The Orchestra of Grace

There are a lot of things you learn to cope with when dealing with autism. When Sam was little we figured out some of his triggers and learned to avoid them if possible. I say some triggers because the thing with autism is that you don’t always know what the triggers are and some days it would be something completely normal and common to our life that had never gotten a reaction before that moment. I also said ‘avoid when possible’ because sometimes you couldn’t always avoid the situations. Sometimes you just had to go the grocery store.

In our experience the triggers are less frequent now that he is older. Not sure if it is just normal (for an autistic kid) maturing or the years of working with and dealing with stuff that makes the difference but I have a feeling it is a combination of both.

But there are still things to deal with. Mostly social things. Sam is no respecter of personal space. A common conversation in our house happens around the hugging of his sisters. First it should be noted that when Samuel wakes up…he is awake. His sisters? Not so much. And Sam is also tall. Really tall. He has a tendency to squish his sisters. Consequently, they are somewhat resistant to his brand of affection. “I just want to love them, Mama!”

So we talked. About how if he wants to hug his sisters because he loves them then he needs to show that love to them in a way that is pleasing and pleasant to them. He needs to be gentle and considerate. He can’t just grab them around the neck and squeeze.

He’s working on it. It’s probably a conversation we will have to have in different forms many more times but he is working on it.

We’re working on a lot of things along those lines.

Sam loves to ride his bike. He also likes to visit. There are two families in our neighborhood that we also go to church with. We’ve had to talk with Sam about limiting his visits because he was stopping to visit every single time he went for a bike ride. Which is probably about four or five times a day.

Visits from Sam can be awkward because, and I say this with much love and joy in my son, Sam is awkward. He tends to enter a room like Cosmo Kramer. And he just wants to poke around and check things out. His conversational skills are less than smooth unless he is talking about his cartoons and comics and he’s loud.

Both families have accepted his inelegant visits with much kindness and grace. Sometimes they give him tasks to do or just enter into the clumsy cadence of his conversation. One of our friends shared about one of his visits where he just hung out in the grand kids play room, rummaging around and then she heard him on her elliptical exercise machine.

Both families have made room in their lives for our son. I like to think that, in some ways, Sam is contributing something to their lives that is pleasant and pleasing but the truth of the matter is that Sam requires a lot. A lot of grace, a lot of tolerance, and a lot of room to just be Sam.

I guess the take away from this post, if there is one, is this. If you have an autistic person in your life somewhere don’t be afraid to let them into your life. Don’t let their awkwardness put you off. Trust me – you may sense the awkward but they don’t. They’re learning grace from you. They’re learning life and family and friendship from you. I’m not saying let them have free reign. Our friends do a good job of welcoming Sam in but also of putting boundaries in place for him. They add their string melody to the percussion rhythm of life we’re pounding out for him everyday.

There are plenty of places for us to sound out our solos but our boy needs to hear the sounds of the full orchestra. We all do. And when your community steps in and joins your song right where you are it is the most beautiful sound you will ever hear. It’s the sound of grace.

If you’re serious about stepping into the song of a family with autism be prepared for some crazy riffs. They don’t always know when to let it rest. Case in point, one of the sweet families mentioned above paid Sam to take care of returning trash cans and check the mail while they were on a trip. He did a great job. About a week and a half after they got back though I received a call from Terri asking me to chat with Sam about checking their mail. It seems that he was still checking it and setting it on their front porch. The concern was that it would blow away before they got to it. The other big concern was the fact that he was removing the outgoing mail 🙂

The other of the sweet families above went for a walk around the neighborhood the other day, and returned the favor of a pop-in visit. It was a joyful moment, and everybody (even Sam) got the joke.


Autism and Friendship ~ A Classmate’s Perspective

I’ve been doing the weekly autism blog post every April for years now and this was the first time I shared posts written from other people’s perspective. Even though these are all people in my life it was interesting and moving to read their words and see what they see. I’m glad we did it this way and I hope that if you’ve been reading the posts that you’ve enjoyed them as well.

