Reflections on 2010

30 12 2010
 
 
 
 
 
 
 
 

Reflections of 2010

 

As we near the close of 2010, most of us look back and reflect on the year, vowing to make changes in the next year. I have never been big on making resolutions. Oftentimes we make resolutions so impossible to achieve, we set ourselves up for failure as soon as we write them and commit to them on paper (or in our heads). I downsized from resolutions to a “it would be nice if…” list and downsized from there to a “why bother” list. As the year progressed and I saw opportunities for growth and change, of course I took those paths. Perhaps it is the free spirit in me that did not want to get tied down to a list, wanting to bend and move the way a tree does in the wind.

Most of you who know me can already guess what the worst part of 2010 was for us.  Our relationship with Conroe Independent School District and its administrators. The corruption of these people runs deep, even a 2007 lawsuit brought against them for political racketeering and a violation of the false claims act.  

 The second worst part of 2010 was linked to that relationship and it was my health. Despite a pleading letter from the chief of rheumatology at three different hospitals in our prestigious Medical Center of Houston, a doctor who had treated me for 11 years, they continued to escalate the situation.  At one of our last meetings, I had a neurological event which landed me on the ground, unresponsive.  Do you think they called me an ambulance?  Nope.  They got a wheelchair, wheeled me in, let me rest for an hour and then wheeled me in with a wheelchair to the meeting, a meeting I have very little recollection.  Thank goodness both sides tape-recorded the meeting.  You can hear me slurring my speech, pausing for no particular reason, talking and making absolutely no sense, yet they still did not think anything was wrong.  They even knew about my pseudotumor cerebri and my brain aneurysm.  I still have trouble wrapping my mind around this.  I had no one with me and obviously was too impaired to advocate for myself.  Most of the rest of the summer I spent trying to regain my health.

For a school district who claims to have zero tolerance on bullying, they did not see any problem bullying the parents.

Not really the worst thing, but definitely an inconvenience has been these frakking kidney stones (now going on 3-1/2 months and 3 surgeries, anticipating having another conversation about more surgery on January 12).

 
 
 
 

The stent (aka) the coils of death

 

So now onto the awesome things about 2010.  By far, getting Patrick into a school that saw a child with potential and not limitations is at the front of the pack.  Let me give you an example of just how intellectually incapable CISD thought my son was:  At our meeting with Conroe in the spring, when we were talking about goals for the next year, when we got to his sign language goal, they suggested that 10 signs might be “too much” for Patrick.  I said, no, he learned 70 signs in 1 year (2002-2003) in their district with the right teacher who had the right training, so they can be learned, and again we got back to lack of proper teacher training and the desperate need for it to implement Patrick’s individualized program.  They felt that 6 signs for an entire year would be as much as he could learn. Within 9 days at his new school, he was signing 3 and 4-word sentences and had already learned 3 new signs. The best thing was to be able to drive to his new school every day and visibly see the progress both there and at home.  For the first time, we needed to catch up to them instead of me saying the school needed to catch up to us.

Another wonderful thing this year was my friends. Facebook friends, Twitter friends, friends from high school, friends from my childhood, new friends I’ve made this year, acquaintances I hope to develop friendships with, my immediate neighbors, friends I had lost touch with because I was always preparing for and sitting in meetings about my son that went on without end for nearly 5 years.  I was ready to join the human race again, and they were ready, able to willing to support us in the game plan for Patrick. Love wrapping you in a blanket, feeling wanted, needed and protected.   Through one of these friends, we were able to attend an Adam Lambert concert, a first for Patrick. 

 
 
 
 

Patrick's favorite: The laser lights.

 

One of the highlights of the year was getting to personally meet Lou Diamond Phillips, Matt Kelly, Raul Inglis, and Glenn Morshower at a screening of the movie Transparency at the Dallas International Film Festival. The coolest part is, after asking if any of his Stargate Universe fans were in the audience, and we “woo-hooed”, he recognized my face from my avatar and said, “PBMOM—NICE.” It made a tired mom fighting for her kid with autism refreshed and ready to go back and fight round 2 part 2 with those people. Gentleman, you were so kind to us and just class acts. (Side note, word is that Transparency is being released in 2011, so stay tuned. It is a action-packed movie. All my autism moms should buy one because Lou Diamond Phillips happens to be on the Board of Directors of ACT-Today out in California and has been from the start. I’ve found many sweet videos on You Tube where he is with the kids on stage. So please support his career and buy a DVD when it comes out because he is helping families with autism. 

