“After spending time with Ryan and according to the testing completed, I believe the best clinical diagnosis is Pervasive Developmental Disorder Not Otherwise Specified, or PDD-NOS, a form of autism.”
Then, silence. Nothing.
The only noise was the sounds of birds chirping and cars driving by outside. Cars filled with people. People who didn’t have this six-letter word beginning with A just come into their life. I wanted to get into the car with those people. To drive away, far away, and pretend the words uttered by this compassionate psychologist didn’t just change the rotation of my world.
In that moment, I didn’t have the strength to stand, let alone try and force my way into a stranger’s car. My knees were shaking, and I had that awful weak feeling in my chest. The silence in the room was deafening. The cars driving by on the street below were screaming and felt like mythological sirens trying to lure me away to some place, any place, other than where I was sitting. Then, finally, the sounds of birds and cars were once again drowned out by the psychologist’s kind, gentle voice wondering how we “felt” about the diagnosis.
I remember “feeling” sad, confused, angry, lost and alone. I remember crying — in the office, in the parking lot, in my family room, in my bedroom, in my husband’s arms, in my best friend’s arms. Everywhere.
It wasn’t until a few days after we first heard the word “autism” that the strongest “feeling” I had was the maternal need to protect. My son Ryan needed me, and no matter how much I wanted to escape this new reality, I wasn’t going anywhere.
In the days that followed when I felt like I was drowning in a sea of tears, I never once doubted my love for my son or worried how I would treat him, but I did worry about how others would treat him. I knew escaping in a stranger’s car wasn’t the answer. This was my son, his life, my life and our journey. I had to figure out how to get him where he needed to go, and there was no way I would let him go at it alone. I just wasn’t sure he far we had to go to get “there.”
You know when you are driving and it feels like you will never get where you are going? You distract yourself with snacks, coffee, music and whatever it takes to get you there. In fact, you become so distracted that you believe you must certainly be close, then you look at your GPS and discover you still have a long way to go. In fact, you wonder if you will ever get there.
There are moments on this autism journey where I believe I have come such a long way — then I volunteer to chaperone a school field trip and look up and realize I still have so much farther to go. Only, unlike my other road trips where I want to punch my GPS for reminding me I’m not even close, there is no anger, no road rage — just disappointment and surprise… in myself.
Ironically, it was a field trip last week that made me realize that no matter how far I have come, I still wasn’t there yet. In fact, there was one moment when I wondered if I had even gotten into the car at all. Yes, while I fulfilled my role as chaperone on that field trip, I realized I must not have even entered the destination into my internal GPS because in that moment I realized there are still times on this journey I haven’t even left the driveway.
I pride myself on raising awareness and acceptance of “different, not less.” I preach it in my writing, in my training, in my life, and yet as I watched my son trying to fit in with kids who weren’t so different, I kind of disliked “different” and shamefully longed for “same.”
I always have field trip anxiety. I know Ryan struggles to find out where he fits, but knowing it and seeing it firsthand are two very different things. As all seven boys in my group walked into the auditorium to watch the play, Ryan “scripted” (or repeated the same phrase exactly how he heard it) of a Yoda cartoon character he had been watching on YouTube. Much to my surprise, one boy chuckled and scripted back. The others, however, looked at one another with unspoken words. The words didn’t need to be spoken. They were written all over their smirks, expressions and sidelong glances.
The scripting went on a few more times and got louder each time, and the unspoken words from his classmates got louder, too. Watching this exchange was painful.
Even though I longed to run, the “feeling” to protect was much stronger. I smiled and asked Ryan what the script was from and told him how good he was at it. But the way I nervously looked at the other boys staring at him, hoping for their approval of his scripting, made me feel like a fraud.
Wait, what was happening to me? This isn’t who I am. This isn’t what I advocate for, what I blog about or what I wear on my sleeves. But in this instance, I wasn’t an autism advocate, an autism blogger or even a mother of an autistic child. I was just a human, and sometimes as a human, I’m vulnerable to forces outside my heart and my beliefs. And sometimes those forces kick me in the gut and slap me in the head. Just because I love, advocate and accept “different” doesn’t mean that “same” never crosses my mind.
As always, I should have taken my cue from Ryan. He was smiling and happy. He was pleased that a few of them knew the YouTube video he was scripting and that one boy scripted back. I no longer felt the need to escape the situation, and in the end, I sat and smiled at how far he has come — even if I was still stuck in the driveway.
Just like that same little boy in the psychologist’s waiting room all those years ago, I have always known to follow his lead. Ryan has always shown me where we need to go and doesn’t concern himself with how far he has come. He just sits back and enjoys the ride.
Regardless of how far I have come, what matters most to me is how far Ryan has come and how far he has gotten both of us on this journey. I’m so glad I didn’t jump out that window and hitch a ride with a stranger all those years ago. Oh, what I would have missed.
Yes, I admit I never set my GPS for this journey, but even if I had, no device, no person or no “expert” could have told me which way to go. And yes, there are still moments when I can honestly and shamefully admit that I long to go where everyone else is going. Most of the time, though, I just wish someone would give me exact directions and a detailed map to follow so I know where we will one day end up.
In the end, I have only one person whose lead I must follow. Ryan doesn’t need a satellite or an “expert” to show him the way. He’s finding his way on his own, and in the process, he continues to guide me, no matter how many times I wander off course and get lost.
While traversing this journey I have learned that regardless of how far I have come, with Ryan by my side, I will always keep going until we are there.
Follow this journey on The Awenesty of Autism.
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