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.

P.S.
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 🙂

P.P.S
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.

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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!

A Father’s Perspective        A Sister’s Perspective

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.”

He’s Fifteen Now

And I just don’t know what to do with that.

I mean, he’s fifteen! That just seems so grown to me.

He shaves on a regular basis now. He’s right at six feet tall and his feet are huge. Finding pants that are small enough to fit his skinny self and long enough has been just about impossible. And when I come close they are only the right length for about two seconds because he is always growing.

Like most teenage boys he eats a lot. He has also suddenly decided that texting is the coolest thing ever. Usually just to Rob or Sarah though and it is quite fun to go back and read his conversations.

Can you guess from that mischievous grin what his favorite emoji is?

It has been a really interesting year with Sam. He is growing and maturing in ways that are surprisingly typical but because it’s Sam…well, I guess interesting is the best word. Complex? A beautiful struggle? An emotional roller coaster? Hysterically funny at times? Oh, yeah, it’s all that. 

Mario is still a favorite and he never misses the opportunity to make “the jump”.

The most interesting change to come about has been Sam coming to understand appropriate vs inappropriate content in movies and other culture experiences. It’s like a light bulb has gone off and he is understanding things that up to now just kind of passed over his head. Needless to say we are having some interesting conversations around our house.

Despite all of the changes he is experiencing some things are, at the core, the same. His love for Legos has remained steadfast although it different now. For Christmas he got the biggest set he has ever put together. Over 800 pieces and he was so excited! Until he started putting it together and something went wrong. For the first time he was frustrated and not enjoying it. We convinced him to stop and try again the next day. When he woke up he took everything completely apart and started over. A few hours later he had the thing assembled and was pretty pleased with himself. He has since taken it apart again and boxed it up saying that he’ll build it again next Christmas. Not sure what the deal is there but as often is the case we will just have to wait and see.

We surprised him with his very own brand new bike for his birthday and he was thrilled. He asks to ride every single day and will stay out riding for hours at a time.

His since of humor is by turns infectious and obnoxious. I’m guessing that’s the teenage boy thing again.

This boy of ours brings so much richness to our lives. The joy we’ve known in the fifteen years since his birth is beyond words and we’re so grateful for who he is and who he is becoming. I know we will be all the better for the man God is shaping him to be.

Keeping Level

I’ve been doing the April autism posts for several years now and for some reason I am finding it difficult to do this year.

Partly because Sam is in that age range where parenting is more difficult than ever before. What children at this stage need is far less tangible than the needs of the toddler and young childhood years. Autism just adds a little extra something something to the equation.

When you first enter the world of autism everything is slightly skewed and off center. Things are sort of out of focus and it takes a minute to adjust. You begin to find your balance as the fog of diagnosis and research and information lifts. Slowly but surely you begin to find your way…to make your way…through a world where things are almost the same but not quite and a wrong step has pretty serious consequences.

It’s hit and miss and trial and error. But because they’re smaller it is easier to see what they need so you can at least have an idea of what they need from you.

Speech therapy? Check.

Occupational therapy? Check.

Special diet? Check.

Move on to medication? Check.

But we’re not in that stage anymore. We’ve done those things.

So now what? What’s next?

But the world is almost silent in response. See, until the 90’s autism was considered a relatively rare thing. Then in the early 00’s it was not only more common to hear the term autism spectrum disorder it seemed we were experiencing an epidemic. (This is generally attributed to better diagnostic categories and awareness of autism in general.) And now, all of those children who were part of that first wave are coming of age and research on autism and the teen years is practically non existent. We are the research.

And let me tell you, we’re clueless. When Sam was younger I could write a blog post about going gluten free or how we handled sensory issues. But the issues as a teenager are less concrete and so are the answers.

I’d rather forge ahead on our own though, honestly. Our world view and perspective is a totally different shape than where most of the specialist and experts are coming from. What they consider typical teenage behavior and rebellion is not a paradigm we share. Not for our neurotypical teens much less our autistic teenage son.

Oh, I’ll keep reading everything that comes my way and I will sort and sift and mine the nuggets that are beneficial to us. But it will be sorted and sifted through our paradigm…a world view that is Biblical and the same for all of us. Because we may need to adapt and relate to Sam differently but God doesn’t. That’s our standard. It’s where we find our balance and keep our thinking straight.

We’ll constantly slow him down and make him do and redo his written work because no matter how much he wants to “just get it over with” so he can play with Legos we want him to learn the truth that we only offer our best efforts and work because we want to honor God with everything we do.

We’ll work to help Sam find, establish and use a filter between his brain and his mouth because God says that our words and the way we say them mean something.

We’ll continue to insist that he show kindness and respectfulness to everyone because, just like him, they are made in the image of God. And that means we have to help him understand what disrespect is because he simply doesn’t get it.