I waffled back and forth a lot before asking the author to share his perspective for this post. The other three were written from the perspective of family member or a long time family friend. Also, all grown ups. But this last one, the last perspective I wanted us to hear, is from one of Sam’s peers.

Community has always been a big deal to Sam and even before he became a student at Trinitas he knew everybody. He would pour over the girls’ yearbooks each year memorizing names and faces. Community has been a big deal for us too as we have walked this journey on the road of autism.  Life with autism is a beautiful complication made easier through the communities of family and friends.
We wouldn’t be where we are with Sam if it hadn’t been for the love and support of the people around us.

It is a whole other blog post to explain what I mean about community and maybe I will write it in the future, but for now let me just make it clear that I am not talking about tolerance. It’s not enough to just have people around you that are willing to overlook or humor certain autistic behaviors. Understanding limitations and taking them into account is one thing, low expectations and excuse making is another.

When I asked the parents of one of Sam’s classmates about writing something for this series I knew it was risky, it felt more vulnerable. But we also trusted this family because we’ve seen the way they’ve raised this young man and the kindness he has always shown Sam. We’ve seen him reach out to try and help Sam deal with a hard minute or just include him in the day to day life at school. (I should note that while I did ask this family to write the blog post specifically it’s not just because he is the only one to treat Sam this way. Thankfully, this is the norm for our school community to varying degrees.)

From Clark ~

Having Sam in my class is both challenging and enjoyable.  You always have to remember that you have to treat him differently and that some things he cannot control.  You have to forgive the things that annoy you and always remember that you are friends.  You cannot laugh at things that are not normal and you cannot allow your other classmates to lead you astray.  Everyone has their highs and lows, Sam is no exception.  While he might struggle in some areas his cartoons are a gift from God.  Where I can only draw stick figures, Sam can create incredible comics and never runs out of clever dialogue with witty puns and plays on words to go with them.  He is very gifted and a good friend.

Short and sweet and to the point, huh? But it so perfectly reflects some truths that I think we can all be reminded of. Loving people, being in relationship with each other whether there is autism or not, requires something from us. We have to be forgiving. We all annoy each other sometimes. We all can be thoughtless or unaware. We need to be willing to see beyond our differences. We need to look for the good in each other.

In a nutshell we all need grace.  This isn’t the first time we’ve seen that life could be a little sweeter if we all lived a little more autistically. 

A Father’s Perspective     A Sister’s Perspective     A Teacher’s Perspective 

Life With Autism ~ A Teacher’s Perspective

We’ve have been extraordinarily blessed that Sam is able to attend the same classical Christian school that his sisters attend. It hasn’t always been this way, we homeschooled until sixth grade. You can read more about the beginning of his Trinitas adventure here.

For today I’d like to share a post written by one of Sam’s teachers. I cannot adequately express how thankful we are by the teachers and godly people that are part of Sam’s life…our life. We are truly rich.

