cori Stevenson and Karolina at Hobby Center for helping to make my son’s first rock concert a roaring success, to Adam’s fans who did not even know the magic they were helping to weave that night, and to the Adam Lambert fans who have enjoyed hearing about this tale of love.