For a kid who doesn't really like change or unexpected plans, my Ryan loves a good road trip. A fully scheduled, totally planned, do not take a new route or hit construction delays, road trip. Yes, my boy is usually the first one packed and ready to go. Out comes the Mario duffel bag as well as Ryan's glorious smile. He picks out the EXACT number of outfits he will need based on the days we will be gone as I kindly suggest he pack an extra pair of underwear, "just in case". "I don't even know what just in case means, Mom, so I am NOT packing an extra pair of underwear"...clearly he has blocked out the "leaking" potty training days....I haven't. Ryan's toothbrush, toothpaste, inhaler and the exact dosage of allergy medication needed are secured in a plastic sandwich bag (and once the toothbrush is packed, no way is it coming out of the duffel bag again until we reach our destination, therefore, timing the road trip announcement is critical). The Wii, Nintendo DS and his iPod Touch as well as all charging apparatuses are secured in a separate bag. Then minutes before we leave, Ryan packs up his lunchbox with enough beverages to hydrate a camel along with two, not three, not four, two freezer packs, as well as his Yoshi bag filled with enough snacks to sustain a family of four on a cross country road trip. To complete the necessary road trip essentials, Ryan grabs his Mario fleece blanket/cape, his shee shee (silky baby blanket) and his green Yoshi (no other colored Yoshi is worthy of the trip) that sleeps on Ryan's head every night. For Ryan, it's the snacks, drinks and all things electronic that make the journey so much better than the actual destination.
This week's road trip lead us to Penn State for the National Autism Conference. Ryan and Emma get to hang with their Grammy and Pappy and do some of their favorite Grammy and Pappy's house things, like feed the ducks at the local community park, go to Dairy Queen for ice cream, and eat lots of Grammy's good, cooking....hold the meat please. While the kids get more and more spoiled, I get more and more educated in order to better understand, help and advocate for my son from some of the top experts in the field of autism. I have attended the National Autism Conference on several occasions, but the first year I went (only months after Ryan's new label) and registered as a "parent of someone living with autism", unlike Ryan, the road trip for me felt harrowing, but even worse, the destination was utterly heartbreaking.
It didn't matter to me that the bonus for checking the "Parent" box was attending a four day conference for only $25, what AWEnestly mattered more was the deep seeded anger and heartache I felt that I now belonged in that category. The why him, why me, why us started as soon as I received my name tag with the word "Parent" on it. It was the first time (except for maybe the moment the nurse put a newborn Kyle in my arms and I wondered, "OMG, now what?!") I did not feel extreme joy in owning that title. Forgive me, but I was naïve, scared and ready to vomit in the nearest garbage can. And that's when I saw her. The one person who I knew would hold back my hair while I puked and who understood how difficult this particular road trip had been for me.
Besides that dreadful woman at the registration desk who giddily smiled and welcomed me while she handed me my "Parent" tag, the first person I laid eyes on was Miss M, Ryan's first Occupational Therapist. I hadn't seen Miss M in over two years and she was still unaware of Ryan's ASD diagnosis. Miss M was the first person who tried to help me worry less about the destination and enjoy each and every sight along our journey. Miss M guided me and helped me get back on the right road when I felt so terribly lost and alone. Over the years, Miss M repeatedly assured me that regardless of any fancy label placed on my son, that Ryan would be fine, mostly because he had a mother working so hard to reach him. I wondered if she would still feel the same way about me if she knew I was desperately trying to rearrange the letters on my nametag from "Parent" to "Teacher" (by the way, it's not possible).
Miss M threw her arms around me and that's when the dam that I had been holding back on the entire road trip burst, all over poor Miss M. I soaked that poor woman with my tears and I'm sure even with Oxiclean, the mascara stains probably never came out of her shirt. As I sobbed in her arms, I hiccupped out Ryan's new heartbreaking label and how much I hated that I was attending this conference with my equally new label of Parent of an Autistic Child. With Denial and Clueless waiting for me at the registration desk and Miss M wishing she had not stopped for that coffee and could have possibly avoided this train wreck, I tried to pull myself together, but to no avail. Miss M reminded me of Ryan's strengths and reinforced that I, and no one else, was his best advocate so I needed to pull myself up by my equally tear soaked boot straps and fight for him. I knew Miss M was right, but at the time, I felt completely incapable of fighting a gentle lamb, let alone this big, scary uncertain autism thing. Miss M believed in Ryan, so I had to believe in him too. The problem was, I didn't believe in myself.
After Miss M quickly ran away, changed her shirt and fled from the conference center, I motioned for Denial and Clueless to join me in our first Parent of an Autistic Child workshop. It was hard. I did NOT want to be at that conference, I did NOT want to wear that name tag, and I did NOT want to belong in the same room as "those" mothers, but, this first stop on our road trip proved to be vital for both Ryan and me. I will be AWEnest, I pretty much cried the entire four days of that first National Autism Conference, but through my tears I witnessed other mothers who were traveling the same journey as me, but many of them started out on their road trip weeks, months and years ahead of me. Those mothers had so many critical pit stops to share with me.
