As I was sitting in my church pew last week feeling sorry for myself, I felt as if I got hit over the head. I don’t know how he does it, but it feels as if my priest is speaking directly to me when I’m sliding into a mental funk. He has a way of knocking much-needed sense into me when I least expect it. Apparently, I needed a good smack upside my head since last weekend’s homily was no exception.
I have constantly struggled with having and not having a diagnosis for Ronan. Clearly the child has some issues. A few years ago I was only worried about finding out what to call it. I had settled for vaccine-induced autism but had a nagging feeling it was more than that. Was it a deadly chromosomal abnormality? Maybe it was epilepsy? Was it really autism? Could it be one of those mitochondrial diseases? We’ve asked top-rated doctors, conducted über-expensive testing and finally did receive a diagnosis. I thought I would be able to accept Ronan’s mitochondrial disease diagnosis for it took years to be identified. I’d waited a long time to hear an official diagnosis but I didn’t expect to hear that it had features of autism. Great. It’s one thing but acts like another.
Not a day goes by without my thinking, is it just autism though? I can recall doing massive web searches back in the early 2000s when Ronan was a toddler. I distinctly remember reading about autism and thought to myself, no, that’s not my son. I even went so far as hoping it would rather be more like Asperger’s, not just autism, because children with Asperger’s had higher levels of language abilities. I looked further at what the spectrum included and thought, w-e-l-l, maybe it is autism but then Ronan was never 100% fully on that spectrum all the time. He would swing back and forth with one day being more cognitively aware than another. He has words but uses them oh, so sparingly. He can take apart many things but hasn’t the fine motor capability or patience to put things back together yet. As Ronan spiraled further away from me and deeper into whatever it was that he had, my thoughts were of what Ronan couldn’t do, and I couldn’t free myself from those thoughts.
Little did I know that what I sought was freedom from some negative aspects of being Ronan’s Mom. I’d love to have freedom from a diagnosis, any diagnosis. I yearn to be free of the stressors of being full-time advocate to a little boy with all his special needs. I ache to be liberated from the worry, the pain, the limitation, the speculations and the judgment of others. That type of freedom, freedom from, holds me back from the freedom to.
Imagine where Ronan would be if I didn’t realize I have the freedom to voice my concerns. How much farther behind would he be if I didn’t have freedom to challenge his providers for better health care and education? I have the freedom to question those who shouldn’t have the power but, nevertheless who make decisions for Ronan. I have the freedom to be pro-active. I have the freedom to be annoying, to be loud and to be demanding when it comes to helping me help Ronan. I also have freedom to change my pessimistic thoughts to optimistic desires. The freedom to be and to do is much more liberating than freedom from.
I have always wanted to make things better, to right the wrongs with Ronan and his needs. I reflected on some of the choices I’ve made that turned our world upside. I chose to listen to the recommended vaccine schedule. I chose to hold Ronan down for his shots. I chose to not question a doctor we saw in 2005 who knew about mitochondrial diseases, He could have helped if he’d just stop talking and instead listened to me—I was afraid of his white lab coat position and couldn’t see past his credentials even though my son fit the mito profile all those years ago. Imagine how much we’ve gone through didn’t have to be because that doctor wouldn’t listen. As time went on I chose to ignore early signs of developmental delays and left them nagging at me instead. I chose to be free from the pain I would endure had I pursued a diagnosis sooner. I chose to be free from the changes I would have to take if said diagnosis was autism.
Freedom to choose what is right, which includes making Ronan’s life better, has always been a priority; I just didn’t know that it included so much. I know I can rid myself of the thoughts of being confined to a diagnosis written in Ronan’s medical record. A piece of paper that says one thing, and includes what Ronan may never do, means nothing compared to watching him grow and learn. Bit by bit, Ronan is progressing which gives me freedom to celebrate. I know he has it in him to do more—he’s “talking back” to me when I ask him to do something. He’s verbally responding, albeit garbled speech, but he’s able to tell me with a bit of an attitude that the chore I just asked him to do is not what he wanted to do…so there.
Freedom to gives me that chance to be in control of what I need to know and do for Ronan—to be aware that his limitations do slow him down. It gives me time to find something or someone else willing and able to work with whom he is now and where he’s going.
With all of my thoughts spinning around after church, I had an epiphany: I bet Ronan can talk. I mean talk in sentences instead of the word here and another there. I asked him, “Hey, can you talk?” The look on that kid’s face said it all. He smiled a coy smile like he’d been caught with his hands in the cookie jar. He looked straight into my eyes, smiled, looked away and said, “Ahhhhhhh!!” I made him look at me again. “Ronan! Can you talk?” He smiled again. I changed my question and asked, “Do you want to talk?” He immediately signed, “No.” I hugged him right there on the spot. He is free to speak but maybe he just doesn’t have the need or desire right now.
Whether he’s aware of them or not, Ronan gives me lots of choices. While it’s not what I would have anticipated as a parent, I do appreciate the freedom to choose to be a better Mom to Ronan. I never knew how much strength it would take to put his needs first. Freedom from his needs or freedom to make those needs easier to handle…every day I will celebrate the chance to do things better.
Cathy Jameson is a Contributing Editor for Age of Autism