Diagnosis Stories: Charlie

The Diagnosis


On Saturday I took my 4 year old son, Charlie to a movie at the planetarium.  A special outing, just he and I.  As we sat in the lobby waiting for the movie to start, we looked at the pictures together of the stars.

“Mommy, Do you know how the stars were made?” he asks me.

“um. well. It’s kinda complicated,” I stammer.  At this point he launches into a detailed explanation of the big bang theory.  “like dynamite, Mommy, think of it like dynamite,” he finishes and looks at me with his beautiful blue full saucer eyes. I feel my heart swell with such love and pride for my sweet brilliant little son and can’t resist wrapping my arms around him and squeezing him tight.

“Does he have any strong interests, things he knows a lot about, things he obsesses about?” the doctor asks me today.

“Well he likes science a lot,” I say.  “But, not obsessively, he’s just interested in it, memorizes things.”  I tell her my Planetarium story to illustrate.  She smiles a knowing smile and scribbles furiously.  Suddenly, I want to grab her notes, rip them up.  Take my sweet memory back.  It’s not a symptom, I scream in my head.  He likes science, stars, dinosaurs, he is mechanically gifted, he is fascinated by types of good and bad bacteria.  These are not symptoms, they are gifts.  See him.  Why can’t you see him.

“His anxieties at preschool come from his inability to read social cues,” the Doctor tells us later in the appointment.  “He can’t understand what each different person expects from him and so he can’t figure out how to behave.”

“MOMMY,” Charlie screams as he comes running over to me on the playground one afternoon, “I made a friend!”  He is referring to an older boy I just witnessed give him a turn throwing a ball before going back to play with his friends.  He is beaming at me, again with the big saucer eyes, because he so desperately wants to interact with kids, but knows he often fails at it.

“Wonderful!” I cheer and smile the biggest smile I can muster to hide the aching in my chest. “I think that is wonderful, my love.”

It is painful and I am angry that so often no one seems to see the beauty of this boy that I see.  But, I don’t grab the doctor’s notes or storm out of the office because she is right.  I know she is right.
And I remember, the last time I sat in this hospital with my precious then 18 month old son and heard grim news.  Flesh eating bacteria in his neck.  80% mortality rate.  Don’t get your hopes up. We don’t know if he’ll make it.  In the quiet of the night, I held Charlie’s lifeless hand, while the ventilator pressed his chest up and down.  And I, the ever doubtful general non-believer, dropped to my knees and pleaded.  God please don’t take my child.  PLEASE. Please don’t take him.  I can accept anything that follows this.  ANYTHING.  I will deal with it, just please please please don’t take him from me.and my sweet boy fought, survived the unsurvivable.

So, here is the ANYTHING I prayed for.  Aspergers. o.k. We will deal with it.

He is still here and I know he will fight.

Thank you Linda, for sharing this story. Linda’s blog is http://outrunningthestorm.wordpress.com/.  
She’s an amazing writer. Go check it out! Do it. Do it now. 

2 thoughts on “Diagnosis Stories: Charlie

  1. Sounds like a pretty cool kid! Personal opinion: Whether a doctor says Aspergers or Autism or all's well, it changes absolutely nothing. You know your kid. The "label" gets him treatment, and helps you understand his difficulties. That's all. People can still recognize how awesome he is and recognize that some of what makes him such a cool kid comes from Aspergers. By the way. . . how WAS the universe created?

  2. I agree Jim, diagnosis, a necessary evil for treatment. NOT the definer of WHO she is to become!! I too, sometimes can't read social cues.:(

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