Thursday, September 27, 2012

One year ago today

One year ago today, we first heard the words, “Your son has PDD-NOS”.  My response, “What is that?”  The psychologist replied with a single phrase that shook me to the core, “It’s on the Autism spectrum.”  I felt as though I was living on a planet inside of a snow globe and someone shook it as hard as they could.  I wasn’t sure which way was up, what day it was, who my child was or who I was.  All I knew was, with that one phrase, my life would never be the same and that moment would be a pivotal turning point.

I received the word by phone while at work in my office.  I tried to listen and soak up as much information as possible, but part of me was so shocked that I went numb – and then broke down completely.   My boss told me to go home and take care of myself.  I’m so thankful that I work in a flexible, kind, understanding and human office.  It has made all of the difference over this past year.  I went home on that bright, warm September day, promptly hugged my son and stared at him, trying (unsuccessfully) to reign in that powerful wave of emotion.  We decided to go to Union Square Park so we could be together as a family and K could have some fun.  As we pushed him on the swing, I remember thinking, he is the same person now that he was when I left this morning, but he seems different.   At that same moment, my husband said the exact same thing. 

Autism.  How was that possible?  How could I possibly have missed that?  What did I do wrong?  When could we catch a break?  Wasn’t it enough that we lost Dashiell and were deprived of a “normal” pregnancy, but now we’d never know what being a parent to a “normal” child would be like?  What will happen to him when he gets older?  And then, I thought, “Thank God it’s not cancer, or some terminal illness.  We can deal with this.”

Looking back now, those thoughts seem selfish and ridiculous.  I wouldn’t trade Kannon, quirks and all, for anything.   The truth is, I went through a grieving process.  I think I had to trudge through the depths of despair in order to come out fighting.  I now realize that the conversation with that psychologist was a real blessing.  I embrace the label of “autism”.  That label has enabled us to provide Kannon with outstanding care.  The progress he has made in less than a year (he didn’t really start therapy until November 2011) is astounding.  That label has given me a deeper understanding of who my child is.  It has given me patience and understanding when he gets overwhelmed or struggles with transitions.  Before, he was just a tough kid, now I get it.  Now, I understand why he needed to constantly be bounced on the exercise ball as an infant.  I understand why he always needed to have a white noise machine.  I understand why he knew his letters by 18 months and was reading by 2. 

I also understand the answer to the question, “why me” that I asked myself repeatedly in those early days.  The answer is because I can handle it.  I have the wherewithal to be able to negotiate this ridiculous process.  I am blessed with a beautiful, warm, gifted child with a magnetic personality.  I am blessed with the best husband anyone could ask for.  This has only brought us closer as a family and cemented my husband and I as a team.  I also have the great fortune of having had arguably the best mother in the world.  Her example is emblazoned on my brain.  She may have died 13 years ago, but I think of her every day and wonder what she would do.  The answer to that question largely guides my decisions and there is no question that she is here with me.  This is not to say this has been an easy year.  It hasn’t.  At times, it has been downright miserable, but even in those moments, I need only look back to one year ago and see how far we come.   

Today, as I write this, I am filled with hope and gratitude.  In this short year, Kannon:
-          Has gone from eating nothing but pureed baby food to cooking and eating just about anything
-          Has enjoyed buying new shoes (before, when he would try on shoes, he would scream like we were cutting off his feet)
-          Largely stopped scripting his speech (it still happens, but much less)
-          Started connecting with peers
-          Started engaging adults and children in our building and on the street
-          Started sleeping through the night
-          Transitioned beautifully into a new school (one year ago, it took over 2 months and a LOT of tears)

I am so thankful to his wonderful therapists, his school last year, his developmental pediatrician, his nutritionist, his neurologist his geneticist, his new school and most of all, my husband.  With this incredible team all working together Kannon’s potential is unlimited.  I will be one of the driving forces to help be right there to help him reach that potential.  All I can say is watch out, world.  My child is going to make a huge and positive impact on this world!

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