• Noah Seback

Updated: Mar 29, 2019

It’s a simple, straight forward sentiment: don’t worry, be happy. Simple but not easy. It’s true too. We all struggle with what if’s, uncertainties in the future, and potential pitfalls to what we have planned. We spend our entire present not being present but trying to secure our future.

It’s interesting that before I could spell to communicate, my future was already determined and it wasn’t a pleasant one. Why cry-or worry-over spilled milk they say.? And my spilled milk was soured, dried up and crusted over. I didn’t need to stress over my future because I already knew what it held: more nothingness, more unrealized potential and a big dose of a wasted, purposeless life. I had years to get comfortable with an ongoing, constant level of frustration and anxiety that became a part of who I am.

In a way it’s easier to worry now that I have a voice and hope for a future. Before, there were no potential pitfalls or obstacles, just certain ones. I had a constant level of anxiety, but now I have a constant level with sky high spikes because I have sky high hopes. It’s miraculous to have access to learning, relationships, communication, but there is a nagging that sits in the back of my brain whispering each time a door is shut and a mind is unaccepting of my abilities. It tells me ‘You still aren’t going anywhere. Society will never accept you. Forget about being embraced or valued.’ This is a lie, but my body chemistry gets tricked every single time. My rational thinking is overwhelmed by the wave of my emotions and the accompanying physiological response. Fight or flight when threatened? I fight.

So who says autistics don’t have emotions? The same people who complain about our ‘behaviors’. I hope you can sense my sarcastic tone because I beg to differ. We have emotions alright, big ones that manifest in big, weird ways sometimes. Our bodies aren’t always able to cope with them or handle them as discreetly as neurotypicals. We can’t help it, try as we might. Instead we get labeled and stigmatized and punished and isolated. But not supported like we need to be: we need profile specific support in anticipation of each of our unique body reactions. We also need access to communication to help guide this support and to give feedback when situations are misinterpreted. We deserve to speak into our own lives, just as every other human can.

I thought we’re all about diversity and tolerance these days? Why should I be discriminated against because my brain and body were created differently? I can strive to be my best me. Why can’t you give me the support and grace to help me do that? We preach equality based on skin color, gender, age, ethnicity, but not neurodiversity? NOT COOL.

Neurodiversity: it’s a thing.

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  • Noah Seback

Loss has found me once again at my new address. One of the friends I found, after that devastating move*, has been taken away, this time by death. He was my first new friend, He was Luke Renner. He was my friend despite the turmoil and upheaval in that season of desperation.

For that I will always have a special place in my heart for him. He will always be alive there and alive in my memory. Corny, sympathy card sentiments I know, but true nonetheless. As is the fact that he is now with Jesus. Is this some measure of comfort? Yes it is. Is it enough? No, not yet, but maybe it will be someday.

Grief finds me revisiting the uncontrollable body dysregulation and escalation that is triggered by big negative emotions. They are so ingrained and automatic and they rear their ugly head as my heart breaks. I will combat that heartbreak, in part, by celebrating Luke and our friendship here. My body cannot bear to attend his memorial, so this is my memorial to him.

Luke and I could not communicate directly when we first met, but there was an unspoken camaraderie and acceptance between us. We shared similar interests and struggles which was a lifeline to me on this strange new frontier in North Atlanta.

Luke was happy go lucky. He enjoyed life’s pleasures like yummy food, pretty girls, and fun. He was the quintessential teenage guy regardless of his autism. Autism just complicates things making it difficult to see the real person underneath. What people saw front and center at times, not unlike me, was a teen trapped in an uncooperative body that acted contrary to his wishes too much of the time. I won’t pretend this wasn’t true just because he’s gone. After all, that’s what friendship is: loving the whole person, the good and the not so good.

We had many fun times together riding thrill rides, swimming, walking his dog Coco, eating popsicles, playing putt putt, going to the movies, attending camps and other group activities. We shared the tough times too, when our unruly bodies got the best of us. Brothers in struggle.

Our lives went in different directions then. That doesn’t mean our friendship ended. Life and moments shared with those we love are very precious, whether shared yesterday or last year. Really they are all that matters-not material things or accomplishments. We all want to love and be loved for who we are.

Luke you will always be loved as a friend by me. Though you are gone, you live on in those whose lives were touched by yours.

*see my previous post

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Updated: Jan 15, 2019

I am Noah. I am an individual. I am unique just as you the reader are unique. You can lump me into non speaking autistic, teenager, son or friend or student, but mostly I am me. You, out there, are you. Our overlapping life experiences and our personalities create a bridge across the divide between us.

This bridge needs regular care and attention or it will fall into disrepair. We can draw it up intentionally as a means of escape or trying to protect ourselves. Others can burn this bridge purposely or as collateral damage. I call this bridge the Bridge of Connectedness.

What happens when this bridge collapses? You are left on an island of isolation. It is an island even more cut off from the world than the island you already occupied as a non speaking autistic. Perhaps before it was gone a few unique individuals would venture across that bridge. Now no one can. 

Before I had a voice, before the letter board, my well meaning parents unknowingly blew my Bridge of Connectedness to smithereens. It was the absolute worst time in my life. And that is even hugely understating it. Living as a non speaking autistic is already isolating enough without the devastating loss of that lifeline.

Loss can take many forms. Mine came in the guise of moving to another part of the city. It might as well have been to another planet. This came with no direct explanation to me, no consideration of my opinions or feelings, no chance to say goodbye. My island shrunk by huge proportions.There was no bridge. I was devastated and incredulous. Life as I knew it was over. People move all the time you say? But for me, the way God made me is a unique blend of being very very relational despite my other autistic tendencies. It was indeed my perfect storm, a silent storm with no way to sound the alarm-at least no appropriate way. My body would do the talking because my brain could not.