We’ll keep drawing him back to understand “doing unto others” because empathy is not something that always comes easily to him.

We will continue to raise him as we raise his sisters…to do justice, and to love kindness, and to walk humbly with our God.

To do anything less would be to despise the gift that he is to us, to our family, to our church, and to our community.

Now for a Sam funny:

He has an amazing knack for inserting his own lyrics into almost any song and still maintaining the original song’s melody and pitch. So right now I want you to think of Queen’s classic “We Are The Champions”. Got it in your head? Good. Now instead of the words, “…no time for losers…” I want you to hear, “…no time for play time…” It was his anthem the other morning when he had to pick up his room instead of playing before school.

And, yes it was stuck in my head almost the entire day.

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.

So This Happened Last Night

Dad decided it was time. We crowded into the bathroom and there was much looking and talking and more looking and funny face making and then a clean shaven upper lip face. (And a little chin action.) Rob pretty much did the shaving while talking Sam through what he’ll need to do the next time.

Best Shot Friday     Friday Photo Journal

Our Man Child

He’s fourteen today, this amazing man child of ours. That just seems so crazy.

Fourteen.

Life with Sam is intricate and as full of endless possibility as the Legos he’s so crazy about. We never really know what he’ll construct next.

One of the greatest joys in my life is watching Sam working to keep a straight face when he’s trying not to laugh while telling a joke or a story of some sort.

His beautiful brown eyes sparkle, and his eyebrows come together in a fierce frown for all of two seconds… and then he bursts into laughter.

He is completely mainstreamed at school. He’s doing well grade wise with A’s and B’s except for a C in math. Pre-algebra gives this concrete literal thinker fits. Seventh grade is quite a transition in a classical school, and we weren’t sure how he would do but true to form Samuel surprised us with how well he adjusted. All of the kids in his class are great but there are three boys that go above and beyond to show friendship to a kid who isn’t going to give it back the same way. Community is a big deal to him and he keeps his class picture on his bed shelf. It’s also not unusual for him to have the last seven years worth of yearbooks open to his class’ page laid out in chronological order.

I mentioned his love of Legos. And, oh my, does he ever love them. His floor is usually covered with them and it really isn’t safe to walk in his room barefooted. I tried to separate them all by colors and it just seemed to inhibit his creativity, so now we have two giant flat bins that fit under his bed to house his collection.

He’s made some pretty amazing things…he delights in creating various famous characters that he thinks should have their own Lego set. Olaf, Grumpy Cat, Mario, and Minions are at the top of that list.

He designs and builds his own creatures too and also comes up with these really elaborate stories and scenarios for each one. It’s pretty fascinating to hear him tell you about each one whether it’s their nifty features or the personality he gives them in a story. Please note the little tan Mixel in the background making bunny ears behind his blue friend.

He doesn’t limit his creativity to Legos though. He draws the most amazing cartoons. Like the hilarious cartoon he made illustrating Grandma Got Ran over By a Reindeer and underneath it was a second cartoon of Olaf yelling, “Stop it Sven!” with Kristoff looking rather sheepish next to his pet reindeer. I wasn’t fast enough to grab a picture of it. Or of the time he drew the Marvel comic heroes as Minions – you have not seen funny until you see the Hulk as a Minion.

His sense of humor is hysterical – and somewhat exasperating since something will stay funny to him waaaay longer than it does to the rest of us.

The Sunday funnies, Calvin and Hobbs, and Far Side figure regularly in his reading line up. But he’s read The Horse and His Boy by CS Lewis and Hemingway’s The Old Man and The Sea for this nine weeks boni libris, so I guess he’s pretty well rounded.

He enjoys Star Wars, Harry Potter and anything ever made by Pixar. The Lego Movie, of course, is a huge favorite. That sound track was probably the single biggest mistake as a gift that has ever been purchased in the history of the world. Everything is NOT awesome. Especially when it’s on endless repeat at 6:30 in the morning.

He also has the sound tracks for Mama Mia and Shrek, and his taste in music is quite eclectic. Oldies, Bob Marley, Plumb, She and Him, and Jack Johnson are all on his current play list. He doesn’t care for country music, and is all about today’s hits when it comes to the radio.

Oh my goodness, that smile of his. It’s so contagious!

He’s huge and takes great delight in hugging me and tucking my head under his chin. A razor needs to be in his near future and his feet grew two sizes in three months. He eats all.of.the.time.

It is hard to write a post about Sam without any mention of autism. But as he is growing up I am realizing more and more that autism doesn’t define who he is, but rather Sam is defining and redefining what autism is all the time.

I have no idea what the future holds for this wonderful man child we have but I am amazed at how God is shaping and forming him and using him to shape and form us.

