Awesome Guy

Fantasy Boy

"That's why I'm glad that I'm a boy," he said aloud, but was surprised to hear me inquire about his comment.  He was in his own world, mulling things over, thinking aloud.  "Why are you glad you're a boy?" I asked, always eager for a window into his intriguing world.  Though I admit I also like to get new ideas about how to see the world myself.  Declan has always put a refreshing spin on notions that have long been shelved in the warehouse of my mind in boxes stamped KNOWN.  "Because," he says, pulling the comforter up to his chin, "when girls have babies, their stomachs hurt."  I have allowed him to fall asleep in my bed that night, which is rare these days.  He is thrilled to be there and is more chatty than usual.  We are both laying down and I am on my side listening to him.  "How did you know that mommys' stomachs hurt when they have babies?" I asked.  "From the movies," he said.  "But how," he began, eyebrows furrowed in deep thought, "do they get the babies out?" he asked.  I notice that I am not hesitant to have this discussion with him.  In my gut, I know that he is ready for new information.  "Because," he continues, "they say, 'potion, now!' and I wonder why they say that."  I am looking at his sweet, earnest face, long, daring eyelashes blinking back at me.  I try.  I try to keep a straight face, but fail to.  I begin to laugh out loud, and he joins me.  He knows from my reaction that it is some kind of misconception.  I am savoring the mistake, my eyes tearing from the laughter.  "You are so cute, Boo-Boo!" I say, reassuring him that it's no big deal, charming even.  "No," I say, "they don't say 'potion, now!' They say, 'push now!' Because the mommy needs to push the baby out." 

What fascinates me about his thinking is how feasible fantasy still is in his world.  For Declan, drawing the line between fantasy and reality is very difficult.  He did not in the least hesitate in thinking that potion, a word he comes by in his video games, movies, and books, could have everything to do with how a baby comes into the world.  It reminded me of a passage I read last year, when I was researching for the 14th time whether or not I thought Declan had Asperger's. It described one subtype of asperger syndrome as "Predominantly Fantasy."  The book is Parenting Your Asperger Child.  The authors, Alan Sohn and Cathy Grayson write, "His distractions primarily involve his preoccupations with fantasy.  This means Nintendo...video games...fantasy books...show tunes--the list is endless, but often it involves electronics in some way.  Not only does he obsess over the use of the electronic equipment, but the fantasy reoccurs without it as well.  If the fantasy involves books or music, he doesn't need the actual object to experience its pleasure.  So he replays, recreates, or in some way engages in the obsession in his head.  As he is eating dinner, sitting in class, doing his homework, or talking to you, there is another tape playing in his head.  And this tape is about fantasy.  He does word-for-word scripting of dialogue and scenes in his head, combines different ones together, or makes up his own based on something he has seen or read." 

Autistic Tendencies

 
We went to see Dr. Moshe, another neurologist, to get a second opinion.  We wanted him to confirm Declan's diagnosis of Temporal Lobe Epilepsy, or more truthfully, for him to deny it all.  The nurse walked us into an examining room and asked us to wait for the doctor.  The shelves in the small, quiet room were filled with toys.  I scanned them looking for something that might appeal to Declan.  I passed over the cars and trucks, the legos, the action figures as usual, not without the pang, the fleeting and silent wish that he would, like most little boys I knew, be unbearably drawn to such a blatant display of boyhood crushes.  On his own, however, Declan sat beside the plastic purple dollhouse that rested on the floor beside the doctor's desk.  For a moment, I was encouraged that he chose a prop for pretend play.  An educator, I knew that pretend play was one of the most important developmental stages for children to enter, and in my opinion, should refrain from leaving until they were good and ready.  As Declan opened the tiny door of the house, I chimed in, "who's there?" trying to get something going.  Declan closed the door.  He was not interested.  Instead, he repeated the action, opening and closing the door, over and over.  The only shift in his play occurred when he moved his body in order to look at the door from another angle, moving so far to the side that he had to look out of the corners of his eyes.  There was something about looking at the door in this way that was satisfying to him, but like most of what was occurring these days, it was a mystery to us why.  

Dr. Moshe entered the room, introduced himself, and shook both of our hands.  All three adults stood talking above Declan, who continued his play on the floor below.  As we shared Declan's historyagain, now feeling more like a script, Dr. Moshe observed Declan.  Even when responding or asking new questions, his eyes never left Declan.  Then suddenly, as if bringing to our attention an untied shoelace, he stated, "he's autistic, you know." 

Brendan and I later learned from his neurologist, Dr. Orrin Devinsky, and from Dr. Cecelia McCarton, founder of the McCarton Center for Autism, that Declan did not, in fact, have autism.  Instead, the doctors that knew him well asserted that he had autistic-like tendencies, and that they were likely due to the seizures he was experiencing.  "Make the seizures go away," we heard, "and the tendencies will go away too."  Yesterday, I came upon the movie Autistic-Like.  I have not yet seen the entire movie, but am grateful to listen to and know the other voices out there that share similar experiences.  Meet Erik Linthorst and his family:

For more information about Autistic-Like, visit the website: http://www.autisticlike.com/

Rules

This summer I was at the library with Tova and her friend Anna.  As they looked for books, they came upon a book that they had both read and loved.  They urged me to read it, so I checked it out.  I was blown away.  This book so beautifully illustrated what life must be like to have sibling who is in some way different.  In this case, it was a girl whose older brother had autism.  I know as I read this book that both Tova and Anna must have been able to relate to her on some level, and I was grateful that they thought to share it with me.  Tova and I ended up reading it together at bedtime.  The discussions that came from it were invaluable.