Nine years ago today, my ex husband and I drove from our home at Fort Campbell, KY’s Army post to Vanderbilt Kennedy Center in Nashville, TN with Sawyer in the backseat of the car. As Sawyer sat peacefully sipped on his chocolate milk, watching the cars go by on the interstate, my mind was a sea of emotion.
For months, I had been observing my baby boy carefully. He had been late to reach almost all his “milestones” as a baby and toddler, and even after reaching them, he had a special way of doing almost everything. He held his cup from the bottom, instead of around the middle like most kids did. Instead of crawling, he did a little half-scoot thing with one leg tucked under him. He flapped his hands when he got excited, and his “speech” consisted of repetitive sounds like “mmm mmm mmm” or “na na na na na”. When I’d call his name, it took several tries before he would finally respond, and most of the time he’d only turn his head to look at me- he would hardly ever make eye contact. Playing with his toys consisted of lining them up across the floor or table, and he preferred toys with wheels so he could raise them up to eye level and study the wheels as they moved back and forth. He also loved to put his mouth on metallic objects; I’d often have to move him back away from the faucet during bath time so he didn’t put his mouth on it, or scoot him away from the legs of his high chair so he wouldn’t lick them. The only children he ever really showed interest in playing with were his sisters; play dates with other kids were often spent with me wondering why he didn’t want to run and play with the other children, and reassuring my friends’ and relatives’ children that Sawyer wasn’t trying to be rude; he just had a different way of playing than other kids. At that point, I already knew my sweet baby boy was delayed, and we were already participating in early intervention services to try to help him “catch up” to other kids his age. But his therapists could tell, and I already knew in my heart, that my beautiful boy was autistic.
I had started to notice Sawyer’s delay around 9 months of age. I realized he was “late” to do certain things and in the back of my mind I had started to wonder. By the time he was a year old and still not attempting to walk at all, and still unable to say words, wonder turned to worry for my baby. It wasn’t until a friend brought up the topic of autism that I put the pieces together. I spent many days and nights doing research, and by the time he was 15 months old I spoke to his doctor about my concerns; she agreed there was cause for concern, and that’s when we started early intervention services. After only a couple sessions, his therapists validated my concerns and admitted that they were approaching Sawyer as if he was diagnosed with autism, even though he had yet to be evaluated. At that time, the Army wouldn’t allow their doctors to test a toddler for autism until they were at least 2 years old. However, Sawyer’s early intervention team presented his case to the board of directors and his symptoms were so clear, we were referred to Vanderbilt for early testing. Sawyer was only 19 months old.
My ex-husband and I had long discussions about the evaluation. When Sawyer first started presenting a delay, my ex was deployed overseas and he wasn’t home to see what was going on. He thought Sawyer was just lazy and that he’d eventually catch up to other kids his age, and at first he disagreed that we should have him tested for autism. “He’s the baby, and we do everything for him… He’s just being lazy. He’ll be fine.” These were some of the things he’d say when I’d express my concerns. But mamas know their babies, and I knew in my heart there was something wrong so I pushed back and scheduled the evaluation anyway.
That morning, as we drove down to Vanderbilt, we didn’t know what to expect. We had no idea what the evaluation would consist of, and I was nervous. Would it hurt him? Would he cry? I didn’t want to subject him to anything painful or hard, but I also wanted answers. Part of me was deeply relieved that professionals could see what I saw, and it made me feel validated that I wasn’t crazy or making a mountain out of a molehill, as my mom would have said. But part of me was sad; I had friends with children on the autism spectrum, and I knew life could be very challenging for both them and their children sometimes. I thought about my friend talking about breaking down in tears one morning because her daughter had a meltdown over not wanting to wear corduroy overalls; her daughter had lashed out and headbutted her during the meltdown, busting my friend’s lip and nose. I thought about my friend whose little boy was 6 but never spoke a word had to use an app on an iPad to talk to her. Was this the life I was in for with Sawyer? I didn’t know, but I knew one thing; I wanted an answer, one way or the other. If Sawyer was autistic, I wanted to do everything I could to help him learn to communicate with us, whether by speech, sign language, or the PECS (Picture Exchange Communication System) cards we had been trying out with his early intervention therapists. I wanted to do everything I could to make sure our home was a safe, comfortable environment for him.
The evaluation was long and consisted of observing Sawyer while he interacted with toys and doctors in a different room. The doctors asked us a lot of questions about Sawyer’s home life, and how he interacted with his sisters and with us. They asked about his birth, too, and I wondered if the knots in his cord at birth had caused brain damage. My ex-husband and I watched through a two-way mirror as Sawyer all but ignored the doctors, and failed to follow simple instructions for how to do things with the toys. I was anxious; I desperately looked at the doctors’ reactions to see if I could predict the outcome, but they remained calm, their faces blank as they wrote on their notepads and took down observations. After what felt like forever, they brought us into the same room with Sawyer and the doctors gave us the news: Sawyer was a “classic, textbook case of autism spectrum disorder”. As we listened, the doctors gave recommendations for how to proceed with helping Sawyer overcome his delays and struggles, and after more than 4 hours, we loaded our sweet boy up and headed home.
The drive home was quiet. My ex-husband seemed upset that he had been wrong about Sawyer’s delays, so I didn’t say much and just reflected on my own thoughts. I was relieved to have the diagnosis; now that we had answers, we could figure out how best to help him. But part of me was scared; I knew our lives were about to change drastically. Our child had special needs, which meant our lives would have to center around him. How could we do this without alienating our daughters? I didn’t want them to grow up resenting their brother or us because he required more attention and care. We had already sat the girls down and explained what was happening with Sawyer and that he could be diagnosed with autism, and they had reacted in the most supportive way, but I was still nervous about how his needs would affect their lives- and ours. That drive home was filled with thoughts of “what ifs” for me. I spent the entire hour back to Fort Campbell, imagining different scenarios and how they might play out.
It took us a little while to realize that you can’t spend your life worrying about the future. Yes- it’s good to try to prepare yourself for what’s to come, but as any special needs parent will tell you, you can really only take it day by day and see where life takes you because we simply don’t know what the future will hold. That day, my baby boy was categorized as severely delayed. His therapists told us that he may never speak, but today he has a huge vocabulary and is one of the smartest kids in his class. The life I imagined back then is totally different than what it actually is today. Sawyer has his struggles, for sure, but he has been able to do things we initially thought he might never be able to do. He has braved the crowds at Disney World, he has played sports, and not only does he speak with an enormous vocabulary for a child, he also loves to learn and speak other languages as well!
Some people don’t want to have their children tested for autism because of the stigma that label comes with. They’re afraid of their child being limited or treated differently because of a label. I get it, and I can only speak for us when I say that the autism label has only ever helped Sawyer and our family. Having that diagnosis has allowed Sawyer access to services that have helped him to grow and thrive, and without that label he wouldn’t have had access to those things. Also, when Sawyer does reach a certain milestone or goal, it only makes us more proud to celebrate it because of that label.
It’s been nine years since our family’s lives were changed forever- nine years since we became more open-minded, more protective, more loving, more understanding, and more accepting of Sawyer and others like him. It’s been nine years since we got the label of “autism family”, and it’s one we wear proudly.