Post #2: Navigating the Autism Wilderness

Working Mom

Have you ever seen a working mom pull quickly into the daycare parking lot early in the morning? Rest assured she’s in the midst of an incredibly fascinating 15 minute stage of transformation!  Similar to how a caterpillar molts into a butterfly and Clark Kent becomes Superman, working moms transform from messy haired multi-taskers into sophisticated deal makers in high heels.

I remember those mornings far too well!  On this particular day, I took one last swipe of Jake’s runny nose, grabbed his nap pad and lunch sack, and with a quick close of the backseat car door (my blackberry in hand of course), I threw my little Jake-Jake on my hip and swiftly clip-clacked my high heels up the sidewalk into daycare. I carried Jacob down the hall to his room, and after a quick smile and wave to the daycare director, I put Jacob down on the tile floor before hurriedly placing his backpack and lunch in his cubby.  As I turned to walk across the room to say goodbye to my little guy, I was interrupted.

“Hi Jake’s Mom,” said Connor, Ralph Lauren’s mini-me.

“Good morning Connor!” I said.

“Do you like my new shoes?  I just got them!” He said proudly.

“Wow! I really do.  Those look so good on you, Buddy.” We smiled at each other simultaneously which ended our conversation. So, I walked across the room to where Jacob was sitting to say goodbye.

“Goodbye Jake-Jake. I love you.” I said as I bent down to kiss him.

He continued to play with his car.  He didn’t say anything. He didn’t look up at me. Assuming I was intruding on his time with Lightning McQueen, I kissed his head, told him to have a good day, and headed into traffic.  However, on this particular day, my ride into work wasn’t consumed with prioritizing projects or analyzing a strategic plan. This day was different.

Denial Comes to a Close

Driving alone in my car, I over-analyzed the 20 second daycare scene as if it was on a repeat. I recalled sweet Connor excitedly talking to me in complete sentences while Jacob sat withdrawn in the corner of the room.  As I thought about Jake, I realized that he didn’t look at people’s faces any more, and direct eye contact with anyone was scarce.  My mind moved to the repetitious spinning of car/train wheels that had become his preferred activity. “That’s so strange” I thought to myself.  “He knows his shapes and colors, and is very smart. But…he hasn’t proactively talked about shapes, colors or counted aloud in several months.” My mind raced faster.  I tried to recall the last time I witnessed him doing pretend play, said my name, said his name, seemed happy, was engaged, laughed, talked, participated in….OH. MY. GOD.  I had a flashback to Jacob in the ER with his broken leg and huge bump on his head.  At the time I was so worried about whether he would ever be able to walk again, but THAT BUMP…the bump from falling off the playground equipment! It was huge! What if there was internal bleeding!?  What if there was brain damage!?  With shaky hands, I called our pediatrician.

Our pediatrician set up an appointment with a neurologist at Children’s, who ordered an MRI.  The MRI results came back clear, but as I sat in the room during our follow-up appointment, the neurologist listened to my worries and elaborated by saying that Jacob exhibited “autistic-like traits.”  

“WHAT?” I said in complete denial.  “It can’t be autism.  Autistic kids walk on their tip-toes, yell, and bang their heads on the wall.  Jacob’s not autistic.”  I started to cry just thinking about it. “Um, Amy?” He said in the most sympathetic voice. “You are sobbing and Jacob’s spinning the wheels on his car.  He hasn’t looked in your direction at all.  That’s not normal.”  Deep down I knew it wasn’t normal, and I knew that he had autism.

We left the appointment without any knowledge of what autism was, what we could do to make it better, and what our next steps should be.

Jacob’s Autism

As autism set in, it was like a mysterious dark hand reached into his body and slowly started pulling him out. Then eventually, it was dark. There was a deep distance in his eyes, hardly any language left, and no acknowledgement of people around him.

Even today, at quick glance you wouldn’t detect anything is wrong with Jacob.  However, spend a minute or so with him, and you’d quickly see just how very far from typical he is. Jacob lives in a world of confusion and frustration. His communication levels continue to be delayed, and as other children his age advance, the gap widens. He lives his days either staring off quietly consumed in a world of his own, or he's yelling repetitive chants or reciting movie scripts as he runs needless circles around the house. He is aware of his daily routines, recognizes his beloved family members, and is comfortable in the house where he lives, but he is still unaware of so much. He doesn’t know his middle or last name, doesn’t know our cell phone numbers, has no concept of time and can’t tell us when he is hurt.  The saddest of all is that he doesn’t know who Jesus is.

I would NEVER exploit Jacob or do anything to hurt him, but I feel that it’s important to describe some of Jacob’s autistic habits specifically.  THIS is what makes autism so terribly hard, not just for Jacob, but for all of us too.

Jacob has torn off all of the wallpaper around the bathtub in the master bath.  He is completely potty trained, but has sensory issues with a few things including the toilet seat.  He still “goes” in a pull-up every single day, and he’ll be 8 years old in May.  Yes, we are still changing diapers. Jacob has no food allergies, nor is he on a specific diet (although we tried the Gluten/Casein Free diet for a few months), but he has a very limited list of preferred foods.  He won’t sit still to eat at the table with us either. We were able to get Jake to eat a few fast food items this year for the first time - a major accomplishment!  In addition to autism, he takes medication for ADHD.  He also has bouts of OCD.  He sleeps approximately 8 hours per night (10 pm – 6 am), which is less sleep than the average 8 year old gets.  Those are our good nights actually!  He wakes up in the middle of the night at least once every couple of weeks and stays up all night long.  He won’t wear shirts with buttons, snaps, hoodies or collars.  He’s a t-shirt man only.  He won’t wear coats.  Thank goodness we live in Texas.  I could actually type pages more, but you get the picture.

The Wilderness

Obviously, you can see how life with autism has hindered any sense of normalcy. It is confusing, relentless and unforgiving.  There is no ending. Receiving the diagnosis was like seeing the fog of anxiety roll in; so dark and dense, that we didn’t even realize that we were headed down a new and very unwanted path.  The “big plans” for Jacob’s life were shattered.  Our dreams for his future (a major league pitcher, a CEO, a philanthropist, a missionary, an author) were….GONE.  We mourned the loss of our little boy.  The schools, therapists, programs, testing, doctors and teachers - not to mention the amount of money and time doing research that we've invested. It has been an exhaustive journey. 

If I had to illustrate what our journey has felt like, it would take me back to the fog.  It felt like we were normal, on the same path, until the fateful diagnosis.  Then suddenly, it was as if we were forced down a foggy path on one side of the ravine, while everyone else was able to travel on the other.  It felt like we were traveling through the cold, dense wilderness covered with thistles. We felt lost, scared and hopeless.  We would see little openings through the wilderness of the other side of the ravine, where the sun shone brightly and the fields were perfectly green and flat.  Why were we stuck on the mountain of despair with a maverick to tame, while all of the other families got to be joyfully moving right along in the sun?  This is what grief can do to you, and I’m so glad we eventually made it out of the wilderness. I can’t wait to share how we did it in future posts! 

Autism Today

As of today, there is no known cause for autism, and sadly there is also no known cure. The number of children affected by autism is growing at rapid speed. Approximately 1 in 110 children have autism. The spectrum is vast with a different mix of characteristics and traits displayed in each child diagnosed with this terrible condition.  You WILL encounter many children, teens and adults with autism, as will your children. 

The following video is one of the most poetic depictions of what parents go through.  I commend this dad, and always watch it as if it was me holding the index cards and Jacob's name was listed on them.  I'm grateful that he took time to record this.  PLEASE WATCH IT!