Why It Was Necessary for Us to Mourn Autism for 24 Hours
Thinking back on when I first began trying to get pregnant, I recall conversations before, during and after visits to the OB/GYN between my husband and I as we weighed our options for conceiving the child we’d talked about so many times. In my early 20’s, I found out that I have a syndrome which would likely give me about a 20 percent chance of getting pregnant. To say we were devastated is an understatement. We were crushed.
My well-intentioned doctor, who sees couples like us all the time, was quick to offer a prescription for an infertility drug. When asked about potential side effects, the doctor quipped, “Twins!” That side-effect alone was enough to scare us, so I never filled the prescription. We decided we would commit to trying naturally for at least a year.
Fast-forward five months to a day I won’t soon forget. I took one of those home pregnancy tests that you can barely make sense of on a good day, let alone in a dark bathroom at 6 a.m. Pretty sure I read the instructions about the single line and double line a trillion times after the stick showed double lines. “No way,” I thought. “This cannot be right. Oh my goodness, I think I’m actually pregnant.” I proceeded to the couch to sit with our new Great Dane, in whom I confided my new secret.
We visited our doctor, who confirmed the pregnancy. What followed was several stressful weeks of worrying because the doctor and nurse repeatedly told me I would likely miscarry due to the hCG numbers not doubling as they should have been.
Well, I can tell you one thing. We proved each of them wrong, because I gave birth to that beautiful baby boy in May 2010. He had ten fingers and ten toes. He was perfect.
Soon, however, things just didn’t seem right. From the infancy stage, we recognized behaviors that just seemed “off.” He slept all day and was up all night crying. That doesn’t sound too unusual, right? Right. Until you factor in that touching or cuddling him to calm him only seemed to agitate him and make him cry harder and longer. Being a first-time mom, I didn’t think much of this except that I was frustrated. I was feeling like a failure. Nothing I did would calm him except rocking, and even that only worked sometimes. As he grew older, we noticed more and more delays that became as obvious as a smack in the face at each well visit. We always had to fill out a “milestone survey” to assess his development. Each time (even to this day), I’m never able to complete the entire survey because you have to stop once you have circled three “no” responses. Each time, this seemingly innocuous exercise gets me choked up.
After multiple assessments during and between well visits, we were referred to a state-funded early intervention program. They assess your child for developmental delays and will enroll him or her into the program if your child is under age 3 and meets the designated criteria. Since our son was just barely walking and pulling himself up at 21 months old and since he was still not speaking, he qualified for the program with no problem. He began receiving OT (occupational therapy), PT (physical therapy), speech therapy and an in-home early interventionist who worked with him on a combination of all three.
After months of various therapies, we continued to hear the phrase “sensory processing disorder.” Throughout this time, everyone kind of tiptoed around the autism diagnosis. In retrospect, I believe that those who were working closely with our family didn’t feel we would be able to hear the “A” word. These people, who became like family to us, seemed to know us better than we knew ourselves.
As our son was rapidly approaching age 3, he had to be evaluated by a behavioral psychologist to receive a formal diagnosis that would follow him into the public school system. After several visits that encompassed surveys, evaluations and lots of paperwork, it came. The formal diagnosis was given to us in the same room in which our son had been evaluated. It was a square room that somewhat resembled a preschool classroom, yet felt way more clinical. My palms were sweaty and my heart was racing as the psychologist detailed all that led up to his final conclusion. All I can remember hearing was: 1) Your son is on the autism spectrum, and 2) Your son’s developmental age is 4 months. I’m not sure which of those two statements was more difficult to hear in that moment — to be told that your almost 3-year-old child is functioning developmentally as a 4-month-old is devastating. In that moment, I wanted to scream at the doctor and call him a liar. He may as well have driven a knife through our hearts because that’s how we felt when hearing our child was autistic. Denial, yep, we were right there.
The phrase “24 hours of mourning autism” is not exaggerated. Twenty-four hours of mourning autism is precisely what we did. I was fortunate to have a friend who works with kids on the spectrum, so I called her the same day we received the diagnosis. She’s ultimately the reason we only mourned our son’s diagnosis for a single day; she made us realize that a diagnosis was not the end of the world. Our child was still the same child he was before receiving a diagnosis. This diagnosis was going to open doors for him to receive services when he transitioned into public school.
Don’t get me wrong, we are not happy that our son is developmentally delayed. We are not happy that he now has an autism label attached to him, along with the stigma it brings. We are not OK with any of this. However, during the 24 hours following the reverberation of the word “autism,” we mourned. We allowed ourselves to feel everything we heard from the doctor. We reflected on our journey up to that point. We realized that this diagnosis was not going away. We needed to put all of our energy into helping our son, just as we had been doing the entire year prior. Remember, he was born against the odds given to him by medical professionals. There was no way we were going to let this diagnosis beat us down.
If I could give just one piece of advice to anyone starting on this same journey, it would be this: Cry, scream and stomp. Feel what you are feeling, but don’t stay in that dark place for long. Feel it, absorb it and then resolve to move forward to get your child the help he or she needs. Denial is not the solution, but action is the resolution.