IN THE BEGINNING…some of the world’s greatest stories in history have begun with these evocative words. I’m not comparing this story to the greatness of the Bible, but showing the importance of understanding that a journey into the world of Autism must have a beginning to fully grasp the enormity it will bring to all your days, and all your years of constant involvement.
Often it may begin even before your child is born. As humans we possess the blessing and curse of imagination. Every woman will tell you that as soon as she receives the news that she is pregnant, that tiny little speck will be dreamt of, and prayed for. It becomes fully realized person with an imagined eye color, hair color, talents in music, science, art and undoubtedly, a genius. This is one of the reasons that a miscarriage is so gut wrenching for women; because in their minds, the child is real.
In understanding this, you can take your first step into the adventure in Autism. Let’s begin with my quest to understanding at a time when Autism was completely misunderstood. At that time, the medical community had only jut recently moved away from the “Frigid Mother” theory.
When introducing Jared to people, with the caveat that he is Autistic, I often hear the comment that he must be “highly functional” or “just Asperger’s!” I’d be lying if I said I don’t get a bit irritated. It seems now that everyone has someone in their family or in their social circle that has been diagnosed on the Autism Spectrum and, ergo, everyone is an expert.
The adult you see now is the product, for lack of a better word, of 31 years of hard emotionally exhausting work. When Jared was finally diagnosed, he was given the label of “Autistic,” pure and simple. But maybe that is easier to understand if I take this explanation back to the beginning.
Mayer and I were married in November of 1984. When I found out was pregnant, I was overjoyed. Early on, it was an uneventful pregnancy. Jared was due in mid-August. It was a horrendously hot summer, so I attributed my overall swelling to the heat. My doctors had me go 3 weeks late- even though my blood pressure was dangerously high. To spare our audience the gruesome details, I will say only that Jared was in distress, lacking oxygen and damaging his forehead for 3 days before being delivered by Caesarean Section (C Section). His forehead was bruised from his nose to the top of his head. Knowing now of the presence of some peri-autistic traits in members of our family, yes I think he would be quirky to a degree. I think, however, that the insults to his brain increased the severity of his Autism.
Jared was a difficult baby. He did not cry; he screamed. In retrospect, I can only imagine how horrible his headache must have been. He could not be comforted by being held or nursed; any physical contact caused him to arch his body away and cry harder. He preferred to be in his infant seat, swaddled tightly in a dimly-lit room. Ultimately, he came to tolerate being held long enough to be fed from a bottle with pumped breast milk. As a nurse, i felt helpless and that I should be able to “fix” whatever was going on. I was lost.
Jared cried incessantly. Nothing helped. There were times when I would put him safely in his bassinet, go to the next room, set a timer for 15 minutes, and then go into the shower to cry.
At about 3-4 months of age, some of the screaming stopped. I prayed we had turned some kind of a corner and that we would have the happy situation we had hoped for. I have some beautiful pictures of Jared, with his beautiful green eyes and a quizzical smile. I realize, now, that he was never focused on me, but on some spot past me that only he could see.
As when he was an infant, he was happiest lying on his back – watching a mobile, lying in his stroller – watching leaves move, but if a face intruded he would look puzzled and he would begin to cry.
In finishing this chapter, I would say simply that i spent lot of time puzzled and crying myself to sleep. I knew that something was wrong, but I didn’t have the first clue as to what it might be.
Autism wasn’t a term we had ever heard. That would change very soon and then nothing would ever be the same.
Sheila Max, Mom, RN,
(c) Ais4Autism 2016