In Their Own Words – What a Difference a Day Makes
This “In Their Own Words” essay was written by Matt Rizzo, of Creve Coeur, Mo., who has a son with autism.
I will never forget the day. While the details escape me, the day will live on. Was it sunny? Was it raining? Maybe it was overcast. All I remember is how I felt. I was insanely nervous. I was dreading the appointment. It was a day that we had been building up to for the better part of a year. My wife and I were going to a neurologist to see if our son, Gabe, had autism.
For about a year we had been noticing that Gabe was missing developmental milestones. He was always on the low end of “normal.” His ability to interact appropriately with other kids of his age was drastically deficient. He began repetitive behaviors such as running back and forth, crashing into walls, spinning in circles, etc. So I did what any self-respecting father would do. I got on WebMD. (Sidenote: don’t look at WebMD. You will always end up with terminal cancer.) The good doctor told me what I had been fearing. Gabe had autism. But this was just the web talking. There were other signs of “normalcy” that I chose to cling to. Maybe this was just a phase. Then came the moaning and the lack of speech. He had a 40-word vocabulary, but chose to not use it. Instead he would spend the day moaning. We knew something was not right. We finally made an appointment with a neurologist to see if we had a true case of autism or if we were just being paranoid.
I remember getting to the doctor’s office and sitting in the waiting room. Gabe was restless as usual and wanted to run back and forth, so we let him. I was trying to stay calm. After all, for the last six months I had been looking at WebMD and was aware of what autism was, but not what it really meant. I knew that the disorder entailed social difficulties; I knew that speech was sometimes difficult. I knew some of these people were insanely intelligent and incredibly talented, but I did not know what that looked like or felt like.
We were shuffled into the office and Gabe played with some toys. The doctor began asking my wife and I standard questions. We answered with as much detail as we could and explained why we thought one thing or another. In retrospect, we were probably shading the answers in such a way that would make Gabe appear more “normal” than he actually was. After about 20 minutes of answering questions, the neurologist observed Gabe playing for about five minutes. It seemed much longer than that as we simply sat back and watched as well. The doctor then stopped and asked if we had any questions for him. I remember thinking to myself “Yeah, man, what’s up with my kid?” Fortunately, I allowed my filter to kick in and instead asked “What are your thoughts?” His response, “Oh, it’s autism”.
Three words I will never get out of my head until the day I die.
In that one moment my entire life changed. I was speechless. I have only found myself in that condition a few times in my life. I truly could not come up with words. I remember looking out the window wondering what all this meant. My wife began asking questions of the doctor and he promptly began surfing the web to print out resources for us. I felt like an airplane just landed on me. We left the doctor’s office with more questions than answers. These questions still keep me up at night. Will Gabe have friends? Will Gabe need assistance in living his adult life? Will Gabe be living with me and my wife ’til we die? Who will take care of him after we’re gone?
In the last year, those questions have been removed from the front of my mind, but they will always be there. Instead, we have learned to take each day one step at a time. There is so much we don’t know, so instead we focus on what we do know. We know that Gabe has made huge strides in the last year. Instead of moaning, Gabe tells us what he wants now. He is starting to mimic “normal” behavior. We know that Gabe is the hardest worker in the house. Gabe goes to school for eight hours a day, including therapy. He is not yet four years old. We know that Gabe has a big sister who doubles as a full-time therapist and gives more to her little brother than any six-year-old child should ever be asked to, and she does it with a smile. We know that we will always be Gabe’s voice when he does not have the ability to show the world his. Outside of this, we let each day happen and react to it as best we can.
April 14, 2009 was the darkest day of my entire life. But from that darkness came an understanding of who Gabe is. Until that time, I did not know how to build a relationship with my son. Having him diagnosed opened up a world to us that allowed us to shine light into the unlit corners of Gabe’s mind. Doing so has allowed me to finally connect with my son. He loves music. Every night, Gabe allows me to fulfill my childhood dreams of being a rock star when I play guitar for him while he takes a bath. He makes me proud every time he tackles me and punctuates it with a “Go Steelers!” He warms my wife’s heart when he is going to bed, hugs her, smiles and says “happy.” It was the worst day of my life, but my family was made better for it. My family has united around Gabe. We don’t kid ourselves and we don’t set expectations. We don’t ever think he will be “normal”, and honestly, I am not sure I would want Gabe to be anyone else other than who he is. He is our “Buddy” and we like him just the way he is.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.