When Reaching Milestones on Your Child’s Autism Journey Is Like Taking a Road Trip


Ahhh… the family road trip. When everyone gathers their devices, snacks, blankets and any other necessary items to keep us all sane while we spend 2.5 hours together… in a closed space… all of us… with no escape. Within 10 miles, the complaints begin: “Turn the heat down!” “Turn the heat up!” “Stop crunching so loudly!” “How much longer?” “Who stinks?” God help me, I hope I packed a bottle of wine and it’s easily accessible.

As we drove along, I kept watching the mile markers along the side of the road, the number increasing with each and every mile we drove. I have often seen these little green signs along the road, ticking off the miles of our journey, and wondered in this day and age, with all of our devices and gizmos like GPS, Google Maps, etc., would a time come when mile markers are no longer necessary? Would they go by the wayside with the 8-track player and the horse and buggy?

Mile markers serve several purposes:

They tell you where you are on your journey, which can especially come in handy when a squeal of “I need to pee and it’s an emergency!” is shrieked in your ear so you can quickly Google the closest rest stop near mile marker 44. Mile markers may also be necessary in a “true emergency” when someone is in actual distress and in need of assistance, by pinpointing the approximate location so assistance can arrive in a timely manner.

Mile markers typically coordinate with exit numbers. So if you pass mile marker 67, you know that exit 67 is right around the bend. You also know you saw a sign that at exit 77 there is a Sheetz, so you then can pray that the “emergency” in the back seat does not become a “true emergency” for another 10 miles.

Mile markers also tell you which direction you are heading. On most interstates, mile markers increase as you head north, or if you are traveling east to west, the mile markers increase as you travel east. Mile markers are a good reminder, in case you find yourself day-dreaming while singing to Adele, that you are heading in the right direction on your journey.

I have often described my son Ryan’s autism diagnosis as a “journey.” A journey that our entire family is taking to a place none of us have ever traveled before. On this road trip, I often find myself in the driver’s seat traveling on a road I am unfamiliar with. When I was cruising down the road with only my oldest son in the back seat (who is neurotypical), I don’t think I paid much attention to the mile markers as we traveled along, because I had nothing to compare that first journey to. But with Ryan, it seemed that at every corner we rounded, every hill we ascended, every exit we passed, I was constantly monitoring how far we had gone and how far we still had to go.

“Oh, we just passed mile marker 10, we should be quickly approaching the exit that will lead to eye contact.” Yet, when we sailed passed exit 10 and eye contact was nowhere in sight, I just held my breath for exit 11, assuming that mile marker was off by a mile or two. Exit 11 came and went, and I didn’t see behind those beautiful blue eyes.

The next mile marker assured me it would only be another 20 miles or so until echolalia got dropped off at exit 30 and more pragmatic language would join us on our road trip. Wrong again. Echolalia hung around for another 100 miles or so, and I tried hard not to look in the rearview mirror at the exit I felt certain we missed.

The pediatrician and all the childcare books assured me that around exit 52, there would be friends waiting to greet Ryan. As I slowed down to finally pull off the exit ramp, I looked up and exit 52 was as empty as the last 51 exits. There was not a friend in sight. I tried to assure myself that these friends must have taken the wrong exit and we would pass them up the road at exit 53, but exit 53 was as isolated as all the others.

As we continued down the road, I reminded myself that kids traveled at their own pace, their own speed and that not every child reached a particular exit at the exact same time as other kids their age. But when so many mile markers passed by with so few exit stops and little progress was being made, I felt terribly lost. Where was that Waze app 10 years ago when I really, truly needed it?

Looking back, it’s funny how many mile markers and exits we flew by that I have tried to forget over the years. Parts of this journey that were unfamiliar to me were scary and confusing. It was like looking at a map upside down. I was terrified that every exit we missed meant it was going to be harder and harder for Ryan to reach his destination. There were so many mile markers that pointed to exits that looked scary and abandoned because I had never taken those exits before.

It’s a lot easier to remember the many, many mile markers on this journey that assured me that my son and I were both heading in the right direction.

There was the mile marker where he wrapped his arms around me for the first time and I knew, without a doubt, that the love and sympathy exit had not been missed. In fact, I was so taken back by this sight on our journey that I wanted to take the emergency personnel exit so I could turn around and relive that moment over and over again and risk getting that fine that the sign warned me about.

Even though we missed the pragmatic speech mile marker at exit 30, we found another route to get there that just took us a little longer. To this day, I am amazed at how far Ryan has come at his own pace and the beauty I have seen by taking this detour. There is nothing I love more than hearing words come out of his mouth that I need to look up the meaning of on Wikipedia. I am so grateful for the sights I would have missed had I taken the quick route.

As we passed the soccer and baseball exits where some other boys got off, we kept going until one day Ryan found the music exit and told me to take this exit. The music exit was part of Ryan’s journey, and thankfully he knew it and has never looked back. Ryan has no regrets that he missed those other exits because he was never meant to take them.

Of course as with any journey, there were road hazards, blind spots, construction delays, detours and drivers that tried to reroute me from helping my son on his journey. But there were also beautiful roadside vistas, funny road trip stories, one-of-a-kind sights not to be seen anywhere else and amazing people we encountered along the way. People that pointed us in the right direction when we felt lost. All of these bumps in the road acted as reminders of where we were and where we were heading, without relying solely on those mile markers.

Ironically, I have been the driver on this journey and Ryan was my navigator, but, like any driver who thinks they know where they are going, I put more stock in those mile markers, in signs that were placed along the road by strangers, than I did my son. Unfortunately, more often than not, I got more caught up in those mile markers and exits I thought we should have taken than I did the person holding the map to his journey.

Ryan knew where we were all along. He knew where we were headed, and he knew how we needed to get there. I just didn’t see the signs. Not because I wasn’t looking, but because I was looking the wrong way. I spent too much time looking in the rearview mirror worried about what he missed, rather than looking at the expansive road in front of us on this journey to see what was lying ahead.

Fortunately, Ryan wasn’t keeping track of the mile markers or the exits. He has always had his eyes ahead, on the destination, and no one knows better than him exactly where he wants to go and how he wants to get there. I guess it’s time to let him drive.

boy riding on wheeled vehicle on track
Kathy’s son Ryan

Follow this journey on The AWEnesty of Autism.

The Mighty is asking its readers the following: Share with us the moment, if you’ve had it, where you knew everything was going to be OK. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

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