​My son Ryan was diagnosed with autism ten years ago. Wow, ten years…that doesn’t even seem possible. In some ways, it feels like a loooooong time ago and in some ways it feels like just yesterday I was sitting in that psychologist's office wondering if her garbage can was full because I was gonna puke in it.

Ten years...it's a lifetime, it's a blink.

I remember the years of worrying, Google obsessing and watching for every, single sign Google told me to look for prior to that ten year diagnosis. Why is he doing that? Why isn’t he doing this? Why does that freak him out? Why doesn’t this freak him out? Why is he alone? Why is he angry? Why is he crying? Why won't he eat? Why is everything so hard? Why, why, why? Little did I know, all those question would be answered with a six letter word…autism...and those six letters would have an impact on him and on me that I could have never guessed ten years ago.

Ten years...it's a lifetime, it's a blink.
 
There are still days that I ask why, but, mostly I ask what. What do we need to do to get from here to there? What supports need to be in place to help him succeed? What can I do to help him succeed? What does he need to do for himself to be successful? What can we do to help others? What is sometimes as difficult as why, but, I have learned that ten years in, many of those answers aren’t up to me alone like they were when he was five, they are up to him and that has been a tough lesson for both of us to learn and accept.
 
Ten years…it’s a lifetime, it’s a blink.

These past ten years, Ryan has come so far and so have I. I could write a list of ten thousand things I have learned in the ten years since we first heard The A Word, but, you wouldn't probably take the time to read all of them, so, I've decided to share with you the cliffnotes version of those lessons.

So here it is, ten things I have learned these past ten years while loving a child with autism:

1. It’s not about me. Sure, his autism has an impact on me, and our family, but, what he needs, what he wants, what makes him happy is about him, not me.
2. It does matter what you call "it". For years I had therapists say, “It doesn’t matter what you call it, just getting him the support is what matters.” I have learned that what you call “it” is exactly what helps get that support started in the first place, so yeah, it does matter what you call it. More importantly, one day it will matter to him what “it” is and give him a better understanding how “it” has impacted his life.
3. The word “friend” doesn’t have to be another dirty F word as long as you listen to how he defines that word.
4. “Different, not less” really is true, but, you have to see it, feel it and believe it or he NEVER will.
5. The debate over “a person with autism” or an “autistic person” is not up to me, you or the autism community, it is up to each individual with autism, so, if the individual is able to tell you what they prefer, ask, don’t decide for them.
6. Alone and lonely can sometimes by synonymous and sometimes they can be very, very different. It may depend on the day, the moment and the circumstance. The only way to know, is to ask.
7. "Lack of displaying emotions" or displaying emotions in a way YOU don’t expect, does not mean someone with autism is "lacking" emotions, how they demonstrate and display their feelings may be different, but, their feelings are never less.
8. Never say "never" and never believe anyone who tells you "never".  I mean it, never.
9. There are many beautiful ways to communicate feelings without ever uttering a word.
10. Autism is not a one way street. It is not only the job of autistic individuals to learn how to adapt to "our" world, it is also our job to understand and accept that although individuals with autism may see and interact differently in "our" world, they are just as entitled to be a part of it, free of judgement and condemnation.  

​
Ten years, it's a lifetime, it's a blink.

I never found out if that psychologist's garbage can was full or not ten years ago, because although I felt like puking, I didn't. I guess somewhere, my heart took over both my brain and my stomach and realized my son needed me more than my churning lunch needed to see the light of day. That's not to say there weren't ten thousand times where I failed him, where I was selfish, misguided, tired and just plain wrong, but, he always brought me back. He always guided me where he needed to go next, just as I know he will in the decades to come with 10,000 more lessons to learn.

I look forward to learning more as this teenage boy transitions to adulthood while I watch this beautiful transformation with an open mind and an open heart. Thank you Ryan for ten AWEsome years and here is to many, many more.

Ten years, it's a lifetime, it's a blink.

I think I will try and prop my eyelids open for this next decade.

"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.