"Will Ryan have autism tomorrow?"
Richie asked this recently when Ryan was having a rough day. I had no idea what to say. I'm actually surprised he hasn't repeated the question. Today would be a good time to ask.
Every suggestion is met with blood-curdling, horror-movie screams.
This is one of those days that makes me want to call up every last person who ever suggested that we just spoil him, and if they'd have him for a few days he'd be fine. It makes me want to let them hear the screaming, see the way I've not given him what he wanted, and that he screams anyway.
This morning, Ryan got first pick of what to watch. We sat together and all watched his thing, then it was Richie's turn. Ryan screamed with the movie several times, which is normal for him. Not exactly calm and easy to deal with, but normal. I leave what I'm doing to walk across the house and remind him, "No screaming with the movie or TV goes off." He'd stop for a while each time.
At the end, he did not approve of Maelynn's choice of TV, even though it is one of his favorite things. Much screaming, much hitting. We watched it anyway.
Richie, during the show, came to the table and said, "Brother is screaming."
"I know, sweetie. I can't stop him, I don't know how to help. I tried. I'm so sorry. But if you want to go try to help, that's fine."
He did. He charged back on a mission to help his hero. His wave of love and caring crashed on the rocks of a melty day. The screaming exploded when he walked in the room.
Defeated and sad, he came back for a hug.
Mother and I both loved on him, affirming him as a big brother and such a caring helper. As he rebounded, he asked for a coloring sheet. Maelynn thought that was a great idea too, so I printed two. Thinking I'd go back to the laundry, I got their supplies and turned to go to the washer.
"Mommy, will you color with us?"
Once the laundry was running again and the requested color sheet printed, I sat in the floor amidst all the things I need to be doing and did what needed doing the most. We colored.
As we chatted about this color to use here and that color to use there and how markers are better than crayons, he came screaming from his room.
The conversation about colors and all the sweetness of preschool speak continues with a background... no, alongside... the extreme anger, frustration, and just plain intensity that is Ryan's day today.
Occasionally, I get up and calmly as I can remind him to come speak to me in words. I try to ignore the screaming. I try not to reward the screaming.
But I just. want. to. cry.
I invite him to color with us.
I'm sure I've made mistakes in handling these things. I'm sure there are better ways, better approaches. But I don't know what to do other than be calm. Remind him how to communicate.
In words. Speaking, no screaming.
About ten minutes ago, he was able to calm. He's sitting in front of me, writing and drawing on his marker board. Number after number, he writes... no, draws... the letters. Then he holds the pen in front of his eye, shaking it up and down, and flapping his hands a bit. Then erase. Then another number.
I have no idea what this morning has been about. I can make hypotheses, drawing from the things I know to be true about him and clinical things taught by study of his diagnosis.
But none of those things fix it.
I see so often, and repost often, cute little quips decorated with colorful puzzle pieces that state things about autism, and I generally agree with what I post. But autism isn't all cute puzzle pieces. It really isn't cute at all.
RYAN is cute. He's adorable. These behaviors and navigating life with them? Not cute.
Watching him struggle? Not adorable.
Seeing him pummel himself with his own fists? Not colorful.
His chest after a day like today? Colorful, but definitely not cute.
Balancing the sound of happy childhood tunes and BLASTING SCREAMO? Not cute.
When we go out of the house, we look cute most of the time. I mean, the kids... they're so easy on the eyes. And often, we look happy, mostly because we are a joyful type. But on these days, behind the closed doors, I often wonder who sees? Who knows how hard this really is? Am I just whining, should I just suck it up, cupcake? Can I?
Not really. And the days, they multiply... but this time in the trenches, as my to-do list waits, pristine and almost unused... am I accomplishing anything? Am I doing the right thing? Is it really this hard? Does anyone see our tears or feel our pain? We keep going, we hold to the things we know to be right, and so often it just doesn't seem to work. Sometimes it's just like the movie Groundhog Day... over and over and over and over again, the same frustrating things.
The only thing that helps me get a breath today?
You have kept count of my tossings; put my tears in your bottle. Are they not in your book? Psalm 56:8
That's all I have on days like today.
And that's a lot.
Thanks be to God.