Thursday, December 24, 2015

Lead the Way

May 2010
Friday morning was the much anticipated graduation ceremony at Caden's school. Although he wasn't graduating, we were still invited because the kids had been working hard on songs and dances. Was so looking forward to spending some time in Caden's classroom and we went armed with camera and video. Unfortunately Caden wasn't able to handle the extra people nor the change in routine and the way the morning unfolded simply isn't describable other than to say we've always known that we were in a war with autism to keep it from dragging our precious child into its black hole. We've had glimpses of that black hole before but nothing like we saw on Friday. In the ironic fashion that seems to describe our life, the only person who ended up being led out of the classroom by the teacher was me. Made a bawling idiot of myself…

I wrote this on a private family blog 5.5 years ago.  I thought about editing it a bit before sharing it today because it contains phrases that I wouldn’t ever dream of uttering today.  Then I decided to leave it as is because those are the words that I chose 5.5 years ago.  Our journey, my understanding, and life in general was just different than it is now.  Because I wouldn’t utter some of those words today doesn’t change the fact, though, that it is how I felt in that moment so long ago.

So why am I sharing this now?  Because there is something else I want to share…

December 2015
…Tuesday evening was the much anticipated holiday dance recital at our local dance school.  Probably doesn’t seem like a big deal as our daughter has made us into waiting-in-parking-lot parents by dancing almost as many nights as there are in a week.  But this, this night was different.  Dan came home from work early to help handle the nerves…..his? mine? Ours? Interestingly Caden didn’t have any nerves, and yet this would be his first ever dance recital; actually this is the first successful “neurotypical” “nonadaptive” “no buddy” activity that he has ever participated in.  He has been working so hard—he never hesitated his first night of dance class, and although the first few classes held some tears and rocky moments, he never asked to quit.  He hasn’t ever asked to leave; even when I offer him the option, he chooses to stay.  We’ve talked a lot about the recital and how it is okay to change his mind anytime.  He even made me promise that if he got scared on stage that I would come get him. Trust me when I say I planned to be on one side of the stage and had big sis on the other.  I mean there were a lot---a really, really lot of tickets sold for the event, and it was going to be on a stage in a venue he hadn’t ever danced at.  I was thrilled and proud of him for even thinking about going, but he was dedicated.  We went back stage, and he played with the boys in his class while he waited.  He got lined up, and marched to the stage when it was time.  And there in front of all of those people, including several of his favorite past autism therapists, he walked out on stage and he danced.  He did facials and he paid attention to the music.  And before he left the stage he took a big ol’ bow like he had been doing this is whole life.  Backstage I cried.  I doubt any of the dance teachers, parents or other dancers had a clue why I was crying so hard, but yeah I made a bawling idiot out of myself.

I can’t help but think that if his preschool teacher had been standing backstage with me Tuesday night that she would have cried too.  That little boy we watched ride circles on the playground avoiding any and all kids, that little boy who couldn’t handle any type of routine change or noisy environment, that little boy who stood up front that day without ever saying a word or acknowledging what was going on around him, danced his heart out and then told us all about it later in his very own unique Caden way.  We weren’t ever in an autism ‘war.’ We were trying to lead Caden on a journey doing things our way when in reality what we needed to do was follow.  Caden has always known where the path was—we just had to allow him the freedom to find it.  Ironic isn’t it?  I’ve always called this blog Caden’s tale, but have only just recently realized what a profound and guiding philosophy that needs to be for us.  There’s a saying in the autism community, “nothing without us” and I think I finally understand that.  Caden you weren’t the one that needed to change—we did.  Thank you for giving us the time and opportunity to realize that and become the parents that you deserve. 

Sunday, December 13, 2015

Love and a Touch of Heaven for Christmas

             “Mommy do you know what would be the best Christmas                       present ever?”
             “What’s that buddy?”
 “If on Christmas morning we went into the family room and all of our pets were home from heaven.”

Before his diagnosis, I was talking to an acquaintance who has a lot of experience with psychology.  This person assured me that Caden couldn’t possibly have autism because she had seen him smile.  I wasn’t even on the journey yet and had no idea if I wanted autism to be the explanation or not but I did know that something wasn’t quite right and that until we found “the label” we weren’t going to be able to seek out therapy or medicine or whatever it was that our sweet little boy needed to bring a bit of calm to his very chaotic world.  Honestly when he stopped talking, I didn’t know if it we were looking for something physical or mental or developmental.  I just wanted answers and the speech therapy evaluations were suggesting that autism testing was warranted.  Not knowing anything about autism, I asked her to elaborate and she very matter of factly told me that ASD kids were emotionally cold. 

Let’s just say the first evaluation didn’t leave any room that DSM code 299.00 applied.  Maybe it is my years and years of practice with coding for insurance but as much as is blurred about that diagnostic findings meeting, I walked out with those numbers as clear as day in my mind.  We waited another 6 months and re-evaluated at another facility and walked out with the same verdict.  Caden was on the spectrum and no one had any doubt about that. 

I did what any terrified parent would do, I started reading anything and everything I could get my hands on.  I talked to anyone and everyone who had ideas about autism.  I learned the language, the therapy options, and what other conditions liked to hang out with ASD. In other words I thought I became an expert. 

