The weeks following the diagnosis were a blur. I woke up with questions running through my head, spent my days with worry, and went to bed with uncertainty. I spent hours on the Internet looking for information about autism, searching for a magic pill that would somehow erase the diagnosis. Instead, these remote, unemotional words would glare at me from the screen telling me that Will would never have friends, would be bullied in school, and would always be in his own little obsessive world. I sobbed often and saw my husband cry for the first time in our married life. I frequently found myself staring in the distance and feeling as if my body was extremely heavy. Just rising and taking care of normal chores took so much energy.
The weekend after the diagnosis, my mom rushed in and sent us off for a weekend away near Austin. We went to Chili’s and ate away our sorrows. I tried not to cry but the tears escaped before the meal had arrived. I had so many tears that I couldn’t control when they came.
We grieved all that we were losing. The idea of who our son was and the dreams we had for him had died, just as the dream of what our family could be had disappeared. We grieved over the uncertainty of Will’s future. The spectrum that autism diagnoses cover is so vast and we didn’t know where Will would land on that spectrum. Would he be with us for the rest of his life, not able to express himself or dress himself? Or would he be the next Bill Gates with his affinity for numbers and technology? Would he marry and have children? Or would he be a social outcast? As much as we wanted answers, all we had was our overwhelming grief.
Grief makes you want to be able to step out of a situation as quickly as you stepped in, to sigh and think, “Whew, glad it’s not me”. It is believing this is somehow happening to someone else, but then realizing in disbelief it’s happening to you and there is nothing you can do to rewind or fast-forward or pause or return the movie. It becomes an unwelcome family member who won’t go home, hanging out on the sofa, eating the last of your leftovers, and rudely interrupting your most intimate and private moments. Most of all, it’s like putting on glasses tinted in the shade of pain that all of life will be forever seen through. The tint gets less noticeable over time, but it’s always there, and the memory of how things looked without the glasses fades quickly.
I was in a fog for more than 6 months, but eventually I was able to pick myself back up and move on to a new normal. To moms with a fresh diagnosis for their child: give yourself time and cut yourself some slack. You will get through the initial grief.