From Mr. Butcher ~

As his brother in Christ, I have known Sam from the time my family joined the local Church congregation where Sam was already a member. His tall, gangly form, impossible to miss, has always been overshadowed by his equally heightened, gangly humor. Sam is the guy I could always count on for a bone-crunching hug, a litany of puns (of which I am most fond), and complete emotional transparency (refreshing and alarming at once). My first experience with Sam as a student was in a typing class, where his understanding of computers and proficiency in typing speed and accuracy eclipsed his fellow classmates. When he wasn’t being required to type lessons on the keyboard, he would often draw cartoons offering visual witticisms that were either related to his own loves, or those of his teachers, or classmates.  
It is unusual to have students who enter into the life of the teacher beyond those unavoidable, and often embarrassing ways, such as noticing verbal ticks or gestural patterns—those teacherly blemishes that become fodder for student amusement. That Sam and I share a love of puns, cartoons, and Star Wars doesn’t hurt, but a great thing about Sam is that he desires to connect his loves and his humor to the material that the teacher desires to present. This year I have Sam in logic—our last class of the day—a subject he loves far less than typing, and yet he brings the same inspirational talent of turning seemingly unrelated academic substance into hilarious visual comic strips and verbal puns is truly unparalleled. In other words, he has an innate desire to make the material into his own existence—not perhaps always in the wisest ways, but most assuredly with genuine interest. The pure delight that Sam exhibits when I put a logical fallacy into the mouth of Yosemite Sam, or when Sam offers me his own example of an Ad Hominem from the masked mouth of Kylo Ren often punctuates our days together.
Sam also exhibits another rare human capacity in those times when his frustration with logic puzzles or with his fellow students overwhelms him. I cannot think of a single instance where Sam wasn’t eager to make things right with me or with his classmates. Granted that his idea of what it means to make something right isn’t always the express image of Christ, Sam is a modern marvel: a man in whom there is no guile. As a teacher, Sam refreshes my joy for what I teach, testifying to the variety of ways in which a subject can compel interest. As a fellow disciple of Christ, Sam reminds me of the value of an honest acknowledgment of good and evil. May all teachers be blessed to have a few students like Sam in their lifetimes!

Autism As A Super Power

A father’s perspective ~

The other day while mowing the lawn, Sam rode up next to me on his bike and interrupted me with some urgency. “Dad,” he asked earnestly, “do you think I’m extraordinary?”

As his question echoed in my head, I flashed back to when Sam was just a little boy, a boy who could barely run down the hallway without careening into the walls, bouncing from one side to the next like a drunk exaggerating every movement as an overcompensation for the last one. To the little boy who watched one Barney video over and over until one day, suddenly and without any obvious reason, he totally came unhinged as Barney sang Pop Goes the Weasel. To my son who, when desperately out of sorts and unable to control his emotions, would find calm as I struck his back with firm and forceful pats. To my only son who would never be the son I hoped for when the ultrasound revealed he was a boy.

From the moment of his birth I knew something was different about Sam, something not “normal.” I watched him as he lay silently in the clear plastic container they put new babies in, staring into the room as though he could see something the rest of us couldn’t. He simultaneously seemed impervious to the world around him and to absorb it completely. It was a look I would continue to see as he passed from infant to toddler to child to young man. As he grew it was clear that he was not going to develop into what I had expected, but as I watched him mature it became clear to me that this boy – my boy – was something truly special. I had set my sights for a son way too low.

Like most dads, I suppose, my ideal for my son was that he would be a better, faster, stronger version of me. I’d massage out of him all of my shortcomings. He would be all that I had fallen short of, and I could finally realize my true self through him. The son I got was so much more glorious than that. While frequently challenging, Sam is as close to pure as I can imagine. While he is undeniably my son (my quirkiness and his are strikingly similar), his guilelessness, his Kramer-like commitment to doing everything with full-on enthusiasm, and his uncanny sense of humor show him to be so much more than I could ever hope to be.

Sam is a joy factory. He is funny, smart, and has an eye for the world that is truly unique. He is unburdened by self-consciousness, which enables him to observe the world around him rather than being consumed with how the world sees him. His take on the world is often black and white, but his capacity for acceptance of others is awe-inspiring.

A person with autism certainly filters and processes the world differently, but there are times when I think the whole world would benefit from being more like Sam. I know I would.

So when Sam asked, “Dad, do you think I’m extraordinary,” my response was simply, “Yes, son. You are extraordinary.”

Choosing To Remember

I don’t ever forget that Sam has autism.

I forget how hard it can be sometimes until it isn’t easy.

We slip into a rhythm with our days and everything is just moving along like…normal. Sure our normal looks differently than other people’s normal but we know our normal. We’re comfortable with it.