 
 
 
 
 
 

LDP & I raise funds for FEAT-Houston

 This is Matt Kelly:

 
 
 
 
 

Matt Kelly, the producer (and original script idea)

 

 

 This is Glenn Morshower and me: 

Mr. Glenn Morshower and me.

One of the best moments is when Patrick came and sat down on the bed beside me. He took his arm and tapped my chest and said, “Mom” — not the sign for “mom” but said “Mom” (not Ma as he would do in the past while biting his hand). Tears of joy. I have been having many of those moments recently.

The kidney stones and reduction of stress in my life might have worked hand-in-hand in helping me to lose 20 pounds, a full dress size, without any exercise.   A definite highlight. 

After 18 years, Jeff and I have rediscovered ourselves after all the distractions of the school district were gone. That in turn led us to rediscover our marriage.

 
 
 
 
 

PBMom & PBDad 18 years ago

 

 Looking forward, 2011 will be remarkable. Patrick has made astounding progress in just 4 months; the sky is the limit. We will try to cultivate his newfound love of running into perhaps fun runs and see what happens. Or perhaps his love of planting things.

I hope to get my production levels up at work so I can make a part-time wage again at the very least. I hope to lose another 20 pounds by the spring when I need to attend a fundraiser and I’d like to purchase a very sexy dress.

And then the laundry list (so to speak) by cleaning this house from top to bottom.

And, joy of joy, for the first time, since I do not have to spend 6 months fighting with the school district, I can actually get started on my tax returns like Saturday, January 1.

I expect also that in 2011 the kidney stone issue will be PERMANENTLY resolved.

 At the end of January, we’ll be meeting the lovely Women in Sci-Fi up in Plano, Texas, a weekend of respite for Jeff and me. They have a great lineup and I am looking forward to spending as much time as I am allowed with each of them. Last time we were only gone 27 hours; this time, we’ll be gone a full 48 hours. We’ll see how well Patrick does with that.

2011 is already blowing my mind. Can’t wait to welcome the baby New Year.

Do you have any resolutions for the new year? Are you glad that something is over in 2010 now? Do you have any traditions to share? Post them away in the comment section.

Happy New Year to you all. May the year 2011 be all that you make of it.  

 
 
 
 
 
 

 


Comments : 3 Comments »
Tags: , , , , , , , , , , , , , ,
Categories : Uncategorized

Christmas Wishes

20 12 2010

As I sit down to eat Christmas dinner on December 25 with my husband and son, I will go through my 10 or more minutes of crying. When we recount our list of blessings, my list is usually long. This year, it will be even longer. I start off slow, thanking the Earth for the food, the people who planted it, grew it, harvested it, and transported it so that I could enjoy the meal of which I am about to partake. I make sure to thank the turkey for its life. Then the tears come–for the people who are going hungry, who are homeless, who are hopeless, and who are loveless. I may have helped some over the year, but did I do enough? Not likely. There is always more an individual can do. I gratefully acknowledge the people who have sacrificed their lives–our military and the quiet heroes of daily life. I say a blessing to those families who are grieving the death of a loved one; holidays can be the hardest times in their lives. Then I’ll begin to recount all the blessings currently in my own life.

This year I want for nothing, okay maybe except the Adam Lambert new acoustic CD and an announcement that Stargate Universe has been picked up by another network, but all-in-all, I have everything I could ever need or want. My son is thriving at the private school (and we found a funding source for it). The enormous stress of fighting a corrupt school district is gone. I have a husband who loves me and has for almost 20 years now despite seeing the deepest, darkest places of my soul. I have a wonderful golden retriever. I have a loving family, a roof over my head in a fantastic area to live, food in my stomach, a decent car to drive, great neighbors, wonderful friends, and an employer who is continuing to let me try to work each day as much as I can instead of filing for disability. Of course our retirement account was reduced to a 201K from a 401K after the economic meltdown as was everyone else’s, but Patrick’s autism expenses pretty much ate up the rest of it. Somehow I know we will be okay. While I might moan and complain about circumstances every now and again, a swift kick to my rear brings about enormous perspective.

The things I have on my Christmas wish list require the cooperation of others in order to achieve:

1. World peace. Sounds corny, I know, but I’m an idealistic fool who thinks this is actually possible. Before that happens, we will have to get rid of prejudice and hate. In order to get rid of prejudice and hate, we need better educated people.

