Today is The AWEnesty of Autism's third birthday! Or would it be third anniversary? I'm not sure? I sort of delivered The AWEnesty of Autism to the internet so I guess that is kind of like a birth, right? Yet, this blog has become such a part of me that I do indeed feel married to it, so perhaps a third anniversary is what I should call it, but, I don't think you get cake on anniversaries and you definitely get cake on birthdays. Maybe I should just simplify things and just say that three years ago today, I posted my first blog on The AWEnesty of Autism. My Ryan would say that this is the literal and appropriate thing to say because starting a blog is neither a birth or a wedding. Suddenly, I feel like this is a lot of to do about nothing.

Well, I started this post so I might as well finish it even if I don't know what to call it because three is kind of a big deal. Maybe not in the blogosphere world, but, in the world in general, the number three is big. Think about it, there were Three Muskateers, Three Little Pigs and Three Blind Mice. If there had only been two, the pigs may not have ever survived the big bad wolf, the mice may not have outrun the farmer's wife and with one muskateer missing, the other two may have never made it to Paris alive.

Time is divided into three parts, past, present, and future. You get three strikes in baseball before you are out. Even in writing there is something called the "rule of three" or "power of three" which is a writing principle that suggest listing things in threes is better, funnier and more satisfying to the reader, just like I did when listing the Three Muskateers, the Three Little Pigs and Three Blind Mice. Remember when you were living throught your child's terrible twos and couldn't wait for three? Three was like a magical, mystical number you never thought you would see.

Three may be some magical, mystical number in the world of toddlerdom, writing, measuring time and stories (unless of course you were the big, bad wolf and wound up in the third little pig's stew on an empty stomach), but, for me three is a wonderful number that reminds me how much I have learned in three (literal) years.

Three years of AWEnesty has taught me many, many things, but, here are twelve (a multiple of three) that stand out the most:

1. I blocked out a lot of ugly sh**. Writing brings back tons of memories that clearly I tried so hard to repress. Memories that I would have rather left buried in the graveyard of my mind filed under "Ugly Sh** Not To Be Dug Up and Relived Again". However, if I wouldn't have dug up those memories, I would not have had the honor and the privilege of being reminded how far Ryan has come, how far I have come.

2. There are a lot of people who feel as lonely and lost as I did when I first heard The A Word. Those same people say I have helped them feel less alone, but, little do they know, how lonely I was, until they let me in.

3. People want to be reassured that their child will be ok, but, they also want to know that the tough moments, the moments that scare the hell out of them, the moments they aren't proud of, happen to other parents as well. They want to be part of the "Damn We Try Our Best, But, Some Days We Suck" club. There is always an opening and room on the club's roster for more because all club members know that even on the sucky days, the days are still filled with love.

4. "Different, not less" is true. However, wishing from time to time that different was easier for you child and for you, is not something to be ashamed of. You know your child is perfect in your eyes and that you love them just as they are, but, worrying about "different", crying over "different" does not make YOU less.

5. Ryan's voice is louder and more powerful than any words I could ever type, speak or shout which is why if you want to understand what it's like to parent a child with autism, you can ask me, but, if you REALLY want to know what it's like to live with autism, then ask an autistic individual, not a blogger, a mom, a dad or an "expert". We don't know, but, they do.

6. There are many proud autistic people that don't want you to spend all your money racing for a cure for autism or a treatment alternative to change the essence of who they are. They want you to put your money into supporting people with autism, into helping them be successful in a world that is "different" to them. Some autistic individuals who have a voice are trying to be heard, not just for themselves, but, for those who have no voice by educating people that regardless of where someone falls on the autism spectrum, we should all understand that different is not bad, different is not scary, different is not less, different is just different.

7. I use to be terrified of hearing The A Word, it was the only A Word I did NOT want to hear. Today, the only A Word I fear not hearing is Acceptance.

8. When you write a blog, when you share your heart, not everyone will agree with you, support you or understand you. That's ok. The ones who do, are the ones you keep close and the ones who don't, the ones who are filling the comment sections with ignorance, are still talking about autism which is more than they were doing before they started trolling on your page.

9. Using the terms "autistic individual" or "someone living with autism" are not interchangeable, if you are unsure, ask the autistic individual or the person living with autism. It is for them to decide. 

10. It really does take a village and I am so proud to be part of this village.

11. Stopping The AWEnesty of Autism would be "ridiculous". I have told Ryan repeatedly, if he ever wants me to stop the blog, it is his choice, his right to say "done". I recently asked him if he still was ok with me sharing stories about him, about our family on AWEnesty and reminded him again that if a time comes that he wants me to stop, I will. "Why would I want you to stop? You keep telling people all the stuff I'm good at and how hard I try when things are hard and that autism isn't something bad! Stopping would be ridiculous!"

12. "Autism isn't something bad."

Thanks to all of you for this AWEsome birthday/anniversary/three years since I posted the first blog, celebration. Ryan and I wouldn't be able to educate folks that "autism isn't something bad" if it weren't for you. If I had cake, I would share it with all of you because you make this journey so much sweeter by being a part of it. 

