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.