Over the last year, Sam has made so many strides that his dad and I started to wonder if maybe he was losing his diagnosis. It is one thing to discuss it secretly between us, but quite another for his developmental pediatrician to say, “If he were to be tested again, he might fall off the spectrum,” as she did at our last visit.
So we got on one waiting list after another — for OT and speech assessments and the ADOS, or the Autism Diagnostic Observation Schedule. This is probably the only test that the boys have NOT had and it’s supposed to be a pretty good indicator of ASD, especially with very verbal kids like Sam.
Six months came and went and still no appointment for the ADOS. One day Kennedy Krieger Institute called to ask if we’d participate in a new research study, one that looks at identical twins to see if environmental factors, but not vaccines, might have something to do with “turning on” an autism gene. And could they administer the ADOS to both boys at our convenience?
I have always wondered if John’s early years in the hospital had something to do with the severity of his autism, if maybe a MRSA infection in a 4-month-old baby followed by a four-week course of vancomycin might have contributed in some way.
This study might show that it did.
Not that we would have done one thing differently back then. John needed heart surgery. Because of it he got a staph infection, but without the drugs to treat it, he would have not survived.
But what if we had known that John would be susceptible to developing autistic disorder if his tiny body experienced such trauma? What if even a little extra care in disinfecting his room, the crib slats; limiting visitors to just his parents — what if it could have prevented the MRSA infection? I have no doubt he’d still be on the spectrum, this is just what I believe — but would he be more like his brother?
And will this make me grieve if I find out?
I often come here simply to share something in our lives only to find that I’m not sure how I feel after all.