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 assitance, 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 that you saw a sign that at Exit 77 there is a Sheetz, so you then can pray for 10 miles 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 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 (no pun intended), I just held my breath for Exit 11, assuming that stupid mile marker was off by a mile or two. Exit 11 came and went and Ryan still struggled to let me see behind those beautiful blue eyes.

Of course when Ryan's speech sounded more like a parrot than a 3 year old boy, I felt relieved when 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. I started to hate those stupid ugly green mile markers mocking me. Echolalia hung around for another 100 miles or so and I tried so 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 stupid 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 their meaning on Wikipedia. I am so grateful for the sights I would have missed had I taken the quick route.

On the journey, as we passed the Soccer and Baseball Exits where most 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 idiot drivers that tried to reroute me from helping my son on his journey. But, there were also beautiful road side 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 soley 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 caught up in those mile markers and exits that 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 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.

I'm not a fan of change. I like my comfort zone and keeping things "as is" because I feel comfortable with "as is". I know what to expect from "as is". So, when change comes along and rears its ugly head, "as is" goes out the blankety blank window.

Yeah, change sucks. Sometimes. Not always.

No time is change more expected, more discussed and more debated than at the start of a new year and so I always jump on the change band wagon...for about a week. When the calendar marks the end of one year and the beginning of the next, change is expected. Change is encouraged. We are all suppose to change for the better, thus having a better year than last. So, come January 1st I decide to change too. 

I'm going to change by eating healthier, exercising more, swapping screen time for snooze time, swear less, reduce my incessant need to please people, and decrease my wine intake. Change, change, change. It's no wonder I'm not a fan, change and I, well, we don't jive, so I typically fail miserably.

I continue to eat Captain Crunch cereal for breakfast, binge watch Homeland until the wee hours of the morning, skip the gym (sometimes I just totally forget I thought about going), swear like a truck driver, people please to the point I don't remember what pleases me and beg my husband to stop at Total Wine while traveling. Promise. Fail. Repeat.

​Sigh.

Webster defines changes as "to become different; to become something else". What if this New Years I decide to NOT become different or something else? What if I decide to keep on eating Captain Crunch Cereal for breakfast, forget to go to the gym (time and time again) and keep on talking like a truck driver? What if staying the same isn't so bad (with the exception of all that sugar in Captain Crunch Cereal)? What if I'm resistant to change? What if change is scary or bad? What if something becomes different and I want it to go back to being the same? Can I change it back?

Yeah, change sucks. Sometimes. Not always.

As it turns out, no matter how much Captain Crunch I eat, change comes whether I like it or not. Change often comes when we don't want it to. When we aren't expecting it. When we want nothing more than to continue with status quo, when "as is" seems good enough. It seems that no matter how hard I try to hang on to "what use to be", it quickly becomes, "what was". Especially when it comes to my kids. As I watch them growing up, moving forward, "changing", I dig my heals in, tie a harness around the biggest tree I can find and hold on to "same" as long as I can. Guess what? The tree falls over, the harness snaps and I fall flat on my face, landing in a big pile of change. Yeah, I know, "it's what's suppose to happen", but, it doesn't mean I have to like it.

Change sucks. Sometimes. Not always.

There was a time when I use to long for change. A time I begged for change. A time I prayed for change. A time when I feared the status quo and "as is" had me freaked out. I desperately wanted things to change, things to become different, even though "different" was precisley the driving force causing me to wait for change to come. And I didn't want to wait for a new year to have change arrive. 

I wanted my son's language to change from scripting to communicating. I wanted his overloaded sensory system to change so his day to day life was easier for him (and yes, selfishly, for the rest of our family). I wanted his lack of desire to connect and make friends to change. I wanted my son's insistance on routine, his fear of change to change. I wanted his diagnosis of autism to change, for him to not have a diagnosis at all which would make all those other changes I wished for no longer necessary. With all this change I bartered and begged for, what really needed to become "different" or to "become something else", was me. 

I needed to change...my understanding, my fear, my ignorance and my awareness. My son didn't need to change, I did. When he was scripting, he was communicating, I just needed to change how I heard him. When his sensory system was overloaded and he was in the throws of a meltdown, I had to change how I viewed the world so I could see his view in order to help him. I had to change my thinking of what a friend was and what a friend needed to be. I had to change my fear of disrupting his routine and find ways to help him cope when the routine had to change. I had to take my worry, my fear, my lack of understanding of autism and change how I viewed this diagnosis and realize that autism did not make my son "become something else", he was and has always been Ryan. I just needed to change how I saw him.

And I did. This time, change did not suck. This time, change was good. This time the status quo needed to be disrupted. "As is" was no longer cutting it and it was hurting my son. This time, I had to "become different" and "become something else". This time, change didn't hurt me, this time, change saved me.

It was my insistance on things being the same...the same as they were for my oldest son, the same as they were for kids in my son's daycare class, the same as they were for my friends' children that caused me to want change for him. And at the time, I believed this change was best...for him. Yes, in some ways those changes may have helped Ryan communicate better, get through the ins and outs of his day better, but, he didn't need to change, I did.

Change sucks. Sometimes. Not always. But, when your heart is in it, really, really in it, you can change, you can "become different" and that difference may change your world and the world of someone you so desperately love.

​Wine and Captain Crunch will not change though. Guilt be damned.