"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 did not have this 6 letter word beginning with A just come crashing into their life. I wanted to jump out the window and get in the car with those people. To drive away, far away, and pretend that the words uttered by this compassionate psychologist didn't just change the rotation of the world....his world...my world.
Unfortunately, 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 felt 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 remembered “feeling” disappointed that the diagnosis wasn't Asperger's Syndrome because, after all, people think Bill Gates has Asperger's and he's a successful billionaire. 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 A Word (which it became not so affectionately known as), the strongest “feeling” I had was the maternal and feral need to protect. My son 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 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, our journey and I had to figure out how to get him where he needed to go and no way was I letting him go 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, 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 freaking 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 I 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 that I wondered if I had even gotten into the car at all. Yeah, while I fulfilled my role as chaperone on that damn field trip I realized that 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 that 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, yet as I watched my son trying to fit in with kids who weren't so different, I kind of hated "different" and shamefully longed for "same".
I always have field trip anxiety. I know that Ryan struggles to find where he fits, but, knowing it and seeing it first hand are two very different things. As all seven of the boys in my group walked into the auditorium to watch the play, Ryan scripted some Yoda cartoon character he has 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. All of a sudden, I was back in the psychologist's office wanting to make a run for it. Watching this awkward exchange was painful and I wanted to run back to the school bus and escape just like I did all those years ago. Ryan seemed oblivious to the smirks and glances since one boy laughed...once. 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 looking at him, hoping for their approval of his scripting, made me feel like a fraud.
Wait, what was happening to me? This is not who I am. This is not 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 am 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, happy and unaware of the smirks and stares from the other boys. In fact, he was pleased that a few of them knew the YouTube video he was scripting and that one boy scripted back. In his mind, that made him "same", not "different" and 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 am so glad I did not 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, no "expert" could have told me which way to go. And yes, there are still moments that I can AWEnestly and shamefully admit that I long to go where everyone else is going. Most of the time though, I just wish that someone would give me exact directions and a detailed map to follow so I know where we will one day end up. What it comes down to for me is that 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 is 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.
Then, silence. Nothing.
The only noise was the sounds of birds chirping and cars driving by outside. Cars filled with people. People who did not have this 6 letter word beginning with A just come crashing into their life. I wanted to jump out the window and get in the car with those people. To drive away, far away, and pretend that the words uttered by this compassionate psychologist didn't just change the rotation of the world....his world...my world.
Unfortunately, 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 felt 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 remembered “feeling” disappointed that the diagnosis wasn't Asperger's Syndrome because, after all, people think Bill Gates has Asperger's and he's a successful billionaire. 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 A Word (which it became not so affectionately known as), the strongest “feeling” I had was the maternal and feral need to protect. My son 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 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, our journey and I had to figure out how to get him where he needed to go and no way was I letting him go 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, 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 freaking 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 I 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 that I wondered if I had even gotten into the car at all. Yeah, while I fulfilled my role as chaperone on that damn field trip I realized that 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 that 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, yet as I watched my son trying to fit in with kids who weren't so different, I kind of hated "different" and shamefully longed for "same".
I always have field trip anxiety. I know that Ryan struggles to find where he fits, but, knowing it and seeing it first hand are two very different things. As all seven of the boys in my group walked into the auditorium to watch the play, Ryan scripted some Yoda cartoon character he has 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. All of a sudden, I was back in the psychologist's office wanting to make a run for it. Watching this awkward exchange was painful and I wanted to run back to the school bus and escape just like I did all those years ago. Ryan seemed oblivious to the smirks and glances since one boy laughed...once. 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 looking at him, hoping for their approval of his scripting, made me feel like a fraud.
Wait, what was happening to me? This is not who I am. This is not 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 am 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, happy and unaware of the smirks and stares from the other boys. In fact, he was pleased that a few of them knew the YouTube video he was scripting and that one boy scripted back. In his mind, that made him "same", not "different" and 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 am so glad I did not 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, no "expert" could have told me which way to go. And yes, there are still moments that I can AWEnestly and shamefully admit that I long to go where everyone else is going. Most of the time though, I just wish that someone would give me exact directions and a detailed map to follow so I know where we will one day end up. What it comes down to for me is that 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 is 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.
The field trip I did not run from. Really glad I didn't.
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