2. End to hunger: With all the food we have and waste every day, we could feed the world.

End Hunger

3. A cure for autism: Just because I love my son and accept his diagnosis, doesn’t mean I would not want to make life easier for him, and for other parents not to have to even take this journey. The life lessons have been tremendous, but at what cost?

While I am waiting for those things to happen, I will continue to try to do my part, helping one person at a time, one day at a time.

People tend to store their “good will towards men” for just the Christmas season. As they pack away the Christmas decorations, the spirit of Christmas leaves them as well. Perhaps I should dream smaller. Perhaps my ultimate Christmas wish is for others to find the heart of Christmas in their daily lives and keep that siren song alive year-round. Instead of the 12 days of Christmas, we would sing the joys of 365 days of Christmas. Can you imagine what an astounding force of nature we as a people would be?


Comments : 5 Comments »
Tags: , , , , , , , , , , , , , , , , , , , , , , , , , ,
Categories : Uncategorized

Patrick Turns 15

17 12 2010

At 11:57 a.m. today, December 17, Patrick will turn 15 years of age. It is a day worth celebrating, especially given the progress he has made since his diagnosis of autism when he was about 18 months of age. There were times then he retreated into a world of almost catatonia, where a low hum was the only sound coming from him. We used to call it his mantra chant. The path has been fraught with ups and downs. We were like ants on a mountain, fighting for every piece of territory gained, always being undermined by the elements. A parent would not give up on their child if they had cancer; they would seek out whatever treatment their child needed regardless of whether or not it was covered by insurance, regardless whether or not it would lead them to bankruptcy. Such is true of parents with kids with autism. The only difference is that the cancer (the autism) is a lifelong battle.

Patrick as a baby

 

True to our beliefs, we have mostly lived in the present for Patrick. I stopped blaming myself for his autism. They were not all happy days, especially during 2004-2010 when we battled the school district for every little thing; anger was the only thing to which they responded, so we used whatever was in our arsenal to help Patrick.

I cannot help by feel incredibly blessed by the miracle that happened to us. We made the decision to cut the school district out of his life, especially after listening to some digital voice recordings we made over the summer to see exactly what was going on in his classroom. Two teachers engaged in extremely unethical behavior. We had planned to homeschool him, but an opportunity arose for him to attend a private school in the area. In just a matter of 9 days, they accomplished more than the school district did in 6 years. I love the shock and awe coming from my friends and family as they witness his metamorphosis. In this Christmas season, it is the second best Christmas present we have ever gotten, the first being my son’s birth.

Patrick's first day home; getting acquainted with Sam, our golden.

We would not be good parents, however, if we did not think of Patrick’s future in some shape. In the climate of the current state of affairs in Texas, it does not look bright. There are some very grim statistics: Approximately 70% of kids with autism like my son (especially those who are considered nonverbal) will be sexually abused in their lifetime. Texas has the distinction of the notorious “Fight Clubs” in state institutions where the residents were made to fight each other for the entertainment of staff. In a report dated December 1, 2008, the Department of Justice sent a letter to Governor Rick Perry about their investigative findings. Texas lawmakers have known about the abuses and deaths in the system for years and never did a thing about it–until the DOJ threatened to cut off federal funding. In their report, they noted that between the fiscal year 2004 and the current investigation of 2008 more than 800 employees across all 13 facilities that serve nearly 4600 residents had been suspended or fired for abuse, neglect or exploitation of the residents. Over 200 had been fired in just the year 2007 and another 200 had been fired in 2006. Fifty-three residents in the state facilities died in just the year 2008. The state took legislative action, but things have actually worsened.

Our extended family all live out of state. As we age, so do our siblings. We cannot ask the children born to our siblings to take on the responsibility of taking care of Patrick as he ages if we are no longer capable of doing so. The sheer amount of information that would be required of them to understand is mind-boggling. The second hindrance is that the money does not follow the person. For example, if my husband and I were to die, if someone in the family decided to take on the responsibility of care, they would have to leave him in the state of Texas. If they took him to another state, he would go on the bottom of whatever waiting list that state had. It took 10 years for my son to get off the waiting lists in Texas; with funding about to be cut this year, the people still on the wait list are going to have to endure even longer waits. If we decided to leave this state to be closer to family, the same problem occurs.

People with disabilities face job discrimination. In November 2010, the Department of Labor released a report on job statistics for people with disabilities. The percentage of people with disabilities in the labor force was 21.5. By comparison, the percentage of persons with no disability in the labor force was 69.8. The unemployment rate for those with disabilities was 14.5 percent, compared with 9.1 percent for persons with no disability, not seasonally adjusted.

