How do I possibly begin this post, this mini-essay of sorts? I really don’t know. But I feel the burn, the excitement rising within me, bringing me life and begging me to write. It is time.
I know from writing long enough that I should start with a picture, a snapshot in time to pave the way for what I’m about to say. Yet the only image that comes to mind is that of the mounting pile of laundry of our family of five that’s piled in plastic baskets on the floor in front of the caramel-colored couch in the living room. Of course, there’s clothes and towels piled over the couch as well. What we lack for in life, we make up for in laundry. But that’s not really the point. It’s not where this story is headed.
I’ve wanted to write this post since Wednesday. But I didn’t know how to begin. On one hand, I want to let the world know what God has done and is doing for us and our son, even if it’s in an out-of-sorts kind of way. I want to shout for joy for what we have been spared because this news is good news and should be proclaimed from the rooftops. Yet I resist. It’s been difficult for me to share this part of Steven’s story because it will take our son out of one camp and place him in another, not that he can be sorted. What’s more, I don’t want to sound relieved by our news, yet I am all the same. Of course I am. What parent wouldn’t be?
It shouldn’t be difficult for you to imagine the state I was in last Wednesday morning, ten sharp. A bundle of nerves I was. A bundle of nerves doesn’t even begin to describe my anxious state. Let’s just say I was too jumpy to drink my morning coffee, which was ignored at my feet in a stainless tumbler from Starbucks, the one I chose for myself as a Christmas present a few years ago when Steven was in kindergarten. It’s built to keep my Tony’s coffee (sorry Starbucks) and Organic Valley vanilla soy creamer piping hot like nobody’s business. I knocked over the coffee tumbler with my foot twice while I waited for my iPhone to chime the opening verse of the Veronica Mars theme song, which I’m embarrassed to say is my ring tone. The phone call I was waiting for was from the autism center. It was supposed to happen four minutes ago.
***
“I’m sorry,” the child psychologist began, “but I found it difficult to put your son into a neat box.”
Of course. It’s ironic that I’ve clung to Sally Clarkson and Nathan Clarkson’s book, Different: The Story of an Outside-the-Box Kid and the Mom Who Loved Him over the last few months. Was the Holy Spirit going before me?
“…difficult to put your son into a neat box.
Not autistic.
…not neurologically different in any way.
Steven doesn’t have ADHD…
…unspecified anxiety disorder.
…possibly sensory processing disorder, but not autism.”
Steven doesn’t have autism. This is good news.
Yet I feel like a fraud. For crying-out-loud, I wrote an essay that was published on the Kindred Mom site about our decision to have Steven evaluated and some of what led up to that moment the decision was made. Also, I feel a little like Julia from Parenthood when she breaks the news to her sister-in-law, Kristina, that her daughter isn’t autistic like Kristina’s son, Max. Julia is conflicted, grateful, celebratory, guilty, yet relieved all the same, and so am I. We suffer from survivor’s guilt of sorts, Julia and me, because nothing is “wrong” with our children. Not that autism is “wrong.” I hope you know what I mean.
It all feels wrong to be rejoicing over the plot twist of Steven’s story. You see, I’ve had many friends, family and neighbors, even a writer, come out of the woodwork to support me as a parent of a child who was potentially autistic. Many took time out of their lives to share their stories, comment on my essay, send texts, Facebook messages. A handful of friends met for coffee or invited me into their homes to build me up, let me vent and share resources that have helped them as they learned to navigate life with autism. One friend from our old church took time out of her busy work day to meet. She’s on salary and was willing to work late in order to encourage me during a time during her workday that worked for me. I don’t even know her well. Another friend drove over an hour to meet late at night at an Applebee’s between her home and mine. For reasons like this, It saddens me to leave the autism community.
Leave? I was never even part of it.
Call me crazy, but at first I was kind of ticked off that Steven isn’t a child with autism. He has all of these spectrum-y behaviors, yet not enough characteristics across the board to get a diagnosis, to qualify for help. He is an outside-the-box child, for sure, but socially aware enough to pull himself together in certain situations. Also, autism is kind of a buzz word right now. Let me clarify. There’s much misunderstanding with autism but there’s an emerging understanding as people are becoming more aware of what autism is and what autism isn’t, as it looses it’s stigma. Can the same be said about anxiety?
My worst fear during all of the waiting time was that I’d find out that nothing was wrong except my parenting or that Steven was just in a really bad mood for the last eight years. I write this with a smile on my face because I’m being funny. But if I’m honest, this was my true fear. And it’s kind of what happened in the end. Well, not exactly. Anxiety is nothing to make light of. I should know, I was the poster child for anxiety. What’s the saying about the apple and the tree? Jokes aside, the evaluation experience with Steven is perhaps something we had to go through as a family in order for me to learn that I’m not a lousy parent, none of us are. I should proclaim this truth every day. I didn’t even realize that I believed this about myself until I wrote the Kindred Mom essay. There’s freedom whenever something is spoken aloud or written about. False beliefs loose their power to make way for truth as it rises to the surface.
Despite my mixed feelings, I can’t ignore the fact that I’m singing songs of thanksgiving, songs of praise. Even now as I type, Bethel Music and Francesca Battistelli’s There’s No Other Name fills the walls of my small family room and kitchen, my own holy ground of sorts. You need to know that much healing has occurred in my heart during the waiting, even now. You see, since the beginning of this process I prayed for my son over and over, for his here-and-now and for his future. You better believe I did. But I didn’t pray against autism, not once. And not just because there isn’t a cure. I didn’t pray against autism because I can see its beauty. It takes all kinds of people. And every single one of them is unique and their lives are worthy and valuable. And to loosely quote Temple Grandin, “If we didn’t have autism we wouldn’t have the geniuses in Silicon Valley.” Or Microsoft, as my friend B. says.
Let there be no confusion. This really is the best possible news. God saw fit to allow Steven to experience these markers of ASD in a way that, with help, should not hinder him in his adolescent years or carry into adulthood. There is no cure for autism, but in Steven’s story he gets to work through his struggles and come out on the other side. It’s not supposed to be a life-long struggle. I cringe as I write this because I don’t even want to know how it sounds to those who have a child on the spectrum. I don’t want to bring God into this to say he did this or didn’t do this. All the same, I don’t want to deprive him of glory. The truth is, in my life, there is no other name worthy of praise. There is no other name than Jesus. And for whatever reason he’s once again changing the course that we thought was clearly marked out for us. He’s done infinitely more for Steven than what I ever dared to ask for.
Still, we have a long road ahead of us. The road will be long and hard.
But we are ready to run.
