Once upon a time...

Swimming against a current.  Biking mile 55 of 56 into a head wind.  Running up a hill for the final mile of the race.  As a triathlete, these conditions leave a pit in your stomach.  Race day morning, glancing quickly at your surroundings, you know whether or not you will have your game face on for the fight to the end.

“Your son has PDD-NOS.”  http://www.autismspeaks.org/what-autism/pdd-nos
As a mother, these words leave a pit in your stomach.  The breath leaves your chest and it feels like that headwind has knocked you flat on the ground.  Since hearing the official diagnosis, I have had to attempt to wear that game face daily…and it still is the fight of your life.  You are fighting not only for your sweet, innocent child who has struggles that no one else understands, but you are fighting for your family unity, for insurance coverage, for support from the community…and for the love of your child. 

Hunter was born full-term, after our first child, Paige, was born at 32 weeks gestation.  He was a healthy 9 lbs, 12 oz, and had a headful of hair.  He was a beautiful baby…smiled at everyone, giggled at his mommy and daddy, and met every milestone early.  He was fully walking at 10 months and was off exploring with his older sister from that moment on. 

His speech was incredible…being a Speech-Language Pathologist, I would give him regular language assessments.  I was quite pleased with his eleven signs and eleven true words by his first birthday.  He loved to kick the ball in the backyard and run around with daddy on the weekends.  We had visions of our son playing college athletics and following his parents’ love of sports.

Everything changed in the winter of 2010.  A trip to WI for our annual Thanksgiving celebration started with both children at the acute care clinic the day we arrived.  Hunter had some type of infection, never positively determined, but was given Azithromycin to treat a possible ear and sinus infection.  He had a fever of 104.  The second day of taking the prescription, he developed bumps on his lips, and hives on his bottom.  By the fourth day, he had bumps all the way to his fingers and toes.  We returned to the prompt care and he was prescribed predinosolone to combat the reaction.  We flew home 5 days later, and he screamed the entire last 30 minutes of the flight.  The very next day, we awoke, or entered, into our nightmare.

Hunter started eye blinking that morning, first a few times a day and then up to thirty times per hour.  I was convinced that he was having seizures, as these blinks were followed by blank stares.  We took him to the pediatrician a few days later and it was determined that he had a viral tic, a result of the illness that had attacked his body a few days earlier.  Two weeks later, after countless charting efforts, including precedents and antecedents, videotaping, and sleepless nights of worry, our pediatrician agreed that an EEG needed to be completed to rule out seizure activity. 

The EEG was normal- not sure the accuracy, since the staff never informed us that he needed to be sleep-deprived for the procedure, but normal results were indicated.  We saw a neurologist within the next month, and she agreed that it was a viral tic.  However, she told us not to rule out ADHD, Tourette’s Syndrome, Autism, and Sensory Integration Disorder in the future.  I remember my jaw dropping to the floor. AUTISM???  You think my son has Autism???  I wanted to scream but I calmly told her that my son had ZERO signs of Autism, was highly verbal, social, and had met all the milestones early and appropriately.  He never had a loss of language and had no sensory issues to speak of- yet. 

After meeting with our pediatrician, having him assessed by ECI, developmental psychologists, and colleagues, we were assured that he was just "quirky" and to ignore the suggestions made by the neurologist.  As a mother, the word "ignore," when associated with a negative connotation regarding one of your children, is not applicable.  Every waking moment I would silently assess Hunter, watching his eye gaze, his social reciprocation, his motor skills.  Slowly, other sensory issues started to develop.  He began to toe walk.  He would cover his ears for loud noises and scream during the "happy birthday song."  He began to detest "itchy" clothing and would attempt to rip the tags out of his clothes.   He started to arm flap and kick his legs when he was excited.  But NEVER did his language regress.  He continued to converse with us and play with his sister. 

When preschool began, I was pregnant with our third child, who we found out was another boy.  Not only was I nervous about another pregnancy, but the statistics of having a sibling with Autism consumed my thoughts and I tried so passionately to forget the chance that Hunter might have Autism- for the sake of our unborn son.  As school progressed, the teachers informed me that they had some concerns.  My fears were coming true- I can remember the day I asked his knowledgeable teachers if they thought my son had Autism.  Seeing the look on their face, I didn't even need to hear the answer.  At his three year check-up, my pediatrician and I knew that it was time to schedule the inevitable.  Our Autism assessment was not completed until December, 2011, after a six month wait-list.  The Autism Team at Children's did, in fact, diagnose Hunter with PDD-NOS (Pervasive Developmental Disorder- Not Otherwise Specified).  He didn't meet enough criteria for a full Autism diagnosis at that time, but he had enough characteristics (repetitive behaviors, motor movements, OCD, behavior struggles) to place him somewhere on that spectrum. 

In a half-ironman training program, five months of practice and discipline prepare you for the final day.  Race day for Hunter meant his Autism Evaluation.  

Just like a triathlon, you picture the race, you rehearse the pep-talk, you envision the end.  However, as many times as I told myself I would hear the words, “Your son has Autism,” it still didn’t quite prepare me like I thought.  

Envisioning the end of a race typically involves a celebration of some sort.  
That day, there was no celebration.  

There was no medal, 

no group hug, 

no high fives.

Instead, we were left with the journey....to heal our son.