Carson's story, Chapter 8

The Fall of 2005, after Carson's eye surgery and when he began to sit up, was a wonderful time.  I was having an easy pregnancy with Cameron and Carson was making progress.  It was a slow, but forward motion.  The best part was he was just so happy, so easy.  He rarely cried or got mad, he was curious about his surroundings, he was finally eating baby food so his color and weight was better.  He was still very small for his actual age (at 15 months he was around 12-13 pounds) but he was engaged, curious and happy.
We were still concerned with a few health issues-Carson was prone to projectile vomiting for no discernible reason, he snored like a grown man when he slept and he seemed to sleep more than he should.  We were diligent about keeping up with the specialty Doctors that had been with him from birth and we added an Ear, Nose and Throat Doctor based on the advice of our Cardiologist.  He had several ear infections that fall and seemed to pick up a bug every time I turned around.  We scheduled a sleep study to check for sleep apnea due to high pressures in his lungs.  He had large tonsils and adenoids in a narrow airway and it was causing his oxygen levels to fall when asleep as well as occasional sleep apnea.  The Doctor wanted to wait and repeat a sleep study to confirm as well as see if his airways would grow as he grew to accommodate the tonsils and adenoids.
In the meantime, around February, March of 2006-right before I was due to have Cameron, Carson started exhibiting many new behaviors.  He was hitting his chin over and over, first gently and over time he would hit harder and harder.  Soon he was finding toys and objects to use to hit his chin as hard as possible.  He was angrier than he had ever been, having meltdowns for seemingly small issues.  When once he was fun to take to any store for shopping, content in the stroller or cart, he soon started throwing massive fits-but only in certain stores.  At home during his meltdowns he would bang his head on the floor or the wall repeatedly, seeming oblivious to the pain.  To be clear, at the beginning, this wasn't happening every day and I had no idea if it was a Downs thing, an early case of the terrible twos or ????  Honestly, I was baffled.  As I think back now, I should have been more forceful when I asked his therapists, Doctors and every other professional if these were normal behaviors to really look at them and help find answers.  And then, Cameron was born and suddenly I had a newborn and a 22 month old who could not walk, feed himself or even crawl yet.  And that was ok-it was the self-injurious behavior, the meltdowns out of nowhere and for no apparent reason-that was what was making me think something wasn't right.  During the year he was 2, Carson changed so much it became obvious that we were dealing with something other than the Down Syndrome or the terrible twos.  I just wasn't sure what yet.