If only I heard those words ten years ago. If only I believed those words ten years ago. If only I tattooed those words backwards on my forehead ten years ago so every time I looked in the mirror those words would not only have hidden my deepening frown line, they would have hidden the fear in my heart from the only person who saw it, me.

But I didn't, because I wanted "now". "Later" felt too late.

I heard those words loud and clear just a few days ago when Ryan got invited to a Super Bowl Party. His first invite by a classmate in almost ten years. To say Ryan was ecstatic is an enormous understatement. He had to fight back the tears when he shoved the invitation in my face! It doesn't matter that when I asked who the invitation was from that Ryan momentarily forget the lovely young girl's name (facial recognition is something Ryan struggles with), what mattered most was that this nice (momentarily nameless) girl handed an invitation to him. Yes, him.

On the Sunday night before the big party, Ryan jumped up on my bed and reminded me where he would be "seven nights from tonight". Then it was my turn to fight back the tears. My beautiful, 125 pound, 14 year old son looked at me, somewhat sheepishly, and asked if I would help him "practice" some things he could talk about with the party guests. I was flabbergasted. For YEARS we have tried to role play, "practice" and rehearse various conversations, what if scenarios and what to expect moments to which Ryan often refused. However, on this night he said, "I don't know what to expect at a Super Bowl Party and I want to be prepared".

After I recovered from the shock and AWE once again that this kid bestows upon me with increasing regularity, I told him there was nothing I would rather do. He then jumped off my bed bounced away and shouted, "not now, but, later". And there it was. Such a simple concept in four short words. Four words that could have saved me such worry and heartache had I only trusted those words for the past decade, had I only trusted him. Because AWEnestly, that is pretty much how this autism journey has been going.

"Not right now, but, later" could truly have been the mantra, the theme, the words to live by for my son. As I watched him happily bounce out of my bedroom a few short nights ago while humming the latest Minecraft music buzzing around in his head, I realized, he has been "saying" those very words for years. I just wasn't listening.

"Now it's time to learn to use the potty" I shouted, screamed, begged and bribed. "Not right now, but, later" was what Ryan was trying to tell me all those years ago when "now" was not the time for him. "Now" his brain was not quite ready to understand the signals his body was telling him which is why it took him longer to toilet train than most kids his age. "Later" worried me though because it felt way past "now", yet, when he was ready, "later" came, just like he knew it would.

"Now, I want you to learn to tie your shoes so you are ready for kindergarten", right after we read this book, practice with this pretend shoe in the book and after your big brother Kyle shows you how he does it. Ryan struggled, became frustrated and chucked the book past my head. "Not right now, but, later", because it didn't matter how cool the book was with the fake shoe on the front or how much he idolized his brother and all his cool abilities, Ryan's fine motor skills weren't on board with all the other kindergartners, so "now" was not the time for shoe tying (or shirt buttoning). "Later" came, later.

"Hey buddy, now I want to hear Ryan talk instead of (insert any character on TV he was scripting non-stop at the time here______). I like Ryan's voice soooo....much better", I cajoled. Ryan went about his latest script in his latest voice as if he hadn't heard my request time and time again. The thing is, that WAS Ryan's voice. He was communicating with me in the only way he knew how and if I would have heard "Not right now, but, later", it would have sounded remarkably like Dora the Explorer, but, I wasn't listening. "Now" I do hear Ryan's voice, along with the latest Minecraft YouTuber he is obsessed with, and no matter who I hear, no matter what is said, I listen.

"Wow! I can barely see your eyes because your hair is so long, we have to go for a haircut now", I whispered in his ear while he was almost asleep so I could live with myself knowing I told him, but, hoping and praying he didn't really hear me because I didn't have to listen to the cries, the worries and the fight to get him in the car until "now" actually meant now. The tears, the cries, the heartbreaking "no, no, no" with every piece of hair that floated to the ground was Ryan's way of telling me, "not right now, but, later". The snip, snip, snip of the scissors was loud in his ears. The pieces of hair falling on his neck felt like shards of glasses poking in his skin. The different comb, the chair that lifted up and spun around, the numerous conversations happening in the salon all were too much for his overloaded sensory system. "Not right now, but, later." And as always, "later" came, with Ryan flopping in the salon chair and barking, "just give me the usual" because now he is prepared, now he knows what to expect, now he is ready.

