|Great eye contact, engaged|
We didn't always know Sophie had autism. In fact, in the first 18 months of her life she was as unautistic as could be. We joked she was our most social child (she's the third of four siblings), as she never seemed to have gone through the shy phase that marked both our older kids' early toddlerhood. She was unique always, though it is only the wisdom of hindsight that judges her uniqueness as something indicative of a disorder that would have made such an impact in just a few short months.
At the time we delighted in this gorgeous creature who hardly ever cried, never fussed or seemed unhappy and had an air of quiet repose always. Nothing pointed to an abnormality, quite the opposite. She seemed to be developing beyond her peers with what we judged as incredible maturity and self-awareness. She walked late, which only added to her cerebral image. At 18 months she had around 50 words in her vocabulary, including the names of all family members and many of our friends. She would greet everyone with a "hi!" and a grin. We saw our pedeatrician for the big developmental checkup at that time and left with only mild concerns regarding her not walking yet and none whatsoever regarding her social/cognitive/emotional development.
|Camping, playing with sand toys, interacting with older sister. No indication of autism|
Little did we know that in just 6 months we would be back in his office completing the autism checklist, which was followed by a developmental pedeatrian's evaluation and subsequent diagnosis of Autism and Global Developmental Delay.
The year of 2012 began, as in many households with small children, in a stream of colds, flus and general malaise that ceaselessly cycled through our family from January through April. Since any given week we were all either sick, recovering or both, initially Sophie's regression went unnoticed. We had also assumed that since she had finally started walking, learning new words had been temporarily put on the back burner. Around Easter she came down with the nastiest bug yet. A violent stomach virus raged through her little body for 2 weeks, leaving her frail and emaciated. Naturally we didn't expect her to be working on any new milestones as she recovered. Another month went by. Her appetite returned, her cheeks got rosy and her body regained its plump roundness. And we had to admit it then- our Sophie was gone. Her once bright and inquisitive eyes stared blankly above our heads. When was the last time she played with toys? We couldn't recall. We started to desperately try to engage her as she stared fixedly at the tv, Thomas the Tank engine, the only show she ever wanted to watch. When did it become an all-encompassing obsession?
Our realization of the occurring regression didn't stop it. Like a tornado destroying everything in its wake, the neurological storm that was going on inside our daughter didn't recede until it stripped away whatever it could, leaving just a shell of the vibrant little girl that once was.
|Off in her own world, among the leaves in the trees|
But... She is still sweet. Her smile still melts our heart. She is still seldom fussy or unhappy and she still exudes calmness and repose. She is worth fighting for and we won't ever stop.