I love his sense of humor and way of thinking. I love how he draws mash ups of Pac Man with Little Red Riding Hood. And how he thinks high fives and fist bumps are for the guys and when I try to do it with him he gives me this odd look tinged with pity that I just don’t get it and gives me a hug while patting my shoulder. Usually saying “I love ya, Mama!”  He is a simple complex walking paradox fashioned just as he is to reflect the glory of His creator.

My prayer for you, Samuel David, on this your fourteenth birthday is that you will always be comfortable in who you are and that you will live life savoring every good and perfect gift that God has given you. Because we savor every moment we have with you. You are a blessing and a treasure to us. Happy birthday, sweet boy of mine!

Be of good courage,

and let us be courageous for our people,

and for the cities of our God,

and may the LORD do what seems good to Him.

2 Samuel 10:12

Sam’s World ~ It’s Extreme

The dictionary defines the words extreme as “existing in a very high degree…going to great or exaggerated lengths…exceeding the ordinary, usual, or expected.”

That pretty much sums up life with autism. 

Everything with Sam happens in the extreme ~ the good and the bad. I think it’s why autism is so exhausting. Autistic life happens at a very high degree and certainly exceeds the ordinary. Everything is just more. 

Take for instance, Sam’s view of going to school. This is his first year in school (we previously homeschooled him) and he loves it. Like he is sort of bummed that we’re off next week for spring break kind of loves it. He literally runs across the parking lot to the door every morning. He is never difficult to wake up in the mornings either.

The other morning I tried to encourage him to be less Sam like in his arrival. He response was to tell me, “Mom, it’s a big day!” I had a sudden moment of panic that I had forgotten something and asked him why. “Because it’s a school day!” he said with a grin and off he bounded.

This extremeness is evident in all aspects of his life. Video games and television have a huge impact on him because he feels everything, he plays everything with such an intense complete focus that totally absorbs him. And when he has to be done it’s almost as if he is an addict and suffers from withdrawals. It can be brutal on everyone involved.

What it looks like is hard to explain. He’ll be agitated and antsy. He’ll have a difficult time controlling his mouth. And let me just be real honest here, there is nothing worse or harder to deal with then the persistence of an autistic child who will not and cannot control their words. The sheer ability for repetition could be used as an instrument of warfare. I say will not and cannot because there is a certain amount of this that is willful, a choosing to persist. But there is a large part where he literally and physically cannot stop himself from speaking, from saying the same phrases over and over again. He is utterly out of control and way way over the top. This is made even more of an issue with puberty. Girls get all kinds of emotional and boys just want to fight something.

It has to be terrifying for him. That feeling of complete and total loss of control, of feeling and acting like he is going to fly into a million little pieces. We like to think that total abandonment of self control would be freeing but the opposite is actually true. Spinning wildly out of control is like that horrifying feeling you have as you’re falling out of a tree and there is no way to stop yourself from hitting the ground.

So we work to ground him…to make him feel safe…to physically connect him with the world. Currently we’re in a grounding mode. Monday through Thursday there are no electronics. This means no tv and no computer. On Friday, Saturday and Sunday he is allowed half an hour of computer (internet) and maybe, but not back to back, half an hour of the Microsoft paint program. He is allowed to watch one movie on Friday and one movie on Saturday.

It may sound like we’re talking about grounding as in restriction, (That’s it young man! No tv for two weeks!) but that’s not really what we mean. It’s more like we’re grounding him in the sense that we’re acting to connect him with the foundation of reality and helping him attach to the real world and find his place in it.

We all need that. We need people and practices in our life that ground us…that connect who we are with the real world outside of the ones that we can escape into through entertainment or the one we can create in our own minds that are shaped only by our own perspectives and inner dialogue. Not a safe place for anyone, autistic or not.

There are other things we do to help ground him in a physical sense. Big heavy work helps him almost as if the added weight forces him to feel the ground underneath his feet and helps him find a physical location for himself. This is one of the reasons that weighted vests and blankets are so helpful with young children in therapy. It seems to connect them to time and space in a tangible way.

I mentioned that Sam is easy to wake up in the mornings. In this week’s Sam story I’ll share a little about that routine. Every morning his alarm goes off at 5:30. For a while he was getting up and coming to ask me to come get him at 5:45 which is his actual wake up time. (Mine is at 5) Before bed one night he wanted to remind to wake him up at 5:45 and said  he was tired of having to get up and remind me at 5:30 every morning. We had a lengthy discussion about the fact that I certainly didn’t need him to be up at 5:30 to remind me to wake him up at 5:45. His alarm apparently is set for both times because I hear it the second time as I am coming into his bedroom. Practically every morning I also I hear, “You’re late.”

Rotten boy.