Until something triggers something ~ what,  we don’t really know exactly, but suddenly it’s not just that he thinks differently or words things in quirky ways or processes differently.

Like many kids his age he can be overwhelmed with the typical teenage angst and emotions, but for him it’s anything but typical. It’s filtered through autism and that means he’s drowning in it and the only way he can find himself…to understand…to find something real to him that makes any sense at all is to literally lay in his bed rocking back and forth so that his head is banging hard against the wall.

I hear the odd thumping sound and go investigate and rush in to make him stop and his body is so tense as he fights all that he is feeling that he is literally shaking. Puberty and boys is a testosterone induced need to battle, to fight against something or someone and you’re angry and you don’t even know why.

That washes through Sam like a tidal wave and all he knows is that the feelings feel bad which means he’s bad and he should be punished. And the words tumble out of his mouth…how wicked he is, how evil, and please just will you just hit me because I’m bad.

And I wonder if this is what Martin Luther felt when he would spend hours beating himself and confessing anything and everything that came into his mind as I hold onto Sam’s hand to stop him from hitting himself.

I try to keep my voice calm, to not add any more emotion to an already charged moment. I remind him who he is and who he belongs to, and he’s not evil because Christ lives in him. For a moment his tense muscles relax and I think we’re done, that maybe this episode will be short lived so I get up to leave. Immediately he becomes wound up and we start all over. Eventually, we pray together and he is able to sleep. The next morning he wakes up and it’s as if none of it happened. He is his normal happy self, cracking jokes and hurrying his sisters out the door for school.

The reminder of how invasive and disruptive autism can be was harsh. And if I lived there, if I allowed myself to dwell in that dark exhaustive place, you’d probably find me rocking back and forth banging my head against the wall, too.

But God is gracious and reminds me where the light is. I’m not the only one fighting the dragon on Sam’s behalf, this was just my turn. Thankfully, Rob has his turns and that, too, is part of the rhythm of life with autism. We tag off the two of us, because some days my words don’t soothe and Sam needs the deeper tone of his father’s voice, the strength of maleness because he needs to push as hard as he can against something that won’t give, to hide behind a strength greater than his own.

We also choose to remember the things that aren’t so hard.

Instead of the angry self incriminating words we remember his fascination with puns and words.

We choose to remember the laughter he brings.

The hugs he so easily bestows and the way he comes up and kisses the top of my head when I’m at the computer. Or the squeeze hug goodnight for Rob when he tries to lift him off his feet.

Instead of remembering the sound of fear in his voice because he’s flooded with emotion, we remember his practically perfect comedic timing and intonation as he quotes movie lines, or commercials, or the latest AFV clip that has caught his attention.

We choose to remember that he is fearfully and wonderfully made.

That he is our gift, autism and all.

April is autism awareness month. As has become my custom I will blog periodically throughout the next four weeks on what our life is like with autism. I hope you’ll join me in gaining a glimpse inside Sam’s world and while I won’t promise a Sam story every week I do have one to share today.

A few months back I let him create a Sam’s Lego Board on my Pinterest account. He has over 400 hundred pins and almost everyday I get notifications of people following the board. He’s pretty sure this has made him famous.

Sam also enjoys all things Star Wars and I came across some kind of SW meme and thought he would find it funny so I pinned it to the board. I was excited to show it to him but did not quite get the response I was expecting. I pulled it up on the computer and called him over.

Me: Hey, look at this Star Wars thing I pinned for you. Isn’t it funny?

He started to laugh but the smile slowly died away and his eyebrows came together as a confused look covered his face.

Sam: It’s not Lego.

Me: What? Oh. No, I guess it’s not but isn’t it funny?

He just looks at me, blinking, baffled that I just don’t seem to get it. I sigh.

Me: You want me to delete it?

Sam: It’s not Lego, Mom.

Apparently it’s only funny if it’s Lego and pinned to the Lego board. My bad.