"Now that you are older, maybe you should wear clothes like a lot of the other middle schoolers", I tried (repeatedly) as Ryan walked out the door in silky track pants that I have such a hard time finding now that he wear men's size pants (apparently men do not wear satin pants to work out in these days). The same clothes day in and day out was Ryan's way of telling me, "Not right now, but, later" because those clothes made him feel comfortable and the predictability of how those clothes felt on his body was one thing he could count on not to change throughout his day. Then one day after a shopping trip from the mall, other words came that I was NOT expecting, beautiful words of self-awareness. "I wish my body wasn't such an 'arsehole' and I could wear different things. I really want to, but, my body won't let me. My brain is highly connected to my sensory system...more than it is for my friends". I was dumbfounded, but, able to recover enough to take in this beautiful moment and remind Ryan of all the things that came "later" for him, when his body was ready.

And just two weeks later, when he felt his body was ready, a request for khaki pants and a declaration that his "brain is stronger" now and ready to try them. "Later" came today as he walked into school wearing American Eagle khaki pants and a brand new Hollister shirt. "Not right now, but, later" on his terms, in his way, when HE was ready, not me. And that is exactly how it has been all along and exactly how it should always be.
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"Not right now, but, later" has proven true time and time again. "Now" was what I needed, what I wanted, at a time I thought it should be happening. "Later" was what my boy needed, what he wanted and what he was telling me all along. Ryan may have never said those exact words to me until just a few days ago, but, he has been telling me for years. I just hate that it took years for me to hear him, to understand him and to respect his time frame. I hope that one day he forgives me and understand that "not right now, but, later" has rung true on this journey for me as well.

Better late(r) than never, right?

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.

We had yet another college visit for my oldest son Kyle this week. As any mother who has been part of this tedious, emotion filled process knows, there is a combination of sadness and joy. Sadness, as you wonder how it's even possible that your little bird is ready to flee the nest, and joy, as you happily anticipate just how far his wings will take him.  

As we stroll along these foreign campus grounds, my mind wanders to scary places like, "Will he do too many tap hits at a kegger and kiss a girl who just ate peanut butter and go into anaphylactic shock?" and happy places like, "Will he find his future wife here...the woman who will give me beautiful grandchildren...many, many years from now?" As my mind races from sadness to joy like an uncoupled railway car, I try not to imagine the emptiness I will feel in our home without Kyle's loud, vibrant voice and presence, a presence that is so similar to my own that it makes my LOL as frequently as it irritates me.

As for the baby sister, Emma will miss Kyle terribly because he is the brother that connects with her, he is the brother who playfully teases her and loves her with all his heart, he is the brother who holds all three of them together. Like a coupler that holds two rail cars securely together, Kyle has always been the connector that has coupled Ryan and Emma together, keeping them from drifting too far apart. ​Without their coupler, I worry about just how far they will drift.

Ryan and Emma are so different, their rail cars filled with goods that neither are interested in or understands and without Kyle coupling them, I think those goods will become more diverse and less understood thus causing their cars to drift farther and farther apart. In some weird, twisted part of my brain, I have thought, well, maybe uncoupled, Ryan and Emma will bump into each other in a horrific crash causing their goods to spill all over the tracks and getting so intermixed that they will have to find a way to clean the mess up together. In doing so, maybe they will recognize the value of one another's goods and see that there is a way to stay close without the coupler holding them together.

I understand that with or without autism some siblings just don't connect. There may be no rhyme or reason, but, the connection is just not there. In many ways, I think Ryan has never forgiven Emma for arriving in his world, a world at the age of five he was just starting to slowly understand, and so he does not try to connect. It's hard for Emma to understand so she tries, time and time again, but, I realize that a moment may come when she stops trying to connect, when she see that there is no point crashing a train car against another train car with no coupler in sight to hitch them together.  

Without their coupler, Ryan and Emma may drift even farther apart and as hard as it is for me to accept that, I may have to, without necessarily pointing the finger at autism. Just like the world had to accept Gwyneth Paltrow and Chris Martin uncoupling, I too may have to accept that Ryan and Emma may consciously uncouple and even though "they love each other very much, they will remain seperate". There are no bad guys, no one to blame, just two individuals riding on seperate tracks.

Next fall when Kyle heads off to college, I may be so consumed with my own adjustment to the change in the dynamics of our home that my worries of his departure uncoupling Ryan and Emma, may come much later (after I stop spending 24 hours a day obsessing over peanut butter kisses and tap hits). And perhaps in that time, when I am trying to adjust and uncurl from the fetal position, Ryan and Emma may or may not find a way to connect without Kyle's presence. Only time will tell and as I watch my oldest son, my baby boy, strolling from campus to campus, one thing I do know, I most certainly can not control time.

Along with figuring out this mother son thing over the years, I have also figured out that when it comes to love, kids, and yes, even autism, never say "never". Unless of course it is "NEVER kiss a girl who just ate peanut butter", to your severely allergic son, then "never" definitely applies.