If you were to ask my siblings what they remember most about our son Benjamin’s first year of life, their unanimous answer would be his crying. In fact, Ben’s crying was so ever-present that my sister wrote the following ditty, which she would sing as she walked him around the house, trying to calm him:
My name is Benjamin and I like to cry
No one knows why
not even I
My name is Benjamin, my eyes are never dry
OK that’s a lie
but I do like to cry.
The unrelenting crying was only part of what made Ben a difficult infant. He startled easily to sound and was extremely sensitive to certain fabrics. He liked to be wrapped up tightly long past the age that infants are typically swaddled. And when I spoke to him, his gaze tended to drift to either side of my face rather than straight into my eyes.
And then we had him vaccinated.
The characteristics that we later learned are common to those with autism were present before any inoculations were introduced to his system. So while one scientific report had posited a potential link between vaccines and autism, we were not concerned. But for so many parents of children with autism, the question of whether vaccinations caused the autism sits permanently on the edge of their consciousness.
We never considered altering the vaccination schedule recommended by our pediatrician and the American Academy of Pediatrics for Ben or either of his two siblings. Autism presents challenges, some very painful, but it is not fatal. Polio and other communicable diseases are.
Now a study, published last Friday in the Journal of Pediatrics, confirms what earlier research has shown: there is no link between autism and vaccines. But will this latest study finally put to rest parents’ fears that they might have prevented their child’s autism by refusing the shots?
It ought to, but probably won’t.
Because as parents we are consumed with the “what ifs.” What if I had noticed the signs sooner? What if the experts are wrong and the vaccine triggered the autism? What if we had gotten early intervention therapies started sooner? What if I had insisted, despite our former pediatrician’s assurance that Ben was fine, that a second opinion was needed? Might I have done something to make my child’s life easier?
I was a model patient during my pregnancy. Diagnosed with gestational diabetes, I was on a strict diet to which I faithfully adhered. Once Ben was born, we read to him, talked to him, engaged him in social interactions. And he still had autism. I know that Ben’s autism was not caused by something I did or didn’t do. But beneath that conviction, in the deepest recesses of my soul, is a gnawing fear. One that I rarely acknowledge because it risks unraveling any semblance of fortitude. And if that were to happen, I don’t know that I could function on a daily basis.
In the aftermath of Passover, and with the Exodus freshly in my mind, I wonder if fear is one of the things that enslaves us as parents of kids with special needs. Fear that their disability was caused by something we've done. Or didn't do. The therapies we could have gotten. The early intervention we didn't get. And while these fears are understandable, they do nothing to help us help our kids. Decisions and choices from the past can serve as stumbling blocks or, when put into perspective, as learning experiences.
As we emerge from our festival of liberation, isn't it time that we freed ourselves from the shackles of "what ifs" and moved towards freedom?
Rabbi Rebecca Einstein Schorr is a CLAL Rabbis Without Borders Fellow whose work appears regularly on the Rabbis Without Borders blog and Kveller.com as well as a variety of other online sites. Writing at This Messy Life (www.rebeccaeinsteinschorr.com), Rebecca finds meaning in the sacred and not-yet-sacred intersections of daily life. Follow her on Twitter @rebeccaschorr.
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