The rollercoaster I so often refer to of this journey is filled with highs and lows. Yesterday was a bit of an unexpected low. You see, I walked into that hospital with Rowan KNOWING deep down what they were about to tell me, and I told myself, as well as the doctors that it didn’t matter to me. That an added diagnosis to his never ending list wouldn’t change WHO he was or really change the game plan for treatment much at all. Maybe an added therapy program, but what’s one more at this point? But yet somehow at the end of the two and half hour appointment, as the doctors handed me a million and one forms filled with evaluation summaries, an after visit care plan and a packet filled with reading materials my mood instantly shifted. And it wasn’t because of the diagnosis itself this time, it was the stigma associated with it.
Autism Spectrum Disorder…
A few months ago when the doctors watched him play at an developmental appointment and so carefully and tactfully tried to ask us, “Has anyone ever brought up concerns of autism? We think it might be beneficial to do testing.”…my first question in response was, “What would be the value added?” With ASD there is no cure or treatment, they don’t even know a true cause. So the course of action is therapy…well as most of you know, Rowan is in just about every therapy known to man and has been since he was an infant. ABA therapy (Applied Behavioral Analysis) would be the only thing to add to our list. They believe this type of therapy could be very beneficial to Rowan but thanks to the red tape of insurance, requires a formal diagnosis. So we proceeded with testing on that premise alone.
A two and a half hour appointment with two psychologists and a booklet of questions longer than the ACT for me to fill out….check.
A second two hour evaluation with another booklet and a speech and behavioral assessment…check. A few glasses of wine both of those nights…check. Now to wait for all teams to collaborate and come up with a determination one way or another…which brings us back to yesterday, the information sharing appointment.
She started the visit out with…”So last time we met, we had brought up concerns for autism….how do you feel about a possible diagnosis?” Ok, spoiler alert…it’s almost comical how docs sometimes tiptoe around hard topics. Others are beyond blunt but never the ones who dabble in the realm of psychology. Almost everything is prefaced with a “how do you feel about…” Although, in the midst of those difficult conversations, I thoroughly enjoy the comedic relief I find in those words. So as you can guess, yes they did indeed give him a clinical diagnosis and it was unanimous. When I asked the severity or where he fell on the spectrum the tiptoeing resumed again…”well…it’s an ever changing target and will change with additional therapy and over time…”, then the attending physician jumped in to save the fellow with a clear cut answer of “moderate to severe”. The conversation then took a dive into the future and school options for autistic children and grants and scholarships, most of which we do not qualify for. And with all of that, brought this overwhelming sense of heaviness.
See, a diagnosis does not define my son…not Coffin-Siris Syndrome, not autism, not global developmental delays. Those are all obstacles he battles daily but not who he is. This is something I have constantly said and instilled in him throughout this journey. I would take away his medical struggles in a heartbeat if I could, but I would do absolutely nothing to alter who he is. So when he was suddenly being grouped into this bubble for options in the future, it bothered me and became heavy so quickly. It brought me back to the conversations I had had with friends and family over the past few months when explaining we were going through the testing process. When I would bring it up, the instant reaction from most everyone was “he can’t possibly have autism because…” They were trying to be encouraging and supportive but by negating the diagnosis before he even received it, it just reiterated the stigma around it. I found myself getting so angry and defensive and all they were trying to do was help. One of the most definitive characteristics is lack of interest in other people and Rowan is a bit of a social butterfly so I can understand where they were coming from, not knowing other signs or characteristics. Though still, it was eating at me.
So I came home and I poured a glass of wine as I looked over all the forms they had sent us home with. Assessment scores and charts jumping off the paper at me. Then after flipping through them as the words all started to blur, I gathered them up, placed them back in the envelope, and sat on the floor to play with Rowan. You know what I saw?….I saw a happy, smiling little boy. So fascinated by his surroundings and how each toy works and moves. A child who can communicate his every emotion so clearly without words who loves music and the outdoors. A child loved beyond measure and so uniquely and perfectly made. I saw Rowan….a person…not a diagnosis, not a statistic, not a medical record number or a case number. A saw perfection in a tiny 25 lb., 34 1/2 inch package.
I pondered writing this entry. I questioned sharing this news so soon or even at all because in the grand scheme of things it doesn’t really matter. But I am his voice and his advocate and as such, I find it necessary to do my best to break the stigma. To help the world see beyond every diagnosis. A very wise woman I have the pleasure of knowing and working with, often says “A diagnosis can be a part of you, or it can all of you. You get to decide.” Wow…how powerful is that statement? For Rowan, it’s just a part of him and his story. These resilient kids are going to change the world one day as they spread light and show us all how to overcome big obstacles. How lucky am I to have a front row seat?!