Doubts

Last October, just a few days after we received Eli's PDD-NOS diagnosis, our family left to go on vacation in the Great Smoky Mountains.  It was a stunning time of year, with the most vibrant leaves, fantastic weather, and it was magnificent to just pull the kids out of school for a week and walk away from all of life's stressors for some much needed down-time.  We had rented a beautiful cabin in the mountains for the week and we were all so excited just to get away and be together as a family!

Despite our glorious location and my attempts to put the last few weeks behind me, my subconcious wasn't having any part of it.  Our second or third night there I had a terrible dream.  In the dream our older son, Ash, was trying to apologize, calm and comfort Eli, who was hysterically screaming and crying.  Ash kept saying, "I'm sorry Buddy, I didn't mean to!  I didn't mean to!" But dream-Eli would not be consoled.  He kept screaming, "How could you!?  HOW COULD YOU?!" over and over.... and suddenly.... I realized that Eli was screaming at ME!  Waves of horror washed over me and I woke up with his accusations still ringing in my ear. 

How COULD you let them diagnose me with an ASD, Mom?!  I'm in the National Registry now, and this affects my whole life and what if it's wrong and this will never go away now that it's been done and are you sure it's accurate?? YOU LET THEM!!!  HOW COULD YOU?!

That was the end of sleep for that night.  It was around three in the morning and the entire cabin was silent.  I was shaken and about half nauseous....what had I done?!  I had allowed them to slap a LABEL on my child that would never, ever go away!  What had I done to him?  How COULD I have let them ruin the whole rest of his life by calling him "Autistic"?!  What kind of mother was I?  I left our bed and went elsewhere in the cabin to get myself calmed down, so I wouldn't disturb Ben's sleep.  I was in utter tears and still couldn't get dream-Eli's screams out of my head.  How could you!?

Unless you have been there yourself, it's very difficult to understand the emotional trauma a parent goes through when you're told that your beloved child has a problem that you are unable to fix.  I'm sure all parents react differently.  My own mental anguish ran along the lines of guilt, doubt, self-blame, fear, and an overwhelming sense of loss for "future, adult Eli".  What did I do wrong during my pregnancy that caused this?  Am I actually to blame?  For the longest time, when E was a toddler, I was absolutely certain that it was my inability to breastfeed him that had caused his lack of interest in being held or cuddled, which of course had led to the severe behavior problems he displayed regularly.  Afterall, I'd been able to breastfeed Ash - look how close we were, how snuggly he'd been as a little guy, and how well adjusted he was now!  A very wise nurse early in our evaluation processes rolled her eyes at me in gentle mocking and said, "You sound like most mothers....trying to blame yourself for this situation.  But I'm gonna tell ya Girl.... YOU. DIDN'T. DO. THIS."  It was the first time someone had given me permission to believe that, and I'll never forget it.

A few hours after I'd been horrified awake, I crawled back into bed and sobbed in my husbands arms, told him about the dream and all my fears and doubts about the diagnosis we'd been handed a few days ago, and just accepted without question.  Shouldn't we have gotten second and third opinions?  Had we totally ruined Eli's life by allowing them to label him?  What had we done?!!  It was the first time I'd really verbalized anything about all the stuff that had been in my head since we'd received the diagnosis.  I guess it had taken me that long to let it sink in.

You have to understand something about my husband, Ben.  He's a really calm guy.  He doesn't really get excited.  His rear-end could be on fire and he might say, "Wow.  It's a little warm in here."  He's my rock, my sounding board and my voice of reason when I am no longer capable of keeping myself in check.  He said, "Honey.... have you done any reading about PDD-NOS?"  I admitted I really hadn't...when would I have had time??  We got the evaluation results and then scrambled to get ready to leave town for a week.  There'd been no time for reading, pleasure or otherwise!  Ben advised me to get online and look PDD-NOS up and read.  He assured me he felt confident the diagnosis was right.

That in itself made me feel better, because another thing you need to know about Ben... he is not a sucker.  He doesn't immediately trust something is as it seems unless you can pretty much prove it to him.  If he was feeling confident about this, that brought me down several levels on the panic-meter!

 So I read.  I found several things online that deal with the PDD-NOS by name and began to read about the behaviors associated with it.  I began to read and read, and I felt much better, because every description I found sounded like they were describing Eli himself.  I hadn't ruined my kid's whole life after all. I also realized, as I sat there on the porch of the cabin, wrapped in a blanket in the rocking chair, absorbing everything I could in the chilly autumn dawn.... I hadn't "labeled" him.  Instead we have empowered him! 

Our son is not his diagnosis.  My child is not defined by his diagnosis!  Our son is Eli! He is smart and hilarious and charming and sweet!  He's one of the most generous, kind people I've ever known, with a loving, giving heart.  He is patient, polite (um....most of the time!), helpful, amazingly tolerant and he has a grin that will light a room!  Yes, he has some eccentricities and some unique challenges (especially in the classroom) that may confuse or frustrate those who do not know him.  However, this diagnosis has given all of us the power to meet those challenges head-on.  How he succeeds and overcomes and meets those challenges...those are the things that will define him.

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