As I sat shaking and nauseous in those conference center rooms, I listened to those other road tripping moms' stories and in their stories, in their smiles and sometimes even in their tears, I saw the one thing I needed most, hope. That four letter H word made that six letter A word not seem so scary. Hope helped break the paralyzing fear that autism had on my heart and hope helped open my mind to discover that autism is not a road block, it's just an unexpected detour. And although I was still angry that this unplanned detour, on this unscheduled road trip was leading me to a particular destination I never wanted to visit, I began to understand that my worries and fears of how we were going to get "there", caused me to miss so many wondrous sights along the way.
After Miss M quickly ran away, changed her shirt and fled from the conference center, I motioned for Denial and Clueless to join me in our first Parent of an Autistic Child workshop. It was hard. I did NOT want to be at that conference, I did NOT want to wear that name tag, and I did NOT want to belong in the same room as "those" mothers, but, this first stop on our road trip proved to be vital for both Ryan and me. I will be AWEnest, I pretty much cried the entire four days of that first National Autism Conference, but through my tears I witnessed other mothers who were traveling the same journey as me, but many of them started out on their road trip weeks, months and years ahead of me. Those mothers had so many critical pit stops to share with me.
As I sat shaking and nauseous in those conference center rooms, I listened to those other road tripping moms' stories and in their stories, in their smiles and sometimes even in their tears, I saw the one thing I needed most, hope. That four letter H word made that six letter A word not seem so scary. Hope helped break the paralyzing fear that autism had on my heart and hope helped open my mind to discover that autism is not a road block, it's just an unexpected detour. And although I was still angry that this unplanned detour, on this unscheduled road trip was leading me to a particular destination I never wanted to visit, I began to understand that my worries and fears of how we were going to get "there", caused me to miss so many wondrous sights along the way.
When Ryan sat on the floor spinning and staring at the wheels of his cars figuring out the mechanics of how the car goes, while Denial and Clueless' kids were vrooming and beep beeping their neurotypical cars all over the place, why didn't I realize how much smarter my future engineer was than those destined for the pit crew vrooming boys? Why didn't I embrace his differences rather than worry about them? When Ryan could imitate every facial expression and every voice on all his Thomas the Tank Engine videos, why did I obsess over how weird it was rather than acknowledge his incredibly unique and utterly unbelievable memory? And why did I spend countless hours searching the internet for treatments wondering how to "fix him" and make Ryan be like "all the other kids"? The reason is simple, I had not yet gone far enough on my own personal road trip to understand what Ryan already knew....it really is all about the journey. Getting there truly is half the fun, if you allow yourself to take in the sights, and not worry so much about when and how are we going to get there?"
Needless to say, the National Autism Conference this year was so much different for me than that first road side stop five years ago. It breaks my heart to see the parents who are as scared as I was, still clutching Denial's hand. As I actively participated in the workshops (not annoyingly so, like some people...yeah, you know who they are), I silently wished that at least one other mom new to this journey could see the joy in my smile, the acceptance in my voice, but most importantly, the hope in my eyes and that she traveled back from this road trip feeling a little less lonely and lost than she did when she arrived. Because no matter how lost and alone you may feel, there is always someone who has traveled a similar journey and recalls the shortcuts, the maps and most importantly the new and beautiful sights along the way. Even if that someone points you down a road that feels scary and uncertain, drop that clingy, dragging you down Denial's hand and grab onto a hand that will offer you guidance, compassion and HOPE.
We all worry so much about what lies ahead that we often miss the beauty that is in front of us today. I am as guilty as anyone. As I watched Ryan feed the ducks this week on our road trip smiling and giggling while he shouted, "I can't believe those stupid ducks attack each other for tasteless, old bread" and as I took in the beauty of my daughter, soon to be 7, surrounded by luscious green weeping willows (my favorite tree) it occurred to me how many times I have passed this park with not so much as a glimpse at the beauty it holds. So concerned about where I was heading, I failed to see where I was. When your eyes are so focused on the destination, you miss the glimpses of beauty that time so fleetingly grants us on this journey.
Of course we all need to have a general idea of where the road may take us, but we have to remember that unexpected stops, detours and road blocks along the way, may seem discouraging at the time, but, these unplanned surprises could be the very best part of the journey. So, keep your windows down, reduce your speed, turn off your GPS, and click off the radio. Open your eyes, your ears and most importantly your heart, because you never know what you might see. Just like Ryan, I suggest you pack up some snacks, grab your softest blanket and settle in because the journey may be long, it may be confusing and occasionally you will get lost, but never hesitate to ask directions from someone who is going the same way. And regardless of how many days you will be gone, take precautions by always, always heeding your mother's advice and pack an extra pair of underwear....just in case.
Road Trip Rules....there are none!
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