2013-01-06

I am *not* Adam Lanza's mother

"Scott, you need to come look at this."

I laid motionless in my bed, scanning the symptoms over and over again.  It was like a horror montage- those  two minutes of reading illuminated years of confusion as scene after scene, memory after memory flashed through my newly comprehending, devastated mind.  Waves went through me-nausea, panic, disbelief, guilt, each feeling reaching a crescendo before crashing into the next crippling emotion.

There they were- all the quirks, the struggles, the endearing uniqueness, all on the screen.  All symptoms of autism. Kylie had just turned three.

The next few months were filled with despair, self-loathing, and worthlessness unlike I've ever known.  Did I do this?  Had my unhappiness about my unplanned pregnancy somehow trickled down into her little fetus brain and fundamentally changed something?  She's our firstborn... I had no idea what I was doing... if I'd been a better mom, would everything have been fine?

Before that day, before my dad ever so gently suggested I look into it as a possible explanation, I knew nearly nothing about autism.  Some contestant on America's Next Top Model had it.  Jenny McCarthy was discouraging vaccinations because of it.  That was the grand total of my knowledge.

I haven't made this diagnosis public knowledge for a couple of reasons.  This is the most personal thing I have ever written, and the most vulnerable I have ever felt.  It pains me to write, and brings me back to a terrifying and hopeless place.

Secondly, and more importantly, it's not my story to tell, it's Kylie's.  Sharing something so deeply personal should be her prerogative, and long before she & her peers are literate, I'll delete this post.

So why write it at all?  Because I'm not alone in my ignorance.  Though prevalent at an alarming rate, it's a condition with very little understanding and an even littler budget.  What tipped the scale for me has been the Connecticut shooting's aftermath.  I see more people aware of autism... and associating it with one of America's worst atrocities in recent memory.

After the tragedy, [name removed for privacy, but one of Kylie's classmates]'s parents got a phone call from relatives back in the states, asking if they were afraid someday their son would murder them and go on a killing spree.  I don't want that to be people's first association when they meet my beautiful, brilliant, tender-hearted daughter.  So without unloading a year's worth of research on you, here are some things to know:


  • Autism is marked by social awkwardness, communication difficulties, and repetitive behavior.  It is a neurological disorder, and is not contagious.  You/ your kid won't "catch" autism.
  • It is a spectrum disorder, encompassing very low functioning, very high functioning, and people everywhere in between.  They could be severely impaired and never speak, an overnight celebrity or the creator of Pokemon.
  • There is no known cause, cure, blood test or brain scan to determine its presence, only the diagnosis of a professional based solely on observation.
  • There is no "look" common to people with autism, often people respond with, "oh but he/ she looks so normal!"  Unfortunately, the higher functioning an autistic person is, the more likely he is to be bullied.

All kids with autism are not young Adam Lanzas, nor are they future Einsteins.  They are simply kids.  Kids in a big, confusing, often alienating world, who are very grateful for understanding, patience, and compassion.








4 comments:

  1. Dear Lindsey, I love you very much and I'm so proud of you for sharing this. I'm sorry for the pain and worry and wish I could take it away. I also know that you and Scott are intelligent and good and brave and strong. I know that you have been and will continue to be the best and supportive parents that you can be to both dear amazing Kylie and sweet little Avalon. My love and hugs to you all now and always.
    Uncle Rod

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  2. That is beautiful.. in the fullest interpretation. The video brought tears to my eyes and down my cheeks. Kylie is blessed in so many ways, an early diagnosis for one - and most importantly, you and Scott as parents. Your intelligence, dedication, and love are the tools you have used and continue to use. God bless you. We love you all.

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  3. I loved reading this. The stories that are the hardest to tell are often the most important. Especially right now, when people feel the need to form quick, uninformed, and unfair assessments of people with mental and developmental issues. Keep writing, and keep sharing your truth!

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  4. Thank you for sharing, Linds; here and all along the trail. When you left us a year ago, we were terrified for your little family and nearly crazed with that powerlessness that is the flip side of grand-parenthood. Thought our hearts would break at the seemingly impossible road ahead of you and the fear that our little Kylie must be enduring in that sea of change. A year later, I believe in Mommy Magic and hard-fought miracles and superheroes. You four ARE The Incredibles. I know this is a life-long journey, but you all have been tried in the fire and proven your mettle. In awe and admiration and eternal gratitude and love, Dad/Gramps

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