There are two different journeys. We struggle with telling the story of autism because it can only come from our experience as parents. We don’t yet know what is going on or through Evan’s mind. He is 6 years old and cannot hold a conversation. We get snippets of insight and hope we are interpreting it correctly. We also hope that one day there will be a conversation, well, many conversations.
How do we balance the desire for bringing awareness to the struggles, the disappointments, the constant anxiety and isolation while protecting our son’s privacy and his future? How do we tell a story that is not all ours to tell?
As first time parents, we had no idea of what exactly to expect. Once we thought we had a clue, an Autism diagnosis meant we needed to change those expectations. But there is no way to know how. Autism is so different in every kid, there’s no new chart by which to track achievements by Autistic age. Second, somewhere in the back of your mind, you still hold onto notable “every kid” achievements as a baseline. This isn’t helpful for you or your child, because it is setting us all up for disappointment. What we work to do is to recognize and celebrate the importance of even the smallest, sometimes inconsequential things. Success is being able to go to the grocery store in peace, spontaneously stopping at a restaurant on the way home, or learning he has a friend he eats lunch with at school.
But to realize those successes, there are dozens of frantic, stressful trips to the store where we end up buying expired produce. There are 45-minute, screaming meltdowns in the car that leave us all frustrated with each other, a dark cloud hovering over the rest of the day. There are moments when we struggle to think of a child who is Evan’s friend.
Still, in a weird sort of way, we are seeing there are many paths to the same place. We were totally caught off guard when Evan read us a bedtime story. We struggled to not cry when he put his socks on, by himself, at age 6. He was so proud of himself when he crossed the rope bridge solo at the playground, and he shared in the moment with a first-time playground playmate.
Our son is like no other. He loves exploring the neighborhood. He’s just started showing us his sense of humor. And his love of Dr. Suess books has no rival. He has turned us into the parents that he needs and our family’s journey has just begun.
Jeff & Barbara, parents of Evan