This was a dark period when I was hopeless and resentful most every waking moment. My body reacted to this emotional upheaval like a rabid animal. The hormones of adolescence didn’t help. The people I was meeting were getting the wrong impression of me. Not only did they see me as mentally and intellectually lacking, they viewed me as an aggressive behavior problem. Their answer was to treat me as if I was indeed a rabid animal.

The thing is, I was all of these things yet I wasn’t. The more they treated me that way the more I became that way. This made me long even more to live back where people knew the real me, as much as they could without communication anyway. 

Life sucked.

My parents tried to figure out what to do realizing the gravity of what they’d done by moving. But they still thought something physical or medical had happened like seizures or a concussion.They were trying their hardest without me being able to tell them.

I was silently screaming WHY?!?! 

I made no conscious decision to strike out but my bottled up anxiety and anger would explode. There was no way of extinguishing it once the fuse was lit. If I can’t make my body respond when I’m perfectly calm what hope do I have when I’m roiling with emotions? No chance, no chance whatsoever.

I stood by as my parents tried to blame everything but the real reason. It was so obvious but not to them. Talk about a disconnect. It’s been happening between kids and parents for generations -this communication breakdown. It’s even more complicated throwing non speaking autism into the mix.

So finally they figured it out. This is once I could tell them, so they didn’t really figure it out I guess. I think they realized it was a part, but not how big a part, until I could explain it. They wasted no time then in taking responsibility and seeking a path forward, a path of forgiveness and healing. They set about building a new bridge: this time including me. It was no easy task. I was resentful, angry, and without hope. This bridge could never be as good as the original. Little did I realize that this bridge would be far better because God is in the business of redemption. I can testify to that today but then, I needed convincing.

My mom will talk about how I never resented or was bitter about how long it took to find the letter board. She marvels at it. But the move from Decatur saturated my every molecule with resentment and bitterness. I hated my life, myself, and my parents. I hate to admit it, but it’s true. I’m sure they hated it just as intensely. I look back and desperately want to save others from this experience so I’m sharing my journey now.

What needs to be realized is that I have autism, but I am still person with thoughts, feelings, preferences, and opinions. I can’t be overlooked and decided for like a forever infant. The dilemma is: without the ability to share those thoughts and feelings, they are overlooked. Even parents with the best intentions and the biggest hearts can’t put themselves in my shoes. How can they? 

Communication is the key. This is why it is my missive to bring the letter board and open communication to non speaking autistics the world over. Not only to expose them to it’s existence and potential, but to encourage them and their parents to pursue it fervently and relentlessly as we have done. The letter board has changed my life and my family’s life forever for the better. 

I shudder to imagine the path I was spiraling downward on, not without the letter board. Instead I was able to express what was going on and then was able to work through it with my parents like any resentful teen whose life had been ruined by their out of touch parents. Was it easy? No, but it was possible. If I hadn’t learned the letter board my present and future would look drastically different.

No parent should be able to choose to not let their child have a voice if it’s possible. Not money, time, energy, or effort required is an excuse. I don’t care how much of these resources have been expended already. I don’t care how the parents hate to get their hopes up.

News flash: It’s not about you!

You imagine being locked in a silent prison and in a defective body that betrays your intelligence constantly, relentlessly for as long as you remember with no end in sight. What about your child’s hopes? This is happening to you, parents, but mostly it’s happening to your kid.

I digress. What I want to stress is that gigantic life changes are just that: GIGANTIC. Any change is hard for neurotypicals, but exponentially hard for us. If I can’t for instance be flexible in little things like driving a different route or eating a different looking chicken nugget why then would I be able to transition smoothly to ever single solitary aspect of my life transforming? 

My parents put a bit of transition preparation in, but not nearly proportional to the scope of the change. It is our bodies that cling to this ritual and sameness. Like I said, we have thoughts and feelings that require working through. But even when we settle it in our minds that doesn’t mean our bodies are on board. The anxiety of the newness goes directly to our lizard brain and we are in fight or flight mode on steroids! Our bodies betray our rational thinking and we have little control. For each, this can manifest differently but usually never appropriately. We are then classified as having behaviors. This is never a positive label. We are aggressive or self injurious  or a runner; I could go on and on with the descriptors. We are simply having a reaction resulting in an action not under our volitional control.

Try to wrap your brain around that concept. My parents ripped my world out from under me without helping me to prepare emotionally or mentally. My body was primed to rebel and my anger, fear, and sadness fueled it. Had they gotten me on board mentally and emotionally it would have been tough; instead it was impossible. We had a rough time for a while until they fully realized what was to blame. 

Then a miracle happened: I was introduced to the letter board. Suddenly, (but paradoxically: it had taken sixteen years), I could express myself. We have never looked back-except to heal old wounds. I could not have asked for any more supportive parents, in fact I don’t think any exist. They embraced this opportunity that God provided and continue to propel me forward into a now bright future.

I am now connected to others on a whole different level. My Bridge of Connectedness has been rebuilt, restored, and reinforced. It is no longer a one way path across. It is a reciprocal route because I can venture off of my island now and fellowship with friends, whether neurotypical or neurodiverse. I never wanted to be an island and thanks to God and the letter board I no longer have to be. I have a bridge to many beautiful friends. 

I’m grateful to God whose bridge to me through Jesus has always stayed and will always stay intact. You out there will be hearing more from me, until then never let your bridges burn, rust, flood, wash out, crumble or otherwise break down. We are meant to love, connect, share, and unite.

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