December is the 7th year anniversary of his initial diagnosis.  Looking back now I realize how na├»ve some of my ideas were.  For example I thought problems would resolve as we worked through therapy; I never considered that as we would overcome one thing, something else would pop up in its place.  In other words it didn’t dawn on me that autism would grow and change as my son grew and changed.  As I have talked about here and here, (oh and let's not forget here) over the years it has also been painfully obvious that while I tried to act on the research I was finding, I was wrong a lot.  Just like Caden’s talents are different (not better, not worse, just different) than his big sisters, his autism like his personality and talents is uniquely his own. 

Maybe some individuals with ASD are emotionally cold.  Or maybe they don’t know how to express the emotions they feel.  Or maybe the emotions are too overwhelming so they shut down.  Or maybe the emotions are felt so deep a fight or flight response is necessary in order to cope.  Or maybe a hundred other scenarios I’m not even thinking about.

I just remember recalling my acquaintance’s words in the hours following Caden’s diagnosis and wondering if that meant he would spend his life alone.  In my darkest hour, I even wondered if it meant that he didn’t and maybe never would love me.  Flash forward to today.  One of Caden’s favorite and most reliable coping mechanisms when life starts to get overwhelming or hard is to tell us that he loves us.  He has to repeat it until hears that we love him too.  His need for that reassurance is desperate and genuine as is his perfect Christmas morning scenario.  I’ve cried a lot today—some of those tears are remembering how much I miss the loved ones we have lost and some of those tears are at the purity, beauty, and love he displayed in that brief interaction. 

Knowing the depth of his love for so many things just might be the best Christmas present that I could ever wish for although I have to admit a few visitors from heaven would be pretty amazing too.

Monday, December 7, 2015

Blue Eyed Believer

Those big beautiful blue eyes….

I’ve written about them so many times in so many different contexts, but recently those baby blues were looking up at me as tears slowly filled them.  He asked me again, “Are you sure mommy?” 

“Yes baby, I am sure.”

“But mommy, I have believed for so long.  What about the stockings mommy, maybe he does those?”

“Baby, the important part isn’t who puts the presents under the tree, the important part is that we believe.  We need to believe in miracles like Santa…as long as we believe in our hearts he will be real.”

“Do you believe mommy?”

“Yes I do.  Mommies and daddies just help Santa out, but the magic of Christmas, well, that is something so much bigger than anything mommy or daddy can do.  And honestly pal we believe in a lot of things that we can’t see.  Some things we see with our eyes, and that’s how we know they are true.  Some things we believe with our hearts, and that’s how we know they are true.  Most of the time, the things we have to see and believe with our hearts are the most important things in the whole wide world to hang onto.” 

The conversation hurt so much more than I ever expected it to.  As a kid, I didn’t want to stop thinking that Santa left the presents, so I just took what my head knew and let my heart run with what it wanted to believe.  I think the same thing happened with my oldest child; as she is fond of saying she believes in believing.  I guess I hoped the same thing would happen for Caden, but I should have known that the literal nature of his autism wouldn’t allow that to be the case.  Friends recently told him that Santa didn’t visit their house, and so it was inevitable that I talk with him.  I don’t think either of us expected how much of his innocence I would shatter when I said, “pal I need to talk to you for a few minutes.” 

After a few minutes of silence, he asked if he could go upstairs.  I assumed he wanted to go to his room; it is a coping mechanism that he learned in therapy…ask for a few minutes alone when you need to calm down or gather your thoughts.  I sat downstairs and replayed the conversation in my mind, and wondered what would happen at bedtime.  I don’t quite know what happens at bedtime, but it is something I’ve experienced with my anxiety issues.  There is something about the sun going down; maybe the anxieties are more visible in the shadows of darkness, or maybe that’s just the point of the day when your mind and body can no longer cope.  Maybe it is because in the silence of the night you can truly hear your own thoughts or maybe the night masks the tears that fall. 

As is often the case though, I underestimated his ability, or maybe I underestimated the depths of his heart because tears didn’t fall again at bedtime.  In fact, the subject didn’t come up again.  Then yesterday, his sister asked what the Christmas tree represented, and as I consulted the all-knowing Google, I started to explain that the fir tree is used for the holidays because it never loses its leaves like other trees.  Before I could explain what that symbolized, Caden responded “just like we never stop believing.”  The tree doesn’t fall apart, and neither should the things in our hearts. 

That isn’t exactly what Google stated, but I’m pretty sure it is the best answer I will ever hear for the tree, for our beliefs, and for our hearts.  It never ceases to amaze me that for all the challenges autism presents for my son, it also provides him with this amazing filter to see the world through. The innocence of his mind and the purity of his heart allow him to see so much beauty in the world; beauty that most of us will either never see or have long since forgotten.  As the numbers continue to grow, I wonder if the hope for our future lays within those who have the ability to truly see the world in a different light, in a different shape, and at a different angle.  The challenges don’t cease and the frustrations don’t end, but just for today I’m going to allow myself to revel in the idea that our hearts, like fir trees, have the ability to stand fast throughout the seasons, and for this I must offer my whole-hearted thanks to my son for allowing me to see a sliver of the world through his beautiful blue eyes.