Stereotypes of the homeless and unemployed plague people with disabilities. Too many people conjure up in their minds a drunk or drug-filled person who chooses to live the lifestyle they do. In fact, in 2008 more than 40% of the homeless are people with disabilities. These stereotypes lead to cuts in state and federal funding that could help these people become contributing tax-paying citizens.

It is unlikely that Patrick will ever be on a cognitive level to ever become a father as he can barely care for himself. If Patrick was a girl, I would be able to obtain birth control pills to protect from the incidents of sexual abuse that might lead to pregnancy. Because he is a boy, a vasectomy as a method of birth control is considered controversial. This is different from the controversy of routine sterilization of people with disabilities in the past.

All these things lead my husband and me to the conclusion that we have to outlive our son. If we do not, there will be no one to protect him.

Me and Patrick; I could look at him all day.

As we celebrate all of his accomplishments today and rejoice in remembering the day of his birth, we keep a wary eye on his future.

Autism Awareness


Comments : 7 Comments »
Tags: , , , , , , , , , , , , , , , , , ,
Categories : Uncategorized

An Autism Christmas

9 12 2010

An Autism Christmas

For families with kids with autism, Christmas is a challenging time. Many children with autism have co-existing diagnoses, like sensory integration disorder. This is a neurological disorder that was first studied in-depth by A. Jean Ayres, Ph.D., OTR. Dr. Ayres describes sensory integration as the ability to organize sensory information for use by the brain. An individual with sensory integration dysfunction would therefore have an inability to organize sensory information as it comes in through the senses. To give you an example, many children with autism who can speak will tell you that fluorescent lights hurt their heads. They can actually hear the noise made by these lights and it causes pain within their bodies. One of Patrick’s responses to this disorder was that certain noises he would hear would make him dry heave and eventually throw up. We noticed this response with changing the plastic bag in the garbage can, lawnmowers, leaf blowers, etc.

We were ill-prepared for his second Christmas morning (when he had just turned 12 months of age on December 17) when we had him try to open a Christmas present. Apparently the sound of the tearing paper had the same effect for him. I’m thinking this is NOT normal. Kids do not throw up opening their presents. I added that to the list of “weird things about Patrick” that I had begun gathering.

That Christmas it was more of a curiosity for me, as he had not yet been diagnosed with autism. The scientist in me wanted to see if I could correlate a direct relationship between the two items by running several trials to see if we could reproduce that at different times and settings. There indeed was a direct correlation.

When the third Christmas came around, he was age 24 months. To see it happening again brought grief to my Christmas as we had gotten the autism diagnosis 6 months prior. By the fifth Christmas morning, my heart could no longer bear the pain Christmas morning brought. My husband and I decided that on Christmas Eve after Patrick was in bed, we would open our gifts to each other and that others gave us so when Christmas morning came, we would no longer associate it with a grieving heart.

As we worked with him on overcoming his sensory obstacles, we would try one present. He would tear it once; we would put it away and come back to it later. For many years, we practice this same ritual. Eventually he could tolerate the noise, but the look on his face said “chore” versus “joy.”

Three years ago, things suddenly changed for him. We were opening a gift on Christmas Eve and he looked curious about it all. We asked him if he wanted to open some presents with us. He gave us a huge smile and sad down with us. He would rip the paper and act like he was startled and would begin to laugh hysterically and clap his hands. He had recently begun to like the feeling of an adrenaline rush and loved being scared and startled. The tearing of the paper scared him, he experienced a rush of adrenaline, and he liked that. WHO CARED? My child was opening up a present and enjoying it.

Patrick opens his present one piece at a time

We allowed him to open up every single gift that evening, and then Christmas morning, he got to do it all over again (because we rewrapped everything). This year, the number of gifts under the tree is less, but that won’t stop us. We will be wrapping up old toys, put current clothes in boxes, just so we can experience the magic for which we yearned almost a decade. Christmas is about miracles, big and small. This time it was the simple act of opening up a gift about which others do not think twice.

Patrick finally unwraps it.

Find the joy of ripping off the paper of each one of your gifts this year, one tear at a time.


Comments : 6 Comments »
Tags: , , , , , , , , , , ,
Categories : Uncategorized

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.


Comments : 8 Comments »
Tags: , , , , , , , ,
Categories : Uncategorized

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.


Comments : Leave a Comment »
Tags: , , , , , ,
Categories : Uncategorized

Next Entries »